Yes, I know it's been forever! We have had so much going on it's been unbelievable and things have been changing by the hour most days, lol.
A few things first... as most of you probably know Riley was in the hospital shortly after we came back from NC. She had yet another line infection. E-coli this time and it hit hard and fast. Thankfully it responded very well to the abx we gave and all was well. We were able to come home after only a week in the hospital. Thank God...
We did finally hear back from NC. Dr. Fortunado was able to call me personally to tell me the results. Bottom line functionally her stomach looks ok. Everything is there that needs to be for it to function basically. He thinks her whole gut dysfunction is due to her autonomic dysfunctions.... Which explains why she dumps one minute and then her gut completely shuts down the next. Any and every little stress on her system or even body in general causes her GI tract to go crazy. He said her autonomic testing that was done was abnormal and this was done when she was not having any "issues"... The only real issue I can't get a straight ensure on that doesn't really make sense is her formula intolerance. That's not an autonomic thing and no one really knows what to make of it or do about it as far as I can tell. Dr. F wants her to have the separate J but Dr. M(her GI here) doesn't. Dr. M wants something done with her stomach to help her be able to eat by mouth better and Dr. F doesn't think it will help her thinks we just need to pursue J feeds. Even then though we still have the huge issue of What To Feed Her! Which really is the MAIN problem. Until we figure that out none of the rest matters....from my point of view anyway. Dr. M and Dr. F need to talk and between both of their horrible schedules they have been unable to do so since we were there last month. This has caused us to still be waiting for "the plan"!
Although they haven't talked, Dr. M and I both feel strongly that we need to try something... He wanted me to try to start giving her small boluses of pedialyte every 4 to 6 hrs. After her IV abx were finished last week and she finally quit dumping she actually started drinking some on her own and doing great! So, on Saturday I tried to start some half strength RCF since this is the only thing she has ever tolerated before and this went along with our "lets do something" plan. Mind you don't forget all she has at the moment is a G-tube. I started giving her 60 cc's of the half strength formula 3x's a day. She didn't vomit or anything so that was good. By Sunday morning my Ry Ry had disappeared and this screaming child appeared. She was a hysterical mess all day. All she did was scream and throw herself on the floor all day. She was completely unable to sleep and even if she did she would wake up screaming... She also stopped pooping as soon as she was given the formula on Saturday. After the 2nd bolus on Sunday I told her nurse not to give her anymore. We let her belly rest all day Monday and even last night she was up screaming and the one goldfish she had eaten was still in her stomach 8hrs later. Today was the first day she was back to her smiley self. Although her autonomic issues were horrible last night. Her temp was in the 101's before bed and all night while sleeping her heart rate kept dropping in the 50's. So, I called to let the GI know today and we'll see what he says about it tomorrow. This was obviously a huge disappointment. But then again we just went down this road and spent 6mo. trying formula's and different feedings and that's what got us to NC.... So, this is why we NEED our "new plan"!!!
Liam is doing good. Everything finally healed from his sinus surgery. He is definitely able to breath better and can actually blow his nose!! So, we are happy we did it. He has still had 2 sinus infections that needed abx in the last 6+ wks but he has actually gone 2wks now without being sick so I'm thrilled and keeping my fingers crossed that it was all a fluke. He has also started OT now once a week and they recommended he start seeing PT too. So now he is getting both during school thankfully, each week. He also started VPK last week. My baby is a big boy now. I miss him.... They always grow up so fast! We shout heat soon about his IEP eval that is being scheduled.
There has been so many more things happen but this is enough for tonight... The rest I will get into slowly. Some of it I still can't even talk about yet. But I will when the time is right. As always thanks to everyone who has been there for us and who always pray for us!