Tuesday, January 12, 2010

Winter break

I know, I have not blogged in weeks -since Thanksgiving. Basically it was nonstop till Christmas.

Christmas came and Adam was very sniffly on Christmas, but no fever. Then it was all non stop illnesses. Adam was sick first: fever for days, vomiting, mucous everywhere. When Adam is sick, it lasts a long time. He has really so little ways of fighting anything- I mean he missed the entire 3rd trimester and due to all his issues, it is so hard for him. His stoma (hole in his neck where the trach was) is still open, and gunk will come out of the hole. You have to clean it, and change bandages and he's a mess. He also developed a really bad cough.

We took him to the pulmonologist. The doctor explained to me that Adam has a lot going against him. First, he has chronic lung disease- so when he gets a cold it's hard for him. Second, he had a trach, and apparently a trach destroys some celia (not sure of spelling) but this stuff in your airway that helps you clear away mucous. He's missing that and so he doesn't know what to do with all the gunk when he gets a cold. It builds up in his lungs and he swallows it. He gets an infection and he throws up all the time. This is problematic for so many reasons. This time the doctor gave him an antibiotic for a week. He ended up with diarrhea and a crazy bad diaper rash. This resulted in another trip to the doctor and a cream. He also developed a stomach virus later the next week and my week was laundry filled.

Of course, somewhere in there I got it, so did Philip, my cousin, brother and my mother. These are people who are instrumental in keeping me sane, my home operating and things running smoothly. We we all knocked on our asses.

What a New Years.

Also in there, we took him for a follow up visit to the GI. Adam got put on some new meds to hopefully increase his appetite (he lost weight) and some new formula in his g-tube that is higher in calories.

We also wrote our letter to our school district asking them to evaluate Adam (he turns 3 in May) and early intervention will stop. Later this month we have our 6 month evaluation/planning meeting with early intervention (which they only do doing the day)

We made this appointment and did research over break. We have already gone to 2 feeding clinics respected in our state, seen several different nutritionists, dietitians and 2 different GIs. This particular feeding center is in another state (super complicated with our insurance) and only sees new patients and does 2 hour intakes on Thursdays (when most people work).

We are starting 2010 with hope and an appreciation of our health. Happy New Year to you and yours.

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