Reposting just in case you missed it and added some new updates
by
, 01-11-2012 at 03:08 PM (4875 Views)
For some reason it say's that this post was deleted, it was still there so i figured i would repost in case any of ya'll wanted to read joseph's story from the beginning. Adding some new milestones at the end Finally getting around to posting his story. Joseph was born on sept 15. Was placed on ECMO 6 hrs after he was born. He stayed on until they found bleeding in his head, they did an emergency PDA when he was 7 days old. Had his repair on day 8. Started having seizures on day 9. Got to hold him on day 19. Also had 10 seizures that day. Bowel obstruction surgery on day 24. Put him on c-pap on day 42. He failed miserably. The dr had never seen a baby do so bad. Went back on conventional vent on day 43. On day 46 he went back to the oscillator vent and his lungs went back to presurgery. Day 73 he decided he was done with vents and extubated himself. They put him on a high flow nasal canula. Day 105 they put in a g-tube. He wouldn't bottle feed. He had severe pulmonary hypertension. Day 160 switched to a low flow canula. Day 168 he got real sick couldn't keep anything down. Day 169 they did an upper gi and found he had re-herniated. Day 170 had it repaired. Day 187 finally got to go home home for 16 days, went back for 6 cause he had a horrible cough that made him turn blue. While there he started having feeding issues too. When he got home he started drinking his bottles 14days later he got sick again, but antibiotics was all he needed.
He is a little developmentally delayed and hates changes to his foods. Overall he is doing wonderful. Had g-tube removed on July 19 he is still on oxygen full time and a med called sildenafil. He has physical and speech therapy 2x a month. .
He had mic-key button put back in on nov. 21 2011, along with a nissen fundo and a hernia by his private area( sorry for the life of me can't remember what the proper term is) This was all done a few days before he was discharged for the third time, after a 5 week stay. He also came home that time without any oxygen And has stayed off He got a cold right away, it started slow, but got to the point where he had to be admitted to the hospital, just for observation, lungs got better, but he caught a stomach bug, got severly dehydrated and went to amarillo hospital for a few days. He has been "healthy" so far since dec. 16. He is on bolis pump feeds and just yesterday went to all day feeds, because he was not sleeping well at all and i think it was from the continuous night feeds and he did so much better last night
He is getting speech twice a month, he says mamma dada and something that sounds like ball and also something close to outside, where he would be 24/7 if he was allowed
He has physical therapy 3 times a month, he can balance real well standing against a wall, but is terrified to take a step. He scoots on his bottom to get what he wants and he's getting pretty good at it too
He is the happiest baby i have ever seen, we isolate him in a room that adjoins our living room with glass doors and everyone is so impressed by how happy he stays all the time even when he's alone