As I sit down in Starbucks at Tampa General Hospital to write this it has been exactly 72 hours since they took Maddy back for surgery. I did not update yesterday so I have a lot to catch up on during this post.
Thursday night they started the process of weaning her off the ventilator. The first step was to get her off the Nirtic Oxide. By Friday morning they had her down to 5 units , which is the lowest setting on the machine. They tried to remove the Nitric completely but Maddy did not tolerate it. The Nitric is used to dilate the small blood vessels in the the aveoli to help with gas exchange. On 5 unites Maddy was saturating well and everything looked good. When they removed it her sats went down and her pulmonary artery pressure went up. They obviously want those numbers to stay the same so they decided to give her another 24 hours to stop needing the Nitric. The other option is to give her Viagra, which is a blood vessel dilator and see if that does the trick. Dr. Rolf said that after the she should be able to be off the vent in a few hours.
That was the plan, what happened was a little different. This morning they took her off the Nitric and put her on the Viagra. Perfect! Pulmonary Artery pressure within specs and O2 saturation at 100%. No problems there. New kink, she has not pooped since the day before the operation. It’s not unusual for the bowels to stop moving so it’s really not a big deal. They also expect the new anti rejection drugs she is on to cause constipation. Because she has been out so long and not up and moving the vet things moving along she has a bit of a back up. The doc had an X-Ray done to make sure there was no blockage. Everything looks find but a little full. he is worried that if she is backed up her diaphragm won’t have enough room to move so she can get those first really good deep breaths she needs to be off the ventilator. So he has ordered an medicine to get her moving again and has to wait until that is clear before she can remove the vent.
That’s all the boring medical stuff. On to the good stuff. Melissa, Natalie and I have all been taking turns making sure someone is around so that she has a familiar face close by when she wakes up. We each got a few moments of awareness yesterday while hanging around her bed at different times during the day. They still had her pretty well sedated so it was very sleepy acknowledgements of our presence. We have all been told to get home to sleep as much as possible while they are keeping her sedated so that we are rested when she is up and needs us. So we have all been good parents and gone home every night since she got out of the operating room. Natalie was the first here today and Maddy was up and aware soon after she got here. Natalie was able to talk to her and let her know what’s going on so she can stay calm and not worry about all the tubes in her. Maddy has taken it like a trooper! She is very calm and accepting of the intubation tube in her throat.
I spent the morning getting Ethan ready to travel to Gram’s house for the summer. Natalie let me know that they kicked her out for 20 minutes while they took the two big chest tubes out of Maddy. No worries they bumped up the sedation while they did it. By the time I got down her Natalie and Melissa had been visiting for a while. Melissa was waiting for Lee so I went in to say hi and Maddy was awake and trying to communicate. Again she took the inability to talk and the tube in her throat in stride. She had a moment when she needed the intubation tube suctioned out and seemed to panic a little but took it all in stride and seemed very calm after it was cleared. She asked for pen and paper to communicate and we asked the nurse. He seemed a little incredulous but granted our wish by bring a clip board, paper and pen and wished Maddy luck. No luck, little Maddy’s fingers were too weak to write. She then motioned for her phone. I apologized for not bringing it and said they probably wouldn’t let her use it anyway. Can’t see how we would sterilize it. She shrugged it off and pointed to where she needed a scratch. They had her hands restrained so she didn’t pull on the intubation tube when she first wakes up. They nurse said we can remove the restraints while we are with her and she gratefully scratched her nose.
I could go on to recount the remainder of these mundane communications that seem so precious to us but are probably rather boring to anyone reading this. So I will refrain. I will finish by saying that Aunt Lee, who was in town visiting William’s mother who is in University Community hospital, got to come by. I had Melissa talk the nurse into allowing her in to see Maddy through the glass. Maddy waved to Lee with a casual wave as if to say “hey, ignore all these tubes, I’m doing just fine”. And just then she needed her intubation tube sucked out again. She looked uncomfortable but much more calm this time it happened. Like I said she is the strongest kid I know. Or has that always just been implied?
Maddy is sleeping again and I expect she will sleep all night after being up and visiting with us all day long. Hopefully her bowels will move tonight and they will extubate her tomorrow. She will very much like to have that tube out of her throat. I will go back up and hang out until they kick me out for the shift change. Then decide if I’m hanging out all night or heading home. I am guessing they will keep her a little more deeply under again tonight since they can’t take her off the vent until tomorrow.
More to come...
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