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Sunday, November 28-- home sweet home

posted Nov 28, 2010, 10:57 PM by Sean Molby

Okay, so again I have been completely remiss in my duties of updating the website BUT in my defense I have had quite a lot going on….

With facebook and word of mouth I sometimes forget that a lot of you are still waiting on these updates for information on Tristan as his site IS how you find out what is going on so I truly do apologize for not getting an update up sooner.


For those that don’t know Tristan is home and recovering wonderfully, this surgery has been the easiest on him recovery wise. Even though it was still a big surgery he managed to pull through like a champ. To recap, this last surgery was a pulmonary artery reconstruction. The purpose was to open up Tristan’s left pulmonary artery so that he could get adequate blood flow to his lungs. Even with his closed PA T was doing amazingly well as he compensated by basically growing additional veins, called collaterals, to supply the blood needed for his left lung to function properly-this was a life saver for Tristan, literally, as often times these babies do not survive or have major complications if this happens and unfortunately, with the Hybrid kiddos, they are seeing more and more obstructed pulmonary arteries.


For Tristan’s surgery they had to go through his ribs and breast bone once again, so this was his 3rd open chest operation, he did have to go on by-pass but it was what they call a warm by-pass, which is much safer. They did not have to cool down his body and at no time did they stop his heart. The by-pass was for his lungs and he was only on it for about 45 minutes. They were able to completely open up his left pulmonary artery and it turned out it was a clot causing all the problems. They were also able to close off several of the unneeded collateral veins he had grown.  They also extended T’s PA so that the blood would be able to flow through a lot easier (his PA was kind of curved so they straightened it out).

His recovery as always was tense and scary however he again managed to not need ECMO and they were able to extubate him within 24 hours of being intubated; and for the fourth time in his life, my son had to relearn how to pump his blood throughout his body. He surpassed everyone’s expectations and was on the floor within 2 days post op and back home in 5. It was rather shocking as we are usually still intubated on the 5th day.


They did decide to keep Tristan on his Lovenox shots and also to add aspirin. So that is kind of scary as being on both blood thinners diminishes Tristan’s ability to clot at all. (Lovenox is more for thinning the blood in his veins and Aspirin is more for thinning the blood going through the arteries) with both his veinus and arterial blood being thinned it makes it very risky for Tristan, but they feel it is the best route for at least the next month or so. After that they will reevaluate and then possible take him off the Lovenox. On top of that he is still behind on his vaccinations so for the next month we will be hoarding out at home in attempts to keep Tristan as safe as possible. We won’t be taking him out in public until his vaccinations are current and I won’t risk him being in a car (there are a lot of crazy drivers out there and even just a fender bender could cause internal bleeding and severe or even fatal complications) to me it is just not worth the risk so we will just stick with our walks in the park and our ventures in his stroller and to and from doctors appointments. So anyone who is healthy will be more than welcome to come by as I am sure I will be close to going stir crazy by the 2nd week! J


This last week we have simply enjoyed the gift of having our Tristan home with us for the Thanksgiving holiday and we could not have asked for anything more. The girls were ecstatic that they were able to come home so soon and things have been fairly normal except for Ella has a slight head cold that she has unfortunately passed on to Tristan. They are both doing okay for the moment. Benadryl seems to be helping Ella and with Tristan we have had to start suctioning out his nose again. He goes back in to see ENT (ears, nose, throat docs) on Tuesday so I will have them look and he also will get his staples out and have a cardiology follow up Tuesday so I will basically be asking everyone what they think we should do for him. He has not been extra fussy and he is sleeping fine-he is just a little more congested than normal.


We are again having problems with him eating L   Grrrrrrrrr…he actually did fine the first day he was awake enough to try but I guess when they took him off all his pain meds he decided it hurt to much to swallow so he just stopped. I have gotten him to take his pacifier again and that took almost the whole week we have been home but eating his baby food has not been such an easy feat. I am hoping it is just the irritation from having the sinus drainage and that it is just a minor setback. We won’t know for sure until he starts to feel better.


Physically he is doing REALLY well. He even pulled himself up to a sitting position from a reclined one as I was holding him; it only slightly freaked me out. He is sitting up better and better each day and his head control is back to normal, well actually better than normal for him. The docs didn’t want me doing much physical therapy until his staples are out so for the most part I have just let Tristan do things that he seems comfortable doing. I have hopes that they will be okay with us starting back up our daily exercises on Wednesday and then Jaci, his PT, should be back from vacation next week and we can really start working on making some developmental progress!


We had a great Thanksgiving, very simple just us and the kids; although grandma and grandpa stopped by later that night to play and have some dessert. Sean and Briah did an hours worth of Black Friday shopping and then Briah got to spend Friday evening, Saturday, and part of Sunday with her memaw, aunt Shawna, and uncle Luc. Then grandma and grandpa came over again today to spend some time with us! By the way thank you mom for helping me clean up all the dishes. J


This week should be fairly uneventful. Like I said we have lots of appointments on Tuesday and then OT on Wednesday but other than that there should just be lots of cuddling and being thankful for all that we have been blessed with so far this year.


I sincerely hope that everyone had a wonderful and family filled holiday.

Thanks again for all the support everyone. I love you all.


 Huge heart hugs and thanks from me and my family!