Thursday, June 9, 2016

We are weary but HOME

When the doc made rounds this morning, he asked Ron if he would like to go home. Yes, of course! Too low oxygen level with any exertion meant we would need oxygen at home for the first time. Ron also had a swallow test moving xray this morning. Because this was his 7th pneumonia, they wanted to rule out any swallowing abnormality that might cause food to go into his lungs occasionally. All normal. That still could have happened because occasionally he chokes and coughs when eating. He has some new strategies like sit up straight and one bite one swallow. Because he has lost his teeth due to GVHD, his menu is limited.
Ron mostly had nurses that he has had previously, and the two new ones were amazing. It is so good to have caregivers who know his history. We have been through a lot together. He also had an immunity infusion and his last ECP while in-patient. I hope this tunes him up good for the coming weeks when the kids and grandchildren come to the lake. I also hope the oxygen is a temporary intervention. But if It helps him to be more active, it is more than worth it. We will go back in a week to see his regular transplant doctor. He goes back to his pulmonary doctor in 6 weeks for follow up testing.
His new meds are for his heart. His heartrate continues to have extra early contractions in the ventricles, but so much better. I know that I have become numb to a lot of the things he deals with, but the new heart issues really scared me. I didn't even know that I could still feel that fear. So I pray that this pneumonia resolves itself. They are not keeping him on the IV antibiotics as long as they did in August.
Sleeping in a bed tonight is going to feel great! In addition to caregiving, I have plenty of things to do here in the villa and flower beds to keep me busy. Thanks so much for kind words, thoughts, and prayers through this latest crisis.
Love, Ron & Jan

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