It's hard to believe it's been 3 months since Kaleb had his button converted to a GJ. I'd love to report that the GJ has solved all his issues with feeding, weight gain, and vomiting, but unfortunately everything is still a work in progress. The month or so following his initial GJ placement, we were entirely focused on adjusting to Kaleb being on continuous feeds. Thank goodness for his backpack! (made by Jessica of Tufe Boutique on Facebook. Her backpacks are absolutely the BEST if you need one. We've bought 3, and I'm sure they won't be our last!) We've been working with PT and OT to increase Kaleb's strength, so that he can carry the backpack for several hours during the day. He's making progress, but still not there yet.
Initially, since Kaleb's anatomy is so complicated that his GJ had to be placed by Endoscopy under GA, we were encouraged to replace his tube at 3 months instead of the average 6. That was the plan until Kaleb was still experiencing extreme pain 4 weeks after the final tube was placed. Any time we touched the tube to give meds, attach the pump tubing, or take the tubing off-he would scream. It was awful! We made an appointment to change out the tube again. I should mention that when Dr. Barth made the decision to lengthen the GJ tube to bypass the unusually high section of intestine, Kaleb's size tube was unavailable. A smaller one was substituted, and we were assured that the size difference wouldn't be a problem. Well, it turns out it was a problem for Kaleb. The correct size was obtained, and we were sent to Interventional Radiology one more time to switch it out. One more time they strapped him to the rotating table, without sedation or anesthesia, and the Radiologist was BARELY able to switch it out. There was so much junk inside and outside the tube, she told us if we'd waited another few days it wouldn't have been possible. What?!! Yes, friends. Kaleb's gastric emptying is so bad that we have to switch out his GJ tube every MONTH. This is extremely discouraging, but as with so many other things, completely necessary.
So that was in June. We planned a trip to San Antonio to visit Karl's family over July 4th. It would be Kaleb's first flight out of town, and we were so excited. Of course, this trip would be a warm-up for the late July beach trip to Corpus, but that's a story for another time. I planned the San Antonio trip to the last detail. I made list after list. I checked everything over and over. And then we were off. We got to the airport early, because we wanted Kaleb to have a chance to see planes take off and have the full airport experience. Although I was really nervous about clearing security with all of Kaleb's meds and supplies it was a piece of cake. High five for preparation folks! As a bonus, while boarding the plane, Karl asked the pilots if we could get a picture of them with Kaleb. The co-pilot asked if we wanted to sit in his seat and we did!! We have the cutest video of Kaleb in the cockpit watching the pilot demonstrate all kinds of cool alarms and sounds. It was adorable!
Even though Kaleb wasn't 2 at the time, we bought him a seat so that he could sit in his car seat. It was a gamble....and it paid off big time! He did great on the flight to San Antonio! No crying. No temper tantrums. No demanding to get out of his seat. He was perfectly happy for the whole hour flight. I know what you're thinking...it was only an hour. But you and I both know a toddler throwing an hour-long tantrum can feel like eternity, so I'm putting this one in the major WIN column. Of course, mommy and daddy thought ahead. We both had cocktails, and were ready for anything. Life is really good sometimes, and this was one of those times.
We had the best several days in San Antonio. Kaleb loves his Grandpa and Nana. He loves his Aunt Jenna, Uncle John, and cousins Jacob and Samantha. Although we were incredibly worried about how he would react to spending time in the pool, he LOVED it. He sat in the same whale float that Jacob and Samantha had used, and he was so happy. Uncle John even figured out how to attach his feeding pump to the whale tail so he didn't have to get out for his feedings. We had the best time for 2 days.
I woke up Saturday morning at 3 AM to give Kaleb his Bethanechol. As I've done thousands of times, I started by pulling from his G tube to make sure his tummy didn't get upset when I added the meds. Only this time I pulled out 20 mls of bright red blood. I sat there stunned for I don't know how long trying to make sense of it before I woke Karl. We decided to wait a little while and try again. I couldn't sleep. A little more than an hour later, I pulled from the G again and pulled almost exactly the same amount of bright red blood. By this time I was on the phone with Children's Dallas. It became clear quickly that we would have to take Kaleb to the nearest Children's Hospital for an evaluation that would most likely lead to a transport to Children's Dallas, and we were terrified.
