Jett's Final Surgery

On January 23, Jett had his third and, hopefully, final surgery.  A year ago, when he was born, we knew that surgeries were in his future.  The doctors were very surprised that he didn't have one within days of birth, so we know that we have been lucky.  His first surgery was January of 2014 and it pretty much cut a hole in his ureterocele in his bladder (think of it as a balloon that kept filling up and periodically releasing urine).  The next, in June of 2014, was to prepare his right testicle for descent (a blood vessel grew too short and was holding it up in his abdomen).
Well, this was the big one that we have been waiting for.  Essentially, it did three things:
1. Brought the right testicle down to his scrotum (held in place with a suture)
2. Finished taking out the ureterocele and repaired the lack of muscle underneath it.  The ureterocele was taking up about 1/2 of the floor of his bladder, which means that none of that had muscle underneath it, so muscle had to be pulled and stretched and who knows what to cover the area.
3. The reflux had to be corrected by moving around his 4 ureters (the tubes that connect the kidneys to the bladder).  Most people have 2, but lucky Jett has 4 and all of them needed some correction.  Two of them were really thick where they emptied into the ureterocele, so they were also shortened as well as moved to an area with a thicker muscle belly.

The day itself was long.  The surgery had a nearly 2 hour delay, then ended up being about 6 hours long.  We were fortunate enough to get calls into the OR every hour and a half to two hours, so we had some idea of what was going on.  Chris also got to go back and hold Jett while they put him to sleep, which he said he probably wouldn't choose again.  It was hard to even hear him talk about it.  Because of Jett's previous problems with IVs, (like 9+ tries to get one in), they brought in a special team that only had to stick him once or twice.

Around 7 p.m., Dr. Lee came out to meet with us.  He said that everything went smoothly, it just took a lot longer because everything was a bit more extensive.  He found and was able to pull Jett's right testicle down, but it was REALLY far up there, so it took a little more coaxing.  Then, the ureterocele was a LOT bigger than previously thought, so it took a lot more work to move the muscle tissue around.  Things like that.  I am so grateful to have Dr. Lee, though.  Since the beginning, when I was just meeting with him in the Advanced Fetal Care Center, I trusted him and knew that Heavenly Father had been preparing him to work with a lot of kids, but my kid, too.

Another half hour later, we finally got to see Jett in the PACU--the recovery room where they hold him for an hour or two after surgery to make sure he is stable enough to send up to a regular hospital room.  The poor boy had tubes coming out of everywhere.  He had the O2, HR, and RR monitors on his chest.  He had a suprapubic catheter coming out just below his belly button (a more intensive surgery calls for this kind of catheter because they know it is going to be in for a while and will disturb him less than a tube coming out of his penis), and 2 tiny tubes coming out just to the right of the catheter.  These were stents leading directly out of the two ureters that had the most work done on him.

Jett was sleeping peacefully.  Unfortunately, it was getting to be 8:30 p.m. and one of us needed to go get Link from the babysitter's and take him home.  Everyone predicted that it was going to be a rough night and since I was 32 weeks pregnant at the time, it was strongly suggested that I go home and get some solid sleep.  Silly people.  It was Jett's best night and I knew it would be.  I regretted going home and leaving my baby for the first time.  I was glad to pick up Link at my friend's house, though.  He skipped his nap and by 8 p.m., he was so tired, that he asked for a blanket and pillow and went to sleep in the corner!  Cute boy.

Jett stayed in the hospital for 5 days.  He was on valium for the first day or two, which is a total body muscle relaxant, so he was pretty chill with sitting in our arms or playing with toys, reclined in his bed.  Once he came off of that, he wanted to move around a bit more.  Unfortunately, the playroom was only open for 1 day (closed on weekends and during the blizzard), but we had nurses keep switching out the toys and we went for a million walks.  He really wanted to walk by himself, but a new walker who just underwent surgery is not the most stable of people.

His surgery was on Friday, and he got the 2 stents out on Monday, so it was a lot more manageable to follow him around with one bag instead of 3.  We were also able to wean him down from IV fluids in the middle of the night on Sunday, so we kept flushing the IV and weren't connected anymore.

We did have a couple of mishaps.  On the second night, Jett started shaking and trembling all over his body and did this for a half hour.  They thought he might be cold (fools), but a half hour later, he spiked a fever and they finally sent off for some tests.  They started antibiotics to combat a possible infection and within the hour, Jett broke out with red and white blotches on his arms and face -- an allergic reaction.  To counter that, he was given Benadryl, which did not make him sleepy--it made him crazy.  That was one long night.  The next night, he was given a different antibiotic, which he also had an allergic reaction to and was again treated with Benadryl.  Again, he was crazy, so our sweet nurse snuck another cot in our room and Chris had Jett sleep on his chest and I didn't have to sleep on the floor again.

Jett, watching the blizzard from our 10th floor window

After 5 days, we got to come home.  Link kept holding Jett's hand and following him around, giving him hugs and kisses.  "Baberton DOES like us.  He came home!"  We were able to get a leg bag for Jett's catheter, so we didn't have to follow him around all of the time, which was nice.

