Well it has been a while since I updated but not much goes on around here on weekends at all. So some good news. A had his blood work done again yesterday and his sodium levels are back down to normal. This hopefully means that the extra 200mls of water that I have been giving him a day is working. He just needed more fluid. This increase in water has also increased his urine output. This is wonderful because it has been low since we were admitted three weeks ago.
A has been having quite a few more blue spells the past few days. Along with this he has been fussy. I thought that possibly his tube was not in the right spot since he had a new one placed last Thursday but they checked it and it was good. Yesterday and today though he has been better. I just hope that he doesn’t catch any of the nasty bugs that are up on his floor. He has done so well so far!
Okay, so yesterday when the team came around to make sure things were going okay over the weekend and to check A out they asked me about the fundo decision. I told them that basically if they brought me the forms for the fundo and it was the surgeon that I wanted I would sign them right away. If it wasn’t this certain guy then I would feel iffy about it all. They totally understood because I have been struggling so hard with the decision to do one at all.
The problem with this, is that the surgeons here do one week rotations. So this week is a female surgeon and then next is another one that I have met and so on. Well with me wanting this specific surgeon can make things difficult as he is not on rotation and it all comes down to politics and stepping on toes. Anyways, the doctor said that she was going to call him directly yesterday afternoon to have a chat with him. I was warned that it might not happen but they would try.
Now why do I want this specific surgeon? Well he is one of the TOP doctors here at this hospital. I have read journal articles that he has written on fundos. I even found a journal article about him leading a team of 25 through a separation of conjoined twins. He is just totally overall impressive!
Now for the wonderful news?! I found out this morning that he is willing to do A’s fundo!!!!!!!!!!!!!!! No date as of yet but this is absolutely awesome for me. I really didn’t think that it would happen this way as the docs told me that they have only seen this happen a few times. See, it pays to do research and be stubborn!!!!
I was also told an hour ago that this surgeon wants a milk scan done. This will be to check for delayed gastric emptying. I have been asking for one of these to be done for over a year now but never was heard. I don’t think he has DGE but it will be nice to know as doing a fundo with DGE isn’t a good thing. So fingers are crossed that all is good.
I got a wonderful compliment the other night from a nurse. She told me that my nickname up there was “supermom”. I asked what she meant and she said, “all the nurses call you supermom….how you could be a doctor, a nurse, an RT, whatever you wanted.” Nice eh?
Okay a small update. I received the results today from A’s wash that he had of his lungs on Tuesday when they did the scope. He has a lot of lipid-ladens in the macrophages of his lungs. In English this means fat. Normally there is zero in a persons lungs however A had 40%. This is huge. So what does it mean? Well it proves that A is refluxing and then aspirating into his lungs. SOOOO I am much more comfortable now doing the fundo then I was even yesterday. The only way that we can give his lungs the chance to heal is to do the fundo.
Now, I spoke with the surgeon tonight and their stats say that there is only a 70% chance that the fundo will work for A. In neurologically impaired children it is lower. Of course there are other risks associated with it as well but we are speaking life or death in this case. Easy choice. As for open or lap he did say that they prefer lap. He said that there is less chance of adhesions and most surgeons prefer it this way.
The other thing that was said, is that they will put in a g tube and take out his gj. This kind of has me very nervous as it has been two years since he has fed into his stomach, not to mention the fact that he had these BIG spells everyday with the g tube feeds. However the surgeon did say that he has never seen a child have a fundo and need the gj tube. I laughed and told him not to say that yet! He did mention as well that this procedure will be a bit more because they will have to probably sew up where his gj is and do another incision for the g tube as the wrap will probably pull his stomach up too high.
As well I was told that A’s sodium is very high and this concerns them because he also has a low urine output of .3%/hour. So over the weekend I am to try and give him about 200mls of water to see if that brings down his sodium level.
I will be meeting with the surgeon that is on next week and have my decision ready. No date as of yet. Keep those thoughts and prayers coming!!!! They have worked for us so far!!!!