April 11th/12th
We got to Edmonton about 11:00. Texted everyone that we made it as everyone was worried, and went straight to the Pediatric Ward. Well the Stollery Hospital is huge and the Children's unit is nearly the entire West side of the 4th level. and it's divided in different "categories". We searched every wing of the Pediatric Ward, asking everyone we seen where Erica Aschenbrener from Saskatchewan was. At 11:30 at night there aren't too many workers walking around randomly to ask. Finally one of the nurses told us to go through a hidden corridor to another wing (which was the cardiac wing of the children's ward).
It must have been around 12:00 am when we made it to the cardiac ward, only to find out that Erica wasn't there. They told us that we had a very sick little girl and that she was transfered right away to the Cardiac Intensive Care Unit on the 3rd floor, about 10 minutes ago.
As we've been here before we knew that this wasn't something that we wanted to hear. The only reason for Children to go to the intensive care unit is they just had a surgery, or they are going to have a surgery and are on medical assistance, and well Erica, as we left her was in neither "category". We knew she needed help and was initially confused as to why she'd be in the ped unit instead of a intensive care unit, but we weren't expecting things to change so quickly. The nurses on the Cardiac Pediatric Unit told us that they don't understand why they (the EMS team) would have brought her to them in the first place, considering her condition and the state that she was in, and seemed to be very distraught about it.
Once we arrived at the Cardiac Intensive Care Unit, we called in like any other time we visited this unit, and mentioned that we are Erica Aschenbrener's parents, that we were told that she was transfered here, and would like to come in to see her. The lady had told us to wait out side and a nurse will be out to see us shortly. This never happens and right away my heart fell to my stomach. When this happens it isn't good news at all. They always let you in right away and the only time you have to wait outside is if a procedure is going on inside, and not around your child's side, and the only time the tell you that someone will be out to see you is if that child having a procedure done is your child. At this point we are both exhausted by lack of sleep and all the emotional up's and down, and now completely frightened as to what is happening or about to happen.
No sooner than getting off the entrance phone to get in a nurse come out and for the second time in 10 mins says to us "you have a very sick little girl", and takes us in side and right around the corner into a small room with some chairs which kleenexes and garbage cans beside each chair and a phone, and says to us "your daughters nurse will come in and explain everything shortly".
We sit and wait and hours pass. No one is coming in and we are getting even more scared by each passing minute. No one told us anything, except to sit and wait and that we have one very sick little girl. Which we already knew as we would have made the decision to come if we hadn't known. We've never been in this room, but have seen parents come out with devastated looks on their ghosted out, red eye swollen faces, which indicated that they've been weeping for a while as a result of devastating news.
It's been so long in this tiny room with no one else entering it. We were about to go out thinking because of it taking so long that we've been forgotten.
Then someone enters, Erica's Intensivist (Dr.) and one of her nurses, and our world shatters.....
Thursday 12 April 2012
Wednesday 11 April 2012
Back to Edmonton
We got to the hospital this morning and didn't have a good night. She hadn't slept much and was getting very irritated again. They up'ed her oxygen to 3L and by 9am it was at 5L. (nasal prongs "cannula") She was still not doing well and was working extremely hard with a heart rate of 180-190's + , and fast and heavy breathing with massive in-drawing of 80-90 breaths per min, she was de-stating the whole morning.
The RT's came in and had put her back on a mask (different one the before) and raised the o2 levels to 75% (the set up is easier to see and change the settings of the level of o2) Her heart rate has come down a bit with this but not much it's around 150-160's, but her breathing still remains in the high 80's and 90's. Her o2 saturation fluctuates a lot now any where between 92%- 100% and it's now 12:00. They also put Erica's feeds back up so she is back on 18 mils/hr continuous.
The Intensivist came in around 3:00 and said that they had spoken with Dr. Rebekya in Edmonton, and he wants her in Edmonton asap. He wants to do an angio-cath (which with her pressures right now is extremely dangerous, everyone in sask had said that it any other procedures that were needed or wanted to be done would have to be done now in Edmonton as Saskatchewan didn't feel comfortable doing anything more as the risks are too great and the chances of something going very wrong have better odds then things going right.) The CT scan didn't give Dr. Rebekya enough information to make a solid decision on... Meaning there might still be the slightest bit of hope left yet to save our little angel.
So off to Edmonton we went. We kissed Erica good-bye and wished her yet another safe flight. We called our parents and told them all what was going on. We made it to the Alberta boarder around 7 pm, and called Saskatoon as we hadn't received a call yet from them notifying us that she had left and as we were leaving the transfer paper's were being written up, this was at 3:00pm. The had told us that she was to leave at 7:30, and should be in Edmonton around 9:30. So we grabbed a sub, stopped at Walmart real quick to grab some blankets as we weren't sure if we were going to be crashing in the van for the night, as we weren't able to get into the Ronald McDonald House right away, and were off again.
Erica is to go to the Children's Cardiac Ward on Level 4.
The RT's came in and had put her back on a mask (different one the before) and raised the o2 levels to 75% (the set up is easier to see and change the settings of the level of o2) Her heart rate has come down a bit with this but not much it's around 150-160's, but her breathing still remains in the high 80's and 90's. Her o2 saturation fluctuates a lot now any where between 92%- 100% and it's now 12:00. They also put Erica's feeds back up so she is back on 18 mils/hr continuous.
The Intensivist came in around 3:00 and said that they had spoken with Dr. Rebekya in Edmonton, and he wants her in Edmonton asap. He wants to do an angio-cath (which with her pressures right now is extremely dangerous, everyone in sask had said that it any other procedures that were needed or wanted to be done would have to be done now in Edmonton as Saskatchewan didn't feel comfortable doing anything more as the risks are too great and the chances of something going very wrong have better odds then things going right.) The CT scan didn't give Dr. Rebekya enough information to make a solid decision on... Meaning there might still be the slightest bit of hope left yet to save our little angel.
So off to Edmonton we went. We kissed Erica good-bye and wished her yet another safe flight. We called our parents and told them all what was going on. We made it to the Alberta boarder around 7 pm, and called Saskatoon as we hadn't received a call yet from them notifying us that she had left and as we were leaving the transfer paper's were being written up, this was at 3:00pm. The had told us that she was to leave at 7:30, and should be in Edmonton around 9:30. So we grabbed a sub, stopped at Walmart real quick to grab some blankets as we weren't sure if we were going to be crashing in the van for the night, as we weren't able to get into the Ronald McDonald House right away, and were off again.
Erica is to go to the Children's Cardiac Ward on Level 4.
Tuesday 10 April 2012
Cardiologist Western Meeting
April 10
We got a call this morning, as Erica had another Big "spell". They were having a hard time settling her and getting her stats up. They did a blood gas and her o2 levels were in the low 60's. They admitted Erica into the PICU and had her on 70% (10L) of o2 by mask. She was fighting real hard to breath. We were finally able to get her down to 1.5 L and back on nasal canulas, and by late afternoon she was looking much better.
We decided to try and get a priest in to baptize her, and around 2:30 pm Father Rheil came in and baptized Erica. At this time they were also suppose to talk about Erica's case with the Western Cardiologists. So it was a very nerve wreaking time.
Around 4 pm Dr. Robertson came in with a devistating look on his face. Apparently Dr. Rebekya didn't get the CT disk in time to view, so her case wasn't reviewed. He was quite mad and said he was going to call Dr. Rebekya tonight and tell him to review her files.
Uncle Jon came in again and spent the evening with us. Erica finally woke up and interacted with us until midnight, when she fell asleep.
We got a call this morning, as Erica had another Big "spell". They were having a hard time settling her and getting her stats up. They did a blood gas and her o2 levels were in the low 60's. They admitted Erica into the PICU and had her on 70% (10L) of o2 by mask. She was fighting real hard to breath. We were finally able to get her down to 1.5 L and back on nasal canulas, and by late afternoon she was looking much better.
We decided to try and get a priest in to baptize her, and around 2:30 pm Father Rheil came in and baptized Erica. At this time they were also suppose to talk about Erica's case with the Western Cardiologists. So it was a very nerve wreaking time.
Around 4 pm Dr. Robertson came in with a devistating look on his face. Apparently Dr. Rebekya didn't get the CT disk in time to view, so her case wasn't reviewed. He was quite mad and said he was going to call Dr. Rebekya tonight and tell him to review her files.
Uncle Jon came in again and spent the evening with us. Erica finally woke up and interacted with us until midnight, when she fell asleep.
Monday 9 April 2012
Waiting
April 6th
We meet with Dr. Robertson today who at first didn't recognize us until we mentioned that we first meet in the NICU back in January. He hadn't looked at the reports from the CT or echo's but took a good listen and looked at her and with a confused look on his face said "she looks good... she's beautiful!" He repeated this the entire visit. He told us that he's on call all weekend. We also spoke with Dr. Bodani (Jr.) She was very understanding of the fact of what we that was going on with her and her temp spike and she fully agreed with us. We seen her a few times through out the day and she agreed to get us out of isolation as soon as the swabs come back.
Well, Erica had a cranky day until about 6 pm when she finally fell asleep she tossed and turned until about 7:30 and the then of course her med's were due at 8:30, so she was awoken with the cold scalp i.v. med's. So we told the nurse to just do her vital's and assessment now as she's half awake now instead of coming back in an hour and bugging her again. This way she could sleep a good bit of the night.
Erica's stat today were
SPO2 (oxygen saturation) - 1.75L/min gave 95-100% saturation
Resp's - 23-70
Heart rate - 120-180
weight - 4.34kgs (9lbs 9oz)
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April 7th
Erica is still in isolation only due to the fact that they LOST her swabs (This seems to be a regular occurrence with Erica's swabs). This happened in the NICU the last time we were here in Saskatoon as well. They apparently didn't make it down to the lab. So they re-did the swabs and hopefully we'll get back into regular ped's by tomorrow.
Erica had a "fit" this early morning according to the nurses. They suctioned her nose out. (We told them not to as she hates it and then we end up with her "spells" (fast heart rate/breathing and de-stats /looses her o2) So they gave her some tylenol but still they needed to up her o2. Well the nurse left and I looked at the oxygen setting and seen it was cranked to 2.25L/min! Her gut was so extremely large when we got here, it looked as though someone took the air tank and pumped her up. She wasn't needing the 2.25L/min of oxygen you could tell as her stats were great! so the extra oxygen we figure was going straight into her gut! So I turned it down to 2L and she was still doing good. Then Dr. Robertson came in to check on Erica, as she was working quite a bit this morning (5 am ) So I asked him if her quite massive blown-up tummy was due to the oxygen that she wasn't using was being blown straight into her tummy. He figured it could more then likely cause it as it's all connected. So he turned her o2 down to 1L and her stats were still great (hadn't changed) Then he said that some of the nurses here get a little excited when it comes to stats and o2 levels, and just crank it up. He also lowered Erica's o2 levels to be anything greater then 92%.
At 1:00 Erica's nurse Carolyn came in to give Erica her oral Lasix, do vitals and change her bum. Erica started gagging shortly after the oral lasix and started getting pale. So she right away cranked up Erica's o2 again back up to 2L and then started fettling around with her stat probe, which we've asked countless times to get changed to the neonatal probe as it fits her better and gets a better reading from it. She replied to me "No it's not the probe they're reliable..." Little does she know we've fought with the probes before and every time an infant probe was placed on her the less accurate it has been, we've always switched it back to the neonatal probes. and we've been doing this for 5 months already!
At 3:00 Erica was finally turned down to 1.5 L and is stating at 98-100% again with resp's between 30-70 and a heart rate of 115-122. She's asleep again and slept about 9/10 of the day today!
Dr. Robertson and Pharis both told us that if she needed any other tests done that she'd be sent to Edmonton for them because they didn't feel safe enough to do any other tests on her with her pressures so high that if she needed emergency life support they are better equipped at it in Edmonton as they come by these type of situations (generally speaking) more often then Saskatoon.
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April 8th
Today was a pretty uneventful day. We made it through the entire day without having to go up on oxygen. Erica even had Uncle Jon and Uncle Gerry come to visit. Erica stayed awake even for the whole afternoon 3-930. At 9 the nurse came in to do her assessment and give med's. However she was unable to flush Erica's scalp I.V. which freaked us out a bit as Erica first off hates getting I.V. med's and second if it (I.V.) didn't work she'd get tortured with getting a new i.v site. So the nurse grabbed the charge nurse who was a wonderful nurse and got it working again. Thankfully!
