From Julian's COTA Journal.
Julian was admitted for surgery on Thursday November 29 at 10:30. The surgery, scheduled for 12:30, was supposed to be an outpatient procedure. Kissing him goodbye as he went under the anesthetic was one of the hardest things we've ever done, and brought back a lot of memories of his first few weeks of life in the NICU at The Children's Hospital 3 years ago.
The surgery took about an hour, after which time we were able to reunite with him in the recovery room. Around 5:00, the nurses were talking about discharge orders, but Stacy, following her mother's instinct, asked them to draw bloodwork and send it to the lab - just to make sure all was well. Leading up to the surgery, Julian was not allowed to eat or drink anything, and because his food is the only way we have of getting his regular meds and supplements into him, she suspected that something might be out of balance. Sure enough, his bicarb as very low, which means that his blood was slowly becoming acidic. This in turn made him feel lousy, not wanting to eat. They admitted us for the night so they could hook him up to an i.v. in order to restore his electrolyte levels.
By early afternoon yesterday, things were looking better, so they discharged us. We packed up all our things, and headed down to the cafeteria for a quick dinner before the long ride home. What timing - as we were eating, Stacy spotted Dr. Hall, the doctor in charge of the NICU, a man instrumental in Julian's recovery 3 years ago. He marveled at Julian's condition, even post surgery, and commented that his brother had a child who had a kidney transplant some years ago and is now thriving. Encouraging news for us at this point. We asked if he liked the new facility (TCH's new campus is amazing!), and he said yes, that he was just down for a bite to eat before doing evening rounds. "Same ol' same ol'." I wonder if he realizes how much his "same ol'" means to those of us whose children he's helped.
We arrived home last night around 7 or 8. We were able to change his diaper and put his pajamas on without incident, although it's pretty clear he's very tender.
This morning Stacy and Julian slept in while a neighbor drove me back in to Longmont to retrieve the van I left at the grocery store on Thursday morning. Today we took it easy - we're all catching up on our sleep - mainly watching movies (Monster's Inc. anyone?) and cleaning house in between diaper changes and meals. Thankfully it's the weekend and we can stay pretty close to home.
Julian seems to be doing well. He's still tender - they had to cut the abdominal muscle to insert the catheter, so it probably feels something like recovering from a knife wound. No sudden moves, lots of lying in place. However, his cheerful spirit is still in tact, and he is still the ray of sunshine he was pre-surgery.
We start training next week, for two weeks, and our biggest concern right now is infection - just keeping the area clean and dry. Thanks to you all for your prayers through all of this. Keep it up - we're not out of the woods yet.
Our fondest hope is that none of this will have a negative impact on Julian's quality of life right now, and that it will in fact have a positive effect on his long term quality of life. Please pray that this is the case.