23 Dec Recap
I would really like to start off this post with a BIG thank you to Susan, Terri, Kathy, and Amanda at Children’s. I’m not sure any of them will ever read this, but I would be remiss to not mention that their hard work resulted in a very smooth afternoon at the hospital today. So, thank you so much for everything you do. Your work is definitely appreciated.
We started off with a weight check and GI appointment. Keegan was up a touch in weight on the clinic scaled, but the doctor wasn’t impressed, as it was negligible and a different scale than the inpatient one. The good news is he didn’t lose any more weight. As we anticipated, we got few answers but do have a plan for Keegan’s GI problems. The doctor thinks that the simple answer is that Keegan has learned to “hold it”! We noticed he was trying right before he went inpatient with the kidney failure. Evidently when the toxins can’t be eliminated via urine, they try to come out elsewhere, which makes it very painful to eliminate. We are going to try the least invasive way to help get it out – backpressure – by decreasing the hours of his tube feeds and running the same volume at a much higher hourly rate. The theory being if you put enough in there, it has to come out! While we do that, we will increase his colace dose and will have to “vent” his stomach through the g-tube more often (the scan showed a ton of gas in his system).
We will stop the TPN after tonight’s dose and check his weight at the end of next week, with the assumption that it is easy to restart it if necessary. We will offer him some simple oral foods, like dry cereal, crackers, and purreed veggies and fruits. All in all, our GI doctor puts a LOT of faith in us as parents to make the day-to-day calls of how much tube feeds/medications/oral feeds to give him. If we start to see him backslide, we go back a few steps. If it takes too long with no improvement, we will add the oral antibiotic back in also. The downside of this plan is that we’re not at a “happy” stable place to begin with, where we can return if new changes don’t work. But our doctor doesn’t believe in wasting time and is very concerned that we will lose Keegan’s interest in eating orally. We all worked so hard to get him to where he is today, and it would be a great tragedy to have to start that all over. Long story short…this is going to be another long, long process. I was reminded today that the initial estimate of getting Keegan on a normal diet without tube feeds was “by age 5 or 6”, so if you keep that in mind, this is more of a stumble than a setback.
After GI, we went across the hall to the Center for Cancer and Blood Disorders. The nurses there changed the needle in his port (no fun), pulled the blood for his labs, ran his IV immunosuppression, and administered his pentamadine breathing treatment. All in all, we ended up being there about 4.5 hours today.