It was quite the afternoon in the hospital today as there was a bunch of arguing between a physiotherapist which comes down to do chest physio on our neighbor girl (which to watch if you didn't know what was happening you'd think he was beating the child.) and a nurse who said they worked 16 hours a day and didn't have time to do the chest physio, not that they didn't know how to, but that they didn't have time to. Mean while they lounged around talking about their vacations, when there next one is, and which nail salon was the best to go to all day long was ok to do, The physiotherapist was quite angry to come down and do it while he could be up-stairs working on his other patients as the nurses down here were quite capable to do what he was doing. It was all quite comical! Mean while, while all this was happening our other neighbor boy was screaming, and they didn't come to check on him for the longest time. Finally they came in gave him his soother, and left. They his parents came back and the nurse told his parents that the kids was good no crying, just resting the whole while.
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April 9th
Erica's o2 was up again this morning 1.9L/min The nurse said she was freaking out because she lost her soother (however she's never freaked out because she's lost her soother, she really didn't care to have her soother) she also said that they had to suction her out. With the previous way we seen the one nurse lie to his parents the other day I am sure we aren't being told the truth.
Erica did have another spell however. She was awake and playing and it was time for vitals just as she was trying to fall asleep. She first started to cry and then got really stuffy, so the nurse suctioned her nose which she got a lot of boogers, but it in turn made her even more upset and raised her heart rate to 200 and yet again turned blue/extremely dusky. So we up'ed her o2 from 1.5 (I had turned it down) to 2L It took her quite a while to settle down, and a few hours later she was still at 2L and her stats sat around 150-160 for her heart rate, 97% oxygen saturation, and 60-80 for her resp's. All while at rest (sleeping) Her last swab still has yet to come back, and they got an admition today (our new neighbor is a 1 year old boy named Ozzy)
We meet with Dr. Robertson today who at first didn't recognize us until we mentioned that we first meet in the NICU back in January. He hadn't looked at the reports from the CT or echo's but took a good listen and looked at her and with a confused look on his face said "she looks good... she's beautiful!" He repeated this the entire visit. He told us that he's on call all weekend. We also spoke with Dr. Bodani (Jr.) She was very understanding of the fact of what we that was going on with her and her temp spike and she fully agreed with us. We seen her a few times through out the day and she agreed to get us out of isolation as soon as the swabs come back.
Well, Erica had a cranky day until about 6 pm when she finally fell asleep she tossed and turned until about 7:30 and the then of course her med's were due at 8:30, so she was awoken with the cold scalp i.v. med's. So we told the nurse to just do her vital's and assessment now as she's half awake now instead of coming back in an hour and bugging her again. This way she could sleep a good bit of the night.
Erica's stat today were
SPO2 (oxygen saturation) - 1.75L/min gave 95-100% saturation
Resp's - 23-70
Heart rate - 120-180
weight - 4.34kgs (9lbs 9oz)
_________________________________________________________________________________
April 7th
Erica is still in isolation only due to the fact that they LOST her swabs (This seems to be a regular occurrence with Erica's swabs). This happened in the NICU the last time we were here in Saskatoon as well. They apparently didn't make it down to the lab. So they re-did the swabs and hopefully we'll get back into regular ped's by tomorrow.
Erica had a "fit" this early morning according to the nurses. They suctioned her nose out. (We told them not to as she hates it and then we end up with her "spells" (fast heart rate/breathing and de-stats /looses her o2) So they gave her some tylenol but still they needed to up her o2. Well the nurse left and I looked at the oxygen setting and seen it was cranked to 2.25L/min! Her gut was so extremely large when we got here, it looked as though someone took the air tank and pumped her up. She wasn't needing the 2.25L/min of oxygen you could tell as her stats were great! so the extra oxygen we figure was going straight into her gut! So I turned it down to 2L and she was still doing good. Then Dr. Robertson came in to check on Erica, as she was working quite a bit this morning (5 am ) So I asked him if her quite massive blown-up tummy was due to the oxygen that she wasn't using was being blown straight into her tummy. He figured it could more then likely cause it as it's all connected. So he turned her o2 down to 1L and her stats were still great (hadn't changed) Then he said that some of the nurses here get a little excited when it comes to stats and o2 levels, and just crank it up. He also lowered Erica's o2 levels to be anything greater then 92%.
At 1:00 Erica's nurse Carolyn came in to give Erica her oral Lasix, do vitals and change her bum. Erica started gagging shortly after the oral lasix and started getting pale. So she right away cranked up Erica's o2 again back up to 2L and then started fettling around with her stat probe, which we've asked countless times to get changed to the neonatal probe as it fits her better and gets a better reading from it. She replied to me "No it's not the probe they're reliable..." Little does she know we've fought with the probes before and every time an infant probe was placed on her the less accurate it has been, we've always switched it back to the neonatal probes. and we've been doing this for 5 months already!
At 3:00 Erica was finally turned down to 1.5 L and is stating at 98-100% again with resp's between 30-70 and a heart rate of 115-122. She's asleep again and slept about 9/10 of the day today!
Dr. Robertson and Pharis both told us that if she needed any other tests done that she'd be sent to Edmonton for them because they didn't feel safe enough to do any other tests on her with her pressures so high that if she needed emergency life support they are better equipped at it in Edmonton as they come by these type of situations (generally speaking) more often then Saskatoon.
_________________________________________________________________________________
April 8th
Today was a pretty uneventful day. We made it through the entire day without having to go up on oxygen. Erica even had Uncle Jon and Uncle Gerry come to visit. Erica stayed awake even for the whole afternoon 3-930. At 9 the nurse came in to do her assessment and give med's. However she was unable to flush Erica's scalp I.V. which freaked us out a bit as Erica first off hates getting I.V. med's and second if it (I.V.) didn't work she'd get tortured with getting a new i.v site. So the nurse grabbed the charge nurse who was a wonderful nurse and got it working again. Thankfully!
It was quite the afternoon in the hospital today as there was a bunch of arguing between a physiotherapist which comes down to do chest physio on our neighbor girl (which to watch if you didn't know what was happening you'd think he was beating the child.) and a nurse who said they worked 16 hours a day and didn't have time to do the chest physio, not that they didn't know how to, but that they didn't have time to. Mean while they lounged around talking about their vacations, when there next one is, and which nail salon was the best to go to all day long was ok to do, The physiotherapist was quite angry to come down and do it while he could be up-stairs working on his other patients as the nurses down here were quite capable to do what he was doing. It was all quite comical! Mean while, while all this was happening our other neighbor boy was screaming, and they didn't come to check on him for the longest time. Finally they came in gave him his soother, and left. They his parents came back and the nurse told his parents that the kids was good no crying, just resting the whole while.
_________________________________________________________________________________
April 9th
Erica's o2 was up again this morning 1.9L/min The nurse said she was freaking out because she lost her soother (however she's never freaked out because she's lost her soother, she really didn't care to have her soother) she also said that they had to suction her out. With the previous way we seen the one nurse lie to his parents the other day I am sure we aren't being told the truth.
Erica did have another spell however. She was awake and playing and it was time for vitals just as she was trying to fall asleep. She first started to cry and then got really stuffy, so the nurse suctioned her nose which she got a lot of boogers, but it in turn made her even more upset and raised her heart rate to 200 and yet again turned blue/extremely dusky. So we up'ed her o2 from 1.5 (I had turned it down) to 2L It took her quite a while to settle down, and a few hours later she was still at 2L and her stats sat around 150-160 for her heart rate, 97% oxygen saturation, and 60-80 for her resp's. All while at rest (sleeping) Her last swab still has yet to come back, and they got an admition today (our new neighbor is a 1 year old boy named Ozzy)
Thursday 5 April 2012
What do we do... Why aren't you listening
March 30th
Dave came in with me and we both spoke with Dr. Essalah this morning. He repeated the same conversation as yesterday, and said she's doing well right now, and we can more her up to 4 F (Pediatric Ward) for the duration and wait it out. I had told him no that I would much rather her stay in MPICU as she gets much better care (as in a constant watch). He agreed to keep her in MPICU as long as a bed isn't needed. We had also told him that we want to push for another surgery. I said to him
" I can't give up on her, I don't want her to suffer or be in any pain, but if she's willing to fight, I will fight too, and she's obviously willing to fight because she's been able to come down on her oxygen levels, and because of that I refuse to give up and I wont give up on her."
He again agreed to do everything they can for her and he again asked us to really make a decision as to how far we are willing to go, because "Either way it's not an easy thing, but it's easier to draw a line and don't go past it, versus going past it and then us having to come back (like life support) It's easier to say no to life support if it had to come to it versus her being on life support for so long and then us going back to shut it off.
Never once did I ever think that at 27 years I would be facing these decisions with my beautiful baby!
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March 31st - April 3rd
These past few day's Erica seemed to be getting better and better. Her feedings have been cut back from 80-85 mils every 3 hours to 12 mils continuous for 24 hours, and it seems to be helping her. Dr. Essalah had heard back from Dr. Kakadakar and he spoke with Dr. Rebekya (Erica's Surgeon), who wants a CT angio done asap, from there he will be able to determine how bad Erica's veins are and if he can fix them once again. So as soon as we can get a bed in Saskatoon in the PICU we will be on our way. So in the mean time we spent every day with Erica, and all our Family came in to see her. Finally On April 3rd Dr. Essalah came in am told us that they have a bed for her and we'll be leaving first thing in the morning. So we once again wished Erica good luck, told her how much we love her and wished her safe travels on her plane ride back up to Saskatoon for Second chance.
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April 4th.
Erica arrived safely in Saskatoon. Yet again it was a delayed plane ride, but it wasn't anything like the last time. She settled in once she was admitted (she was admitted into the Ward instead of the PICU because the PICU was full) Meet with Dr. Pharis this evening and He said that they'll do the CT tomorrow.
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April 5th
Today Erica is Erica's CT angio and Echo. Because she needed to be sedated for the CT, they needed to get an i.v in. Of course they wanted it in her arm so the i.v. would be arterial. But they've never been able to get arterial lines in. Even with her surgery they needed to cut it in. Of course the i.v that was placed in Regina was then no good to them as it was in her foot, and they wanted a 24 gauge in her arm and no other location or size gauge. Well they tried 3 times before we said enough, she needs a good long break as she was getting very worked up, and her heart rate was increasing into the 180's + along with high heavy resp's. We knew that they wouldn't get a 24 gauge into her arm as it has never worked before, and we tried explaining that to them, the only thing they would say to us is that that's what needs to be in otherwise there wont be a CT. Finally Marie (Cardiology Nurse/Coordinator) along with Dr. Tyrell went down to the CT lab and talked to the tech's and convinced them on a scalp i.v, at 1:00 the PICU nurse was back in and got the scalp i.v in place.
Thankfully it worked as they said before, this was our last chance as CT wouldn't budge on the i.v and No i.v means No CT, No CT means No report or hope to the Cardiac Surgeons in Edmonton, to place a decision on the option/possibility of another surgery.
1:20 came and we went down to get the echo which we (Dave and I) thought was weird and got worried that she wouldn't get the CT done as it was booked for 1:30. Guess there was a mix up with communication again as CT was in-fact booked for 1:30, however Erica still hadn't received the Chloral which was needed to be given 20 min prior to the CT. So Marie yet again got things going again, as we cannot not do the CT. So they gave Erica the Chloral which they only gave her 1/2 the dose (100 cc instead of 200 cc) as she was so played out from the morning, we were sure she would've slept through anything without any medications.
The Echo went well and we were explained a lot about the visualizations of the echo that have never been fully explained before. Once she switch to the angle below the ribcage for the view of the veins/pressures and a better picture of her working heart the room became deathly quiet. Our questions were no longer answered.... Especially the question on her pressures and how well her heart is functioning.
Once she was finished with the echo we went straight to CT, it wasn't that long after that we were on our way back up. The CT tech was very pleased and surprised at how well the scalp i.v worked, and he said he was able to get some very good and very clear pictures. Once we were back upstairs Erica was put back onto her feeds and we are both sure she didn't get any of her med's as 4-4:30 came and Marie showed up on her way out for the day to see how Erica was doing and of course she was still sleeping. She had told us that she was going to drop off the disk at purolator on her way home as they missed the deadline for it to go out this afternoon with the rest of the hospital stuff.
