If it weren't happening to me, I wouldn't believe me either!

As if Chromosome 22q11.2 Deletion, von Willebrand's Disease Asperger Syndrome, severe allergies (x2) eczema (x2) and asthma (x2) and some unidentified IBS-like thing weren't enough, Kael has been diagnosed with dysphagia, silent aspiration, and GERD. Now, they have very little if any clinical evidence of the GERD (gastroesaphageal reflux disease), but they are using that to explain the dysphagia and the aspiration. Nice, huh. He has a feeding tube in his small bowel (NJ tube) that has to be on a slow continuous feed. If he pulls it out (what almost 5 month old wouldn't) it has to be replaced with x-ray at Primary Children's. We spent almost 4 day as inpatients at Primary Children's with no significantly new information. The GI doctor who has never actually seen Kael (he has speken with a doctor who has consulted with the NP we regularly see) has decided he doesn't need to see Kael, exam him or scope his GI tract to determine what is going on even though he himself said that he has never seen a baby with GERD bad enough to be sent home on NJ feedings. He has also determined that the GERD must be caused by a formula intolerance even though Kael has had these symptoms since birth and has only been on formula for 2-3 weeks. Way to go, Captain Clever! Ever try TALKING to the patient (or his parents) for an ACCURATE history or symptomology? Now, I am not saying unequvically he is wrong. I just think I would feel better about it if he had actually examined Kael and done some tests that at least sort of indicated GERD before he vehemently backed his diagnosis.

So, needless to say, things ha ve been crazy and I have been stressed. My sainted mother took off work and drove 4 hours with my sainted father to help with the other boys, etc. And my very sainted little sister helped the weekend before my parents got here and a few days after they left. It is hard to do anything with a crabby baby. It is REALLY hard to do anything with a crabby baby teathered to a feeding pump! LOL! So, with awesome family and friends, we are getting by. Seriously, my mom, dad and sister folded about 3 tons and washed and folded another 2 tons of laundry and helped clean the house in general as well as paying loads of attention to the big boys so that even after we were discharged, I could tend 100% to Kael and get him settled into a routine at home.

Although things are still far from where they need to be, Kael is starting to slowly gain weight. He is up to the 6th or 7th percentile (catching back up to his height at the 87th percentile) and he sleeps ALL THE TIME. (He used to sleep 7-10 hours out of 24- newborns are supposed to sleep 20 out of 24.) Just keep praying we can figure this out, the sooner the better!