During challenging times, I sometimes feel like everything is just sand slipping through my fingers.
As for this week, Samuel had another barium swallow study/ upper GI done in radiology over in Pensacola. I was worried they would be under-prepared for him. They seemed to realize this themselves after looking at his history. So once we got in there, they called in a speech consult and nurse monitering to be sure we had help if he "misbehaved". After all the apprehension of this test.. he did ok. He only dsated to the 80s.. no biggie and I think it actually helped that he was screaming out in frustration because it meant he got some air in during the swallow portion of the test. Our last tests of this kind have always been weird since they would say he passed for "no aspiration" but yet everyone agreed it was an overall failure for major dsats to the 50s, having to be bagged and resuscitated during the test. It just does not matter if you protect the airway, keeping food out of the lungs, if meanwhile you decide to stop breathing.
The GI portion of the study was a little more telling. They put in a few ounces into his intestinal port and it went right in but started backing out towards the stomach right away. Everything was moving in the wrong direction. They looked for an obstruction but of course in usual Mito fashion there was no actual obstruction..a portion of the intestines was just asleep and needed to "wake up" to keep things moving. Other mito moms have used this term for thier kids motility issues and it fits. Eventually the barium liquid did start to move along but it was slow. Maybe things are slower right now since he is fighting off a double ear infection that just doesn't want to give up. He is on yet another new round of antibiotics for that issue. How many times can we go at this thing..?
When we left the hospital, we had to go get bloodwork pulled and sent to the mito lab in Atlanta, which ended up being a mammoth task. I actually had to carry his little 10 ml glass vile of blood in my purse down to the post office to get it overnighted. I was worried it would break and go everywhere. Pulling out the biohazard labeled baggie in front of a line of locals at the post office was one for the books! Never a dull moment! I was just thankful they got the blood pulled relatively easily..very rare for him!
We are having to switch Pediatricians, so our whole week seems to have become about that change. :( I love, love our Pediatricians on a personal level. There are 2 in the one practice and they both are moms themselves. I do think they are not used to complex kids like Sam.. but who is around here? We live in a small beach community and we are somewhat yokal locals about complicated stuff it seems! I can't believe all the resources available to families of mitochondrial disease up north in the bigger cities. This change of pediatrician came due to new insurance conflicts and so now we are having to leave the Dr. I have had since the birth of my first child almost 6 years ago. I still remember Dr. K popping her head in to check on Bella while I was still in labor. I had not even given birth and she was already getting involved. This is a painful change, but necessary. We have actually long considered a shift to a larger practice but did not want to give up the special relationship we have with our Drs. I mean, how many people can call their pediatrician directly day or night? One of them lives around the corner and actually met me at the ER when Sam was seizing and not breathing well. I have called her at midnight and 4:30 am..and even feeling as badly about it as I did..I needed help. I hate to give that up. But they don't take our girl's new insurance and they don't take the secondary coverage that Sam has just secured which will hopefully cover his nursing care.
So..the bad part was the morning after signing papers to switch we get this call from the new place saying, "We can't take Samuel as a new patient. He is too complex." WHAT?? !!#%%^&^&(&!! ..I was a mess. There are very few pediatricians period, let alone ones that take all the insurance types we now have and have the ability to get us direct admit to the hospital in Pensacola during emergent situations. Then the matter got more complicated when I went from no options to 2 very difficult options that had many pros and cons. My father in law is a physician in the area and had placed calls about why we were turned away and meanwhile my current pediatrician worked on it and came back with another new option allowing us to use them for some things and another Dr an hour away for the rest. My father in law got an affirmative from the place that turned us away which is the big pediatric center around here and really, the best option for the drive time, money etc. The other option would have meant having 2 pediatricians weighing in on everything and longer drive time and the girls would still not have a local Dr.
This felt like a bad episode of house hunters gone medical or somthing..I can hear the announcer:"Did they choose option 1 with the really great access to a board of highly qualified physicians and close proximity to their home that might mean sacrificing the personalized care they have always known..or did they go with option 2 the plan to keep their wonderful primary that could really only service some things for one child leaving the others to drive an hour away and adding one more Dr to the mix?" Well we went with option 1. He was my husband's pediatrician as a kid and is practically around the corner and could service all 3 kiddos. He is the CEO of this big medical center which I am hoping will help if we hit issues such as sitting on hold for like hours for an appt etc or maybe just maybe he will give us an afterhours phone # for emergencies.. It does concern me that initially someone there wanted to keep Sammy out of the group and said that all the Drs had reviewed his records and agreed. However, this Dr said he was never told about our application.
I went for a meet and greet with him yesterday. It was wonderful although quite loooong..over an 1 hour and a half and we hardly brushed the surface. But this Dr. is great with him, very experienced, and best of all..excited about helping Sam. It is weird to want a Dr to get excited about the stuff in your 3 phonebook size case file, but then again.. you need him to be keenly interested if he is going to help. He is very concerned with sam's ongoing ear infections leading to other "crash like" symptoms. He suggested we look at changing from the beefed-up 24cal/oz formula he is currently getting 19 hours a day to a normal breast milk level of 20 cal/oz of formula. He said Sam's intestines are having to pull in more water to dijest the 24 cal formula and then it dumps it out as liquid after long periods and he has then lost those fluids which compounds the metabolic issues and does not help him gain weight.
We seem to be on the same page on other concerns as well about the origin of Sam's issues and how cognitively Sam seems very appropriate right now. I don't discuss it much but it has long been our main concern that Samuel's condition is really not genetic but likely secondary to inutero events of a hypoxic nature that led to a chain reaction effect on a cellular level causing mitochondrial dysfunction and covering much of the symptoms. We agree that the Brain is the "one ring to rule them all" as he put it. He wants to know what later MRIs might indicate and honestly I can not recall if we had MRIs of the brain beyond the ones done within a few weeks of birth. Then again investigating this further may really not change anything about how we treat and manage Sam's condition.
This week, I was thankful for time to watch the girls ride their bikes. It won't be long till Bella gets the training wheels off. I am happy that spring is on the way. Sofie is loving gymnastics. It is the one thing we do extracurriculur and has been a good outlet for her..it is all hers and she needed that special activity. I was thankful for my mother in law, who helped me with the girls a few times this week during Sam's appts. For my mom who is always there and who knows that a tupperware container of some ready made chili was just what I needed after a long day and no energy to cook. I am thankful for Isabella's 6th birthday this next week right before Samuel's. What a big girl she is now. I am thankful Sam got through such a long day Monday and for getting through a few hard nights with bradys.
I am praying for everyone to stay healthy and uneventful nights for Sam. He has to go back to the Dr next week and I am worried that surgery may be the only option for the ear infections. For Sam, no procedure is a small one since he has to have general anesthesia and be intubated. I am thankful for this new Dr. and praying that he have clarity of mind and be energetic in helping us with Sam. I am thankful that my sister and family arrived safely for a visit before they move off to Belgium. I have not seen them since last summer and my brother in law has been deployed for all that time. I am hoping this week is a stronger one for Sam and that he can fully rally from the ear infection and transitional GI stuff in time for his 1st birthday and baptism in about a week. We have so much to celebrate and for which to lift up our thanks.