I started out the day running around to the pharmacies that had her orders. It is always a relief when I get there and the order is ready and complete for me. With meds in hand, I went back to the hospital to wait for us to be discharged. We played at the playroom for a while and packed. It was later than we expected, but we were discharged and came home! We do not have to report to the clinic until Thursday! That means we have two full days AT HOME!
Now, we are waiting for the home health nurse to come help me set up her pump for her IVs at home. I will need to administer three IVs each day. Her medications include 11 oral doses of medicine, 3 IVs, and a syringe. I have put together a spreadsheet of times/medicines and a checklist. This week will consume of following a schedule like clockwork and resting whenever possible. I am also going to work on ironing out the kinks with homeschooling the children through the virtual classroom that I set up. That way, when I leave for CA, we have worked with the classroom while here at home and do not have any technical issues.
I cannot wait to sleep in my bed with my entire family under one roof. It is amazing how the simplest things are the largest Blessings. Like all watching the same tv, seeing each other in a way that we can actually touch and not through a facetime screen, sitting at the same table for a meal, and seeing the smiles on my kids faces as they play and laugh together. Naomi and Cait are napping right now while the older three children are at Irish dance class and Niamh is with Aaron. Although my to do list is long, I am enjoying being at HOME!
Oh, and her labs today were much of the same as recently…. some better than yesterday and some worst. Since so little of her bone marrow is functioning, her body is making what it needs. Today, her marrow made a lot of WBCs, but RBCs suffered. So, she is very tired today. But she was not too tired to play in the backyard when she got home from the hospital. 🙂
Also, we still have not heard the results of the donor tests. I will be sure to post here as soon as we know!
Finally, Aaron and I both want to thank you for the donations of funds, gifts, calls/texts, prayers and sincere concern for our lioness. It is truly amazing how many of you have reached out and continue to follow her progress. The first deposit of donations made it to our account today, just in time for her release today and meds she needed to be released. It was truly a Blessing. I will continue to update here as things progress, and hopefully relax a little bit.
As for prayer need, we need Naomi to eat and drink better. Many of her meds cause her to be nauseous and she is afraid to eat for fear of vomiting. We are really needing her to not get dehydrated or lose nutrients. So, it is so important that her appetite return at least a little bit. Right now, it is a challenge at most meals to get her to even take a bite. Now that we are home, I intend to use more essential oils to help stimulate appetite and can certainly feed her whatever she will eat (within limits of what her GI doctors will allow). But the biggest issue is her fear of vomiting. Unfortunately, it is part of the meds which are part of this disease. 😦