6-6:30 came and Erica woke up very unsettled and not feeling well. She started to breath very rapidly (84-90+ bpm) and in-drawing badly. To the point her whole body would move with each breath. Her heart started to race again and she started getting very hot. Her temp was at 38.4 and so the Dr. on-call came in she got another x-ray, and then we were told they would put us into a private room with a window so we can have some quiet family time, it would be good for us but especially good for her. So we said ok then they said ok well room 7 is open and ready for them. Well, we got everything ready to go and headed to our "new" room, which was definitely not where we were told we were going!.... They took us to isolation! Into a very tiny, no window dungeon cube room, all because of a fever that was more then likely due to the dye that was used in the CT (as every time she's had the dye she spiked a fever that will last not even 12 hours. and this is the only time she's gotten fevers). So they then did more blood-work which in turn made her more upset and right after we finally got her settled and then took some more swabs. Erica was on 0.9 L/min of oxygen as she was off oxygen for a little while for the move over to the "new room". At 10:00pm the Dr. came in to check on her, and her fever had already come down to 37.1 and her breathing was a bit better, however her heart rate was still on the higher side but had still come down a lot from before. Her lasix and antibiotics were changed to i.v, and they also changed her antibiotics to a more wide spread lung bacteria antibiotic as they were noticing no changes on her x-rays for the better still we've been admitted in March. She apologized for the room and promised that we would go back into Regular Ped's as soon as her blood-work and swabs cleared. The blood-work came back clear (which we new it was going to) but we had to wait until tomorrow for the swab results.
Dave came in with me and we both spoke with Dr. Essalah this morning. He repeated the same conversation as yesterday, and said she's doing well right now, and we can more her up to 4 F (Pediatric Ward) for the duration and wait it out. I had told him no that I would much rather her stay in MPICU as she gets much better care (as in a constant watch). He agreed to keep her in MPICU as long as a bed isn't needed. We had also told him that we want to push for another surgery. I said to him
" I can't give up on her, I don't want her to suffer or be in any pain, but if she's willing to fight, I will fight too, and she's obviously willing to fight because she's been able to come down on her oxygen levels, and because of that I refuse to give up and I wont give up on her."
He again agreed to do everything they can for her and he again asked us to really make a decision as to how far we are willing to go, because "Either way it's not an easy thing, but it's easier to draw a line and don't go past it, versus going past it and then us having to come back (like life support) It's easier to say no to life support if it had to come to it versus her being on life support for so long and then us going back to shut it off.
Never once did I ever think that at 27 years I would be facing these decisions with my beautiful baby!
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March 31st - April 3rd
These past few day's Erica seemed to be getting better and better. Her feedings have been cut back from 80-85 mils every 3 hours to 12 mils continuous for 24 hours, and it seems to be helping her. Dr. Essalah had heard back from Dr. Kakadakar and he spoke with Dr. Rebekya (Erica's Surgeon), who wants a CT angio done asap, from there he will be able to determine how bad Erica's veins are and if he can fix them once again. So as soon as we can get a bed in Saskatoon in the PICU we will be on our way. So in the mean time we spent every day with Erica, and all our Family came in to see her. Finally On April 3rd Dr. Essalah came in am told us that they have a bed for her and we'll be leaving first thing in the morning. So we once again wished Erica good luck, told her how much we love her and wished her safe travels on her plane ride back up to Saskatoon for Second chance.
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April 4th.
Erica arrived safely in Saskatoon. Yet again it was a delayed plane ride, but it wasn't anything like the last time. She settled in once she was admitted (she was admitted into the Ward instead of the PICU because the PICU was full) Meet with Dr. Pharis this evening and He said that they'll do the CT tomorrow.
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April 5th
Today Erica is Erica's CT angio and Echo. Because she needed to be sedated for the CT, they needed to get an i.v in. Of course they wanted it in her arm so the i.v. would be arterial. But they've never been able to get arterial lines in. Even with her surgery they needed to cut it in. Of course the i.v that was placed in Regina was then no good to them as it was in her foot, and they wanted a 24 gauge in her arm and no other location or size gauge. Well they tried 3 times before we said enough, she needs a good long break as she was getting very worked up, and her heart rate was increasing into the 180's + along with high heavy resp's. We knew that they wouldn't get a 24 gauge into her arm as it has never worked before, and we tried explaining that to them, the only thing they would say to us is that that's what needs to be in otherwise there wont be a CT. Finally Marie (Cardiology Nurse/Coordinator) along with Dr. Tyrell went down to the CT lab and talked to the tech's and convinced them on a scalp i.v, at 1:00 the PICU nurse was back in and got the scalp i.v in place.
Thankfully it worked as they said before, this was our last chance as CT wouldn't budge on the i.v and No i.v means No CT, No CT means No report or hope to the Cardiac Surgeons in Edmonton, to place a decision on the option/possibility of another surgery.
1:20 came and we went down to get the echo which we (Dave and I) thought was weird and got worried that she wouldn't get the CT done as it was booked for 1:30. Guess there was a mix up with communication again as CT was in-fact booked for 1:30, however Erica still hadn't received the Chloral which was needed to be given 20 min prior to the CT. So Marie yet again got things going again, as we cannot not do the CT. So they gave Erica the Chloral which they only gave her 1/2 the dose (100 cc instead of 200 cc) as she was so played out from the morning, we were sure she would've slept through anything without any medications.
The Echo went well and we were explained a lot about the visualizations of the echo that have never been fully explained before. Once she switch to the angle below the ribcage for the view of the veins/pressures and a better picture of her working heart the room became deathly quiet. Our questions were no longer answered.... Especially the question on her pressures and how well her heart is functioning.
Once she was finished with the echo we went straight to CT, it wasn't that long after that we were on our way back up. The CT tech was very pleased and surprised at how well the scalp i.v worked, and he said he was able to get some very good and very clear pictures. Once we were back upstairs Erica was put back onto her feeds and we are both sure she didn't get any of her med's as 4-4:30 came and Marie showed up on her way out for the day to see how Erica was doing and of course she was still sleeping. She had told us that she was going to drop off the disk at purolator on her way home as they missed the deadline for it to go out this afternoon with the rest of the hospital stuff.
6-6:30 came and Erica woke up very unsettled and not feeling well. She started to breath very rapidly (84-90+ bpm) and in-drawing badly. To the point her whole body would move with each breath. Her heart started to race again and she started getting very hot. Her temp was at 38.4 and so the Dr. on-call came in she got another x-ray, and then we were told they would put us into a private room with a window so we can have some quiet family time, it would be good for us but especially good for her. So we said ok then they said ok well room 7 is open and ready for them. Well, we got everything ready to go and headed to our "new" room, which was definitely not where we were told we were going!.... They took us to isolation! Into a very tiny, no window dungeon cube room, all because of a fever that was more then likely due to the dye that was used in the CT (as every time she's had the dye she spiked a fever that will last not even 12 hours. and this is the only time she's gotten fevers). So they then did more blood-work which in turn made her more upset and right after we finally got her settled and then took some more swabs. Erica was on 0.9 L/min of oxygen as she was off oxygen for a little while for the move over to the "new room". At 10:00pm the Dr. came in to check on her, and her fever had already come down to 37.1 and her breathing was a bit better, however her heart rate was still on the higher side but had still come down a lot from before. Her lasix and antibiotics were changed to i.v, and they also changed her antibiotics to a more wide spread lung bacteria antibiotic as they were noticing no changes on her x-rays for the better still we've been admitted in March. She apologized for the room and promised that we would go back into Regular Ped's as soon as her blood-work and swabs cleared. The blood-work came back clear (which we new it was going to) but we had to wait until tomorrow for the swab results.
Friday 30 March 2012
What are you trying to tell me
Today I went to the hospital by myself. When I got to the hospital, Erica was sleeping but seemed to be doing well. They were able to get her o2 down to .7 L/min
Dr. Essalah came in and asked how I was doing. I replied with "She seems to be doing good, so I think I am going pretty good." He walked out, ( I looked at the nurse confused), he grabbed a chair and sat down next to me and said " I spoke with Dr. Kakadakar and I am sorry but it's not good news. The stenosis is back even more then 2 weeks ago and he's certain it's in her lungs." He told me that it's now in all four of her veins (the forth vein is only slightly stenosis'ed) and that he's so very sorry and he doesn't want to say this but "there's nothing more we can do for her, I very sorry"
I understood but needed to ask those dreadful words. So I ask the one question no mother or parent ever wants to ask or hear the answer to....
So what are you tell me?... Is she dying?... Is she going to die?
He replied "I am so sorry, but yes she is!"
Everything was spinning so fast I didn't know what to do, all I knew was that I needed Dave and he needed to know, he needed to be here!
Dr. Essalah came in and asked how I was doing. I replied with "She seems to be doing good, so I think I am going pretty good." He walked out, ( I looked at the nurse confused), he grabbed a chair and sat down next to me and said " I spoke with Dr. Kakadakar and I am sorry but it's not good news. The stenosis is back even more then 2 weeks ago and he's certain it's in her lungs." He told me that it's now in all four of her veins (the forth vein is only slightly stenosis'ed) and that he's so very sorry and he doesn't want to say this but "there's nothing more we can do for her, I very sorry"
I understood but needed to ask those dreadful words. So I ask the one question no mother or parent ever wants to ask or hear the answer to....
So what are you tell me?... Is she dying?... Is she going to die?
He replied "I am so sorry, but yes she is!"
Everything was spinning so fast I didn't know what to do, all I knew was that I needed Dave and he needed to know, he needed to be here!
Tuesday 27 March 2012
Another bad phone call
March 27th
We got call this morning, as Erica had a horrible night/morning, and was transfered into the MPICU at 3:00am. She wasn't doing well at all. Dr. Essalah was called in at 2:00 am and he said she looked so bad and so did her blood gases (o2 stats of 16), they couldn't get her stats up, he said that he was temped to intubate her again. She eventually "passed out". She had a rough day with multiple episodes of her "spells" and her o2 was increased again to 2 L (She was able to be weaned down to 1L) Towards the end of the day she was able to be weaned down on her o2, and started to turn around again.
March 28th
Erica had a pretty good day today, Her o2 is now at 1L. and she only had 2 little spells. She was playing a bit today was well.
We got call this morning, as Erica had a horrible night/morning, and was transfered into the MPICU at 3:00am. She wasn't doing well at all. Dr. Essalah was called in at 2:00 am and he said she looked so bad and so did her blood gases (o2 stats of 16), they couldn't get her stats up, he said that he was temped to intubate her again. She eventually "passed out". She had a rough day with multiple episodes of her "spells" and her o2 was increased again to 2 L (She was able to be weaned down to 1L) Towards the end of the day she was able to be weaned down on her o2, and started to turn around again.
March 28th
Erica had a pretty good day today, Her o2 is now at 1L. and she only had 2 little spells. She was playing a bit today was well.
Monday 26 March 2012
Another Bad Spell
Monday March 26th
For the past few weeks Erica seemed to be having these "Spells" were she would have these pain cries, and be unconsolable, and with these spells her breathing would get rapid and her heart rate would jump up, and she would need her oxygen increase as her stats would drop. We couldn't do anything but try to comfort her and she would basically pass out because she would play herself right out! A completely helpless feeling on my behalf. You feel useless that you can't comfort her, or take what ever was causing her discomfort away, and knowing that she had health issues, I couldn't help but think the worse. With everything that's been going on all her "symptoms" were the same as before she had her surgery, and I could help that with each passing day that it seems to be getting worse and worse that what was going on wasn't good! Every time she was admitted or see the Dr.'s in the ER it was always, she's fine she's just got a virus that will have to run through, there was no dr.'s that said ok to put your mind at ease we'll do an echo or x-ray. I was starting to think she may be colicky or be lactose intolerant. Or something else much worse was going on. I couldn't help but think that these "spells" were mini heart attacks of some sort, that it wasn't "just a virus"
Well last night Erica was having a hard time keeping her stats up and her heart rate down. She's been in-drawing more and more with each passing day. Throughout the night I would continue on turning up her oxygen as she would loss saturation and her heart rate was starting to increase into the 150-160 beats per min. While sleeping.
First thing in the morning Erica was going worse and then she had another "spell" She started to cry painfully and her heart rate increase to the 200's and her oxygen saturation went into the 60's. We cranked her up to 3 L. As I was trying to calm Erica down a bit Dave was getting her car seat and stuff ready as she needed to go to the hospital however we didn't know how we were going to take her as our portable o2 tanks wouldn't go as high as 3 L it would only go to 2 L. I was finally able to settle Erica a bit to get her o2 down to 2 L and we took off. I had called Dr. Essalah's office and informed him of what was going on and he was meeting us in Emerge. Once we got there Erica had calmed down quite a bit, she was doing so well we thought we would be sent back home. Dr. Essalah took a look at her and she got more blood work and swabs for infection and such, and he wanted an X-ray done as he notice a decrease in her left lung. Once we got the X-ray back it had shown that Erica had Pnumonia, so she was admitted to the Pediatric Ward (4F) and was started on I.V medication for the phenomena and her lasix was increased.
