i didn't realize that it has been a week since i have updated all of you! i am so fortunate my husband wrote a post, lately i have been sick and stressed beyond belief.
okay quick readers digest update.
12/24 - his arterial line was removed. held ty for the first time....oh how we take that for granted. they removed the IV in his right hand and is on high flow nasal cannula at 7L. i kinda laugh at this but my son is on methadone. crazy! he got used to the continuous fentanyl drip that they had to put him on methadone. i guess you take the lesser of the two evils.
12/25 - great day! held ty all day, he was looking great! they began weaning him off his oxygen and were feeding regularly.
12/26 - Physical Therapy began working with Ty today. it was so sweet! a follow up echo (ultrasound of the heart) was done and a hole was discovered. it was causing blood to simultaneously fill up the right and left atriums. open heart surgery is required. this was a hard day knowing that after all the progress and recovery that we were going to have to start from square one. He was weaned to 2 L o2 nasal cannula and another IV placed in his right foot. he is also on PO (by mouth) motrin and lasix. we stayed the night both david and i to be with him.
12/27 - a cardiac catherization was performed to completely diagnose how and where this hole was located. dr. ellsworth (cardiologist), dr. graziano (cardiologist) and dr. dirby (surgeon) were all there. he was intubated again and put to sleep. after the procedure they came out and told us that they see the problem however it is not emergent to fix. they suggested that we wait to do surgery after Ty has fully recovered. his lungs are still very sick as they had a difficult time ventilating him while in the cath lab. it was hard to see him back on a ventilator and sedated again. since his lungs were so sick they tested him for a list of viruses and bacterias as well.
12/28 - his cultures came back positive for rhino virus (a cold) and an infection in his lungs. they started him in a 7 day antibiotic regimen and changed his right ac iv into a picc line (unfortunately they had just d/c'd his IJ (central line). we all have to gown up when we go into his room. he was extubated today. this time around was more difficult and for a few hours they were debating whether or not to just intubate (he had some upper airway swelling causing moderate stridor).
12/29 -he was able to stay extuabted all night and the stridor began to resolve with some steroids. he is on high flow NC at 9L 80% oxygen. they began feeding him again through his feeding tube. i was able to hold him again!
12/30 - remains on high flow NC down to 6L 60% oxygen. weaning down on the methadone. he slept most of the day (he needed it). BTW ty got mommy sick lol....we were so nervous about giving him something that we caught the rhino virus he had. I have it and now aubrey does too (about to cough on david and trey just so it goes through the whole house and we are rid of it by the time ty comes home.)
12/31 - weaning him off oxygen he was at .2 L today!! woohoo. weaned off of the dex (sedation medication) my baby is awake and playing (well sorta). we are also on full feeds (23cc/hour)
01/01 - we heard the words "discharge" today!!!! we are still a few days away but home is in sight. he also took the bottle for the first time since being in the hospital. he actually didn't even take an ounce but at least he tried and tolerated it (his heart rate and oxygen sats). to be honest i think some of it has to do with the fact they are fortifying my breast milk (not really sure why???) but whenever we have done this in the past he hates it...well could you blame him lol!
not sure if that was very quick lol.....hey i want this for my records too :)
