This week Sam and I returned to my old Florida Gator stomping ground for a consult with Sam's surgeon about concerns relating to Sam's GJ tube and the state of his gastric function. We were graciously invited to stay the night before the appt. with a family we met along this mito journey. Their son is only 2 years older and has the same diagnosis as Sammy. Although every child presents differently with this cellular neuromuscular disease, Nate and Sam seem to have much in common. There have been moments listening to their symptoms or history that I can hardly believe the simalarities but even stranger is to know we have shared quite a few Drs over our journey. They were diagnosed by the same Dr., out of state, and shared pediatric specialists and this particular pediatric surgeon. Strange, Eh?
We left home at noon last Wednesday right after I gave Sam his mid-day medications. He slept most of the way with little issue, but around 5 pm when I was almost to Gainesville, we stopped and I vented his stomach with the catheter. It was no shocker that all of his meds came back out of the stomach, despite it being over 5 hours since they were given to him. This is precisely how we struggle with Sam's gut function, not to mention the pain and effects on his weight gain. We have been seeing a GI that we love in Atlanta, but I could not help feeling like we needed more ideas in the mix, not to mention his current tube was the wrong size, breaking down and leaking. It needed to be changed out and the tissues around the stoma needed to be examined as there had been some question that it might be migrating gastric tissue and not just granulation tissue.. something we routinely tackle with caring for a G tube site. Where have the days gone when dealing with a scrub on the girls' knees seemed significant.
We arrived in time to enjoy a dinner with my friend and first employer, Lynda. She took us to dinner in this great neighborhood steak and fish restaurant. Sam was actually in great spirits and other than doing typical 2 year old behavior at the restaurant (cue visual of Sam throwing crayons on floor and loudly saying "Hi" to passerbys), it was alot of fun to catch up with her. We then headed over to our fellow mito mom's home for the night. I can't possibly communicate adequately how much it meant to be welcomed into their home when we hardly knew anything of each other. Their kindness was incredible and I feel far less alone on this journey having met this sweet mom, Amber.
The kids quickly became acquainted and Sam really enjoyed playing with them. He was quiet and was definitly out of his element but it was such a normal setting of play for him, with noone hovering too close. There was something incredible about watching Sam interact with another little boy and for him to witness that someone else has similar medical needs. I really enjoyed catching up with his mom on all that they have learned throughout their Mito roller coaster ride. She had insight into various medical clinics and physicians in other cities as well as alternatives and trial and error discoveries we had yet to encounter.
We made this trip in hopes to also open a conversation with this surgeon about a enterra therapy he is doing on kids, that is incredibly rare and not offered in other health settings. Sam suffers from delayed gastric emptying and slow motility in general. Since learning to eat, he displays hunger and excitement for food, only to find himself saited really early, refluxing food from his vented tube, writhing in pain and unable to move past a small portion size of anything. This is increasingly hard for him as he has made such strides with oral eating. He experiences pain, bloating and constipation. All of this is frustrating after he worked so hard to develop safe swallowing skills.
Furthermore, Sam has the preference to slip into gut shutdown during illness. When severe shutdown happens, even bypassing stomach with GJ tube to the intestines is not the best option but was a bandaid. We then still had to get admitted at times when Sam has had to have a central line in getting over the hump. My greatest fear is that our inability to use his gut leads to needing central lines or a broviac, ports to pump TPN through to his heart for his only nutrition. This can carry risk of line infections that can be fatal. For the last year and a half we went to a GJ tube for all feeding and although he had tremendous improvement on so many levels with this measure, we still dont get to advance oral feeding like we would like.. so we hoped to learn of other options.
At our appt this Dr talked to us about another option. We discussed placing a temporary neurostimulator or gastric pacemaker to stimulate normal peristalsis or motility. The best part to this option is there were few drawbacks and we would get a few weeks to figure out if a permanent one would be worthwhile. In this procedure, probes would be screwed into his stomach lining and threaded out the stoma to a box taped to his abdomen. Sam's friend Nate was the youngest in the US to have one and we share that same Dr. I felt convinced that this was an opportunity to try something positive to preserve more gut function and open new doors for Sammy. What a thought to imagine we might get to where we could eat by mouth by day and only need pump feeds at night. We agreed to the procedure and he was admitted on Thursday for the Friday surgery, which should be outpatient but since Sammy is unpredictable and complicated, they figured on watching him more closely. This was a first step in a new frontier for us. More on this in the next post...
This was my brave Sammy on his way down to the OR..