Today was one of the longer and harder days both emotionally and physically that we have endured since Elis diagnosis. At 7:15AM I had to wake Eli to be on time for his 8AM CT scan which he first needs to drink 2 full powerade bottles with bad tasting contrast over a 90 minute period. The good thing was I was able to give it to him thru his NG tube so he didn’t actually taste it. However due to waking him up early and the large amounts going thru him after it was done it caused him to vomit and during the vomiting his NG tube came out as a result.
As I have said to the DR many times prior to the NG tube being put in and after that it will be ugly and not helpful I was finally proven correct. He didn’t gain any weight and it was just a complete annoyance to me and mostly to Eli as it increased the amount of times he had to go to the bathroom especially at night while the NG tube was in use.
Bottom line was I refused to allow them to reinsert the NG tube which they finally agreed. The problem is that due to the fact that he’s so skinny and very weak they need to do something. So Eli is now back inpatient at CHLA where he will need to be for a good few days as they put him on something called TPN which is nutrients that goes thru his veins and doesn’t need to use his gut and that hopefully will give his gut a much needed rest so that the diarrhea will have a chance now to subside. The reason he needs to be inpatient is that they need to take many blood tests to see what levels he can handle. Once they figure that out he can beezrat hashem go home where he will need to be every night on this TPN which goes thru his central line for the foreseeable future.
Now for the VERY GOOD NEWS usually we need to wait a day or 2 before receiving CT scan results but I think because of all that went on they felt bad and had the radiologist read it right away and BH the scan was clear and no disease was detected. Good start to this round of testing which still has MIBG (full body bone scan) and bone marrow testing left to do. We will have to start getting used to this routine as these few tests and scans Eli will need every 3 months for the next 5 years!!!
Eli finally began the TPN at 10PM after a long day as it comes from Orange County and is so far taking to it very well. He was on this while in the BMT unit during his 23 day stay for stem cell transplant and that went smoothly then so hopefully this time will be the same.
Please daven that this should be the final answer to this dilemma Elimelech Ben Basya bsoch shaar choley yisroel is going thru and that this unexpected stay at CHLA should be as short and helpful as possible.