Tummy Tales Part II

Nobody enjoys having a child spend time in the hospital, but Tuesday was, by far, the worst day of the whole experience. The plan for the day was a "quick" trip to Interventional Radiology for replacement of the GJ tube, restart feedings/tolerate well, and go home by the end of the day. It was a really good plan. Mid-morning they took us down for the procedure, and I was fairly optimistic but worried at the same time. They strapped him to a board just like the one for his Upper GI from days earlier. If you imagine a piece of plywood the width of his body, with 2 metal wheels on the ends for turning similar to a rotisserie oven, you've pretty much got it. Then they pull his arms straight up by his ears, and apply the Velcro straps across his forehead, waist, and legs. Of course, that's when the screaming started, and I absolutely don't blame him. We've seen the recovery from 2 open heart surgeries and several general surgeries, but this is the procedure I can't get out of my head. As you can imagine, I tried everything I could to calm him, but nothing worked.

The idea was to feed a covered wire through the G-button stoma, past the stomach, and into the first (about) 10 centimeters of intestine. When(if) that was accomplished, they would feed the GJ tube along the wire, pull the wire out....and wa-la! The first Radiologist began confidently enough, but right away got stuck in the stomach. Within a few minutes of not being able to get through the pylorus(part that connects the stomach to the small intestine), she became increasingly flustered until she finally gave up, and tried to explain why it wouldn't be possible for anyone else to do it. Luckily, the tech and I convinced her to let another Radiologist give it a try, and it turns out the 2nd guy was actually the best guy they have at Children's. He came in very confidently, arranged slightly different equipment, and encountered the same problem with the same result. After 23 minutes 13 seconds of radiation and a little more than an hour strapped to the board, they let me have him. He was so exhausted from the whole thing, he fell asleep before I could even get him off the board, and continued to sleep for 4 hours. I was so upset, I didn't let anyone touch him for the entire nap.

As with many of the procedures Kaleb has experienced, the intervention was necessary; this one was also unfortunately unsuccessful. The reason I was so upset was because he had to endure this procedure without anesthetic or anything to alleviate anxiety. As parents, we know our children the best. About halfway through the procedure, I asked the radiologist and tech if my nurse could come give Kaleb something and they said NO. "This procedure doesn't usually require anything" they said. Well, I'm just the mother after all(said with extreme facetiousness), but from my vantage point my child was not only terrified, but also very much in pain. I let it continue because I knew the alternative was surgery, but no one will ever convince me that it couldn't have been handled better.

The rest of the afternoon, as Kaleb slept, Cardiology/Radiology/GI teams went to work figuring out what the new plan would be...apparently completely separately, though. Within the first hour, GI came in twice with the new plan-surgery the next morning to replace the tube and receive an injection of botox(yes, you read that right!) to temporarily paralyze the pylorus and hopefully allow better gastric emptying. Shortly after that, my nurse came in to tell me that it had been arranged for Kaleb to receive a stomach spasm medication and Interventional Radiology was going to try again----what?! He ran off to verify, and the Attending Cardiologist came in to tell me that we were getting ready to have a terrible storm, and she wasn't sure how they were going to DISCHARGE us safely that evening...huh? No one had bothered to tell her that our morning procedure failed. Needless to say, everyone started communicating more effectively after that, and I had my only laugh of the day.

All areas deferred to GI, and the surgery was set for Wednesday morning. At this point, Kaleb hadn't had formula in more than 24 hours, had 2 failed IVs throughout the day, and even the IV team said he didn't have any veins left to work with....Tuesday was AWFUL!! All I could do was hold him, tell him how much I loved him, and how sorry I was over and over again. It couldn't have been enough. All day long(when he wasn't passed out), he cried and said, "Mama" hundreds of times. I love hearing him say that so much, but on this day, it felt like someone was ripping my heart out and stomping on it every time.

Thank goodness for daddy! He knew what a tough day Kaleb had, and he called our church to see if someone could visit us that night. We don't say this enough on the blog or Facebook. Prince of Peace Lutheran is AMAZING! They have been praying for our family since before Kaleb was born, visited us countless times at the hospital, and even prayed with us at home when we needed them. Thank you God for leading us there for our church home. This night, Pastor Landon came to see us. He listened to us, loved on Kaleb, and prayed with us until much of the day's awfulness faded away. We particularly enjoyed seeing pictures of and hearing about his new baby girl, Noa.

Karl spent the night since Kaleb was having surgery the next morning, and we ended the evening with a bit of Kaleb's latest obsession---Handy Manny! He loves it! The surgery and everything we learned from it, is a story for the next time. Thanks so much for praying for and loving our family!

One day, one hour, one minute at a time,
Jenifer



Handy Manny time with Da-Da



How can I get this thing in my mouth?



Taken shortly after he clubbed me in the head rolling over-he's a full contact sleeper!



