Heath's Journey 11/29/10

So Heath's MIR went ok. He was hungery but not upset to bad before it. We where the first appt. He ate at 10pm and I could have nursed him at 2am but he did not wake up. By 6 we where at the hospital and 6:30 all checked in, he had fun playing with the toys and hand foam in the wating room. The Dr arived at 7 and brought us back to start all the questions and talk about what to expect. He was able to keep on his own PJ's and keep his blanket with him, it was at this point that he started to get upset and asked to nurse and I had to tell him no and that started the crying. I was brought back with him at 7:30 and stayed with him until he fell asleep with the gas. He cried but it was over fast and he did not have any of the 2nd stage shaking that they told me he may do. I gave him a kiss and by 7:40 I was in the waiting room.

Bill was able to call me at that time and I talked to him until 8:15 so that passed some time.I was told it would take about 90 min before I would be brought back to see him in recovery. At 8:30 the nurse came out to get me and said he was awake and they where done. He was crying and upset and the meds had not gotten out of his system so he was confused. As he woke up he sat on my lap and was pissed about the IV but because of his vomiting history they wanted to push the fluids to get his meds in. After about 15 min of that she took it out and he asked to nurse.

He was happy about getting to eat or the comfort or both. At that time the nurse told me what to expect for the rest of the day. I asked what we would have results and she said "Monday but call Friday afternoon if you don't her because bad news travles fast" !!!! So all night I am on pins and needles about that coment and Bill was upset that she said it at all if she can't tell me the results she should not have said anything.

9:01 The next morning his pedi called. Talk about fast, she had just gotten the news and it is not good. Heath's Mri shows that part of his brain is below the skull on the right side and pushing on his brain stem. She said she would send the results to the nero and I would get an appt in about 5 weeks (they are booked out that far). That afternoon I got a call saying the nero wants to see him ASAP and we go in on Dec 10th.

Strangly I am not upset we may finally have some answers after exactly 24 months (he turned blue the first time over Thanksgiving weekend in 08) I am just not sure yet if it can be fixed and what that means for Heath's future. Pray for him and thanks for reading.
http://www.asap.org/index.php/disorders/chiari-malformation/
This is what the pedi thinks the nero will tell us he has.