my little puff ball
After last week’s conference, the consensus of Lydia’s management was a watch and wait approach. They wanted to keep giving her diuretics to get off fluid and see if they could wean her from the ventilator any. Now a week later, she has been stable the past week but no real improvement. They feel they have gotten as much fluid off as they can (with 5 diuretics) and they haven’t been able to do any weaning on the ventilator. So the plan for tomorrow is back to the cath lab to get more numbers and reading from her anatomy and then try to block her pulmonary arteries to stop their blood flow to the lungs. They said they would do a test run and see how she does for 5-10 minutes and if successful, they will put a plug into each one so that her new shunt will be the only thing allowing blood to go to her lungs. She will likely be somewhat blue after this procedure and they expect her O2 sats to be in the 50-60’s for a few days afterwards. (Normal 98-100%, Lydia normal 75-80%) This should hopefully allow her lungs to begin to adjust and heal since they remain very congested with the extra blood flow to them. Of course we had to get the ever pleasant reminder that anything Lydia does is not without risks as she is a high risk for everything especially with her “sick lungs”. I never ask for odds since for me it’s either 0 or 100 but the doc did say it was not even a 50/50 high risk procedure. Still scary none the less and if the point came to her needing ecmo afterwards (the heart lung bypass machine), there’s mixed opinions to whether or not she would even be a candidate. I don’t like having the “what do you want to do” conversation at all.
On an interesting note, turns out her little puffy head and belly are not just all fluid but the rocket fuel 40 calorie/oz formula she had been given finally catching up with her. It’s like eating a box of doughnuts every day and wondering why you suddenly need plus size pants. The did a specific caloric measurement study to find out exactly how many calories she needs in a day and are now adjusting her appropriately. I guess she’s on her first diet. She’s on the low-fat turkey gravy now. Finally up to 17 pounds! Just needs to grow into her weight a tad now.
I’ll be flying out to Boston Thursday and was able to find a medical conference to attend for a couple day so this flight is courtesy of Children’s Mercy and my education benefit! Guess I’ll try to pay attention to the Behavior Medicine conference and learn something. Also going to get a few nights in an actual hotel! Looking forward to seeing my girl. I’ve been missing her terribly and have the grand plans for dress-up and holding.
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