For the past few weeks Erica seemed to be having these "Spells" were she would have these pain cries, and be unconsolable, and with these spells her breathing would get rapid and her heart rate would jump up, and she would need her oxygen increase as her stats would drop. We couldn't do anything but try to comfort her and she would basically pass out because she would play herself right out! A completely helpless feeling on my behalf. You feel useless that you can't comfort her, or take what ever was causing her discomfort away, and knowing that she had health issues, I couldn't help but think the worse. With everything that's been going on all her "symptoms" were the same as before she had her surgery, and I could help that with each passing day that it seems to be getting worse and worse that what was going on wasn't good! Every time she was admitted or see the Dr.'s in the ER it was always, she's fine she's just got a virus that will have to run through, there was no dr.'s that said ok to put your mind at ease we'll do an echo or x-ray. I was starting to think she may be colicky or be lactose intolerant. Or something else much worse was going on. I couldn't help but think that these "spells" were mini heart attacks of some sort, that it wasn't "just a virus"
Well last night Erica was having a hard time keeping her stats up and her heart rate down. She's been in-drawing more and more with each passing day. Throughout the night I would continue on turning up her oxygen as she would loss saturation and her heart rate was starting to increase into the 150-160 beats per min. While sleeping.
First thing in the morning Erica was going worse and then she had another "spell" She started to cry painfully and her heart rate increase to the 200's and her oxygen saturation went into the 60's. We cranked her up to 3 L. As I was trying to calm Erica down a bit Dave was getting her car seat and stuff ready as she needed to go to the hospital however we didn't know how we were going to take her as our portable o2 tanks wouldn't go as high as 3 L it would only go to 2 L. I was finally able to settle Erica a bit to get her o2 down to 2 L and we took off. I had called Dr. Essalah's office and informed him of what was going on and he was meeting us in Emerge. Once we got there Erica had calmed down quite a bit, she was doing so well we thought we would be sent back home. Dr. Essalah took a look at her and she got more blood work and swabs for infection and such, and he wanted an X-ray done as he notice a decrease in her left lung. Once we got the X-ray back it had shown that Erica had Pnumonia, so she was admitted to the Pediatric Ward (4F) and was started on I.V medication for the phenomena and her lasix was increased.
Saturday 3 March 2012
Not Growing as hoped
Our first couple weeks home, was great! However Erica started to slowly refuse to eat her bottle. We have been going into Pediactric Out-patients twice a week for blood pressure checks, oxygen saturation check, and weight checks. If Erica couldn't continue on gaining weight nicely she would have to be re-admitted to the hospital, so weight gain was extremely important. However within nearly two weeks Erica hadn't gained anything.
Monday 20 February 2012
Home Sweet Home At Last...
Just in Time for Family Day!
It's been 117 days since our little angel's been born, with lots of heartache, tears, joy, and every other possible emotion running through a persons body we got to do what we were starting to feel like would never come and we brought our Sweet Pea home!
Emily, Brayden and the rest of the family had no idea we were coming home. Erica had been off oxygen during the day for a few days now and only on (0.025 L/min "considered just a whiff") at night, but because we hadn't be able to get the oxygen companies out yet to set up our home oxygen we had to take her home on nasal prongs, for safety. Once we arrived at home we decided to call grandma and grandpa over along with Emily and Brayden. They were having supper and uncle Mike and Aunty Cassie were over there as well... So our surprise was not so much a surprise anymore but still a very exciting moment by the entire family.
The look on Emily and Brayden's face was priceless, and Brayden asked "so can we keep baby Erica at home now" :)
Once we settled a bit and feed Erica we got her dressed up again and walked over to Grandma and Grandpa's for some more visiting.
It was a perfect day, we finally had our Family all at home! Our home was now complete!
WELCOME HOME ERICA!!!
It's been 117 days since our little angel's been born, with lots of heartache, tears, joy, and every other possible emotion running through a persons body we got to do what we were starting to feel like would never come and we brought our Sweet Pea home!
Emily, Brayden and the rest of the family had no idea we were coming home. Erica had been off oxygen during the day for a few days now and only on (0.025 L/min "considered just a whiff") at night, but because we hadn't be able to get the oxygen companies out yet to set up our home oxygen we had to take her home on nasal prongs, for safety. Once we arrived at home we decided to call grandma and grandpa over along with Emily and Brayden. They were having supper and uncle Mike and Aunty Cassie were over there as well... So our surprise was not so much a surprise anymore but still a very exciting moment by the entire family.
The look on Emily and Brayden's face was priceless, and Brayden asked "so can we keep baby Erica at home now" :)
Once we settled a bit and feed Erica we got her dressed up again and walked over to Grandma and Grandpa's for some more visiting.
It was a perfect day, we finally had our Family all at home! Our home was now complete!
WELCOME HOME ERICA!!!
Tuesday 14 February 2012
Be my Valentine!
HAPPY VALENTINE'S DAY!!!
We'll Erica had a great first week back in Regina! She's an angel! She sleeps real well (All night) and we introduced her bottle again! We needed to ask the Dr. as the nurses weren't budging with our plan that was made in Saskatoon. The poor little monkey really missed her bottle. Not sure if she even tasted it! :)
She's been eating full bottles (55 mils) all day long (every feeding) for a while now sometimes as fast as 7 mins. We of course need to try to help her pace herself which is quite adorable to watch her get frustrated because we took the bottle away to help her catch her breath! :) Way to go Sweet Pea, we are so proud of you!
Erica received loads of things for Valentines Day Emily and Brayden colored Erica some pictures, Grandma and Grandpa Aschenbrener got a bunch of heart-shaped pillows along with a stuffed teddy. Uncle Wayne brought a stuffed teddy, Grandma and Grandpa brought a pink stuffed teddy Mom and Dad bought some clothes which mom found one that had (Hunny Bunny) on it. Dad always calls me his Hunny Bunny! Erica also received a blanket from the hospital and a pink teddy with a bib and a card from an elementary student from a local Regina school!
We'll Erica had a great first week back in Regina! She's an angel! She sleeps real well (All night) and we introduced her bottle again! We needed to ask the Dr. as the nurses weren't budging with our plan that was made in Saskatoon. The poor little monkey really missed her bottle. Not sure if she even tasted it! :)
She's been eating full bottles (55 mils) all day long (every feeding) for a while now sometimes as fast as 7 mins. We of course need to try to help her pace herself which is quite adorable to watch her get frustrated because we took the bottle away to help her catch her breath! :) Way to go Sweet Pea, we are so proud of you!
Erica received loads of things for Valentines Day Emily and Brayden colored Erica some pictures, Grandma and Grandpa Aschenbrener got a bunch of heart-shaped pillows along with a stuffed teddy. Uncle Wayne brought a stuffed teddy, Grandma and Grandpa brought a pink stuffed teddy Mom and Dad bought some clothes which mom found one that had (Hunny Bunny) on it. Dad always calls me his Hunny Bunny! Erica also received a blanket from the hospital and a pink teddy with a bib and a card from an elementary student from a local Regina school!
Saturday 11 February 2012
Back in Sask
We finally arrived back in Sask! Erica was admitted into the PICU in Saskatoon, and when we arrive we were shocked to find that our little miss mouse had the C-PAP on again. Apparently the flight was a little much and so they did an x-ray which showed that she either had a bit of a collapsed lung or a touch of pneumonia. So they treated her with some antibiotics. Within a few days she was back onto nasal prongs. By the following week Erica was transfered into the Children's Ward in the Saskatoon hospital and on February 3rd Dr. Kakadakar came in and told us that we could go home to Regina, for the remainder of her healing. So we decided that we would go back the following day as it was already night and we all figured it was safest to go during the day. Well Saturday came and some how everyones wires got crossed and Regina had no idea we were coming so they needed to make arrangements with the ambulance. Finally on Monday February 6 we headed back to Regina!
Erica arrived safetly in Regina and was admitted to the Ped's (4F). The ladies there are wonderful!
On Feb 7th Erica weighed 3.585 kg's (7 lbs 14 1/2 oz) We were also able to wean her o2 down from 0.1L to 0.05L and her stats would stay at 100%! ( Way to go monkey!!!)
When we left Saskatoon we were to start introducing Erica her bottle on Monday so now that we are in Regina we would talk to the SLP and they told us we would have to wait until Thursday! I most certainly wasn't making Erica wait until Thursday to give her the bottle when we knew she was wanting it so bad (as per watching her suck on her soother and have the soother dips of thicken formula) So When Dr. Essalah can in I asked him if we could slowly start her bottle feedings, and he agreed! So her next bottles we are to give her pedialite in them and tomorrow morning we can start with formula. At first Erica gaged a bit and then started sucking and swallowing like a champ! :) Way to go Sweet Pea! We are so very proud of you!
Erica had also received another dose of the RSV vaccine today and I mentioned to the nurses that her 4 month immunizations were due soon. She's been kicking and playing up a storm all day! She even got Measured today and we are now at 49 cm long!
Erica has had many visitors as well. Aunty Jackie and Uncle Paul, Uncle Ron Aunty Sheri and Landin, Aunty Erin and Cole, and of course Emily and Brayden, all of Erica's Grandparents, Aunts and Uncles.
Erica arrived safetly in Regina and was admitted to the Ped's (4F). The ladies there are wonderful!
On Feb 7th Erica weighed 3.585 kg's (7 lbs 14 1/2 oz) We were also able to wean her o2 down from 0.1L to 0.05L and her stats would stay at 100%! ( Way to go monkey!!!)
When we left Saskatoon we were to start introducing Erica her bottle on Monday so now that we are in Regina we would talk to the SLP and they told us we would have to wait until Thursday! I most certainly wasn't making Erica wait until Thursday to give her the bottle when we knew she was wanting it so bad (as per watching her suck on her soother and have the soother dips of thicken formula) So When Dr. Essalah can in I asked him if we could slowly start her bottle feedings, and he agreed! So her next bottles we are to give her pedialite in them and tomorrow morning we can start with formula. At first Erica gaged a bit and then started sucking and swallowing like a champ! :) Way to go Sweet Pea! We are so very proud of you!
Erica had also received another dose of the RSV vaccine today and I mentioned to the nurses that her 4 month immunizations were due soon. She's been kicking and playing up a storm all day! She even got Measured today and we are now at 49 cm long!
Erica has had many visitors as well. Aunty Jackie and Uncle Paul, Uncle Ron Aunty Sheri and Landin, Aunty Erin and Cole, and of course Emily and Brayden, all of Erica's Grandparents, Aunts and Uncles.
Friday 27 January 2012
On the mend
Erica seems to be on the mend. They put an external pace maker on her just incase she needed it, as when you are working on the septum that devides the atriums, it could cause a disruption in either complete lose or irregular heartbeat (also known as an arythmia).
She's healing nicely, blood pressure has be stable with the help of med's, and she got weaned off the vent. Erica got her tube out on January 26th and was put onto high flow O2 without the Nitric Oxide. Erica also got one drainage tube out (the one that leads to her left lung to drain the bleeding around it).
Every day she was loosing one more cord/tube or two. Erica even got weaned down to the low flow oxygen.
By Thursday January 26th, Erica had only 3 things attached to her.
1. her nasal prongs
2. the external pace maker
3. her stat leads
Friday morning came and we made it just out side Erica's unit when our cell rang. It was Erica's nurse Jex Roy, calling to tell us that Erica was going back to Sask! We were shocked as Her open heart surgery was only on Monday and we didn't think that we would be going home this soon. Aunty Jess and Kris were also coming up today to meet Erica for the first time, so we were afraid that they wouldn't make it but they arrived just in the nick-of-time. So because there was only two people allowed in at a time Aunty Jess came in while Dave sat outside the unit with little Walker and waiting for Kris as he was parking the truck. We sat and talked to Erica for about min as we were leaving right away, we went out and then Dave and Kris went in. No sooner then them getting in to see Erica, Kris came walking out telling me to go in as the ambulance team is there and Erica is leaving now. So it was a short visit but a good one!
