We have officially been home for a solid week and several people have asked how things are going. It’s good for me to stop and recount what’s gone on so that I’ll have it down the road; my memory is not what it once was!
Little has adjusted well to carrying around her little bag of medication; I have been pleasantly surprised. Her mother, on the other hand, has had a harder time! There are so many little steps that have to be taken when dealing with her medicine and I keep messing it up! There are little clamps that have to be shut before we unhook the tubing and we have to unhook the tubing every time she changes clothes. Once the tubing is hooked back up, one has to re-open the clamps so the medicine can be delivered to her heart. On Monday we went to pick up her siblings from camp and I noticed Little looked pale but I didn’t know why. All of a sudden as we’re standing on a hill with all the other families, her bag started beeping. Panic! Turns out I had forgotten to un-clamp the clamps and she’d been without medicine for an hour. Everything turned out fine and I’d like to say it was the only time this happened all week. Truth is I’ve heard that alarm three times now! Hopefully our second week at home will be much quieter.
A harder adjustment has been the requirement for daily baths because of the PICC line. Little absolutely hates getting baths and this change has added a level of… joy(?) to our week. Added challenge? Two wounds that dictate a large part of her body that is not allowed to be wet! It’s almost a game to try to figure out how to get her clean without too much screaming and with keeping her arm and shoulder dry. Music has helped make the time go more smoothly; the soundtrack from Sing has been a great help.
Lastly, sleeping has been the hardest thing to come by since coming home. The sleep medication that Little has taken for years affects her heart and so they had to take her off of it. When we left the hospital they had not put her on any other sleeping aid and so our first nights home were restless. We had a follow-up clinic visit on Wednesday and I announced to a room full of doctors that their top priority was to figure out how to help my daughter sleep! She had been up at 1:30 AM each morning which meant that I had been up since 1:30 AM and it was not sustainable. It took until Friday for everyone to get on the same page and a prescription to be written.
Now it’s Sunday and I have to tell you, Little is still not sleeping well. It is crazy to think that my daughter needs a new heart and my number one prayer request is that she will sleep! As everyone knows, sleeplessness affects every element of life and it is hard for me to be a good mommy and wife when I’m having such a hard time focusing. And then there’s the whole “remember to un-clip the clip so your daughter gets the medicine she needs to live” thing! I plan to call the doctor first thing tomorrow.
KB and Bubba had a great week at camp. FCA comes together with five churches here in town to do a camp the first week of summer. KB focused on basketball while Bubba played baseball and were both encouraged in their walk with the Lord.
We live down the street from the neighborhood pool and the afternoons have been an opportunity for me to grow (as if I need more of those). I have had to let KB and Bubba walk to the pool by themselves more than once since I needed to be at home with Little, which has meant many prayers on my part and the opportunity to prove trustworthiness on their part. So far so good.
We have no plans for the rest of the summer and I would covet your prayers for our kids. We had to cancel all travel plans because of the transplant list and I need to think for our weeks together. Also I would appreciate prayers for my motivation to live each day well. I know that sounds dramatic but I find myself sitting, reading a book, and waiting for the next shoe to drop. My house is a mess. I have a to-do list glaring at me from the counter. All three of my children need me to be their mother. Please pray that I’ll be faithful.
And so we’re heading into week two… This week holds three dentist appointments, a home nurse visit, two psychiatrist appointments, and another follow-up trip to Denver. If we make it through next week, I’ll let you know how it goes!