The arrival of August means the arrival of my new planner and I want to use this new feature I added to help me remember God’s faithfulness throughout the next year. At the top of each two-page spread is this square where I can spend time recalling what I am thankful for from that week. We’ll see how long it lasts, but after two weeks I am at 100% and I’ll rejoice in even that small victory.
Let’s take a moment to recall that we were discharged from the hospital on Thursday, August 2 at noon. As Little would say, “It was so nice.” Friday afternoon Little’s arm began to swell, Saturday at noon she had a fever, and Saturday by 2:00 PM we were back in the emergency room with questions about rejection and a swollen/painful arm. This picture shows it as it first began to swell, but by Saturday night her entire forearm was red, hot, and twice it’s normal size. Tests showed no change in heart function and blood cultures showed no growth, so it was decided that the infection was, in fact, limited to her arm. After two days of antibiotics and great improvement we were discharged once again.
How did I see God’s provision in that little escapade? Well, Marlice just “happened” to still be here with Bubba and KB and so we were able to head straight to Children’s with no drama. So thankful for Marlice’s visit with us. She brought laughter and fun as the children transitioned back to home and lightened the load on more than one occasion.
This first week out of the hospital post-transplant has been anything but normal. Little’s appetite is, well, … little. Between the weeks of Cdiff and the twelve medications that all include nausea and vomiting as possible side effects, her tummy is a bit sensitive. We have been trying to learn just how much she can eat and when to be okay with her not eating. We have decided milk is just not an option in this season and we have had three sick-free days. Fingers crossed for three more!!
We’ve been learning about eating habits and building new habits that involve medications. I got a fancy and fun pill box to help and a new app on my phone for an auditory reminder. So far doses have changed both Monday and Thursday because that’s the day they test the levels in her blood and she hasn’t met her goal yet. Soon things will even out and we’ll be able to find more of a rhythm. Some of the medications will fall off; the first to leave us finishes tomorrow!
Physical Therapy will be a regular part of our life here. Little went twice this week. The first day she worked super hard and by the afternoon her legs were giving out as she walked. Emily, the PT, took things a little easier during the second session of therapy.
We had our first follow-up clinic visit on Thursday morning and Little got a double thumbs up from the nurse practitioner and the cardiologist. They gave us permission to drive home for the afternoon so that I could train the woman hired to do my previous job. Little got to spend the afternoon at home with the family and even got to see a couple friends that stopped by when they heard she was around. I walked Mindy through the job ins and outs and then grabbed my family and we had dinner ALL TOGETHER for the first time in MONTHS.
Overall it has been a nice week. I am seeing more glimpses of Little’s personality each day and there has been laughter and smiles – so good for my own heart. I am learning when to let her rest and when to push her to move. She has a new fear of being alone that seems to have come from the time in the hospital and the trauma experienced there – another opportunity for me demonstrate compassion and patience. After being “on-call” all day all week, it has been a blessing to sit and chat with my dear friend Claire who came to visit.
Logistical updates: We have an apartment and will move in on Monday!!! I think I already wrote about the Cardiology Department’s apartment. I have been holding it with an open hand knowing that life changes in a moment, BUT it looks like it’s empty and clean and will be ready for us Monday morning. Our time at the Ronald McDonald House has been a blessing. On most days there are meals provided by people from all over the city. There have been therapy dogs on multiples days too!! Little’s immuno-suppression has kept us from using the tickets to the Rockies games and the Broncos game tonight, but I am astonished by the opportunities provided by generous people caring for those in a time of hardship.
Things to pray for:
1. Dwayne’s continued adjustment to his new home in Little.
2. Little’s health – able to eat, no more vomiting, strength, no sicknesses that could trigger rejection!
3. We are working to figure out Little’s schooling situation now that we are post transplant and know the need. There are many details that need to come together.
4. Wisdom for me as I parent Little in this unique set of circumstances.
5. Wisdom for Jeremy as he parents two others in their unique set of circumstances.
6. I would trust and lean into my Heavenly Father.