She's healing nicely, blood pressure has be stable with the help of med's, and she got weaned off the vent. Erica got her tube out on January 26th and was put onto high flow O2 without the Nitric Oxide. Erica also got one drainage tube out (the one that leads to her left lung to drain the bleeding around it).
Every day she was loosing one more cord/tube or two. Erica even got weaned down to the low flow oxygen.
By Thursday January 26th, Erica had only 3 things attached to her.
1. her nasal prongs
2. the external pace maker
3. her stat leads
Friday morning came and we made it just out side Erica's unit when our cell rang. It was Erica's nurse Jex Roy, calling to tell us that Erica was going back to Sask! We were shocked as Her open heart surgery was only on Monday and we didn't think that we would be going home this soon. Aunty Jess and Kris were also coming up today to meet Erica for the first time, so we were afraid that they wouldn't make it but they arrived just in the nick-of-time. So because there was only two people allowed in at a time Aunty Jess came in while Dave sat outside the unit with little Walker and waiting for Kris as he was parking the truck. We sat and talked to Erica for about min as we were leaving right away, we went out and then Dave and Kris went in. No sooner then them getting in to see Erica, Kris came walking out telling me to go in as the ambulance team is there and Erica is leaving now. So it was a short visit but a good one!
Monday 23 January 2012
SURGERY DAY!
HAPPY BIRTHDAY BRAYDEN!!!
Well it was a very early morning we got to the hospital just before 7:00 as the cardiologists would be making their rounds and we needed to sign the consent forms. Erica was second case, so we knew it was going to happen. We stayed by Erica's side the entire time until the O.R. called up for her at 12:30. The O.R. Transport team came and got her all hooked up and ready to go. This was for real this time. All sorts of emotions ran through us. What was going to happen, and will she be ok.
They allowed us to walk with her to the O.R. doors, little did we know that it was 20 steps away. They spot and let us kiss her and wish her luck. Tell her that we love her and that we'll be waiting for her to come out. She entered the O.R at 1:15 and my heart dropped.
A few hours passed and we went to the CICU/PICU (Cardiac/Pediatric Intensive Care Unit) for a "walk around the unit to see where everything was and where she'll be.
Finally at 3:30 we seen Dr. Adatia walk down the hall. He greeted us and said that the surgery is going great and that she surprised everyone in the fact that her pressures had actually dropped more then 50% of what they were! He said that they are just finishing up a few thing and then Dr. Rebekya would come out to talk to us.
Finally 4:30 came and Dr. Rebekya came out and said that everything went well and that they were able to repair everything except for the 4th fully stenosis'ed vein. They ended up reconstructing the right and left atrium's to redirect the blood flow from the right pulmonary vein. He tried to get the needle through the 4th vein but it wouldn't go, so Erica will only have 3 pulmonary veins. He was very pleased with how it turned out. He said it was going to be a little while until she come out because they have to slowly start her heart back up and wean her off the heart and lung machine.
It wasn't until 5:45 that she got wheeled past us and into her room. We weren't allowed to go in for a while, until they were able to get her settled and hooked up. So we decided we'd go have a coffee and call our mom's to let them know that surgery went well and that she's in recovery.
They tried to brace us for what she'll be like after surgery. and we'll they nailed it head on except for the one thing that we knew we never wanted so I am not mentioning it again. They said though that she will be a very sick little girl for about 3 days, she'll look like the Michelin Tire baby
Well she definitely looked like the Michelin tire baby she was so swollen if she was awake she wouldn't have been able to open her eyes. Her entire face was just round with no eye sockets or nose formation, no neck, just puff.
But she was doing very well, and we were so proud of her! Erica jumped a huge hurdle today. She's definitely not out of the woods, and anything can happen, here's praying that nothing but getting better and coming home happens now!
Well it was a very early morning we got to the hospital just before 7:00 as the cardiologists would be making their rounds and we needed to sign the consent forms. Erica was second case, so we knew it was going to happen. We stayed by Erica's side the entire time until the O.R. called up for her at 12:30. The O.R. Transport team came and got her all hooked up and ready to go. This was for real this time. All sorts of emotions ran through us. What was going to happen, and will she be ok.
They allowed us to walk with her to the O.R. doors, little did we know that it was 20 steps away. They spot and let us kiss her and wish her luck. Tell her that we love her and that we'll be waiting for her to come out. She entered the O.R at 1:15 and my heart dropped.
A few hours passed and we went to the CICU/PICU (Cardiac/Pediatric Intensive Care Unit) for a "walk around the unit to see where everything was and where she'll be.
Finally at 3:30 we seen Dr. Adatia walk down the hall. He greeted us and said that the surgery is going great and that she surprised everyone in the fact that her pressures had actually dropped more then 50% of what they were! He said that they are just finishing up a few thing and then Dr. Rebekya would come out to talk to us.
Finally 4:30 came and Dr. Rebekya came out and said that everything went well and that they were able to repair everything except for the 4th fully stenosis'ed vein. They ended up reconstructing the right and left atrium's to redirect the blood flow from the right pulmonary vein. He tried to get the needle through the 4th vein but it wouldn't go, so Erica will only have 3 pulmonary veins. He was very pleased with how it turned out. He said it was going to be a little while until she come out because they have to slowly start her heart back up and wean her off the heart and lung machine.
It wasn't until 5:45 that she got wheeled past us and into her room. We weren't allowed to go in for a while, until they were able to get her settled and hooked up. So we decided we'd go have a coffee and call our mom's to let them know that surgery went well and that she's in recovery.
They tried to brace us for what she'll be like after surgery. and we'll they nailed it head on except for the one thing that we knew we never wanted so I am not mentioning it again. They said though that she will be a very sick little girl for about 3 days, she'll look like the Michelin Tire baby
Well she definitely looked like the Michelin tire baby she was so swollen if she was awake she wouldn't have been able to open her eyes. Her entire face was just round with no eye sockets or nose formation, no neck, just puff.
But she was doing very well, and we were so proud of her! Erica jumped a huge hurdle today. She's definitely not out of the woods, and anything can happen, here's praying that nothing but getting better and coming home happens now!
Saturday 21 January 2012
Surgery has been planned...maybe
This morning on rounds we met with Dr. Rebekya again as well as Dr. Adatia who again suggested to do the full surgery, so it was decided. Erica would have the full surgery on Monday.
They had a hard time deciding as her pressures are extremely high and her PDA is very open, but the ASD isn't one large ASD but a few small ASD's and they're only allowing the blood to shunt from Left to Right instead of Right to Left. So the ASD isn't helping the decision as if it was large or at least allowing the blood to shunt from Right to Left they would be able to just staple the PDA allowing the pressures in her arteries and lungs to decrease before they do the larger more complicated Surgery.
Although they also didn't really want to do the full surgery requiring her to be on the heart and lung machine as it would raise the pressures even more. They ultimately wanted everything done but in the least riskiest manner. However because of Erica's extreme day yesterday they decided to go with doing the full surgery as soon as possible, as she was getting worse by the minute. So she will be kept sedated and paralysed over the weekend and she's getting weaned down on the NO & O2 vent. They also tried again for an arterial line but because of all her constant poking and her fluid retention they are having a hard time finding them and they ones they do find are collapsed. So they are going to try again tomorrow when she gets some more fluid off her.
Erica's been doing much better. Her oxygen is down from 65% this morning to 31% by mid afternoon.
Her peep is still up at 10 but her Nitric Oxide is down from 10 - 7. Her oxygen stats have been around 95-98% and her heart rates been around 118-130 bpm. The vents still breathing for her, which is ok as it's allowing her body and organs to really take a much needed break.
Erica also got her first manicure this morning from mom. Now she's got pretty nails for her surgery! Well more so though, so she doesn't scratch herself. Erica also got a catheter in place today as she got more Fentanyl and Rocuronium and lasics but because she was getting so much stuff to paralyse her she needed it to pee.
Today was a much better day! She looked good, some of her fluid was coming off and her colour was coming back to almost pink.
They had a hard time deciding as her pressures are extremely high and her PDA is very open, but the ASD isn't one large ASD but a few small ASD's and they're only allowing the blood to shunt from Left to Right instead of Right to Left. So the ASD isn't helping the decision as if it was large or at least allowing the blood to shunt from Right to Left they would be able to just staple the PDA allowing the pressures in her arteries and lungs to decrease before they do the larger more complicated Surgery.
Although they also didn't really want to do the full surgery requiring her to be on the heart and lung machine as it would raise the pressures even more. They ultimately wanted everything done but in the least riskiest manner. However because of Erica's extreme day yesterday they decided to go with doing the full surgery as soon as possible, as she was getting worse by the minute. So she will be kept sedated and paralysed over the weekend and she's getting weaned down on the NO & O2 vent. They also tried again for an arterial line but because of all her constant poking and her fluid retention they are having a hard time finding them and they ones they do find are collapsed. So they are going to try again tomorrow when she gets some more fluid off her.
Erica's been doing much better. Her oxygen is down from 65% this morning to 31% by mid afternoon.
Her peep is still up at 10 but her Nitric Oxide is down from 10 - 7. Her oxygen stats have been around 95-98% and her heart rates been around 118-130 bpm. The vents still breathing for her, which is ok as it's allowing her body and organs to really take a much needed break.
Erica also got her first manicure this morning from mom. Now she's got pretty nails for her surgery! Well more so though, so she doesn't scratch herself. Erica also got a catheter in place today as she got more Fentanyl and Rocuronium and lasics but because she was getting so much stuff to paralyse her she needed it to pee.
Today was a much better day! She looked good, some of her fluid was coming off and her colour was coming back to almost pink.
Friday 20 January 2012
A frightening day
We got to the hospital and it was a rough beginning of a hard day!
Erica started to get very angry, with being suctioned. She wouldn't settle so her heart rate increased, she became transparent and molted and her oxygen went down. They needed to sedate her, and it worked until and hour and a half later the sedation wore off and then she got mad again. This time her heart rate started to decrease and she also started to de-stat to 30 and below... they needed to bring her back. Once they got her back up and her oxygen levels at a good level, they put her on a constant sedation and paralyse to help keep her calm. The vent machine started to breath for her as they needed to really put her to a hard sleep.
It was the hardest and scariest thing I have ever seen or felt. She was white/Gray and complete lifeless. At one point in the morning there was 12 people around her working on her to get her stable, and all we could do was sit back and watch.
After a few short minutes of her finally being stable again, the cardiologists came in along with an echo tech and some respiratory therapists, to do a test on her with Nitric Oxide in her O2 vent to see if her veins would dilate and help her oxygen and pressures, and it worked. It was all very hard to watch. She ended up having to get another 55 mils of blood as her blood count was low.
Erica is now heavily vented at 80-100% oxygen and 30 pressure with 10 Nitric Oxide and a min Peep of 10 and a max of 29. She's also on Lipids, TNP (amino acids), Continues Heparin, Rocuronium, Fentanyl, Furosmide, Sildenafil (Viagra), and lasic's. We asked to get the jaundice shades for her because her eye's would spontaneously open slightly even thought she was heavily sedated and paralysed. Today we meet with Dr. Ian Adatia and we went through his thoughts and what the next step was. He was pretty firm on doing the full repair.
It was hard to leave, but we were exhausted and hadn't eaten all day, so we went for supper around 8:00 and came back in right away. Once we returned her colour got a lot better and her stats were looking good.
Erica started to get very angry, with being suctioned. She wouldn't settle so her heart rate increased, she became transparent and molted and her oxygen went down. They needed to sedate her, and it worked until and hour and a half later the sedation wore off and then she got mad again. This time her heart rate started to decrease and she also started to de-stat to 30 and below... they needed to bring her back. Once they got her back up and her oxygen levels at a good level, they put her on a constant sedation and paralyse to help keep her calm. The vent machine started to breath for her as they needed to really put her to a hard sleep.
It was the hardest and scariest thing I have ever seen or felt. She was white/Gray and complete lifeless. At one point in the morning there was 12 people around her working on her to get her stable, and all we could do was sit back and watch.
After a few short minutes of her finally being stable again, the cardiologists came in along with an echo tech and some respiratory therapists, to do a test on her with Nitric Oxide in her O2 vent to see if her veins would dilate and help her oxygen and pressures, and it worked. It was all very hard to watch. She ended up having to get another 55 mils of blood as her blood count was low.
