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!
I’ll be praying for you sweet friend, for a heart, sleep, motivation, safety, fun for the other kiddos, all the things.
Thank you, Tammy. Love “all the things”.
I know the struggles of the clamps all too well however my machines beep immediately with unhappiness. Our facility uses CHG wipes in the intensive care area for central lines and PICCS I don’t know if that could be an option. Praying for you guys!
What’s a CHG wipe?
Chlorhexidine gluconate, it’s a surgical disinfectant
The wipe is kinda like wet wipes but bigger and they wipe down the patient with these…not what you’d want as a bath but it accomplishes disinfecting the skin for the line
Thanks, Becky. Praying for ya’ll. Saw your mom & Andy today.
many things about tomorrow, i dont seem to understand; but i know who holds tomorrow, and i know,who holds my hand
CHG wipes are great but quite expensive. Amazon is the cheapest place to buy them. Becky, When we fly on airplanes we are instructed that in the event of an emergency to put oxygen on ourselves before we help someone else. The reason is because if we run out of oxygen we can not help anyone else. You are going to have to get some help. You should have a case manager or a transplant coordinator who can help you work with the home health agency to have someone help you watch her while you sleep or spend a few hours with the other children. If she struggles with strangers in addition to the home health resource have a family member or friend to assist at the same time. My son has a high functioning form of autism and we also had to find alternatives to sleep medication. Melatonin helped some and is a natural supplement. Turkey and milk have melatonin. We switch to a migraine medication called zonisamide for sleep and to help with his headaches. Local housecleaning agencies often have special discounts or discounted fees for special needs. I think one company who does this is called the Cleaning Authority. This is another item I would even mention to your transplant coordinator. Oh also find out if they have a music therapist you can talk to. They have all kinds of neat ideas to help especially if your daughter loves music.
Oh. My. Goodness!!! So much information … thank you so much.
Sounds like you’re doing a great job! Truly. A Milrinone drip at home plus 2 more kids and a husband. Amazing! For what’s it’s worth, I’ve seen a few family scenarios in my 14 years of nursing. You seem to be doing well, Becky. Lots of ❤️❤️❤️ to all of you!
Becky…thank you for being honest about it all. Your humor still shines through and that is a great sign. God is faithful yesterday and today and he is already in your tomorrow. I know this sounds a bit simple and overused, but lately I have needed to remember this simple thing…one day at a time! Praying for you now!!! Amy