Wow, what a week/end. I’ll get into the management of Jack’s ostomy bag shortly, but I did promise a photo of Jack enjoying some solid foods, so I will share now.
Jack had fallen into a sweet potato coma (he very well could have been playing opossum though since I don’t think sweet potatoes are his favorite).
Now, back to Jack’s ostomy and the pain it causes everyone in this house. Jack has been having at least some difficulty with his ostomy since day one. Either he has a yeast infection and it doesn’t stick to his skin well, or he has a skin reaction to the adhesives and it won’t stick to his skin well, or people inexperienced with ostomy bags are responsible for the daily care and reapplication of bags.
Lately, Jack was getting a yeast infection under his ostomy. So bad, in fact that I thought it was skin breakdown so I called the High Risk Clinic at Cincinnati Children’s for some advice. They couldn’t give me any information or tips since Matt and I were following the procedure given to us by Children’s Hospital. The suggestion was made to call the NICU and ask if there were any tips there, but again we were left with the same solutions to clean the area really well, allow it to dry completely and keep trying. So, after about an hour of Jack (and me) crying, we finally got another ostomy bag back on and Jack back into bed.
On Thursday, I received a call in the morning from the wound care nurses office asking that Jack come in for a visit so a nurse could take a look at his skin and suggest solutions for the infection as well as the application of the bag. The appointment was for 3:30pm the same day which was great for me since again, we know I am impatient.
The nurse was great and explained the reasons for all the steps in ostomy care, augmented his ostomy procedures and gave us a couple other ostomy bags to try at home. At this point, we have picked a two piece ostomy bag that has stayed on for 36 hours so far (knock on wood). His skin even seems to be making improvements. However, Jack is still grumpy. He will have about 1-2 complete meltdowns in a day and we can’t console him with any pacifier or any amount of baby swing treatment (he has an uncurable addiction to the swing).
Today, the culprit of Jack’s insufferable temper has shown itself. A little, white tooth is peaking out of Jack’s swelled gums. We could tell it wouldn’t be long until he started to cut teeth with all the drooling and uncontrollable need to put all objects in arm’s reach in his mouth. Once it was apparent that his fits were due to his teething and not a sensitive ostomy site, we are treating with Oragel and Infant Tylenol and he is a rather fun baby again. He is experimenting with his ability to make farting noises with his tongue and finding himself rather hilarious. We are getting a good number of ‘baby belly laughs’ from him.