This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.
Zoe’s CMV score was down to 86! Very, very good. The team is going to have their pow wow tonight and then call with her new Cyclosporine dosage since it was low. The plan now is to come in on June 13th for the biopsy and pacemaker removal (I doubt they’ll want labs before […]
We went to the ER this morning at 7:30 and the whole thing went surprisingly fast. They did an echo and labs. This process was not as seemless as it is in clinic; Zoe was pretty nervous in a room she’s never seen before and with a stenographer she’s never met. Labs […]
For the last five days Zoe’s heart rate and respiratory rate have been elevated so today I called the transplant cardiologist oncall and he’s arranged for us to come in tomorrow morning and have her checked and do labs. It is, of course, a three day weekend so all of this will be going […]
Dr. Boucek called us on Saturday afternoon and told us to stop giving her secondary immunosuppressant (Immuran). She is now on what is called “mono-immunosuppression therapy”. We had talked about making this change after the biopsy but with her CMV scores bumped back up it seemed like a good way to kill two birds with […]
Zoe’s PT was yesterday. I usually go in the afternoons because that is when her therapist takes outpatient appointments (or so I thought) and although she used to sleep on the way there she now goes in with no afternoon nap. Yikes. The last two visits have not gone well because of that but I […]
Monthly cardiology appointments were yesterday. Here echo looked good but it is increasingly harder to keep her still for them! I brought along a plethora of Noah’s toys because she’s usually not allowed to play with them much; amazing how soon they want what they can’t have.
Her blood pressure continues to be high but more […]