The next 4 weeks were long and hard.  Jett's catheter came out 2 weeks after we came home, which was great because trying to switch it to the big bag at night and emptying it all of the time was a huge hassle.  Plus, as he got more active, he started to snag it on things.  Then it took another couple of weeks to learn to sleep through the night again.  When the catheter was in, he was getting really painful bladder spasms, especially throughout the night.  The first few nights, Chris and I took shifts, but Chris is a sweetheart and took pity on my large, pregnant body and then wouldn't let me help unless it was really desperate.  The night the catheter came out was the worst night at home, by far.  Jett was having all of this phantom pain and cried for probably 2 hours at the top of his lungs.  Nothing could calm him down.  Finally, we gave him Ditropan for the bladder pain and Tylenol for the incision pain.  After a half hour, the drugs finally started to work, and Jett began to relax.  I was lucky enough to be holding him at the time he fell asleep and I just laid him down on the mattress next to me and slept there until I really had to pee.  Poor little guy.

The catheter and the bandage covering his largest incision

From the surgery, Jett got 4 additional scars/incisions.  One huge 4-inch one right by his diaper line, one small incision and one small suture on his scrotum, one V-shaped incision from his catheter, and 1 small incision for his stents.

Now that Jett has finally recovered and is completely back to himself, I am so glad that we did this before the baby came.  It was the longest 5 weeks of my life.  I thought he would bounce back a day or two after we got out of the hospital and was not expecting the recovery to take so long.  But, I am so glad that it is done now.  I am so grateful for all of the friends who helped out and for my mom who flew out to watch Link on such short notice.  But mostly, I am grateful to my amazing husband.  He held a screaming, crying child with more patience than I could muster and, once again, took on the lion's share of terrible nights so that I could sleep without even complaining.  I am so dang lucky to have this man by my side as we go through the trials of life.

Jett's Third Surgery

Jett has his third surgery scheduled for Friday, January 23rd.  This is the big one, the one that we have been "putting off" until he gets bigger.  And now that time has come.  We got as close to a "clean bill of health" as we could in November from nephrology.  His kidneys have been functioning so close to normal since he was born that we get to space our appointments out every 6 months.  However, we got different news in December when we went to visit urology.  Jett had a ultrasound and VCUG done that showed that he still has significant reflux back into his kidneys.  A lot of people have reflux and it isn't a big deal.  However, because his kidneys are already damaged, he is at increased risk of scarring and permanent damage if he should ever have a UTI infection that get refluxed back up to his kidneys.  This surgery will essentially repair the reflux.  There is also a hole or gap in his bladder muscle from his first surgery when his utererocele was removed a year ago.  Dr. Lee will also correct that.  Finally, he will also get the second half of the teste descent surgery at this point.  In June, the blood vessel to his right teste was cut (the testicle is currently sitting in his abdomen) and Dr. Lee is hoping to bring it down into place.  To sum it up, Jett will have one large incision over his bladder (diaper line), several for tools and scoping, and one in his scrotum.  He will be in a significant amount of pain.  If everything goes well, he should be in the hospital for 4-5 days.

We are grateful that Dr. Lee is able to combine two potential surgeries into one.  Originally, he was thinking about doing the teste surgery first then waiting at least 6 weeks before doing the big surgery.  However, since I am due in March (yes, I'm pregnant), and I expressed my desire to be in the hospital with him (which I clearly couldn't do with a newborn), he thought about it and decided that he would be able to combine the two surgeries.  That was blessing number one.  Number two is that my sister is able to come out and help watch Lincoln so that Chris and I can both be at the hospital.  As soon as she found out that I was pregnant with Jett and that he would have medical problems, she offered to come out and help with Lincoln.  Neither of the other surgeries were lengthy, so friends out here were able to watch Link.  This one is quite a bit more intensive and I am so grateful that she has been open to whenever it would happen.  I am also grateful to her husband and those who are helping to watch her children so that she could come watch mine.

As we head into this final surgery, you would think that I am prepared.  I have done this before.  But really, I am a complete mess--a hyperventilate in the dark kind of mess.  Every time we have a doctor's appointment, I break down because I have to face the fact that my child is not a healthy child; despite his cheerful demeanor, he still has a chronic disease.  However, surgery is different.  They carry your child away from you, put him to sleep, and all I can do is wait to hear his screams and count how many times they tried for an IV before they finally got one.  Last time was 8 tries.  Now that he is a little older and is starting to get some separation anxiety, they will let one parent go back to watch and be with him while he goes under.  I was so glad to hear that until they said it would have to be Chris because I am pregnant.  This is the first time that pregnancy has gotten in the way of me being able to comfort my baby.  But at least Chris will be there for him.  I don't know how I will make it to the waiting room by myself, but I am so glad that Chris will get to be there for a short time with Jett Jett.

This is going to sound a little pretentious and ridiculous, but I have received many answers and blessings that said that Jett Jett was made specifically for me.  I got my blond haired, green/hazel eyed baby.  He loves hugs and kisses and me, in general.  He is quick to giggle.  Everything about him (minus those inevitable grumpy nights) makes me so happy.  I'm not saying that I don't love Lincoln or get along with him, but you know when someone was just made for you?  It makes it that much harder that I can't take his pains away.  I would do anything to be on that operating table on Friday, but all I can do is just walk away.  I can't even go back with him, and that breaks my heart.

As always, if this finds any of you, I ask you to pray for our family this week.  For Dr. Lee, the surgeon, that his mind will be clear and his hand guided during the surgery; for Jett, that his body will respond well to the surgery and he will be able to handle the pain and heal well; for Chris and me, that we will be able to take care of our sweet boy and know what he needs from us; and for Lincoln, that he will not be so anxious and scared while his parents are away but that he will find comfort at home.