So I realized, because of his hospital admission I never elaborated on Halloween or put a picture up of Jaxsons costume. Well, there isn’t much to elaborate on. He didn’t feel well that night and so we were only out trick-or-treating for a little over an hour before we went home and went to bed. During the time he was trick-or-treating, he was still a little uncomfortable with it all and didn’t like going up to strangers and seeing everyone dressed up. But him and his sister were the cutest things ever!
Anyway, he was discharged from the hospital on Saturday November 5th. At the time, he was fighting a line infection, an upper respiratory infection and anemia. He came home on antibiotics for the line infection and he will get his last dose tonight. Hospital discharge with a kid needing medical care at home is much more of a process. In any other case, when the doctor says you’re discharged you sign paperwork and get out of there. Not us. We were discharged around 9am but didn’t end up leaving until 4pm. That’s because since Jaxson is on TPN and can’t go without it, we have to wait until his home pharmacy can mix it and usually have it delivered to the hospital- this typically takes a few hours. So we got home, get our delivery and what’s missing- his antibiotics. I start freaking out, first thinking oh my goodness he’s going to miss a dose, then remember he got his last dose for the day at the hospital. So I call our home pharmacy and inform them thinking it’s their fault. It wasn’t. Whoever did our resumption of care paperwork at the hospital only left all previous home meds on there and didn’t add the new antibiotic orders. So I call the hospital and tell the physician that they need to fax the antibiotic order to our pharmacy because he needs his dose in the morning. Long story short it was a hassle that I shouldn’t have had to go through. I ended up going to the hospital by our house in this case, because he had a high fever and a central line and I didn’t feel comfortable making a 45 minute drive, not to mention I don’t have a car and had both babies so getting there is much harder. Lesson learned yet again.
That following Wednesday the 9th we had a follow up GI appointment. He gained another pound. 28 pounds now! We both made the decision to keep him NPO (nothing by mouth) because he’s not interested in eating & is actually thriving without it. I have probably already been told this, but she informed that he has no ileum & that’s one of the main parts of the digesting of nutrients. Here’s a basic rundown on how the small intestine works to digest: “Duodenum is the first and shortest segment of the small intestine. It receives partially digested food (known as chyme) from the stomach and plays a vital role in the chemical digestion of chyme in preparation for absorption in the small intestine.” “The function of the jejunum is to absorb small nutrient particles which have previously digested by enzymes in the duodenum.” “The function of the ileum is to absorb vitamin b12 and bile salts and whatever products of digestion were not absorbed by the jejunum. The ileum has an extremely large surface area both for adsorption (attachment) of enzyme molecules and for the adsorption of products of digestion.” Jaxson has his duodenum and most likely his jejunum but is missing his ileum. I believe this is also why his stools are so acidic (the ileum is suppose to absorb most of that). This also explains why he would dump (which happens when food moves too quickly through the intestine) so frequently and couldn’t gain any weight from food. So we will still keep encouraging oral stimulation by foods (i.e. Letting him lick chips & various other foods, touch food, include him in every meal) so that when he does get his transplant, the transition from not eating to eating is a little more easier and “normal.”
As far as the anemia goes, his GI doctor had me make an appointment with the hematologist to get further testing done, and in the future she may possibly scope him again.
On November 10th, he had his regular in home speech and occupational therapy. Speech was first, and it’s only her third time coming, so Jaxson is still a little uncomfortable with her. She’s working on more verbal skills with him, more signs and trying to get him to communicate with cards. For example, we have some cards of basic things he uses or wants and since he’s non verbal (for the most part), we’re trying to get him to communicate with those. If he wants to color, he’ll bring me the card with a coloring book, if he wants a movie, he’ll bring me the card with a movie on it and so on. We’re also working on getting him a device to communicate which will essentially be the same thing as the cards but in tablet form.
OT came, and he’s a lot more comfortable with her so she’s actually able to get him to work with her. She’s having him bounce on a peanut ball, touch different textures, color, and sign words- which he signed “all done” for the first time ever yesterday!
On November 11th (today), he had an appointment with his PCP- a consult for autism. When he was about one, I had some concerns and brought them up with his therapists at the time and they told me he was too young to tell and chalked it up to him being developmentally delayed. So since then, I’ve put that at the bottom of my list. Recently, seeing how much he regresses, how he clings to certain things, and how he’s non verbal among others, my concerns have come back. So she asked simple questions about his development and personality and determined that he has some risk factors. She will now work on getting him an evaluation either at the hospital he normally goes to or Phoenix Children’s.
It’s been a busy week for us and we are looking forward to a relaxing weekend at home. 🙂
If anyone feels compelled to help us during the transplant you can do so here https://www.youcaring.com/jaxsondahl-681028
Thank you so much!