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.
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