Jacob had his surgery done Monday the 23rd. He had licked the fever that postponed the surgery the previous week. But we were unclear if they would proceed even Monday- due to a wheeze in his lung. I explained that he does have asthma, so they gave him a nebulizer treatment, and voila~ wheeze was gone. Surgery started at 2:30. I met with the surgeon at 5:45. He had re-presented Jacobs case the night before to the fellow doctors on the team, and they had changed the surgical plan. It was decided that it would make more sense to plumb the right ureter directly into the bladder, Like sticking a straw into a cup, instead of trying to plumb it in correctly (as in nature, the ureter enters in an “s” curve through the bladder wall, which as the bladder fills and expands essentially pinches off the “s” preventing urine from back-flowing). Originally the plan was to pull the right ureter over to the left side and plumb it into the left ureter so both would drain from the left side. By changing the procedure and doing it this way instead, we have avoided any compromise to the left side, (and Jacob’s “good” bad kidney.) The concern was if we face other complications with both plumbed together- we would be compromising both kidneys not just one. Then we would really be in a pickle- facing dialysis and possibly needing and organ transplant.
Post surgery he had an epidural in to help manage pain. He threw up the second night, so we began him on Zofran as well to help manage nausea; which could have been caused from pain or the morphine. We also started him on scheduled Tylenol to manage his pain.
This was the third reimplantation of the right ureter that Jacob has undergone in his 5 1/2 years of life. The 7th major operation, not counting all the stents, nephrostomy tubes, endoscopies, and other smaller procedures. He was so sore and scared about the pain, or hurting. He was less than happy the second day when they made him get out of bed and sit in the wheelchair. He is old enough that he can verbalize his unhappiness- “I Hate THIS!” was his frequent complaint.
But, by the third day in the hospital he was beginning to feel much better. He was even up for playing a little bit in the hospital play room.
I can not praise the hospital staff at Maine Medical Center’s Barbara Bush Children’s Hospital Unit. They are an amazing bunch, all are very good at their jobs, and it makes returning there, enjoyable- if you can believe that! I really love these women!~ One of our nurses was an old friend from when Jacob was in the hospital when he was one- two years old. Both she and the nurse who had actually had to epi him were there, and we chatted about Jacob’s anaphylactic reaction that happened while there the day after one of his surgeries! I also brought in a bunch of Auvi-Q trainers to share with the nurses and doctors there! ~ Many had not seen them before and they were very impressed, for the ease of use for caregivers and for self-carrying teens.
In order to encourage Jacob to get up and start walking, they created a sticker chart for him. For every 2 stickers he earned, he could pick out a prize from the toy closets! Talk about a motivator! 😉
Friday was our final hurdle. They removed the epidural, and the catheter. Now we had to see if he would be able to urinate on his own. If he could then we could go home. If he did not- then we would likely have been sent home with a new catheter in place, or I was going to have to intermittently catheterize him 5-7 times a day to drain his bladder. When the time came, he went into the bathroom, and we waited. A few drops came out, but it hurt (after having the catheter in). I asked him to keep trying. Finally he was able to go~ a full 200ml! (approximately a full bladder’s worth). I can not express how relieved and happy I was ~ and still am- at this! So after 5 days at the hospital we were able to come home.
This is the incision wound. Another battle scar for my warrior!
Back to playing with friends, Legos, Brother and Bella!
Jacob will be able to return to school this coming week after staying home this past week with me. He continues to heal and is still the sweet funny happy boy he always is! I am so glad to have this hurdle behind us now! The next step will be in a few weeks he will have a procedure to remove a stent from the ureter, and to test if for reflux. There is a strong possibility that because this new reimplantation is open (a straw in a cup) that there will be more issues with reflux, and possible infections which thus far we have had no issues with. If down the road -scarring, poor draining, frequent infections, worsening hydro/reflux again become issues; the next step will likely be to remove the right kidney. But we will cross that bridge when- and IF we come to it! Thank you all for your support well wishes and prayers!