So things have been going pretty well with Jaxson lately. The ethanol lock in his broviac everyday seems to really be helping in killing any bacteria as he has not had a line infection since December! (For awhile he was getting infections almost every month.) His red blood cell count has finally stabilized and will hopefully remain that way for awhile. His labs this week showed low white blood cell count & low platelets; that is either from the portal hypertension or is just simply be because he’s currently fighting an upper respiratory bug. Either way he is still acting normal, and its not a big concern right now. The liver biopsy taken a couple weeks ago showed scarring of the liver related to the long term TPN use, but it isn’t any worse than the first biopsy taken back in 2014- so thats a good sign. His  liver enzymes are high, (again due to long term TPN use)- back when he was mostly tolerating feeds, his liver enzymes were more stabilized and so his GI doctor thinks he could really benefit from some small formula feedings. To put into perspective just how small, she ordered 10 mLs over two hours 3 times a day. 10mL=2 teaspoons. 30mL=one ounce. So, he will get a total of one ounce of formula per day. I will have to place an NG tube again, which he won’t like at all, but I think this is a step in the right direction for now.

He had an endoscopy today, it was a short 30 minute procedure. Because he’s older now and more aware of whats going on, he got really sad when I put him in bed and the nurse started rolling him back to the room. So I was able to be in there and console him while they put him to sleep. Im glad I was able to be there for him, but it was really hard on me watching him go under anesthesia. Anyway, the procedure was done shortly after that and once he was awake I was able to be with him. He stayed in recovery about 30 minutes and then we were on our way home. His doctor said everything looked really good & she didn’t have any concerns. Finally- nothing but good news lately 🙂

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Thats about all thats been going on lately, like i’ve said its been very slow and steady around here (which is absolutely a good thing). He’s on spring break next week, so we’ll be hanging out together all week and hopefully doing some fun stuff. 🙂

Again, if you would like to purchase one of Jaxsons shirts or simply donate, you can do so through our booster campaign. We only have two more weeks to reach our goal, so please share the link on any social media! Anything is greatly appreciated.


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