Well, friends, I am happy to report that things have continued to go well. Reece has visited home for three days in a row and he is basically approved for daily home passes unless anything changes. Terry and I are in education classes this week to make sure we know how to do the many things that will need to happen at home–flushing out Reece’s line, cleaning his dressing, hooking up nutrition through his line, administering IV meds, and checking blood glucose/administering insulin. It sounds like a lot and it is. I feel like we should be getting honorary nursing degrees.
The d-word has finally come up in conversation–looks like they are planning on Sunday or Monday, barring any fevers or new developments. It is an understatement to say that we are ready. He still has a lot of work to do outpatient and this next leg of the journey will be complex as well. Going home now will be excellent timing in regard to home prep and baby prep.
This baby is not far off from entering this world. I have spent a ton of time at the doctor already this week. Monday, I had an ultrasound that revealed she is about 2-3 weeks behind. She is also sitting in a transverse position (across my body), versus having moved to the head-down birthing position. I have been contracting pretty regularly. All three things considered, my OB called perinatology (high-risk pregnancy docs) on Monday to see if I had a c-section in the works for the day. Thankfully, they did a non-stress test and ordered a biophysical profile (ultrasound where they monitor the baby’s movements) and she passed with flying colors. I was told not to do any more exercising and basically given the stink-eye for even considering walking around the lake. I do feel ready to roll here, although I would still be a bit early at 36.5 weeks (which is the same time I delivered Reece, although I was induced). I hope this gal figures out where to go so that I can avoid a c-section if at all possible. I have many friends who have had them without problems, but I am used to the standard delivery method, so I would prefer to do that. I am getting super excited!!!
I am struggling a bit with reintegrating Reece back into society. I know that he looks physically different, but at the hospital, he looks like all the other kids. I remember the first time we visited Amplatz for our consultation and seeing the physical differences in the kids who were post-transplant. It was shocking to me, although I knew better than to stare at them and I was also trying to come to terms with what lay ahead for Reece. The general public will likely not do so well from a staring perspective and it will take some real effort to not feel confrontational about it. Additionally, he is not acting like his normal self, so the kids that Reece knows will not be used to him at all. I know kids deal better with these types of things than adults do, so in Reece’s words I need to, “take a chill pill”. In our best case scenario, Reece will not look like himself until the holidays. I am hoping as his energy returns, we begin to see more and more of his personality return. All-in-all it will be about a year of him looking and acting different from his normal self. Yes, it will be worth it, but it is still hard as a parent and certainly a difficult thing for him to manage.
We continue to ask for your prayers:
- Reece’s GVHD rash to be gone and not return as he begins to taper his steroid dosage
- Continued improvement in all things BMT
- Protection from fevers, side effects, and infections
- Remission & life
- Discharge as planned and a smooth transition home