e's circumcision came right around the time he was 7 weeks old. the wounds were still fresh from his diagnosis, and this simple 10 minutes procedure landed us a two night stay in the children's hospital at st. joe's. since it was being performed on a monday morning and michael had to work, i was at the hospital overnight by myself on sunday and monday. michael drove with me to the hospital on sunday evening and we checked in. he stayed with me while they put e's iv in and left around 10:00 that night. i was breastfeeding and evan was still so little...and they told me i couldn't feed him after midnight. i was dreading the night with him, alone in a hospital where i couldn't nurse him to calm him down. luckily he nursed right before midnight and didn't wake up again until 4 where i gave him a paci and he went back to sleep until around 6. his appointment was at 8, and he did pretty well with not eating.
i brought him downstairs and checked him in with the urologist. he showed me the board with straps that evan would be put on while they did his procedure. the whole time they are explaining this to me, i kept asking myself what in the hell we were doing making him go through this. so little and helpless being strapped to a board. so i left and went to get a coffee. i knew when i got back that they would be finished. i didn't want to be within earshot in case he was crying. i was already in a fog from lack of sleep, post-partum emotions, and the freshness of his diagnosis. i didn't need anything else to possibly tip my scales.
i came back a little later to pick him up...he did great (well, that's what they told me anyway). now he could nurse and sleep and be infused every 8 hours for the next 24 hours just to be sure he would clot up. i was going to try to get a little sleep, but that didn't work so well.
being at the hospital with him was hard. it was difficult to see all the little kids that had been there for weeks...some of them months...with their own linens in their rooms to make them more comfortable. kids with cancer and other horrible diseases that were making them weak and sick and probaly unable to see their next birthdays. and then there was me...a mom with a baby whose disease was managable. it isn't likely to kill him...and there is so much hope for him to have a totally normal life. it made me feel a little better about it, though i felt guilty for feeling that way with all these other kids around. not that i was sharing these thoughts with them...but it was still so sad.my mom brought noah to visit us that afternoon. and then my dad came, too. and michael came after work and brought dinner for us. it was so good to have people there...and made me miss being home. i just wanted to be at home...in a normal setting...with our new baby. but we weren't. and i remember feeling the unfairness of it all. again questioning why this had happened to our son. the questioning and crying didn't do any good though. and i knew it wasn't going to change the diagnosis. so i kept telling myself to stop. as hard as it was to do that...i kept trying.
the next morning we were able to leave...though not until around 11. i was so happy to leave. it was just one hurdle that we had gotten over in our new relationship with this disease. and it turned out alright. while we were there, the doctors drew blood from evan to check out his factor level. we got the results back that he was at 6%...this was fantastic! it meant he was in the mild range, and we were so thrilled to hear this. we have since had him retested (twice) and found that he is at 3%, putting him in the moderate range. still not bad...but not as good as we thought it was.
anyway...we got to go back home, as a family, to keep figuring this thing out together. and it was great to get back there.
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