Baby Frankie's Journey: Crazy Gnarly Few Days....

Saturday the 17th was great, Frank the Tank acted no different. We had company over and went to bed around 11. Around 5am Frankie woke for his morning release. Well this morning it came from both ends. Frankie spitting up is nothing new. So common that I was given the go ahead to leave a little after 6 to run up to Peroria IL to buy a new tig welder. Around 730 Alex called me that he was still vomiting. She then called our old Docs at Children's and they told her to turn off his constant feeds for 4 hours and then turn them back on at half amount. So as the morning went on, the tank kept puking, first breast milk, then a water like substance and then a little after noon, blood. Alex got to the ER at Children's about 45 minutes ahead of me. Puking blood not good, being dehydrated also not good. Xrays were done and it was decided he just had a virus and to watch him in the hospital for 24hrs. I became worried about his hernia that we had visited about a few days earlier. I kept pushing for hernia surgery. To fast forward they found him to have an intestinal blockage and the backing up was causing the vomiting. First they pumped his stomach and his bladder to try and release pressure so hopefully it would fix itself. By this point the boy was in a lot of pain and hadn't eaten in 2 days. He would sleep for 10 minutes and wake up screaming. He was swollen, hurting and unhappy. The head surgeon didn't know what to do. There had never been a case like this or read about one. None of his colleges had either. They whole surgery was an unknown. It was to start as an exploratory and then they would correct as they went. There were so many concerns. Where was the defect? Was it multiple or single? Was it corrective? Could he survive the anesthesia with his pulmonary hyper tension? How could they cut without compromising the omphalocele? Was there a dead section that would have be removed? Was the intestine fused to the omphalocele membrane? If they had to compromise the omphalocele they would have to close it back up with a synthetic membrane which would promote infection. The surgeons expected him to survive the surgery but the future was unknown. About 3 hours prior to surgery I cut the gauze that wrapped around his body. He almost instantly started looking better. His swelling went down, his breathing got better, he woke up, and although never smiled, he was wide awake and aloud us to play with him. Surgery was planned for the end of the day so the surgeons could take their time. We sent poor Frankie to surgery hoping for the best. The best is what happened. They were able to cut in under the omphalocele and pull out his intestines. He had scar tissue on them. This was odd as he never had trauma or surgery to make these scars, but they were able to remove the scar tissue that was in essence cinching the intestines. They were able to do this without compromising the omphalocele or intestines. When they opened his up, they said it was almost pressurized the fluid that come out, so since the omphalocele was stretched they were able to put it all back into the omphalocele (not abdomen) and close him up. They had put him on a ventilator for this surgery since he was sedated. He is still on this now, but they are waiting to here back on a heart echo to see if his Broviac, which is a central catheter (IV) is placed correctly. If it is, they will start tpn (iv nutrition)and start weening him off the ventilator. He is swollen like a sumo wrestler now and is hard to see with 8 thousand things coming out of him. But this could be the break we need. If this scar tissue has been there since birth, then his could be the cause of all his vomiting. The intestines may have been cinched, enough to back it up, but not enough to shut it down. If that is the case, more than likely he will be able to tolerate his feeds better, and grow, grow, grow. There is a lot more to all of this, but I want to at least give everyone an idea of what is going on. Thanks for all the prayers and support of everyone. We think everything will be OK.