| 100_Percent_Juice |
2007-05-22 06:14 PM |
Off to Philadelphia
Well ive spent the last 2 weeks at renown hospital with my son and now were flying out to the childrens hospital in philadelphia. Elijah has something called hyper insulinism which there are only 100 cases a year in the US, so needless to say I feel pretty special. Basically its the opposite of being a diabetic, your pancreas makes insulin all the time reguardless of whats going on. So your blood sugar goes down to nothing. We never noticed any symptoms due to the fact that the symptoms are...irritability, sleepiness, lethargy, excessive hunger. I mean he is 5 months old, what baby isnt like that. The reason we took him in to the hospital 2 weeks ago was because he had a seisure infront of my wife and I. It was probably the worst moment of my life thinking that my only child was about to die.
Renown hospital basically knows absolutely nothing about the condition so they have just been doing their best to keep him stable. hes been poked and has had more IVs then my whole family has ever had, his blood sugar needs to be tested every other hour, he stopped eating so they had to put a tube in his nose, he would throw up anything we gave him through the tube, the vein in his arm collapsed so fluid filled his arm until it was rock hard, so then they had to sedate him and put a catheter in his groin artery, he got an infection through the catheter in his leg so they had to sedate him and put it in the other leg, due to antibiotics and other meds he has been throwing up all day weather we try to feed him or not. Currently he has an IV that is providing glucose to keep his blood sugar stable and then a second IV to provide protein and other things.
We have been trying to get to the hospital in philadelphia due to the fact they are the only hospital in the country that knows what they are doing and can perform the appropriate surgery. We have been unable to go for several reasons: Our health insurance didn't want to approve the $37k flight to get him there, we have been waiting for results on an insulin test that labcorp botched a week ago, then said they would do it again because they still had the samples. Today the doctor came in and said "yeah the lab called and said they didnt have enough of the samples left so they couldnt do the test". It took them a damn week to tell us that LabCorp FTL. So finally the hospital in phili said F that were coming to pick him up, got the insurance to aprove it and so we are flying out tomorrow. My wife can fly with him and I got a ticket on american. I was feeling pretty good that we are finally going to get it resolved until they said to expect to be in Phili for 4-6 weeks. So it looks like I will be staying in the Ronald McDonald house for a while. Just figured I would tell everyone. See you all when i get back.
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