What a whirlwind! I drove to Boston 2 days ago, after what I thought had been a false alarm about early discharge, and was greeted with the news that Ryan would definitely be going home this weekend!!
Our reservation at the Hope Lodge was to start on the 18th, and there are no romms available until then - that would leave us in a hotel for a week if we were to stay in Boston. Picturing all the things that could happen to carpets, etc, in hotel rooms plus no capacity to cook for him, I wasn't very excited about that option. His nurse told us that most of their patients go home - even those who live long drives away. Since we have reliable transportation, can afford gas, and can recognize problems if they develop, he suggested that Ryan would be more comfortable at home and that we'd be able to cook more easily, he'd get more rest, etc. Ryan jumped at the option. I must admit, it seems a lot more comfortable for all concerned.
Two days to do a thorough house cleaning........
I called a few friends from my church who organized lots of help for us. Sophia and I hopped in the car and hit the road for home just as the Noreaster hit the area. We were at a standstill on the Mass Turnpike for the better part of 2 hours - sometimes literally not moving for long enough that when we finally moved there were rectangular patches of road free of snow where cars had been standing!
About half way home we drove out of the storm and it was free sailing from there.
The experience had me questioning what will happen if Ryan gets sick and there's a storm..... But I'm confident that Albany Med can consult with Dr. Cutler and handle whatever comes up if the weather prevents us traveling.
With many hands making light work, we attacked the place most of Thursday and until around noon today. The place smells like a combination of bleach and a self-cleaning oven. But every inch of blinds, molding, doorways, floors, cabinets and fixtures has been thoroughly cleaned. With the exception of the girls' room. If I'd cleaned that today I would have just thrown all the precious objects in trash bags. So I closed that door and drove away. Since Ryan can easily avoid that room, that's a project for tomorrow.
At Brigham & Women's we got instructions about flushing his line, changing the dressing, checking his temp twice daily, weighing him daily (a rapid increase in weight could mean fluid retention due to liver problems). The long list of medications including antibiotics and antifungals, nausea & pain meds, vitamins, anti-rejection meds, etc. Sophia is going to make an excel sheet to make it easier to keep track of them.
And printed instructions about what to do, what not to do, what to eat, where not to go, when to call, etc. Look out for rashes, fluid retention, fevers, diarrhea, yellowing of the sclera (eyes).
We received bags full of dressing supplies, masks, gloves, IV flush solution, meds, barf bags for the ride home, etc.
The nutritionist will meet with us tomorrow to give final instructions on how to feed him safely and answer our questions.
Today's counts: WBC 4,940!!!! H&H incresing ever so slightly. Platelets 35,000 - the same as yesterday. We'll come back to Dana Farber on Wednesday for labs and an appointment.
Sophia and I loaded up most of Ryan's stuff and the things we had left in the hotel room. We'll go to the hospital early tomorrow so we're there for any additional instructions.
Off to bed for what we hope will be our last night in a hotel room for a long time.....
---Barb
Wondeful news!
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