First we saw the dietitian and I gave her the food log that I have made to keep track of Noah's caloric intake. She loved it! We also discussed my short and long term goals for Noah in terms of feeding. Short term, meaning in the next 6 months, I would like for Noah to be on his blenderized diet for daytime feeds and formula only at night. The dietitian said that is completely reasonable and I am free to do so at my own pace. It will be really easy to make that transition because the blenderized food I give him is in the same range of calories as his formula. So basically I can just substitute the formula for BD food. Long term, by the time he's 2, I would like to try to wean him off of overnight feedings and give him all of his feedings and calories during the day. I feel like that would be the most developmentally appropriate thing and I am hoping it will make him more alert and active during the day. She also supported me in that goal and said that is definitely something that we can try. I do understand that there are some children/ people that are tube fed that just always seem to need to be fed overnight. That may be the case for my hungry, hungry hippo Mr. Noah, but I am willing to try to wean him.
Then we saw the speech pathologist and we talked about a repeat swallow study since he hasn't had one in almost a year. She didn't think we would see too much of an improvement especially since we didn't get to complete all of our vital-stim treatments. She talked with Noah's regular speech therapist and they decided together to wait for the swallow study until he has completed 25 sessions of vital-stim. Vital-stim is pretty much just little tiny electrodes that go on Noah's neck and give little "shocks" to stimulate his muscles to swallow. He had about 4 sessions a couple months ago and then we had to stop speech therapy sessions because of a crappy insurance problem. Noah tolerates the vital-stim very well, kind of enjoys it even. So I'm hoping we can get through 25 treatments fairly quickly and then go back for the swallow study. The speech pathologist also drilled a tiny hole in Noah's speaking valve because I was telling her how Noah was having trouble wearing his valve and seemed uncomfortable when it was on. She said that most of the time kids will tolerate it better with just that tiny little air leak until they can get used to the feeling of wearing the valve. I'm hoping it will work for Noah because I love hearing his voice but I don't like that he gets so upset when he wears it.
Next came the ENT and pulmonologist together. Noah had a sleep study at then end of June so we have been eagerly awaiting the results. It came back that it looks like Noah has some type of obstructive sleep apnea. That is pretty strange for a kid with a trach to have something obstructing his airway. They want to set up an appointment to go into the operating room and put a scope down his throat and trach under anesthesia to see if there may be some scar tissue or granulation tissue possibly causing some blockage. They said this is pretty rare [what about Noah isn't rare at this point] but if they do find an obstruction then they can just use a laser to get rid of it right then and there. If they look and don't find anything, then they may have to explore some other reasons. It may be due to his low muscle tone. But here comes the best part.... The original question in all of this was hypoventilation. That means that Noah might not be exchanging oxygen and carbon dioxide correctly. When carbon dioxide levels get too high in the body it can be bad news. The pulmonologist thought he might need ventilator support if the sleep study showed hypoventilation. The results came back that his gasses look perfect! There is no cause for concern of hypoventilation and Noah's number score from his study was a 7. 5-10 is considered "moderate apnea" and Noah's doctor was expecting his number to be more like 20-30. He also said that he has seen kids with neurological issues similar to Noah where their numbers were in the triple digits. He was pleasantly surprised at how good Noah's results were. So the best news of today is NO VENT!!! He does have to use oxygen at night while he sleeps now but I think that will be good to give him a break from working so hard during the day. We have yet to schedule his scope but hopefully it will be in the next couple months before we get into cold & flu season.
After we met with everyone they called for the Palliative Care team to come and escort us up to their office. We met with a nurse practitioner, social worker, and a child life specialist. They were probably the nicest people I have ever met. They basically just asked us to tell our story all the way from my pregnancy to Noah's birth, our NICU journey and then life at home. It was hard and there were tears. I still have trouble talking about Noah's birth which you can read about here. They also specialize in pain management which I am so grateful for. Noah's disease can have some pretty painful side effects like contractures in his muscles and scoliosis. He already has spasms and is on muscles relaxers for that so I am trying to be as proactive as I can before anything gets too painful and out of control for Noah. They were very caring and very compassionate. I can tell they really love their jobs and love to help families. I really look forward to having them be apart of Noah's care team. I really want to encourage parents of children with hard diagnoses to reach out to resources like a Palliative Care team at their home hospital. Like I said before, they do so much more than end-of-life things. But I know that when that time comes they will be there to support us and care for us in the way that we need to be supported and cared for. I feel like they are going to be such a good source of comfort and guidance when things get a little more tough.
Here are a few pictures from today... He looks like such a big boy in his cute outfit!
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