Appointment Week capped off with a PICU stay

So last week was Thomas's appointment week. He started the week off with his Hypertension clinic to follow up on his chronic high blood pressure from all the hospital stays. This appointment was a good one, they took his blood pressure a few times and listened to his heart and all looked good. He had a normal blood pressure and they aren't worried about it. They think the way they take his blood pressure when we are in the ICU isn't accurate since his size is between the cuffs. I am both glad and frustrated to hear this. I am glad that he doesn't have chronic high blood pressure and we don't have to go on a wild goose chase to figure out what would be causing it, but I am frustrated because sometimes that keeps us in the hospital longer and puts him on meds that are unnecessary. At the end of the day, though, it is good news and we were discharged from nephrology. Then on Tuesday, he was scheduled for a Neurosurgery follow up to see how we are doing since the decompression and to explain the results of the MRI that he had done mid-December, unfortunately our surgeon got called away last minute on emergency surgery so that one had to get rescheduled. Next up, on Wednesday, we had a nurse from the Bureau of Children with Medical Handicaps come to the house to explain the BCMH program to us and help us apply. This is a very helpful program that the state of Ohio offers to help families that have kids with special needs pay bills that their insurance won't cover based on the diagnosis and needs of the kid. When talking to insurance or nursing staff that can potentially give us more help with all that Thomas needs, it is emotionally draining. Most of the time, when we discuss Thomas to people or explain his needs, we are very positive and pro-active and always make sure to hit the high points, but when assistance is going to be based on his diagnoses and his overall health, you have to list out EVERYthing. Don't sugar coat and don't play down, they need to know everything and all the nitty gritty that you need. This takes it's toll. I can feel myself grieving all over again as I list out all of his challenges....it seems never ending when you list them out back to back to back and you can see the person struggling to keep up in writing it all down, or even better they ask you to slow down or make a comment about how they are running out of room on their paper. To be honest, this breaks me and I definitely need a moment to myself after one of these visits. I used to feel bad about how listing out HIS challenges in every detail would break ME....sounds pretty selfish, but I realized that as a parent, his challenges are mine too; just as his successes will be also. Yes, they won't affect me like they will affect him, but they do still affect me, so it's ok that I hurt to list them all out, it's ok for me to take a moment to grieve after being hit in the face with all that we are up against, because it is going to be hard, but we can do hard things. And although the hard moments are really low, probably lower than other parenting moments that we have gone through, I think the great moments will be fantastically great because of the back story that will be behind them. So since I plan on celebrating those fantastically great moments, it's ok for me to grieve in the hard ones too. But, I digress. The BCMH nurse was very helpful and we have applied for the program and hopefully will qualify for some assistance. Then on Thursday we met with the feeding team to see if he was ready for solid foods. This was a long clinic visit, but he did well. They watched him breastfeed and bottle feed and assessed him. They are confident that we can start solid food, but will probably need help along the way with textures and things of that nature, so we will do weekly occupational therapy appointments to help him along this process. This is good news because we need him to gain weight. He has plateaued in his growth and the concern is that he is working too hard to breath and using up all his calories (I think I mentioned this in the last post), so hopefully starting solid foods and staying out of the hospital will help him do that....this leads us to now...in the hospital. When we were at our feeding team visit I dropped off a urine sample to see if it had any growth since he had had a fever a few days before. It came back positive for bacteria growth of a bacteria called klebsiella. So we had to go on antibiotics to fight this UTI. We started the meds on Friday night, then on Saturday he was uncomfortable, he didn't seem himself and his stridor was starting to pick up again. We thought this was due to the UTI and the antibiotics just hadn't kicked in yet, but on Sunday it got worse and he couldn't settle down, so Sunday night I brought him in. The drive to the hospital, on a good day, takes about 45 minutes. He seemed ok when we left the house, just upset and uncomfortable, but not in distress. As we drove he seemed to be getting more upset. By the time we pulled into the Emergency Room he was not in good shape. I am not sure if it was just the timing of working hard all day had come to a head right then, or he wasn't able to breath as well in his car seat, or he was just mad at being put in the car seat after being held all day, but whatever it was, he had lost his color. He wasn't blue, but he was definitely dusky looking. There was a line at the ER, but they heard us coming a mile away and just took us around everyone and straight back to trauma bay. They put some oxygen on him right away and went through the normal routine of getting the IV and breathing treatments and the whole shebang that goes with the trauma bay. His chest X-ray looked good and he responded well to the oxygen. They got us up to the PICU and on the heliox machine. It was about midnight at this point. He seemed comfortable and ready to settle in for the night, but around 1 am his heart rate sky rocketed and hung out in the 210's (normal for him is 140's) and we couldn't get it down. They tried to give him more steroids, but it didn't help. They put him on some acetaminophen to see if it was pain, but that didn't help. This went on all night and you could see how tired he was, finally they gave him some medicine that basically sedated him so he could settle down, this got his heart rate to the 190's, but not as low as they needed it. They were preparing me for a breathing tube to be put into him, which is dangerous for Thomas since his vocal cords are paralyzed, it would be hard to get the breathing tube out without causing damage. They upped the meds and put him on a BiPAP machine to help him breath as a last resort before breathing tube. He looked like a little scuba diver.

 It took him about 30 minutes to respond to the machine (they expected him to respond in about 5 minutes, but he always paves his own path). He finally settled down and his work of breathing relaxed and he was able to sleep with a normal heart rate. He stayed on the machine for about 6 hours, then he was stepped down to the high flow oxygen and now he is on normal oxygen, with his next step down in about two hours to room air. The really cool thing is that they were hesitant to take off the BiPAP, but he seemed hungry (whenever we are admitted I can't feed him for a day or two because they are worried about his breathing), so they let us take off the mask to feed him, thinking we would put it back on, but we gave him a bottle and he responded amazingly. His sats actually went up and he seemed very content, so they didn't put us back on the machine, they just let him step down to the high flow....he just needed to eat. Food solves everything, I am hoping this will also be the case when we start to do the solid foods - food will solve it and avoid a trach!

He's doing much better now and looking more like himself!!