Never a week goes by that I'm not making a call to a doctor, a home healthcare company or the pharmacy. Informing them of some new issue that needs attention, following up on an order for a piece of new equipment, ordering weekly or monthly supplies and refilling medications. It's much like a full time job keeping this child of mine in tip top shape, or as close as we can get him.
This week was no exception. I will spare you the nitty gritty details, but I talked several times with the GI doctor about, whatdayaknow, GI issues. After trials of this and that we finally have things moving as well as they are gonna be. We left unspoken the fact that he's having trouble tolerating his 7ml/hr J-feedings, but I'm certain it's just a given. I also did not bring up the fact that this 2ml/hr increase in J-feeds that the GI doctor initiated last week, was also the exact same time that his system stopped moving anything through...again. There's not much they can do about it, is the feeling that we're getting these days. And I have a hard time truly believing this, maybe because I don't want to believe that this is just how it must be. I would assume it can be frustrating for even the doctors to not know what to do in a situation such as this. I do hope that they care enough to be frustrated along with us. I certainly know it infuriates me and breaks my heart to watch him scream, cry and throw fits because he's not feeling well. He hurts. And it sucks, quite frankly.
I also talked multiple times with the pulmonology office and our home healthcare provider for respiratory supplies. Oh yes, we have 5 home healthcare companies that take care of different supplies for this boy. It's a little nutty. But, I digress.
Wyatt had a pulmonology appointment shortly after our trip to Atlanta. It was a laid back appointment, nothing of great concern in the area of his lungs. (Thankfully!) We were able to go over his most recent sleep study which showed improvement from the last (since having his tonsils and adenoids removed), which was great to see! We discussed his current respiratory support and his need for this to be continued. He has used CPAP for close to 2 years and it has done great things for him. However, it was decided that a BiPAP may be more beneficial and worth trying. So, this week was focused on getting the home healthcare company the paperwork that they needed to be able to get us the machine that we needed. It was so much harder than it really needed to be. Such is life with this particular home healthcare company. But today the new machine was delivered and he is currently in his room breathing well. Success and worth the hassle in the end.
It is now that the week is coming to an end and we're gearing up to celebrate the closing of another event filled year. Another year, a wild ride that we will call the year that was 2010.
Wishing you a Happy New Year!