Summering back in MO?
Another week, another interesting array of scenarios and possibilities for Lydia. Of course, none of them are exactly what I want or are in my ideal time frame, but why would that start now. She has had some big pow-wows with all the Boston big wigs this week and there is yet a true consensus on the next plan of action. They have weaned down the rate of her ventilator but have not been able to adjust the pressure support much and have not made as much progress as they hoped for. Same with diuresis. She is still on pretty much every known diuretic and is a tad smaller but not down to her formerly svelte self. One big dilemma is the question of whether or not she is still getting too much blood flow to her lungs since blocking the pulmonary vessels. It was debated to do another cath and measure pressures or an MRI (not exactly sure how that would give them the info they needed). Today her cardiac attendings feel she likely is getting pretty much the right ratio of blood to lungs and body and that putting a band to tighten her shunt to reduce lung blood flow would cause her to be too blue and her sats too low. They think she just needs more time to recover from everything and slowly wean off the vent and meds. That brings us to the other big dilemma – a tracheostomy. When this was first mentioned last summer by one anesthesiologist, I cringed the very thought. At that time she was able to get extubated and stay off the vent for quite a while. Now, I’m actually pushing for it. She’s been on the vent since Dec. 23 with the exception of 1 week in Jan (the week my flight was cancelled due to a blizzard) and has had to be on super high doses of sedation and pain medication to tolerate the vent. They seem to think she’ll need extra lung support for likely another couple of months and she would tolerate this all better with a trach. Plus she still has several more surgeries and procedures and hopefully would recover much faster with a trach. This would allow her to get off all the sedation a little quicker and actually have some normal development time. When she was off the vent from Aug-Dec she mainly was on a hi-flow nasal cannula which she really hated and constantly pulled off her face. Hopefully the trach would be better tolerated and there wouldn’t be as much worry about extubating and reintubating her. Not sure when this would happen as they’ll have to get ENT/pulmonology on board but maybe next week. I’m not thrilled about the idea of her latest accessory but it hopefully would only be for 1-2 years and would be better overall. Most of the trach moms out there were much happier after their kiddos finally got the trach.
The last big dilemma is where to summer. I’ve never actually had to really think of that, but maybe summering again in New England won’t be occurring. While Dr. Jennings seems to think another couple of surgeries and she would have an intact esophagus, the cardiac team seems to think she should wait awhile (no good estimate on how long, maybe 6-8 months) before undergoing another major round of surgeries. If that’s truly the case, then we’re hoping to come back to Children’s Mercy and recover and then probably back to Boston in the fall for the next esophagus connection. If she still had her dreaded spit fistula we could entertain the thought of her actually coming home for the summer but I don’t know if that would be possible with the repogle tube in as we would need constant suction. The irony of sending her to the #1 children’s hospital in the world for a year to overcome her 2 biggest problems only to be in worse shape coming back to MO doesn’t escape me. I feel pretty defeated about the whole thing. Still, maybe some family bonding time in KC, MO even while I’m at work would be good for us all. I don’t know that I can bear the thought of another 6+ months traveling to Boston and the idea of us all actually hanging in the same city does sound more appealing. Now just to figure out the transportation logistics among other things. To end on a positive note, the nurse said this morning she was propped up in her high chair smiling and shaking her rattle at everyone. Not too bad for my little intubated druggie baby.
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