Status Updates‎ > ‎

Saturday November 20th 55+ hours post op

posted Nov 20, 2010, 8:41 PM by Sean Molby

The last 24 hours has been super busy so I will try to remember all that has happened starting from the beginning…


I finally got to hold Tristan late last night for a little while. It was the first time I had held him since Thursday at 7:45 AM. It felt soooo good to have him back in my arms but unfortunately it was still a little uncomfortable for him so I put him back in bed after only 5 minutes. L


They started feeding him his formula again last night. We started slow as always but he is already back up to his normal feeding amount, however we are running it over an hour so as not to push him so hard. He also was started back on his baby food. He didn’t take a lot. It was mostly to keep him remembering that he actually has to eat in order to get full. We have been making sure he has his pacifier with every feeding so as to encourage him not to just sleep through it and think the food magically appears in his belly! Overall he has done really good but just didn’t take a lot. They will start full OT on Monday and we will also start trying the bottle again so wish us luck with that!!


He is in a lot of tummy pain right now because he is super constipated. We tried doing a suppository but he kept pooping the suppository out before it had a chance to help him poop, so I asked them to give him a dose of miralax which really helped him along last time. Right now we are still waiting for the big poop! J   It is often hard for babies, well people in general, to get back to regular bowel movements after deep sedation during surgery because the sedation puts the bowels to sleep as well and then when they start adding in pain meds it just compounds the prob. BUT hopefully the miralax will help and he won’t have such tummy pains.


He is doing okay tolerating his pain otherwise. He gets oxycodone about every 6 hours and then if he is having a hard time in between we have been alternating with morphine, ativan, and tylenol. Considering, he really is not getting that many pain meds any more especially compared to last surgery.


He is still slightly bloated but it is slowly going down. Hopefully having a bowel movement might help that too. They are planning on switching him back to lasix from bumex tomorrow. They have finally put him back on captopril and digoxin and of course they restarted his lovenox shots last night as well. He will remain on an antibiotic until he gets the chest drainage tubes out (these are what helps drain the excess blood from around lungs, heart, ect after surgery) those should be coming out tomorrow. They pulled his arterial line today so now he only has the one peripheral IV.


They did have to give him another blood transfusion today because his hemoglobin was lower than they liked. Getting that helped boost his sats and he is now only on ¼ liter of oxygen and is still having an oxygen saturation of 79-83. We could probably take him off oxygen but we are going to wait till after they take his chest tubes out tomorrow-it his pretty uncomfortable and he tends to get real upset when they pull them.


The biggest news of today is Tristan is now on the recovery floor! This is the fastest recovery we have had so far and hopefully he will continue to recover phenomenally well!


He has been such a trooper through all of this. I even got him to give me a small smile once-but it took a lot of work on my part! I can’t wait till I see his bright, happy smile again!


Thanks again to each and every one of you for all of the support and prayers you have shown. It is awe inspiring to see how many people are praying for my little heart warrior! He has made it this far in part because of the strength all of your prayers have helped give him! From the depths of my heart I thank you all for that! This surgery was by far the hardest one for Sean and me to deal with. It is easier to let them take your baby back when you can see how much he is suffering but this time T looked, acted, and basically felt really good. So it was super hard to let them take the chance on surgery and risk taking all that away. It is a fear every time we allow them to take him back to a surgery or a cath procedure but this time was the first time I just cried and cried.


I am still very fearful cause so much can still happen that would not be good for Tristan but I am trying to stay positive and be grateful for all the progress he has made in such a short time. He is an amazing fighter with strength far greater than I could ever imagine a little baby having. He is truly a warrior!

Until tomorrow Christy