Early morning snuggle time with da-da and Elmo



Tummy Tales Part I

When Kaleb had surgery more than a week ago, we had no idea the twists and turns his recovery would make. The original plan involved a few hours in the recovery room, and then HOME.  Monday's(13th) surgery was successful, but he woke up highly agitated and his blood pressure was between 180-190 for several hours.  That misbehavior earned him a stay on the cardiac floor, and that was fine.  His feedings started, and midway through the next day, so did the throwing up.  Since he now has a GJ tube(feeding tube that empties in the intestine) he was throwing up stomach acid/bile, not milk....major bummer since the hope was no more throwing up.  Since he was "tolerating" his feeds Wednesday, we were discharged-yay!  Looking back, he had a major gagging/throwing up episode about 5 minutes before we left, and we probably should have stayed a while longer.

Wednesday evening, there were a few more vomiting episodes, but everyone agreed it was better than it had been, so we continued to have hope that it would resolve.  Thursday morning, Linz(our day nurse/surrogate Gma) was with us, we were preparing to get to therapy at Baylor Our Children's House, and he started throwing up blood.  From that moment, the rest of the day led to re-admitting him to the Cardiology floor for testing/evaluation.  They suspected he had an obstruction of the pylorus, which was preventing all his stomach contents from passing through the intestine.  It was a pretty scary time, because every resolution involved emergency abdominal surgery.  They did an ultrasound...couldn't find the pylorus....upper GI...finally found out Thursday late afternoon there was no obstruction, but clearly there was a big underlying problem that no one could figure out.

The best anyone could come up with at that time was total bowel rest for 24 hours...turned out to be more like 28, and then we re-started his feedings S-U-P-E-R S-L-O-W-L-Y.  He did pretty well, and by Sunday, they were encouraging us to leave again.  This was particularly exciting because it happened to be my birthday, and who doesn't like taking their baby home from a hospital stay as your big gift?  So discharge Sunday afternoon....Happy Birthday to me....some fairly minor vomiting ongoing, and my wonderful mother stayed with us to help monitor him through the night.

Monday morning, Kaleb was awakened by one of the biggest MILK vomits I've ever seen.  Anyone who has a GJ tube knows this is a major problem, because the tube passes at least 10 centimeters into the small intestine, so there is no milk in the stomach to throw up.  We started calling the GI office, which on Monday morning is a complete disaster.  I must have called 50 times, and couldn't get past the "increased call volume leave a message" recording.  By the time I received a call back from one of the nurses, it was early afternoon, and we were directed to go to Children's for an x-ray.  At this point, we were totally convinced his new tube was out of place, and being fairly new to the GI side of being chronically ill, had no idea what we were supposed to do.  By the time we got to the ER, the Interventional Radiology Department was pretty much done for the day.  Of course, that is the department that replaces the GJ tubes, so they sent in the most irritatingly happy Resident to break the bad news to us....Kaleb would be admitted AGAIN, put on IV fluids, and taken to IR the next morning.  I think they were taken aback when I jumped out of the chair and began suggesting all the things we could do to keep him home with us until the next morning.  I was as close as I've ever been to flipping out, but didn't.  Amazingly, they were so worried about Aspiration Pneumonia after 18 months of projectile vomiting, up to the Cardiology floor we went for the 3rd time in a week.

Since this is fast becoming the longest blog of all time, I'll stop here and finish the 2nd half for later.  The craziest parts are still to come, so stay tuned!  Here are some pictures of our precious man from the first part of the week.

One day, one hour, one minute at a time,
Jenifer

 

Bird watching with PawPaw before surgery

 

 

 

 



Playing cars with Daddy

 

 

 

Hugs before he had to go back

 

 

Nap with his new zebra-lovey

 

He loves his Elmo

 

 

His new obsession-all phones all the time!





A Bump in the Road

Okay, so I think we can all agree I'm a terrible blogger!  I have the best intentions, I promise.  Things happen at least a few times a week, and I say out loud, "I'm going to put that in the blog tonight," and then I don't.  What can I say?  Life gets in the way.  But December 19th being the last post is really really bad!

So much has happened in the world of Kaleb in these months I hardly know where to start.  First of all, cardiac-wise he's doing GREAT.  They have taken him off diuretics entirely, and hopefully by his next appointment with Dr. Nugent, we'll get a 6 month clearance.  Fingers crossed.  We'll see.  His Sats are between 78-82, which is well within his expected range...and further proof that this kid is incredible since he NEVER stops moving. ;)

He's been getting regular Speech(feeding), Physical, and Occupational therapy, and he's made some amazing progress.  If you've been watching us on Facebook, you know Kaleb can WALK.  It's absolutely amazing to watch, and I don't think I'll ever grow tired of it.  When he's 10, I'll probably still be an enormously proud Mama--all right, I promise I won't embarass him like that.  I think at least part of what makes it so amazing is when he takes off walking the long stretches, he pauses and looks at us with the biggest smile on his face, and then keeps going.  He knows how impressive he is!

