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.
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