Yesterday we had our first check ups since we left the hospital. GI and Neurology. GI was necessary because her belly has been upside down since United Health Care decided that they dont cover Prevacid anymore for her - I can get it but at $300 a month. We tried Zegerid which is supposed to be equivalent to it. Not working. She has been throwing up her feeds periodically and I am having to run her feeding pump so slow - thankfully she has some "extra weight" from the steroids that still is shedding but she needs more nutrition. The GI Doctor told me that health plan will cover the compounded form of Prevacid, which is so silly because it costs more to do that than just give the solutabs!!! Whatever - they make no sense. Today I will hunt for a local compounding pharmacy and get it done. Neurology appt proved to be reassuring to me. Another sign that we did the right thing. Her normal neuro did not see her @ the hospital - it was an associate. Her MRI did not look good - the brain looked smaller - the space between the skull and the brain was larger than a year ago and it showed that her white matter had shrunken. As it was told to me by one of the internists - her brain looked like an 80 something year old brain - her brain reached its 80's. Another Dr. said she could have possible had a few weeks - 6 months from looking at the MRI - another said her brain did not know what to do anymore in terms of controlling basic instinctive functions. Well, her Dr. said that the MRI is just a picture - we need to look at her and what she can do and that steroids can make the brain seem smaller and shrunken - she was still ON steroids at the time of the MRI. I know he said can, but that is a huge factor in making life decisions. I felt very positive about doing the trach/vent once again. She still is doing awesome. Has not required oxygen once - setting it off because she is redirecting the air and is breathing through her nose which the trach is supposed to bypass that part. She is learning how to make all kinds of noises too. They are quite interesting - a little scary maybe - LOL!!!! We have vent clinic next Wednesday and I expect they will ween some settings so she can do more on her own. If we keep going at that rate, we can get off this thing.
Did I mention that I got all her records from this past stay and the one before when we were there in January and I almost fell off the chair when I read the reports from January. The ER did an XRay on her chest for her heart it showed that she had pulmonary edema, pneumonia in both lungs and called for pulmonary care. I had kept saying I heard her gurgling and she would not drink her bottle or take her pacifier (it is in the reports). The resident told me that the chest x ray was clear and maybe we should do a swallow study to see if she is unable to swallow. I refused the swallow study because she was still eating her meals by mouth at that time. Apparently she had pneumonia in January along with the complications from the ACTH and the focus was so much on neurology and cardiology that somehow the chest and the ER report did not get taken into account. So basically Megan's ordeal was avoidable if she would have been treated in January. Untreated pneumonia - uh anyone would have problems, dont you think. I thought to myself I cant imagine if we would have decided to not trach her and let her go peacefully in the garden(one doc suggestion) and then I would have read those reports. I would have felt like I killed my daughter. I could not imagine how I would be able to live with myself for not reading reports first. Confirmation to follow my gut - always. And read everything and ask to see EVERYTHING even more than we did no matter who you might piss off.
Today we are having a birthday party for Ryan. He will be 7 on Thursday. Can't believe how big he is. He was just my little baby too. He is still the best snuggle buddy ever and we make that part of our day every day. We are just having his best little friends that he plays with on a regular basis - none of the big party where you invite the whole class. It is 90 degrees out so we are having a little pool party. Meg might have to sport a bathing suit!!!