First Few Days Home

Duplicated on our CaringBridge site for permanent record here.

April 1, 2021, written by Mama

I thought an update from our first few days home, before everyone is properly focused on the Easter Triduum, was in order!

There have been innumerable joys (for the whole family), but also stress and anxiety (just for us parents).

On the first morning home, Thomas was up and watching cartoons with the siblings, just like the old days.

God showed me that I will have help. Someday I will have to write about some of the good fruits I'd always prayed for and tried heartily to effect but that did not come to fruition until God plucked me out of the home for four and a half months . . . but first I have to figure out why. Am I such an incompetent mother that God needed me actually absent for months to improve some areas of our family life? Anyway, children now do a lot of meal preparation, they clean up after all the meals even without an adult in the room, they take initiative on all sorts of helpful things around the home. On our first morning home, our 10-year-old cooked the entire breakfast alone and she went to bed saying she wanted to do so the next morning, too. Later I noticed that our 8-year-old has now joined his older siblings in doing his own laundry, plus he cleans the boys' shared bedroom daily spic 'n span. There is also more independence in homeschooling than I ever fostered or witnessed before.

After Thomas becoming very withdrawn in the hospital, Chris and I were nearly in tears watching our little boy yucking it up and telling jokes at the breakfast table on his first morning back. I would say that in the first 24 hours home, Thomas talked more than he had in the prior two weeks cumulatively.

Thomas is enjoying all sorts of normal activities for a five-year-old boy.

Playing Legos

Playing Legos

Tired but doing a puzzle

Playing with blocks and cars

Playing piano

Playing ukelele

Painting a solar system

Having siblings read to him

Playing wooden trains

Playing Playdough

Dressing up as a cowboy

Making art

Thomas successfully battled his brother in a sword fight!

Thomas both drove his electric car again . . . and met the neighbor's puppy!

Driving his electric car

Meeting the puppy

Meeting the puppy

Thomas eagerly opened the remainder of his Christmas gifts--all sent by you friendly folks, many strangers because, believe me, we were too distracted at Christmas to buy any gifts for our own children!

Grandpa gave Thomas a sand and water table as a coming home present, knowing that Thomas had fallen in love with the sand and water table Mr. Rogers plays with in one of his episodes.

Both in-home Physical Therapy and Occupational Therapy have begun. Right now we are set up for three visits weekly. It's really a good thing that outsiders evaluate patients instead of relying on parents' reports, because guess who we discovered can crawl?!

Moving Thomas around is, for 18 hours of the day, a two-adult job. From about 6:00 p.m. to noon, he is attached to TPN and his J tube feeding, so he has two backpacks (the TPN one big and heavy) attached to thin little lines attached to his body. One adult carries Thomas and the other adult carries the two bags (filled with pumps and bags of liquid), and very carefully and we slowly transport up and down the stairs. For this reason, it's very hard for one adult to be left alone with Thomas, unless it is briefly within the six-hour window he is on a break off his lines.

Thursday's milestone was our first time needing to leave the house for our first follow-up doctor's appointment. I had to think of every single thing Thomas would or could need during those hours. I realized we would be gone long enough that I had to take along his two o'clock meds, but also that all the blunt syringes I'd been given did not have caps on them. If I pre-filled them with meds, the meds would just squirt out! I called my training nurse and asked her what to do and we brainstormed a quick-fix. Then when I was at our doctor's appointment, I asked for some blunt syringes with caps to keep for just this purpose.

We met with GI and Surgery today in back-to-back appointments and all is well. We have a nutrition plan for the next week. There are many, many doctor's appointments in these first two weeks especially.

It has been very stressful and challenging here at home, and I don't quite know how to express the high degree of fear and exhaustion without being a Debbie Downer or seeming ungrateful.

I will explain that no, there is virtually no home nursing care. I have not been writing about this much, but I've spent the last month applying for Medicaid, Medicaid CAP/C, and Social Security Disability. I've filled out probably 30 pages of applications so far, in various waves of requests. I've fielded numerous long phone interviews (the latest one for an hour on Wednesday), having to rehash to every single agency the minutiae of everything that happened to Thomas, listing all his specialists, all his appointment dates (for the last 9 months), all of his medications, all of his needs, etc. But, ultimately, Chris and I feel there is a serious gap in the system. We really do not foresee needing all the Big and Wonderful Benefits given by this programs months from now. We won't need 8, 10, 12, or 24 hours of in-home nursing care per day. We won't need modifications to our home (although the offer to put in a wheelchair ramp months from now would have been nice because we had to buy our own and install it before this child could come home). What we desire is daily, one-hour nursing visits right now and for a few weeks only.

One of Chris's strengths is working the system and speaking convincingly to people, and he has turned over every rock. Because he works for a major, international corporation, one of his benefits is an advocate who interfaces with our insurance agency and all other kinds of health providers, so Chris got that advocate involved. He's called everyone. This service we're seeking exists but is proving nigh impossible to establish, or to establish sooner than weeks or months away (by which time we won't need it).

Running Thomas's TPN has been so frightening in these first few days, I now feel like feeding him via his J tube is child's play. I was trained for 90 minutes on our day of discharge, then trained again by a visiting nurse for three hours on Tuesday. Another nurse came out today because I was so nervous and I wanted her to watch me. Having to deal with an open stoma into his intestines used to frighten me until I had to do sterile procedures twice daily and deal with an IV that goes straight and deep into Thomas's heart. I could put air bubbles into his blood (deadly) or give him a central line infection (potentially deadly). Just get all several dozen steps of the TPN process correct and he'll be fine! Ha!

(Despite the sweat pouring down my back and fear in my heart while I am setting up the TPN, all the nurses who have trained me say I'm doing an excellent, perfect job. So, at least there's that, but golly . . .)

Also, drawing up his medications is a stress on my mind because a number of these are serious business medications. He's on about a dozen meds given at seven different, specific times per day. I double and triple-check the dosage before giving every single one. Don't flub up.

Thomas needs us about hourly overnight, so we are very, very tired . . . and extremely grateful for our daytime babysitter helping me and for those who are still delivering us meals through our first month at home. We are so grateful.