What a crazy day! During my drive down, the check engine light started flashing, which is exactly what I wanted on this rainy morning when David was leaving the room for some field trips. David was still sleeping at this time, and being about 20 minutes out from the hospital, Adam came and picked me up so we could hopefully see David off.
Shortly after we arrived, the anesthesiologist entered his room to go over the plan for the day. David would be transported to the OR where he would undergo sedation. After he was sleepy, they would place a breathing tube and then bring him down to imaging for his Meckel scan. After that was complete, he would go over to MRI for his quick brain followup MRI. Once he was finished, he’d go back to the OR where they would extubate him before bringing him back to his room. We have seen this anesthesiologist several times at this point (honestly, I think we’ve met them all), so we had no questions as their plan seemed fairly straightforward and David has always done well.
After David left, Adam decided to go see what he could learn about the vehicle and whether any shop would be available to look at it. I figured we may want to see which codes were being thrown first, and maybe it would be as simple as replacing a spark plug, which is what I found on some forums. It turns out, that’s exactly what needed replacing, and Adam and his friend were able to get that done and get it back into good working order!
While David was in his procedure, and Adam was off fixing the vehicle, the hematologists stopped by to talk about David’s MTHFR gene (I know what you are all thinking 😝 – someone clearly had fun creating this abbreviation). One of the labs that was drawn for this transplant evaluation process was the MTHFR gene, which it turns out David has a homozygous mutation. Upon reading about this, it can cause your blood to clot too much. With David’s issues from his cath procedures and needing lovenox to break up those clots this made sense. However, the hematologists ran another test to his homocysteine levels, and this test came back normal. They said this means that although David has a MTHRF (pronounced M-T-H-F-R according to them) gene mutation, it is not actually causing him to have a clotting disorder, and it is not an issue that would cause them to want him on anticoagulation. This was reassuring that it is not an additional thing David will need to deal with.
A few hours after leaving, David finally came back – and he was fussy. They said he wasn’t fussy until he arrived back into the room. He apparently likes moving and his field trips, but does not like when his scenery does not change. He seemed pretty tired, and wanted some rest. However, OT and speech saw him in his room and awake and came in to try some therapy. Needless to say, it did not go well. David wanted no part of having to work, so it did not last long. OT cuddled him instead, that is until David filled his diaper. Then he was finally able to get some rest after being cleaned up, but he still had some gunk stuck in his throat. He missed his morning respiratory treatment, so respiratory eventually came to try to clear him up. However, then he started desating, so he ended up back on oxygen again. I think he needs to get some fluid off his lungs so he can breath easier again. However, his kidneys are quite happy and back down to normal BUN and creatinine levels.
As for his results, David’s meckel’s scan showed no meckels. Here’s a link with a little more information about this scan: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/meckels-scan-for-children. David’s quick brain MRI also showed a stable image from his last MRI. This means there has not been any more bleeding! Some of the coloration had changed, but the neurologist likened that to a bruise elsewhere on the body, and how that changes color over time as it heals. David will need repeat MRIs in the future to confirm that it is still healing and no new brain bleeds, but it will be up to neuro-surgery as to when they would like to have his next followup MRI.
Otherwise, David was sleepy or grumpy today. If he was awake, he was fussy, but then he’d fall asleep. At one point, I put him in his mama roo for a nap since he was not settling in his bed. After that, he took a pretty good nap. Although, as the day went on, he was starting to have more of a work of breathing. Hopefully with some diuretics, he’ll be able to breath easier soon.
Most of the transplant work has been done with a couple out standing items. They will meet next week to discuss David. They usually meet on Thursday, but they may meet sooner since everyone should be around. It will be nice to know the decision, along with if they anticipate David going home or staying in the hospital. I don’t think we have strong preferences one way or another, but it will be nice to have clarity of where we can anticipate being long term.
So glad to hear the car issue was so easily resolved – go Adam!
I imagine I would be pretty fussy, too, after having several procedures! It does sound that the results were pretty positive … happy to hear there is no sign of additional bleeds. I keep on praying for more good days and for knowledge and discernment for the medical care givers as big decisions are getting closer …
Glad Adam could get your car in and it just needed a spark plug… Phew. (That’s such an awful feeling, seeing that light!) But it was so good to hear the news from David’s MRI! Hope his breathing gets better. That was a lot to go through! Praying for David and the care team, as they do their detective work with all these tests and procedures, and have their transplant discussions. And thanks, Jess, for teaching me some new vocabulary… I had never heard of a Meckel, not to mention a MTHFR gene! I can tell why they spell it out… 😂 and yeah, who named it that?! Glad there’s a lighter side to health care sometimes!