Terrified...

So yesterday was my grandmother's funeral. Sam slept later than normal and then came downstairs complaining that his belly hurt when he walked, and he was visibly uncomfortable. I pressed on his stomach which greatly increased his pain. To say at that moment that I was terrified would be the understatement of the year. As a nurse my first thought was appendicitis, and then of course my brain flew threw thoughts of bleeding issues is he needed it removed, it rupturing and him having a septic infection which he wouldn't be able to fight off, etc etc... It was horrible.
I quickly made the round of calls to his doctors. And waited extremely anxiously for them to call me back. Thankfully our primary called back and I was able to speak with her on the phone. She was wonderful as usual. We ran through all of his symptoms, and my fears. She reassured me multiple times that she thought he would be ok as we went to the funeral. She also researched where I should go (in relation to the funeral) if something happened while there. She made sure I had all of her numbers to get her immediately if needed...
We then went to the funeral and she said we could come immediately after regardless of time to see her. And that is what we did. Essentially once we saw her was that it was his colon that was inflammed/irritated. After speaking with her we decided that it was ok to be at home, and again was given a bunch of things to look for and to call her if there were any issues.
Today seemed to be a better day today. He isn't eating much at all, but there have been no explosive stools, and no fever. He has pretty low energy and I feel like he is kind of pale but all in all he is doing better. And Dr V being the wonderful doctor that she is called tonight to check on him, and again said that if I needed her to give her a call.

Good and bad news

This is my bed, notice how the kids are completely sprawled over it, that means we don't sleep when they come in in the wee hours of the morning



Phew it has been another crazy week! I have been playing telephone tag with Sam's GI doctor all week. He started stooling complete water on monday and has been stooling almost every time he goes to the bathroom. This started once I started giving him the bentyl and the prevacid together scheduled. The culturelle and fluorastor have not been able to keep up with him lately. Well anyways had a long conversation with her today and she thinks that Sam has reflux as well as irritable bowel syndrome (IBS). This is good news, as it isn't anything life threatening or overly serious. SHe also believes he probably develops ulcers intermittently and that the prevacid will help prevent that. IBS is a chronic condition that can fluctuate between good and bad symptoms. The doctor feels that Sam's case is pretty severe but is thrilled that the new medication is helping as much as it is. He (until today!) had not cried or complained of belly pain all week. He had been running around and eating and seemed like a relatively normal healthy kid, with the exception of stooling every time he went pee. Unfortunately today he woke up crying with the pain, but I am thrilled that it was such a good week prior to this.
Unfortunately he is at an extremely high risk for ulcerative colitis, crohn's disease and various other intestinal disordes solely because of his immune deficiency. So sadly this will probably be something that he will deal with for life. But I am praying that we can continue on a road to him feeling well, more often than him feeling sick. I am not sure why his immune deficiency predisposes him to all of these problems but I will certainly be praying that they GO AWAY!!!