Too Close for Too Long

Aug 31st – Day 20 in the hospital. A spacious private room but still less than 300 square feet. Our commute is nearly 2 hours each way so I’ve only gone home twice; once after 10 days and then again after 7 days.    Being home for a short period requires a lot of planning so that I can get everything done while there.  Last Sunday, I went home and got the van to do some store shopping, priced and stocked what I bought and prepped stuffed pork loin and burritos for lunch specials for Monday and Tuesday.  Went home and processed payroll, paid bills, did laundry and bookwork until midnight.  Monday, I got up and went to another distributor only open on weekdays, stocked $2k worth of pop, cigarettes and candy and worked the lunch shift from 10 a.m. to 2 p.m.  After that I hit the bank and post office to mail our confirmation to continue the health insurance we so desperately need right now.  Home to shower and throw my bags back in the car to return to the hospital by 6 p.m. 

The Caregiver’s Day Off

As you can guess, this trip allowed for NO down time or relaxation.  It wasn’t five minutes after landing before he was telling me that he was doing just fine without me there and that I wasn’t needed.  A real punch in the gut after running my ass off for the last 30 hours.  The moral of that whole story is to make sure you allow yourself time to decompress while you are out -regardless of how daunting your TO DO list might be.  You need it. Your patient may not get the same round-the-clock watch while you are gone but they will be fine and they probably need that time to operate independently as much as you need the break.  Lesson learned.  Today I plan to pack up and go home until Friday morning; giving us both a much-needed break before having to spend a week in a hotel room together.  It will be nice to be out but it will be a little frightening being on our own to cope and still in confinement.   

Going into this, we knew that it was a going to be a long process.  He won’t be out of the woods until 100 days after the transplant; maybe longer.  Day 100 falls the day after Thanksgiving.  When we met with the team at U of M, we knew that they would expect us to stay within 100 miles of the hospital for 100 days.  MapQuest our address and Mott Children’s Hospital and you get 102 miles, but ask for a 100-mile radius of Ann Arbor and we are inside it.    In addition, you agree not to leave the patient alone for more than 20 minutes at a time.  I’ve burned HOURS looking at hotels, apartments, VRBO’s and Airbnb houses in the event they require us to stay closer to Ann Arbor.  So far, I’ve booked a house in Dexter (about 10 miles from Ann Arbor) from Sept 10th to Sept 24th; hoping we can get a pass after that.     

Daily Blood Count Charting

This morning his ANC was finally on the chart at .3 – in order to be released it must be over zero for two days in a row.  He’s very tired and his platelets are only 11 so he will receive more of them again today.  They are still hopeful for a release on Friday.  While that sounds great, it just means living in a hotel for a week until our Airbnb is available.    Even with the money gifts we have been given that can go towards that expense, it’s hard to part with over $10k when we already have a beautiful home to recover in.  I have the hotel booked starting Friday night and IV training scheduled for Friday morning.  For someone that isn’t needed; I sure feel like there are a lot of responsibilities on my shoulders.   Asking for help is not my strong suit and while people have been more than happy to offer help it’s still not easy to make that phone call and ask for it.  Maybe practice will make perfect. 

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