The tapestry of the life of a medically complex family

June is here & has already begun to close in as one of the busiest months for getting things done. At the end of the week, we go to a new hospital and the Mitochondrial Disease/Metabolism Clinic for one kid- although they want me to bring along records for my youngest. Last month, about 3 weeks ago, a request for “complete medical records” was made. Today I received records for the ones to be brought along- not one pulmonology note, not one neurology not, not one orthopedist note, none from cardiology… Complete? Not exactly. So tomorrow will be spent calling the medical records department and following up on this & the other request- while I do not have a nurse along for the ride.

The appointment Friday will be tough. I am trying to write a summary list of strengths and concerns. I still feel pretty ambivalent about whether this is truly what we are seeing. At least it is also metabolism- cuz this kid has got some SERIOUS ability to burn calories! Maybe they will have a suggestion that outweighs the GTube recommendation of the GI & Cardiology- maybe they won’t but it’s worth an ask.

The next scheduled appointment is the day when all 3 kids are scheduled to go under anesthesia and have their airways looked at. June 18th will be a crazy-busy day and I have yet to line up hands to hold & rock kiddos pre- & post-op. The appointment may be bound with an in-patient stay overnight- making this a crazy 2-day extravaganza. At least it is at a hospital I 100% trust with the care of my kids so it won’t be as stressful being in 2 rooms if all 3 need to stay.

Closing out the month will be an ACTUAL pulmonary appointment. We have been bundling these with the Complex Care appointments and not really getting much time sometimes. Our pulmo has a great reputation, is easy to talk to and has significant creative ideas on how to treat my kids- but is SO busy taking care of everyone complex in our medical mecca that he is hard to get together with outside his clinic. I will be glad when the month is over and am hopeful the information we get or changes we make will help my kids thrive throughout the rest of summer- & beyond.

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