Erica is now heavily vented at 80-100% oxygen and 30 pressure with 10 Nitric Oxide and a min Peep of 10 and a max of 29. She's also on Lipids, TNP (amino acids), Continues Heparin, Rocuronium, Fentanyl, Furosmide, Sildenafil (Viagra), and lasic's. We asked to get the jaundice shades for her because her eye's would spontaneously open slightly even thought she was heavily sedated and paralysed. Today we meet with Dr. Ian Adatia and we went through his thoughts and what the next step was. He was pretty firm on doing the full repair.
It was hard to leave, but we were exhausted and hadn't eaten all day, so we went for supper around 8:00 and came back in right away. Once we returned her colour got a lot better and her stats were looking good.
Wednesday 18 January 2012
More answer's
January 18th
Erica was sleepy all day today. She also had another echo done today. As the cardiologists were looking they also pointed out some key words in describing what they saw to each other. Lucky enough for me, I've studied the heart and lungs so much that I was able to understand what they were talking about.
The sole purpose of this very long echo (2+ hours), was to get confirmation on the pulmonary veins (the veins leading from her lungs into her heart carrying oxygen rich blood [there's 4 of them] of their locations and size (stenosis). It had confirmed that Erica has two veins leading into the left atrium (the right location) and 2 veins leading into the right atrium (the wrong location). One of Erica's veins is the size it should be, 2 are slightly stenosis'ed and one is very stenosis'ed letting little to no blood flow through.
A rough idea on how her veins look:
O o .
right size (1 vein) slightly stenosis 'ed (2 veins) very stenosis 'ed (4th vein)
The plan so far, unless Dr. Ian Adatia (a cardiologist from California that also has offices in Edmonton and Winnipeg and specializes in pulmonary hypertension) says otherwise, is to only do one surgery for now. This surgery would be to close the PDA with a staple and do the lung biopsy as previously discusses. They would then wait (as long as she could handle), to continue with the surgery to relocate the pulmonary veins back to the left atrium.
There was no talk of any other surgeries for her ASD, the "shelf" in her aorta, or the stenosis veins. If once they closed the PDA and realised that they needed to move the veins asap they would do so. They would much rather wait with moveing the veins because they're so small and delicate, they don't like to be touched/disturbed. Once they are bigger they will be able to work with them better, although waiting wouldn't make the veins more resiliant or tougher. They also are hoping that with closing the PDA, that it will lower the pressures, with lowering these pressures it will make it safer to put her on the heart and lung machine for the bigger surgery. Apparently when the heart and lung machine is used, the pressures raise to an unhealthy , but tolerable level, tolerable as long as the patient doesn't have high pressures to begin with. With Erica's pressures and the pressures the machine will give her it wouldn't be safe at all.
They would still like to do surgery ASAP. So it would be as early as tomorrow or friday.
Erica was sleepy all day today. She also had another echo done today. As the cardiologists were looking they also pointed out some key words in describing what they saw to each other. Lucky enough for me, I've studied the heart and lungs so much that I was able to understand what they were talking about.
The sole purpose of this very long echo (2+ hours), was to get confirmation on the pulmonary veins (the veins leading from her lungs into her heart carrying oxygen rich blood [there's 4 of them] of their locations and size (stenosis). It had confirmed that Erica has two veins leading into the left atrium (the right location) and 2 veins leading into the right atrium (the wrong location). One of Erica's veins is the size it should be, 2 are slightly stenosis'ed and one is very stenosis'ed letting little to no blood flow through.
A rough idea on how her veins look:
O o .
right size (1 vein) slightly stenosis 'ed (2 veins) very stenosis 'ed (4th vein)
The plan so far, unless Dr. Ian Adatia (a cardiologist from California that also has offices in Edmonton and Winnipeg and specializes in pulmonary hypertension) says otherwise, is to only do one surgery for now. This surgery would be to close the PDA with a staple and do the lung biopsy as previously discusses. They would then wait (as long as she could handle), to continue with the surgery to relocate the pulmonary veins back to the left atrium.
There was no talk of any other surgeries for her ASD, the "shelf" in her aorta, or the stenosis veins. If once they closed the PDA and realised that they needed to move the veins asap they would do so. They would much rather wait with moveing the veins because they're so small and delicate, they don't like to be touched/disturbed. Once they are bigger they will be able to work with them better, although waiting wouldn't make the veins more resiliant or tougher. They also are hoping that with closing the PDA, that it will lower the pressures, with lowering these pressures it will make it safer to put her on the heart and lung machine for the bigger surgery. Apparently when the heart and lung machine is used, the pressures raise to an unhealthy , but tolerable level, tolerable as long as the patient doesn't have high pressures to begin with. With Erica's pressures and the pressures the machine will give her it wouldn't be safe at all.
They would still like to do surgery ASAP. So it would be as early as tomorrow or friday.
Tuesday 17 January 2012
another waiting game
We played another waiting game today. Which has a person both frustrated yet understanding. The surgeons need to make the best decision, that they can't rush to a quick fix decision.
So we worked on crossword puzzles and wrote in her journal about her daily events, what she means to us and everyone else, How much everyone is praying for her, all while Erica slept and played and sang songs to her while she was awake. {Erica loves the itsy bitsy spider.}She is also 12 weeks old today and weighing in at 3.5 kilo's or 7 lb 11 1/2 oz. They decided to try to give her more lasics as she gaining way too much and is puffing up all over, my poor monkey doesn't have a neck anymore she's getting so swollen.
The cardiologists had there meeting this afternoon and had discussed Erica's case and MRI results along with comparing notes and all her other tests and ultrasounds.
Apparently they still aren't too sure. They know what is wrong and what needs to be done but they are unsure on how they can fix everything in the least riskiest manner. They want to do more echo's and possible a surgery on Thursday or Friday they just aren't 100% sure if they'll just close the ductus and do a lung biopsy and hopefully buy them a little more time with hopes that her pressures in her pulmonary artery and lungs decrease or if they'll do the Massive most risky complete surgery. The Dr. did say however that the Cardiologist don't want to wait long at all.
So we are still not sure what's fully going on. Hopefully we'll get more answers tomorrow!
So we worked on crossword puzzles and wrote in her journal about her daily events, what she means to us and everyone else, How much everyone is praying for her, all while Erica slept and played and sang songs to her while she was awake. {Erica loves the itsy bitsy spider.}She is also 12 weeks old today and weighing in at 3.5 kilo's or 7 lb 11 1/2 oz. They decided to try to give her more lasics as she gaining way too much and is puffing up all over, my poor monkey doesn't have a neck anymore she's getting so swollen.
The cardiologists had there meeting this afternoon and had discussed Erica's case and MRI results along with comparing notes and all her other tests and ultrasounds.
Apparently they still aren't too sure. They know what is wrong and what needs to be done but they are unsure on how they can fix everything in the least riskiest manner. They want to do more echo's and possible a surgery on Thursday or Friday they just aren't 100% sure if they'll just close the ductus and do a lung biopsy and hopefully buy them a little more time with hopes that her pressures in her pulmonary artery and lungs decrease or if they'll do the Massive most risky complete surgery. The Dr. did say however that the Cardiologist don't want to wait long at all.
So we are still not sure what's fully going on. Hopefully we'll get more answers tomorrow!
Monday 16 January 2012
MRA day or is it an MRI day
They stopped Erica's feedings this morning at 2:00 am. She was quiet for the most part. Sleeping restlessly with a blanket tented over her head until 1:00 pm (1 1/2 hrs sooner then we expected her to go down at) They got her all set and the RT (Respiratory Therapist) started to breath for her and we went down to the MRI room.
Erica was quite ticked off, to the point where her heart rate shot up to 180-190+ bpm, and she turned mottled (white and blotchy) with a red face, she was crying so hard (silently as she had the tube straight through her vocal cords to her lungs) that she had tears. They wheeled her into a little room and I was able to be with her, while dad waited in the Pediatric MRI waiting room just outside the big doors.
Once we got to her room the anesthesiologist came in to sedate and paralyze her for the MRA. They said sorry to her and told her that she wouldn't hate them for long. (I guess the med that paralyzes them stings/burns as it goes in. (of course she had to have the I.V. in her head) and the pain in her eye's was unbearable. She was out (white/mottled and very limp) in the matter of seconds.
The procedure ended up taking 2 hours as they had some issues with their ventilation for her (it had no PEEP) Then they had to give her more sedation and paralyzing med's as she was waking up during the procedure (of course it was 10 minutes until they would have had all they needed/wanted. So once we got back up stairs, she was placed in a warm blanket as she got very cold, and they started her I.V.'s back up, her med's, and started taking her blood pressure. Her heart rate was still at 180+ bpm and her blood pressure was extremely high (138/90+ with a mean of 101-115) they were maybe going to start giving med's, but they needed an arterial line in to measure her constant blood pressure and so they could draw repeated blood for blood work and gases. They tested her blood sugars and they came back high as well. They were thinking she was under massive stress, but they also couldn't rule out a reaction to the sedation and her heart in general.
Once she started to wake up her pressures and heart rate slowly declined ( It dropped however very slowly) Once she was more awake they were able to narrow her issues down to stress and sedation, as they did another echo to check her heart once they found out about her high pressures and it was fine and working the same as before with no closed ductus or more stenosis'ed veins.
She finally calmed down to a more tolerated level around 10:00pm
It was a very exhausting day for all!
Erica was quite ticked off, to the point where her heart rate shot up to 180-190+ bpm, and she turned mottled (white and blotchy) with a red face, she was crying so hard (silently as she had the tube straight through her vocal cords to her lungs) that she had tears. They wheeled her into a little room and I was able to be with her, while dad waited in the Pediatric MRI waiting room just outside the big doors.
Once we got to her room the anesthesiologist came in to sedate and paralyze her for the MRA. They said sorry to her and told her that she wouldn't hate them for long. (I guess the med that paralyzes them stings/burns as it goes in. (of course she had to have the I.V. in her head) and the pain in her eye's was unbearable. She was out (white/mottled and very limp) in the matter of seconds.
The procedure ended up taking 2 hours as they had some issues with their ventilation for her (it had no PEEP) Then they had to give her more sedation and paralyzing med's as she was waking up during the procedure (of course it was 10 minutes until they would have had all they needed/wanted. So once we got back up stairs, she was placed in a warm blanket as she got very cold, and they started her I.V.'s back up, her med's, and started taking her blood pressure. Her heart rate was still at 180+ bpm and her blood pressure was extremely high (138/90+ with a mean of 101-115) they were maybe going to start giving med's, but they needed an arterial line in to measure her constant blood pressure and so they could draw repeated blood for blood work and gases. They tested her blood sugars and they came back high as well. They were thinking she was under massive stress, but they also couldn't rule out a reaction to the sedation and her heart in general.
Once she started to wake up her pressures and heart rate slowly declined ( It dropped however very slowly) Once she was more awake they were able to narrow her issues down to stress and sedation, as they did another echo to check her heart once they found out about her high pressures and it was fine and working the same as before with no closed ductus or more stenosis'ed veins.
She finally calmed down to a more tolerated level around 10:00pm
It was a very exhausting day for all!
Sunday 15 January 2012
A possible plan
Today Erica is 82 days old 11 wks 5/7 days. Erica pretty much slept the entire day today as the RT (Respiratory Therapist) team and nurses needed to change Erica's tape on her tube and she got very angry with them. So they gave her a bit of sedation to help calm her, as her Stat's were dropping, and her heart rate was increasing a lot. Well the "little" sedation that was only suppose to last an hour lasted her the entire day. Guess they got her weigh/med ratio mixed up.
Erica did have some good wet diapers and some really heavy stinky ones too, never thought I would be so concerned over wet and poopy diapers before. Dr. Joynt told us that the cardiologists and other Dr.'s along with herself all feel that it's best to go in (through her side) and close her very large PDA (the echo was showing that it was a lot smaller then what it actually is) and take some lung tissue to do a biopsy on them. They are real concerned, but they aren't too sure which way to go as her pressures are just too high to completely fix everything all at once. They also did a dialysis on her kidney's and that showed that her kidney's are great!
Tomorrow's the BIG MRA day!
Fingers crossed we get some good news and they fix her up!
Erica did have some good wet diapers and some really heavy stinky ones too, never thought I would be so concerned over wet and poopy diapers before. Dr. Joynt told us that the cardiologists and other Dr.'s along with herself all feel that it's best to go in (through her side) and close her very large PDA (the echo was showing that it was a lot smaller then what it actually is) and take some lung tissue to do a biopsy on them. They are real concerned, but they aren't too sure which way to go as her pressures are just too high to completely fix everything all at once. They also did a dialysis on her kidney's and that showed that her kidney's are great!
