Lindsey Kaye Lambert

Just wanted to give a brief of Killians story, i created this while i was still pregnant and then got a bit busy and over whelmed after his birth.. my sister runs a blog site and his FB account www.KillianKayne.blogspot.com and CDH Cherub Killian on FB.
Killian was born January 2nd he spent 24 hours off of ECMO then he was on ECMO for 6 days, he had his repair surgery while on ECMO. The closed his repair insicion but after a day or so he had extra blood and pressure in his abdomin so they placed a patch over that. a few days after coming off of ECMO Killian had what the doctors call a "pulmonary hypertensive crisis" Killians SATS got as low as 13 and stayed below 50 for about 3 days. Of course the doctors told me to prepare for the worst and "for me to let them know when i am ready" we all had came to terms with what could have possibly happened, they gave him a 5% chance. I would know when and if the time came to let Killian go... that time never came, and after 4 awful very sad days of him being so sick, he started getting better, his color was back and his SATS were getting better. They had stopped doing tests, but i asked them to draw a blood gas, and it was better, slowly but surely Killians number got better!
Ever since then Killian has had severe pulmonary hypertension.. he has came off the vent twice, the first time for about 3 hours, and the second time for 2 days. He stays around 30% Oxygen from the vent, has been as low as 5% on the nitric, now he is at 10%, and he is on sildenafil (viagra). Killian started having seizures around 3 weeks of age, during a head ultrasound they found blood clots in the arteries in his head probably whats causing the seizures. he has had a couple of positive blood cultures so off and on the vancomiocine and other antibiotics. And you cant forget Killians favorite, his Morphine and Versed drips.
The second extubation Killian did himself, he pulled the tube out so they left it out and had him on the vapotherm canulas.. around 48 hours he started working really hard keeping his heart rate around 200, so they were thinking it was withdrawals gave him lots of PRNs and nothing helped so they reintubated him and while doing an xray to check on the placement of the tube they noticed he had blown a numothorax, when there is a slight tear in the lung and it lets air into the chest cavity, so he got a chest tube for that and is still on the vent.
We get weekly ECHOs of his heart, for the longest time there had been no change, until recently the pulmonary hypertension had shown that it was a little bit worse. plans as of now are to wean him off of his morphine and versed, make sure hes stable with that then try to extubate again.