Karl and I packed our things as fast as we could, and we drove to Santa Rosa Children's Hospital. The good news is I packed a folder with Kaleb's diagnoses, current med list, and contact numbers for all his doctors. It was almost entertaining when we checked him in, gave them a description of the reason we were there, and handed them the folder. They freaked out. They started calling Children's Dallas almost immediately trying to arrange a transfer, and I can't say I blame them. It turns out, their doctors had all left to form their own hospital a few weeks before, and they were very much in transition. A tad unfortunate for us, because after 6 different individuals tried, Kaleb still didn't have an IV. And they didn't have J tips. They used a cold spray as an anesthetic before the IV attempt. It basically looked like the nurses were spraying hair spray on his arm before the multiple attempts. Needless to say, there was a lot of screaming, and after the 6th attempt, they decided it wasn't possible. Kaleb was transported without access.
Now I realize this is the least of what is important here, but I have a fear of flying. Heights in general, but a pretty serious fear of flying. I decided a very long time ago that I would NEVER set foot on a prop plane. And it worked really well for me for a very long time. It turns out, though, that transport planes are pretty much all prop planes. In this case, a single prop, with only a few seats. Of course, they have all kinds of rules for safety, and one of those limits the number of travelers to 1 parent at a time. There was never any question that I would be going. I just refused to think about the plane until the last second. I was completely focused on Kaleb, and after we finally left with the transport team everything happened really fast. We rode in an ambulance to the airport and went in through some back exit that didn't even stop us to check paperwork. Before I knew it, we were getting out and looking at the smallest plane I've ever stood next to. Kaleb was strapped to the transport gurney, and he looked like he felt terrible but thankfully was not afraid. There were 2 transport nurses and 1 pilot. The pilot was extremely nice, and he went over all the safety info, rules, etc, but I have to admit I was only half listening. Once they got Kaleb on the plane, and it was my turn to climb the steps it hit me that this was really happening. I've read so many blogs and articles about sick children being transported, but I never thought it would be US. How did this happen? What did I miss? Did I do something wrong? What if Kaleb's bleeding got worse in the air? Why was he bleeding? Please, God, carry my baby safely to Children's.
I wasn't able to sit anywhere near Kaleb because the plane was THAT small. Besides the 2 seats for the pilots(we only had 1 though), there were 2 seats for the transport team that was directly across from the space where Kaleb's gurney was. I was in a jump seat at the back of the plane, holding onto the cargo net that was holding our luggage. AAAAAAHHHHHHH! I prayed pretty much the whole time, mostly for Kaleb and his health/safety, but I won't lie....also for the plane to not crash! It really was amazing how easily it pulled off the ground and into the air. The turbulence was exactly as bad as I thought it would be, and the hour felt much longer than it should have been. Thankfully, Kaleb was stable, and when we finally touched down I was so happy to be back in Dallas.
Children's Dallas is amazing! I know I've said that a zillion times, but it's true. Even though we arrived near shift change, they were ready for us. Within the first hour, we had 2 things to be happy about-IV team got an iv on the 2nd try(yes it was an 8 poke day) and his blood work wasn't too bad. Thankfully, his hemoglobin was lower but not so low as to indicate an active bleed. That was great news because it meant he didn't need an emergency procedure. Praise God. As Kaleb was assessed, and test results came in, a theory started to emerge: the possibility that Kaleb had a bleeding ulcer or ulcers. The only way to know conclusively would be to have an endoscopy, a procedure Kaleb was getting remarkably good at experiencing. We were scheduled for the next day, but that was Sunday. They decided that as long as he was stable, we'd wait to do the procedure Monday. That way we weren't doing it on the Sunday at the end of a holiday weekend--eek!