Tomorrow's the BIG MRA day!
Fingers crossed we get some good news and they fix her up!
nice and content just before the re-taping and sedation
My dark curly hair... too bad it's mostly shaved off
Yippy... too bad a lot of that weight is fluid retention
Saturday 14 January 2012
A pretty good day
Today we had another pretty good day. The Dr.'s decided that they would play a little with her vent setting so she doesn't have to work hard at all, because they've decided that they aren't extubating at least until they figure out what the next step is. So her O2 is now at 36% (room air is 21% and she was sitting at 23%) and Her Peep (amount of air left in her lungs (pressure)) is at 8 (it was at 4-6) So she is vented a bit more, but it all means that she'll save all her energy.
She also pee'd more thought out the night and during the day, which means that the lasics are still working. They did another x-ray this morning which was a bit better then yesterdays but not much. They also started her on Heparin (blood thinner) for the clot in her right groin (in the artery)
Erica spent the entire afternoon playing and interacting with us. She was awake from 12:00 until shortly after 5:00 pm. Then she was a bit restless (well quite a bit) she finally settled around 6:30.
Playing and talking to Erica took us back to when everything was good, the only thing that was wrong with Erica was that she just needed to grow and get on her bottle feeds (Little did we know then). We haven't interacted with her like that in quite a few weeks as she's either been sedated or just plain exhausted herself. She was smiling again and I am sure if she didn't have the tube down her throat, she would have been vocal... cooing and telling us stories. I wanted so badly to just pick her up and let her bounce on my legs and cuddle her.
Today Erica weighed in at 3.45 kilo's, which is just under 7 lb. 10 oz.
She also pee'd more thought out the night and during the day, which means that the lasics are still working. They did another x-ray this morning which was a bit better then yesterdays but not much. They also started her on Heparin (blood thinner) for the clot in her right groin (in the artery)
Erica spent the entire afternoon playing and interacting with us. She was awake from 12:00 until shortly after 5:00 pm. Then she was a bit restless (well quite a bit) she finally settled around 6:30.
Playing and talking to Erica took us back to when everything was good, the only thing that was wrong with Erica was that she just needed to grow and get on her bottle feeds (Little did we know then). We haven't interacted with her like that in quite a few weeks as she's either been sedated or just plain exhausted herself. She was smiling again and I am sure if she didn't have the tube down her throat, she would have been vocal... cooing and telling us stories. I wanted so badly to just pick her up and let her bounce on my legs and cuddle her.
Today Erica weighed in at 3.45 kilo's, which is just under 7 lb. 10 oz.
Friday 13 January 2012
MRA is booked
Today Erica had a good day! She weighed in at 3480 Kilo's. They decided in the morning that they were no longer going to extubate her as the cardiologist were sure that they wanted to do the MRA (which apparently should have been the test to do in the first place) They are positive that this test will help them see her veins clearer to make a diagnosis and a plan. So Erica is booked in for her MRA Monday at 2:30.
They also did a few more echo's, a brain scan, an X-ray, and an ultrasound on her arteries in her right leg/groin as her right leg was cold and not getting good O2 levels. (this was also the side that they did the Angiocath procedure on)
She ended up getting a clot in the artery that they did the angiocath on, so they decided they wanted to put her on a blood thinner to help reduce the clot from getting bigger and help her to break it down. However they read in the notes from a Res Dr. in Regina that on Nov 14th, 2011 Erica had a brain scan and she had a small brain bleed on her right side, with involuntary leg movements. (She did involuntary leg movements with both legs, they associated it with PLMD or seizure activity, as a few movements ranging from .5 to 5 second long is normal however if it lasts longer {which hers lasted much longer about 20-30 sec or more}, this movement could have also been caused by medications also. ) We knew nothing however of the brain bleed, and Dr. Joynt said not to worry as they did say it was small and it was probably nothing to worry about. They did the brain scan and it was all good! No more brain bleed :) So with the "small brain bleed" out of the way they were able to order the blood thinners for her clot.
Erica also didn't have much urinary output today so they decided to do a x-ray to see if she had wet lungs or if the stenosis was getting worse. Luckily it was the better of the two (Wet Lungs) so they gave her more lasics.
They also did a few more echo's, a brain scan, an X-ray, and an ultrasound on her arteries in her right leg/groin as her right leg was cold and not getting good O2 levels. (this was also the side that they did the Angiocath procedure on)
She ended up getting a clot in the artery that they did the angiocath on, so they decided they wanted to put her on a blood thinner to help reduce the clot from getting bigger and help her to break it down. However they read in the notes from a Res Dr. in Regina that on Nov 14th, 2011 Erica had a brain scan and she had a small brain bleed on her right side, with involuntary leg movements. (She did involuntary leg movements with both legs, they associated it with PLMD or seizure activity, as a few movements ranging from .5 to 5 second long is normal however if it lasts longer {which hers lasted much longer about 20-30 sec or more}, this movement could have also been caused by medications also. ) We knew nothing however of the brain bleed, and Dr. Joynt said not to worry as they did say it was small and it was probably nothing to worry about. They did the brain scan and it was all good! No more brain bleed :) So with the "small brain bleed" out of the way they were able to order the blood thinners for her clot.
Erica also didn't have much urinary output today so they decided to do a x-ray to see if she had wet lungs or if the stenosis was getting worse. Luckily it was the better of the two (Wet Lungs) so they gave her more lasics.
Thursday 12 January 2012
Tests, Tests, and more tests...
Rounds start at 9:00 am. So we got up fairly early to grab our coffee's and walk to the hospital. Which only took roughly 20-25 mins
They decided to do an echo today which was to be an hour long, an ECG and blood work. They found on her blood work that she picked up an anti-body, quite possibly from the blood transfusion she got on Friday's Cath procedure. She got the Anti-Lutheran Antibody which only 9% of the population has, good news is that it's passive and her body will eventuaally kill it off, but it would probably take about 3 months for that to happen. They could give her something to help her fight it off faster, however it's not safe with her heart condition. So with surgery in our near future, they needed me to get blood work done to make sure that it was from the transfusion and not from me. They need to know this so that if she needs another transfusion they can get the right blood so she can fight it and it not destroy her red blood cells.
We were told that we'll more then likely get the decision on what test to do next tomorrow, as they are thinking the next best test would be an MRA (which they didn't have the machines to do one on her in Saskatchewan), so off to bed we go to prepare for another big day tomorrow.
MRA (Angiogram with an MRI)
They decided to do an echo today which was to be an hour long, an ECG and blood work. They found on her blood work that she picked up an anti-body, quite possibly from the blood transfusion she got on Friday's Cath procedure. She got the Anti-Lutheran Antibody which only 9% of the population has, good news is that it's passive and her body will eventuaally kill it off, but it would probably take about 3 months for that to happen. They could give her something to help her fight it off faster, however it's not safe with her heart condition. So with surgery in our near future, they needed me to get blood work done to make sure that it was from the transfusion and not from me. They need to know this so that if she needs another transfusion they can get the right blood so she can fight it and it not destroy her red blood cells.
We were told that we'll more then likely get the decision on what test to do next tomorrow, as they are thinking the next best test would be an MRA (which they didn't have the machines to do one on her in Saskatchewan), so off to bed we go to prepare for another big day tomorrow.
MRA (Angiogram with an MRI)
Wednesday 11 January 2012
The meeting, BIG news, and a road trip to EDMONTON!
Dr. Wonko came in this morning on rounds and had mentioned Erica's "condition". He also mentioned that he spoke with Dr. K as Dr.' Wonko himself is getting very impatient and wanting answers as badly as we all are.
Dr. K mentioned that Erica's heart conditions are not the usual in their text book field. The PAPVC is more of a TAPVC/TAPVR only with partial (2) veins and not total (all 4) veins. He said that her condition is quite complicated, and unusual.
Not something you want to here at all
All morning Erica's done quite well. Her Vent oxygen level was set at 27% which is only 6% above room air, and her stats have been in the 90's. Her breathing seems to be between 30-42 bpm which again is a lot better then her usual 70-120 bpm, and her heart rate seems to be between 120-150. She also weighed in at 3.535 kilo's (a lot of this is due to the fact that she's been sedated and paralyzed on I.V and had a blood transfusion. The nurses said not to be alarmed by her looks or the weight number as a lot of it is fluid retention as she hasn't gotten her diuretics either.
Later on in the day we were told that we were going to be going to Edmonton. It wasn't for a surgery right away but more so for more tests as the cardiologists and surgeons just aren't too sure about anything.
They don't know however if it'll be tomorrow or friday but they are wanting to get her there asap!
___________________________________________________________________________________
Wednesday January 11th, 2012
Well it's bright and early and the Saskatoon Dr.'s got a hold of Edmonton and have a room in the NICU there for Erica and want her asap.
So the plan is for her to leave around 2-4pm by plane.
We figured we better make our phone calls to the grandma's and grandpa's and call to make accommodation arrangements for ourselves. We tried the Ronald Mc Donald house not really thinking we'd get in, but to our surprise they had one room available so we took it, packed up, gave Erica our safe flight wishes and kisses and told her we'd see her soon, that they were going to figure out her little heart and make it all better again, so she can come home where she belongs.
IT was a long drive to Edmonton, but we made it. We got to the Ronald Mc Donald House unpacked and found our way to the Stollery Children's Hospital, to make sure Erica had make it safely and was nicely settled in.
Dr. K mentioned that Erica's heart conditions are not the usual in their text book field. The PAPVC is more of a TAPVC/TAPVR only with partial (2) veins and not total (all 4) veins. He said that her condition is quite complicated, and unusual.
Not something you want to here at all
All morning Erica's done quite well. Her Vent oxygen level was set at 27% which is only 6% above room air, and her stats have been in the 90's. Her breathing seems to be between 30-42 bpm which again is a lot better then her usual 70-120 bpm, and her heart rate seems to be between 120-150. She also weighed in at 3.535 kilo's (a lot of this is due to the fact that she's been sedated and paralyzed on I.V and had a blood transfusion. The nurses said not to be alarmed by her looks or the weight number as a lot of it is fluid retention as she hasn't gotten her diuretics either.
Later on in the day we were told that we were going to be going to Edmonton. It wasn't for a surgery right away but more so for more tests as the cardiologists and surgeons just aren't too sure about anything.
They don't know however if it'll be tomorrow or friday but they are wanting to get her there asap!
___________________________________________________________________________________
Wednesday January 11th, 2012
Well it's bright and early and the Saskatoon Dr.'s got a hold of Edmonton and have a room in the NICU there for Erica and want her asap.
So the plan is for her to leave around 2-4pm by plane.
We figured we better make our phone calls to the grandma's and grandpa's and call to make accommodation arrangements for ourselves. We tried the Ronald Mc Donald house not really thinking we'd get in, but to our surprise they had one room available so we took it, packed up, gave Erica our safe flight wishes and kisses and told her we'd see her soon, that they were going to figure out her little heart and make it all better again, so she can come home where she belongs.
IT was a long drive to Edmonton, but we made it. We got to the Ronald Mc Donald House unpacked and found our way to the Stollery Children's Hospital, to make sure Erica had make it safely and was nicely settled in.
Monday 9 January 2012
The CT scan
Ian AdatiaWell today was the CT scan. It was the day where we were to get confirmation, a plan, a diagnosis, and instead we got a bunch of confused Dr.'s and Surgeons.
The CT scan had shown that Erica had apparently grown a 5th vein. One of her pulmonary veins had branched off into another vein (however it's tiny and unusable) The CT had also shown that she has 2 veins going into her right atrium and 2 going into her left. Only the 4th vein looked to be very stenosis 'ed, and by the view of the other stenosis veins they looked more stenosis 'ed the pressures on the cath procedure on friday had told them. The CT had also suggested that she may have some lung disease as they can't tell if it's solely the affect of the blood "back-filling".
They were thinking of doing an extubation on her (taking out the breathing tube) after the CT today however because the CT made them more confused they are keeping it in. { We both thought of this as well and also mentioned to the nurses that as much as we would love to hear our sweat angel again, with pending surgery and her needing to be intubated it didn't make sense to cause more trauma with intubation and extubation repeatedly}
They are going to have their BIG tuesday meeting again tomorrow and Dr. Ashok Kakadekar is requesting Dr. Ian Adatia to weigh in on her case as he's a pulmonary hypertension specialist with offices in California, Edmonton, and Winnipeg. They are also going to consult a Pediatric lung specialist.