Unfortunately, he has developed terrible torticollis(terrible inflexibility of the neck muscles that leads to his head tilt to the right) that will require intense stretching and strengthening of those muscles over a relatively long period of time.  We think his modified crawl that we affectionately refer to as his "gorilla baby" move has reinforced this over time.   We've switched to PT services with Baylor Our Children's House in Dallas, and we're excited that he finally starts next week.

Back in March, Kaleb finally got into Baylor Our Children's House day patient feeding program.  We had been waiting for quite some time, and had high hopes that he would leave the program eating at least a couple of day feedings by mouth.  It started out well, and he seemed to be making progress.  Unfortunately, the discovery of the advanced torticollis and his ability to vomit between 5 and 10 times per day(normal if you know Kaleb, but really freaked them out) contributed to them suspending our participation in the program.  I won't lie.  I was devastated.

To make matters seem that much worse, everyone we trust with Kaleb's feeding and GI issues was telling us we needed to convert Kaleb's G-button to a GJ tube.  What this means is that the tube going into Kaleb's stomach to feed him would be changed to a tube that bypasses the stomach and empties in the intestine.  Since the food bypasses the stomach entirely, in theory, he shouldn't throw up anymore.  From what we've learned so far, the only major negative to this change is that Kaleb will have to go back to continuous feeds all the time.

After much research, and many weeks waiting for details to be worked out between our private practice GI and Children's GI team, Kaleb is scheduled to have this procedure and an Endoscope performed on Monday.  I'm trying to be positive about this, but it's really hard.  Our sweet boy has just started walking, and now he has to be connected to his feeding pump for 20 hours a day.  It might sound silly, but this feels like such a huge step backward for him.  How did we get so far away from Kaleb being able to take enough by mouth that we could cut back on his pump feeds?  It makes me sad.

Thank goodness, there's an incredible network of parents of tube-fed kids, and a few moms have created some amazing products to make the lives of our kids easier. Kaleb already has several belly belts and G tube pads, and now he can add a feeding pump "backpack" to his arsenal. It's a really cute sock monkey pattern, and holds his feeding pump with the bag of formula so that he doesn't have to be attached to the pole that usually holds it. We've been having him wear it with the pump inside so that he can adjust his balance for the extra weight.

I remember often, back before his heart surgery, in several of our gazillion talks with Dr. Nugent, he addressed the difficulty of feeding issues and cardiac kids.  I remember clearly when he told us that we would spend more time overcoming Kaleb's feeding problems than we ever spent on the cardiac issues.  Well....of course, I thought that was ridiculous!  I truly believed that after his heart was mostly corrected and we could really focus on feeding, Kaleb would be eating by his 2nd birthday.  But as with just about everything else so far, Dr. Nugent is probably going to be right.  Everyone's best estimate of how long Kaleb might need his tube in the GJ position is 1-2 years.  When the dietician at Baylor first said it, I started crying.  Dr. Barth, the GI doing Kaleb's surgery on Monday said that he sees kids with Kaleb's severity of feeding problems(as in total lack of oral intake) eating pretty well by 8 years old.  I was so stunned that time there were no tears.

I've spent so many hours thinking about whether this is the right path for Kaleb, and imagining that having to wear the backpack will hold him back, I've lost sight of the fact that I am not in control here.  As hard as it is, I never have been. Kaleb is a precious gift from God, and this is all part of His plan.  It wasn't so long ago that I was praying for Kaleb to have a chance at life, recovery from life-threatening complications, and to be able to enjoy life at home like so many other babies.  We've been incredibly blessed to celebrate his first 20 months of milestones, and each one is better than the last.  Where is my faith that eating is part of the plan? 

Watching him play wearing his backpack-try to walk and fall down, but get right up is such a major lesson for me.  I have to try harder not to project my fears onto this little guy who is so happy, loving every bit of life he can squeeze out, and absolutely fearless.  Today is Mother's Day, and like every other day, I thank God for this funny, smart, adorable, loving, miracle that holds my heart.  Please pray that Monday's surgery goes smoothly, and that Kaleb is stable enough to go home that day.  Please also pray that the adjustment to his feeding tube will finally stop the vomiting, so that he can feel better, start growing, and maybe even start to eat.  Thank you so much for praying for and loving our family. 

One day, one hour, one minute at a time,
Jenifer

 

Christmas with cousins Samantha and Jacob

 

 

Christmas with cousins Noah and Avery

 

First hair cut-way harder on Mama!

 

 

Playing between therapies at Baylor OCH Dallas

 

Are you...talkin' to me?

 

I make this look GOOD!

 

Get up early. Sow the fields. Feed the hogs. Wait...

 

1st zoo adventure-where's Elmo?

2nd hair cut-where's my baby?!