So I wanted to update everyone, sorry it's been a while, but things have been a tad bit hectic! So It's been just about a week, since Hannah was admitted to Golisano Children's Hospital for her placement of her G-tube peg tube, and was discharged on Saturday. About 2 hours after arriving home, she started with a high fever, and was doubled over in pain. She could barely walk, and barely even get out of bed. We have never seen Hannah in this type of pain. So we called the on-call surgeon, and they assured us it was nothing to be concerned about... Sunday rolls around, and Happy Mother's Day. Hannah is still running a fever, and still in severe pain, and not eating or drinking, and tube feeds are still continuing, so I proceed to call the on-call surgeon once again... They yet assure me it's nothing to be concerned about, and if she worsens, bring her in to her PCP on Monday, and to treat the fevers as we have been with alternating Tylenol and Motrin.
So, now Monday comes, and we make an appointment with her pediatrician, and well BINGO! They hear absolutely no bowel sounds, and send her off to get an abdominal x-ray, and that shows that she is extremely backed up with stool. Which is a major concern for Hannah, because of her history! So now we start a regimen, after 3 doses of miralax, 2 Dulcolax laxatives, she still hasn't gone, and here it is Wednesday and we end up at the emergency room, and they take yet another x-ray, and she is still very impacted so we proceed to another regimine. Milk of Magnesia - not the regular 2 tbsp dosage or what have you... They want her to have a half a cup worth through her g-tube the first night, and the second night! Well hooray, this is a time we actually want to have a pooping party!!! :=) LOL
She's starting to feel a little better.. Her hospital bed got delivered today. Because Hannah is a high risk for aspiration, and is now on tube feeds, she runs an even higher risk for aspiration, especially with the EE diagnosis, and stomach issues... So she has to maintain a 30-40 degree angle while in bed. She LOVES her new bed, and we've never seen her more comfortable than now!
There were plenty of times when there came a point when I said, I think I'm gonna lose it!!! I'm finding out more and more as we go along this journey with Hannah She is such a unique case, such a complex case. The doctors are literally going one step at a time. They can't "plan" things out as they would "typically" with other patients. When Hannah came out of the OR, it took them over 24 hours to figure out what their next step was. They didn't know. All they knew as that during surgery they came to realize, her stomach was worse than they realized. Her nerves were more paralyzed than they had assumed. She has been relying on gravity basically. Gravity isn't her best friend. She has been basically starving and been malnourished. Hannah has a non-functioning stomach. She has severe Gastroparesis, and the nerves in her stomach permanently paralyzed! The plan is tube feedings 24/7 right now, for the next 4-6 weeks. 40 ml / hr - 320 ml over an 8hr period - continuous feeds. Because she has a "non-functioning" stomach, slowly over time, like with the next 6-12 weeks, she's going to solely rely on tube feeds only, which means we will start weaning her off of her foods by mouth.. she will be able to drink almost anything non-carbonated though.
The plan is, the next step will be in about 4-6 weeks she will be switching from the G-tube peg tube to a GJ Tube which will avoid her stomach all together and will feed right into her small intestine. Hoping at that stage eventually she won't have pump feeds forever, and eventually graduate to Bolus feeds which seems from what I have researched much more convenient.
We still haven't reached anyone else in relation with this ultra rare disease! Please help us and post - share - tweet - word of mouth - post it sticky notes~ anything to help our daughter have a voice, and have her story get heard across the world! Help our story get out there!
Help us raise awareness! Please! This is only the beginning of a long road ahead