Thursday, June 18, 2009

How's Jack?

I get asked this lovely question all the time. So many people care about him. It's just wonderful.
The problem is it's complicated. Jack is doing great because he's growing and developing daily. During the day, on most days, Jack is happy and full of energy with a robust appetite. Of course, today and yesterday have been a bit strange but more on that later.
Nights....a whole other story. Nights at our house are well, there's no other way to put this, they're scary. Jack is not doing great at night. He requires up to 24 cm of H2O pressure (trust me that's a lot) just to be able to take in a breath and that's not necessarily a good deep oxygen-filled breath. We add supplemental oxygen most nights. He is very congested at night and he is having awful problems with his reflux. The high pressure air from the Bipap is blowing up his little tummy. It's a crazy cycle and we don't know what comes first so we don't know exactly what to do.
The air quality is not great here right now plus there are a ton of allergens in the air so we (Jack's parents, his ENT, and our family doctor) think that this is at least contributing to Jack's increased congestion. But then there's his reflux. Reflux can cause increased congestion but increased congestion can aggravate reflux especially if Jack is gagging on his secretions. Initially we thought Jack was simply gagging on those secretions which caused him to throw up. We solved that problem by adding an antihistamine and drying up the secretions.That kept him from waking up and throwing up into the mask.
Then, he started just refluxing without making a sound or waking up. The problem with this is that he was not coughing or anything and this stuff could go in his lungs and cause pneumonia or other damage. We realized that his tummy was very gurgly and lo and behold nausea and vomiting is a side effect of the Zyrtec we were giving him! We changed his meds again and the reflux is not coming all the way up but he's coughing again so we don't know if the Claritin is not drying up the secretions well enough or if the reflux is just coming up the back of Jack's throat.
His little tummy continues to blow up. We don't know why he's doing this when he has not done it before. We think it may be because he's swallowing air as he swallows those sinus secretions or swallows back down the reflux. We've started eating much earlier in the evening so Jack has a few hours between eating his big dinner and going to sleep. We've even given him Simethicone to help pass any gas that he may have. The problem here is the air gets pushed into the tummy, the tummy expands, the tummy inhibits movement of the diaphragm so Jack has an even harder time getting air in, the Bipap senses this and increases the air pressure to get the air in and the tummy continues to blow up. See how this can go on and on endlessly?
The past couple of days Jack has not been himself during the day either. He's fussier than normal and not quite as energetic although he had a great time in the pool yesterday evening. Yesterday, we are fairly certain his blood sugar must have dropped pretty low. He had all the classic signs and he perked up after we got some sugar and a little protein into him. Today he's just not his easy going self. Maybe he's just not truly resting well, maybe a hundred other things....
I don't want to be all overly dramatic here. The truth is David and I are not sleeping well for watching and worrying over how Jack will do each night BUT our days are filled with joy and discovery and friends.
So if you ask me how Jack's doing and I pause before answering it's cause I just don't know what to say....he's great but he's also having some scary nights.....

1 comment:

Anonymous said...

Hi Marie, i have just spent the last hour and a half reading your lovely blog on Jack. I was in tears as well as It was like reading about my own son Samual,who has aperts, he will be 10 on the 4th july. He has speech delays as well,(this was due to him having a trachy tube for 4yrs),sleep apneas,and a few other things that most the kids with this syndrome have Plus a few extra add ons(as i like to call them:))etc. but what touched me about Jack was that he is into the same things Samual is into. Sam hates being in side, loves water, I let him play in the shower during the winter as its warm and I have a all in one shower so it cant be flooded.(unlike the kitchen sink at 530am :))enjoys going the macdonalds for a shake and now after eight years he has moved to wanting a cheeseburger as well. normally has pasta, but thats been taken off the menu here. Last year I was introduced by Sams speech thrapist to a learning programme here in New Zealand which I see is also available in the USA. It's called The Picture Exchange Communication System. and its great, Sams speech has improved ten fold with him using it, and his school also uses it.You might want to ask your speech therapist about it or even your school. I'm happy to send you information on it. it's simple to use, it is pictures of things like symbols of words, example trains, what food he'd like to eat, favourite toy. you can also make sentences with this system, like can i have a cheeseburger please. and it boosts their confidence (although going by the photos and if he's any thing like Sam that wont need boosting :))but it helps them to talk and to communicate with others around them (as they have to say what is on there card to the other person then hand it to them,the other person can then see as well as hear what it is they would like to have or say, then hand it back to the child. the only web site i can locate is the following. (I hope this helps). Sam has a page on teeters page Samual Lea. Which badly needs updating i have been a bit slack with this. if you want to see what he looks like. Well I better go got lots to do before school comes out at 3pm, So fron New Zealand keep warm and keep up the great job with Jacks blog site. Tina Lea