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| Finn's profile shot |
Finn had his G-tube placed on New Year's Eve. He seemed to recover fairly well from the surgery. For the first two to three weeks there was a lot of sensitivity to the surgical site and he didn't like being touched or having his gauze changed or even taking a bath/shower. I'm glad that the tenderness/sensitivity has seemed to die down. He has developed what they call granulation tissue around his stoma (the tube site) and so he has to have the gauze changed twice daily and a steroid cream applied. The prescription actually says to apply the cream three times a day, but good grief I can't imagine doing that. Twice a day is all I can manage. He does 10 to 11 hour tube feeds every night and gets 500 calories. While the tube feeds have gone pretty painlessly most nights, we have had periods of trouble. We had about a week straight where the feed would stop in the middle of the night and we would wake up to find all of his formula still in the bag. This led to him getting constipated, which then leads to him vomiting. It's a vicious cycle. Some nights (depending on the day) I add 100mL (almost 4 ounces) of water mixed with cap full of Miralax and a dose of Benefiber to his feed bag. There are other days where I give him the 4 ounces as a bolus feed while he is watching a show. That takes us about 20 minutes. Thankfully, all of our effort is paying off as he has been gaining weight. His last visit he was at 37 pounds, which is at least a 2 pound gain since he had his surgery. Considering he had only gained about 2 pounds in the entire year before his surgery, this is good progress!
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| Finn posed for a shot of his G-tube |
Other than Finn's G-tube care, he still has his regular breathing treatments that take about an hour a day. And then there is his sinus care. Depending on how his sinuses are doing on a given day, he may need 2 sinus rinses a day and oral antibiotics. Or he could be doing great--like today (knock on wood)--and not need any of that, just his Flonase. That being said, he just finished a one month round of oral antibiotics yesterday and he also had a 5 day burst of Prednisone in the middle of that, too. So, we will take the rest for the next few days until he catches whatever virus it is that Kai has right now.
Finally, as if Finn didn't have enough medically going on, Finn's feet have been a problem for him since his infancy. He either has a CF-related dermatitis or eczema (hard to tell), but we have found that it responds well to a steroid cream--a different one than what we use on his stoma. So, twice a day I have to apply his cream, some aquaphor, and then cover his feet up with socks.
As you can imagine, all of this certainly makes getting ready for the day a long process. It kind of feels like a never-ending marathon. And then we get to start it all over again to get him ready for bed.....breathing treatments, G-tube flushing/set-up for night feed, gauze change, feet fix, and then all of the other things that a normal little boy has to do (eat (take enzymes with that), get dressed, brush his teeth, back his backpack) and of course, I'm still juggling the two other kids while helping him through all of this. It honestly feels like we're never going to get out the door some days! At least he has this awesome wiry-texture hair that has a slight curl to it ensuring that it is almost always in perfect place. Yay for not having to brush his hair!!
Other than all of his medical stuff, Finn is doing great at school. He loved celebrating his first Valentine's Day at school. He decided to hand out toy skateboards with a tag that said, "I Wheely Like You!" They turned out cute and he was excited. There have been a lot of delayed starts the last few weeks due to snow and cold and that means that Finn hasn't had a lot of time at school. I'm hoping we are through the worst of it, but you never know here. I'm sure we will have at least a couple more big storms, I just hope they won't impact school as much.
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| Finn dutifully working on his Valentines |
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