Monday morning, when we met with Dr.Channa before she took Kaleb back, she assured us that she didn't expect to find anything and that the procedure shouldn't take very long at all. (Don't get me started about how tired I am of Drs telling us they don't expect to find anything :0) In fact, it took about as long as it took my mom and I to go to the cafeteria and eat breakfast. 30 minutes at the most. It turns out the procedure went so quickly because she FOUND what she was looking for right away....bleeding ulcers, many of them. The pictures looked awful, all these terrible raw-looking areas. It made me sick really. I didn't have a hard time imagining how much pain they caused. Dr. Channa thought the cause was a combination of less than effective proton pump-inhibitor(aka fancy antacid) and friction from the longer GJ tube rubbing against the stomach lining every time he moved, retched, or generally behaved like an almost 2 year old. This was great news from the perspective of thank goodness my kid doesn't have a much more serious reason for internal bleeding. It wasn't great news from the perspective that Kaleb desperately needs to keep the GJ tube. He can't grow without it.
The plan was really quite simple. She put Kaleb on Carafate, a med often prescribed for ulcers, and suspended all other GI meds. Of course, by this time he hadn't eaten in 3 days, so he had stopped bleeding and throwing up. It was fairly amazing. After the first doses of Carafate, Kaleb stopped waking up in the middle of the night screaming as he'd done countless times the past month or so. We had attributed those episodes to gas/cramping from his body getting adjusted to the J feeds, but no. It had been pain from ulcers the whole time. I fought for, and won, the ability to keep Kaleb on the Carafate long-term. There really are no side effects or reasons preventing long-term use, except that you have to be careful of the timing for administering all other meds to make sure everything absorbs properly. It seemed to me the only way to have a legitimate shot of keeping the tube. After successfully re-starting his feeds, we were able to go home and begin again.
To no one's surprise(who knows him), Kaleb was back on all his regular GI meds by the end of the 2nd week after discharge. He stopped screaming when we touched the extensions to his tube, and he slept peacefully(well mostly!) through the nights. Yes, he started throwing up again, but that's Kaleb. I wish it wasn't. He's the kid that can have a disturbing throwing up/retching incident that goes on for several minutes, and when it's over, he pushes away the burp cloth and goes on with his happy life. I continue to pray that it will get better with time, as the doctors have assured us.
I've spent a lot of time going over the events of that weekend in the almost 2 months since it happened. I look at the pictures from those days we were in San Antonio, and I'm so grateful he had so much fun. He flew on his first plane, and he loved it. He spent time with family he doesn't see very often, and he LOVED every minute we were there. He spent time with his Great-grandfather who adores him, and we have pictures of all 4 generations of Prinz men....priceless. He tasted sausage. He discovered his favorite whale float. He begged his daddy to do cannonball after cannonball to splash everybody within a 30 foot radius. He said Grrrrrrand-pa! Would we do it again? I hope so...
How do you balance the health/safety of your chronically ill child with the opportunities for him to experience a real, beautiful, and full life? I admit I'm often afraid we'll make a mistake and he'll pay for it. I feel so guilty that we had to be medically transported home from his first time in San Antonio. I feel terrible that he was in pain for so long and I didn't know why. I desperately wish his GI issues were easier to resolve. I could go on and on. I don't have all the answers, in fact, I have very few of the answers. But I love Kaleb more than my own life. He is my best thing....I tell him that all the time, and he smiles. Karl and I will continue to do the very best that we can, and I pray that it's good enough.
The July 4th trip was just our warm-up trip. The annual Prinz family beach trip to Port Aransas was coming. A week at the Port Royal resort....even farther away from Dallas. Would we go? Should we go? That's the story for the next post! Thanks for listening and loving our family!
One day, one hour, one minute at a time,
Jenifer
Chillin' at Check-in
Mama, look at all the buttons!
His favorite whale float rockin' the feeding pump
Great-Grandpa, this is how I use the Iphone
My brave boy leaving San Antonio Children's
Sweet boy on a small plane
We can do this together!
The view from my seat
You can't escape the Mama kisses!
Paw-Paw love
Daddy head rub puts me OUT!