The CT scan had shown that Erica had apparently grown a 5th vein. One of her pulmonary veins had branched off into another vein (however it's tiny and unusable) The CT had also shown that she has 2 veins going into her right atrium and 2 going into her left. Only the 4th vein looked to be very stenosis 'ed, and by the view of the other stenosis veins they looked more stenosis 'ed the pressures on the cath procedure on friday had told them. The CT had also suggested that she may have some lung disease as they can't tell if it's solely the affect of the blood "back-filling".
They were thinking of doing an extubation on her (taking out the breathing tube) after the CT today however because the CT made them more confused they are keeping it in. { We both thought of this as well and also mentioned to the nurses that as much as we would love to hear our sweat angel again, with pending surgery and her needing to be intubated it didn't make sense to cause more trauma with intubation and extubation repeatedly}
They are going to have their BIG tuesday meeting again tomorrow and Dr. Ashok Kakadekar is requesting Dr. Ian Adatia to weigh in on her case as he's a pulmonary hypertension specialist with offices in California, Edmonton, and Winnipeg. They are also going to consult a Pediatric lung specialist.
Sunday 8 January 2012
A pretty uneventful weekend
Sounds not too bad... right?
Saturday Erica had slept most of the day. Well she slept unwillingly. They ended up having to sedate Erica as she was getting pretty up-set, probably for multiple reasons... Being unable to eat (they still kept her NPO [nothing by mouth]), having being aware that she had a tube down her throat forcing air, and she must have not been feeling well, as she was running a temp 39*
Sunday was a bit better, her temp was gone and she seemed to be less annoyed about the tube. She still got some sedation to keep her calm and sleepy but she wasn't completely knocked out to the point where we couldn't wake her.
We sat all day chilling out watching Erica sleep trying to prepare for the CT scan tomorrow. Towards the end of the afternoon Erica threw up, so we were able to hold her mid air so the nurse could change her sheets and then we had to set her back down. It was the hugest tease. There was nothing more I wanted to do then to cuddle and hold her again.
She was also pretty gunked up in her tube with loads of secretions being constantly suctioned out which we were told is normal with being intubated and having a heart condition.
Saturday Erica had slept most of the day. Well she slept unwillingly. They ended up having to sedate Erica as she was getting pretty up-set, probably for multiple reasons... Being unable to eat (they still kept her NPO [nothing by mouth]), having being aware that she had a tube down her throat forcing air, and she must have not been feeling well, as she was running a temp 39*
Sunday was a bit better, her temp was gone and she seemed to be less annoyed about the tube. She still got some sedation to keep her calm and sleepy but she wasn't completely knocked out to the point where we couldn't wake her.
We sat all day chilling out watching Erica sleep trying to prepare for the CT scan tomorrow. Towards the end of the afternoon Erica threw up, so we were able to hold her mid air so the nurse could change her sheets and then we had to set her back down. It was the hugest tease. There was nothing more I wanted to do then to cuddle and hold her again.
She was also pretty gunked up in her tube with loads of secretions being constantly suctioned out which we were told is normal with being intubated and having a heart condition.
Friday 6 January 2012
Finally some answers
We meet with Dr. Pharis this morning to talk about the procedure. What they were looking for and sign the consent form. It was nerve wrecking as Dr. Pharis was hoping that if they found this stenosis he hoped that it wasn't total stenosed veins as if they were there was absolutely nothing they would be able to do for them as it they were total stenosis 'ed they would be small from tip to tip and the lung side goes deep into the lungs where they can't fix as the lung is very spongy delicate tissue. The procedure was to take approximately 2 1/2 - 3 hours long.
They needed to sedate and paralyze her for the procedure. So we waited on pins and needles as the hours went by. Finally a little over 4 hours later They came in to tell us that she was on her way back up and that it went well.
We sat down with Dr. Kakadekar and he explained that they were able to get everywhere they wanted to except for one pulmonary vein (top right). She did need a transfusion of 60 cc. Which apparently is quite a bit for a little one. He said however that her stenosis is very small, but that they where able to tell that her lower right pulmonary vein had formed to the right atrium instead of the left where it should be. The PDA was still very large, she also has what they think is a medium/large ASD (however it looks to be shunting the blood flow in the wrong direction), really high pressures in her lungs and pulmonary artery. They were fairly certain however that the "shelf" in her aorta (coarctation of aorta) isn't causing any major problems.
Because of the fact that they weren't able to see the top right pulmonary vein and where it was going to, they wanted to do a CT scan to reconstruct her heart and confirm the cath results.
It was a huge relief as he was very convincing that it all sounded fixable, and she was going to be fine.
Angiogram
Pulmonary Vein Stenosis
Coarctation of Aorta
ASD
PDA
TAPVR/ PAPVR
Pulmonary Hypertension
They needed to sedate and paralyze her for the procedure. So we waited on pins and needles as the hours went by. Finally a little over 4 hours later They came in to tell us that she was on her way back up and that it went well.
We sat down with Dr. Kakadekar and he explained that they were able to get everywhere they wanted to except for one pulmonary vein (top right). She did need a transfusion of 60 cc. Which apparently is quite a bit for a little one. He said however that her stenosis is very small, but that they where able to tell that her lower right pulmonary vein had formed to the right atrium instead of the left where it should be. The PDA was still very large, she also has what they think is a medium/large ASD (however it looks to be shunting the blood flow in the wrong direction), really high pressures in her lungs and pulmonary artery. They were fairly certain however that the "shelf" in her aorta (coarctation of aorta) isn't causing any major problems.
Because of the fact that they weren't able to see the top right pulmonary vein and where it was going to, they wanted to do a CT scan to reconstruct her heart and confirm the cath results.
It was a huge relief as he was very convincing that it all sounded fixable, and she was going to be fine.
Angiogram
Pulmonary Vein Stenosis
Coarctation of Aorta
ASD
PDA
TAPVR/ PAPVR
Pulmonary Hypertension
Thursday 5 January 2012
A calm day
We came early this morning to see Erica. She was pretty sleepy as she was sedated for the ride up to Saskatoon but other wise she seems to be doing pretty good. They still have her off of feedings and wont resume them until after the angiocath tomorrow.
She had another Echo done today and another X-Ray both had confirmed what was electronically sent and the x-ray had showed that her lungs looked better.
They decided later on today that they want to make her first case instead of second. So her angiocath will be at 8:30 am.
She had another Echo done today and another X-Ray both had confirmed what was electronically sent and the x-ray had showed that her lungs looked better.
They decided later on today that they want to make her first case instead of second. So her angiocath will be at 8:30 am.
Wednesday 4 January 2012
To Saskatoon we go
We got the call and were to go to Saskatoon by air at 1:00 pm. We call to see if they had left or are still scheduled to leave by 1:00, however they were unable to get the plane any more, so they needed to make alternate arrangements with the ground ambulance, which they ended up getting and they were then to leave by 3:00-3:30pm. We dropped Emily and Brayden off at grandma and grandpa Aschenbrener's, called the hospital again, just to make sure as it was nearly 4:00 and they hadn't called yet to say they left and they said that she was leaving shortly. They were having some problems with getting the CPAP machine to work, so they needed to intubate Erica in order to get her to Saskatoon safely, after they intubated her they needed to take an X-Ray and do some blood gases to make sure it was all in the right spot and working as it should be. So we told them to call our cell when she was leaving as we were on our way to Saskatoon ourselves.
We ended up calling them back multiple times as they hadn't called and each time I got the same answer nope she hasn't left yet we are waiting on the gases. We made it to Lanigan and decided we better sit and eat as she still hadn't left Regina and we were already half way there. So we ate and then left again for Saskatoon. finally at 6:15 the NICU called
"Sweet Little Miss Erica has left the building" said her nurse
Erica arrived at the Royal University Hospital NICU in Saskatoon at 8:30pm. They placed her under a "disease precaution" for 24- 48 hours until her blood work came back negative, because she came from another hospital
Erica's Saskatoon admission weight was 3.31 kilo's 48.5 cm long (19 inches)
We ended up calling them back multiple times as they hadn't called and each time I got the same answer nope she hasn't left yet we are waiting on the gases. We made it to Lanigan and decided we better sit and eat as she still hadn't left Regina and we were already half way there. So we ate and then left again for Saskatoon. finally at 6:15 the NICU called
"Sweet Little Miss Erica has left the building" said her nurse
Erica arrived at the Royal University Hospital NICU in Saskatoon at 8:30pm. They placed her under a "disease precaution" for 24- 48 hours until her blood work came back negative, because she came from another hospital
Erica's Saskatoon admission weight was 3.31 kilo's 48.5 cm long (19 inches)
Tuesday 3 January 2012
The BIG Meeting
Today Erica is 44 weeks gestation and 70 days old! She weighed in last night at 3.25 which is 7lbs 2 oz! GO ERICA GO! Tonights weigh in was 3.28 kilos which is 7 lbs 3 1/2 oz! Lets hope it's all weight and not fluids this time.
Today was also the BIG MEETING day with the Cardiologist of North America. As to what they've discussed she is to go to Saskatoon for a angiocath in which they'll inject dye through an artery in her groin and take a scan to view the blockages, leaks, pressures, flow, etc. to her heart and organs.
They want her there tomorrow, so she will be air lifted tomorrow afternoon to the PCIU in saskatoon university hospital, then on Thursday they'll do another echo, and on friday Dr. Ashok Kakadekar and Dr. Faris will do the procedure.
There are definitely mixed emotions right now. We've wanted them to not really find anything because the thought that something is wrong with her child's heart is unbearable, but yet I want them to find something that's minor and can be fixed easily and none or at least minimal invasively because then all our guessing games are over. She wont be the mystery baby... She'll be "fixed" and can come home, where she belongs!
Today was also the BIG MEETING day with the Cardiologist of North America. As to what they've discussed she is to go to Saskatoon for a angiocath in which they'll inject dye through an artery in her groin and take a scan to view the blockages, leaks, pressures, flow, etc. to her heart and organs.
They want her there tomorrow, so she will be air lifted tomorrow afternoon to the PCIU in saskatoon university hospital, then on Thursday they'll do another echo, and on friday Dr. Ashok Kakadekar and Dr. Faris will do the procedure.
There are definitely mixed emotions right now. We've wanted them to not really find anything because the thought that something is wrong with her child's heart is unbearable, but yet I want them to find something that's minor and can be fixed easily and none or at least minimal invasively because then all our guessing games are over. She wont be the mystery baby... She'll be "fixed" and can come home, where she belongs!
Monday 2 January 2012
New Year's not starting off too good
We got a call on New Year's Eve 3 hours after we left, says she took a turn for the worst. She ended up D-Sating and turned blue while her breathing got really heavy and fast (140-160 bpm) So they took an X-Ray and it showed she had massive Pulmonary Edema. So they moved her back into the critical NICU section (spot 5), were giving her more diuretic's and putting the nasal CPAP on her and if that doesn't work then they'll incubate her.
When I got there the CPAP seemed to be working and is still working today but they do have her in the incubator with the top up just incase. They also called her cardiologists and they are having a meeting with all the cardiologists in North America on Tuesday (Tomorrow) for her (U.S and Canadian top surgeons) and then HER Cardiologist will be coming down on Thursday so do another echo and hopefully be able to figure this out.
They aren't thinking her heart conditions are causing this as her pulmonary veins are only slightly narrowed and the PDA was nearly closed and not causing any effect on the shelf in her aorta, however they have nothing else to blame for her symptoms as all her blood tests and scans have come back great even her gases. The Dr.'s said that they really don't know what's going on with her that all they can do is make her comfortable until they can figure it out, and that hopefully they can figure it out soon, because she's not getting better she's getting worse and has been getting worse since she was born :(
When I got there the CPAP seemed to be working and is still working today but they do have her in the incubator with the top up just incase. They also called her cardiologists and they are having a meeting with all the cardiologists in North America on Tuesday (Tomorrow) for her (U.S and Canadian top surgeons) and then HER Cardiologist will be coming down on Thursday so do another echo and hopefully be able to figure this out.
They aren't thinking her heart conditions are causing this as her pulmonary veins are only slightly narrowed and the PDA was nearly closed and not causing any effect on the shelf in her aorta, however they have nothing else to blame for her symptoms as all her blood tests and scans have come back great even her gases. The Dr.'s said that they really don't know what's going on with her that all they can do is make her comfortable until they can figure it out, and that hopefully they can figure it out soon, because she's not getting better she's getting worse and has been getting worse since she was born :(
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