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August 5th 11PM

posted Aug 5, 2010, 9:03 PM by Sean Molby

***!!! HAPPY 4 months in 2 days TRISTAN DRAKE!!!***

 

Well I am sitting here unable to get to sleep so I figured I would go ahead and do an update since I probably will not get a chance to do one tomorrow.

 

Tristan has his cath procedure tomorrow, Friday, August 6 starting at 9 AM, they do not expect any complications but he still has to be put under anesthesia and there is always a risk with that. It is suppose to just be a basic cath but there is a slight chance they will have to place a stint or balloon the artery that is showing a blockage. It will all depend on if his cardiologist feels that he will be okay until his next surgery without that intervention. The main purpose of this procedure is to get measurements to access when the best and safest time for the second stage of surgeries for Tristan’s condition should be. My own personal feeling is it will be within the week of August 16-August 20, I know it can not be any time next week regardless of what they find because he must be taken off aspirin for at least a week before his second stage surgery and he is still taking that med, so we will have a weeks notice because of that.

 

Even though this is a simple procedure in comparison to everything else he has been through PLEASE remember to keep Tristan in your prayers tomorrow morning and after noon! I will post an update by Sunday evening unless there are major complications that prevent me from doing so.

 

On a lighter note, Tristan is STILL thriving amazingly well. He weighed in at 13 pounds 11 ounces at today’s visit; he is still just over 24 inches in length! He got to see a few of his 4th floor nurses today and the ones that have not seen him in a month or so could not get over how much he has changed. One even made the comment that you can’t even tell he is a heart baby he is so healthy looking!

 

He is doing really well with his oral feeds as well. He averages between 20 and 60 ML each feed (still just the 2x per day) and LOVES the fact he gets to eat on his own, he is all smiles when he is done. We have had to increase his Mylicon by an extra two doses a day because taking food from the bottle is causing him a lot of gas and with the gas some tummy pain; but he is still a trooper and keeps trying hard and improving everyday.

 

His new favorite thing is to fall back on the bed… as part of his Occupational/Physical Therapy we practice sitting up, which he is doing much better at. Anyways, the exercise consists of laying him flat on the bed (or another flat surface) and getting him to grab my fingers and help pull himself up. He was doing super great until he found out how fun it is to make himself fall back on the bed! So now he barely makes it an inch up when he drops himself back down and laughs hysterically. It is soooo cute but not as helpful and productive as it was when he managed to pull himself all the way up! J

 

Despite everything I am beyond thankful for all that we have been blessed with. Tristan is an AMAZING MIRACLE and I can not imagine him being anymore perfect that he already is, half a heart and all! I have to believe that he has fought above and beyond all odds and will continue to do so because he wants to be here with us as much as we want him here. I will continue to believe that he has not fought this hard to stay alive only to not make it through this next huge step. However, that doesn’t mean I am not scared shitless (sorry) and have endless nights and days of constant worry. Every night I have to go to sleep with the knowledge that it could be his last night with us despite all he has overcome. Every day/night until his third stage is a danger and even then a slight danger is always there. I can not begin to express how much he needs and benefits from everyone’s thoughts and prayers and I hope that even as things are going well for Tristan you remember to keep him in mind as these babies are known to have fatal set backs even if everything appears to be going great. It is through the strength and devotion of all our family and friends that has made and kept Tristan so strong. Trust me when I say he knows how much he is loved and cared for. He senses all that every one of you do for him**** PLEASE KEEP IT UP! ****

 

Until Sunday~ Christy

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