BIG PLANE little plane

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!

Tummy Tales Part 3

The morning of Kaleb's second surgery, my feelings were all over the place.  I was no longer confident that the GJ was going to help.  I was worried we were putting him through another surgery for a tube that was just going to work itself out again.  I was still terribly disappointed that Kaleb was going to have to go back on continuous feeds again.  And on top of all of that, I had a very strong feeling that more was wrong with Kaleb's digestive system than we knew and/or they were looking close enough to find.  In fact, I'd felt that way for a very long time.  For almost 22 months, everyone and I do mean everyone has been telling us Kaleb is a Cardiac kid....Cardiac kids throw up.  The problem with that explanation, is that for the past several months we've been looking around at other Cardiac kids who have STOPPED throwing up and STARTED eating (by mouth) by now. 

The plan for the surgery was a replacement of the GJ tube and a shot of Botox to the pylorus....yes, I did say a shot of Botox.  Apparently, in addition to helping some of us feel better about ourselves, Botox is now used to paralyze body parts that need to relax a little more.  The hope was that if Kaleb's stomach started emptying better following the shot(or not), we would have a better idea of how to proceed with his treatment.  I found it mildly amusing that Kaleb at 21 months old would be the first in our family to enjoy a shot of Botox, and insurance was going to pay for it.  I might have even suggested that they could save the leftovers for me....or I might not have. ;) 

We were in Pre-op waiting for the fun to begin, and the anesthesiologist walked in and introduced himself as Cardiac back-up anesthesia.  I mean absolutely nothing against the poor man, but that was pretty much IT for me.  With Kaleb's Heterotaxy and his history of arrhythmia, this Mama Bear was in no mood for the back-up team on this day or any other day.  I'll be honest.  I was just a few seconds from grabbing Kaleb and heading for the door.  Then the most unbelievable thing happened.  Our surgeon, Dr. Megison, walked right by the room, saw us and came back.  He didn't know Kaleb was having a procedure that day, was concerned that he was still having problems, and wanted to observe to see if there was anything he could do.  I can't say enough good things about the man.  I felt a little better, but still didn't think I could reconcile the back-up anesthesia part.  Then the 2nd most unbelievable thing happened.  Kaleb's Cardiologist, Dr. Nugent, on his way to St. Paul, walked right past the room and stopped to check on us.  He reassured us that Kaleb has been doing very well, that should anything scary happen the right people could get to him quickly, and suddenly I knew it was going to be okay.  Thank you again, God, for sending the right people to us when we most needed them.

They took Kaleb back for the procedure, and everything went smoothly.  When Dr. Barth met with us immediately after, he began by telling us, "I think we really learned something today."  While placing the tube this time, he and Dr. Megison took a close look at the pylorus, and even got a picture of it wide open.  There had been no need for the Botox injection, after all.  However, they discovered Kaleb has had a very unusual GI defect the whole time.  He has extra folds of tissue that completely cover his pylorus, and prevent it from emptying correctly.  In addition, the position of his intestines directly connected to the pylorus makes peristalsis incredibly challenging(or pretty much impossible).  All of a sudden, his incredible gastric emptying problem and intense vomiting made sense!  We finally had proof that more was wrong with his digestive system than just being a Cardiac kid. I can't tell you how many GI specialists have seen Kaleb, and not one of them thought a structural defect would be found. 

You could tell Dr. Barth was very surprised, and unsure of how to proceed.  The unique positioning of his intestines made it very likely that the newly placed GJ tube wouldn't last much longer than the first one, and Kaleb needed general anesthesia to place both of them.  He clearly needed the GJ, but it wasn't realistic to put him under every couple of weeks to replace the tube.

We'd been here before, with a situation that called for a solution where it didn't seem there was one.   The people at Children's Dallas are really good at finding seemingly impossible solutions.  Dr. Barth, thinking out loud, suggested that a much longer GJ tube might be the answer, but he had to find out if it was available in the size necessary for Kaleb.  It was, and Kaleb was back in Interventional Radiology the next morning for his 3rd GJ tube in 2 weeks.  I was understandably terrified, since this was Kaleb's second date in 3 days with the rotating table and no anesthesia/sedation meds, but this time would be different.(slightly) Using the newly placed GJ tube as a guide, the Radiologist was able to place the new tube that was 8 centimeters(3.14961 inches) longer than the original, successfully and in about 15 minutes.  I'm grateful that it was successful and Kaleb didn't need another surgery, but again....no one will ever convince me that it can't be done better than strapping a toddler to a rotating table and jamming a foot long tube the diameter of Rigatoni into his belly, absent anesthesia and sedation meds. 

Back on the Cardiac floor, with his newly placed GJ tube, his tube feeds were restarted, and we were able to start thinking about getting back home.  We were told by the GI team that they have never seen this defect before, and if they document it, they'll give us a copy.  It's strange how I thought I would feel better when we finally had the answers for his GI problems, but I don't.  There really is no magic "fix" for this problem.  His longer GJ tube will help him grow, and that's really important.  But we don't want him to be tube-fed forever.  Dr. Barth says kids with the severity of feeding issue that Kaleb has usually eat by the time they are 8-10....years old.  I'm still in shock about it.  He says we'll be happy years from now that we've been patient.  Well...it's clear he doesn't know me very well because I've never been a very patient person.  ;)

For now, I'm focusing on seeing everything positive about this GJ tube.  So far, I have the following list:
1.  He's been cleared by Dr. Barth to get back in feeding therapy, and I'm optimistic that with our awesome Baylor Our Children's House therapist, Lauren, he will start rockin' the potato soup again soon.
2. He's no longer vomiting formula(he is still vomiting though), so he's growing!!  He's finally hit 22 pounds, and drum roll please....he's ON THE GROWTH CHART! What? What?! Yep, that's our not so little man checking in at 10th percentile. 
3.  There are some amazing tubie moms out there that sew the most amazing covers, backpacks, and clothes that make tube-fed life much easier.  Kaleb has been working on wearing his backpack, and he looks adorable!  It's still a work in progress, because with the formula, bag, and pump, it's several pounds of extra weight.  But I'm so proud of how he's just accepted it as another part of him without complaint.
  
That pretty much covers how Kaleb got his GJ tube, and everything we learned in the process.  We continue to be amazed by the resilience of our sweet baby, and thank you for continuing to love him and pray for our family.

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

 

So happy he was peacefully sleeping after surgery

 

 

Finally an escape from the room-wagon rides rock!

 

 

Calling me on his remote phone while working his Iphone app-a Mama fave!

 

 

Listening to his heart with his special stethoscope-it is on the right side!

 

Dr. Pepper anyone?  2 days after GJ, he started doing this for the first time.

 

His wonderful Mimi(my mom) sharing a nap

 

ROADTRIP!! The car is filled with something for every possible disaster, tons of toddler entertainment, and beer for mom and dad when we get there. Austin-bound for the next 36 hours. Wish us luck!

Never Give Up

 

 

 

 

  The night before Karl and I got married, he gave me a necklace with 2 hearts that are connected.  I love it, and have worn it almost every day since then.  When Kaleb was born and the time came for his life-saving Cath procedure, it was impossible to watch him be wheeled away from us-so tiny and alone.  The kind nurses of Children's let me tape the necklace to Kaleb's bed, so we felt that part of us was always with him.  It's become a ritual for every procedure he's had since then.  The first Christmas after he was born, Karl gave me a pendant with Kaleb's birthstone...Peridot-green like a frog(could it be any more perfect?!)... to add to the necklace.  This past Christmas, Karl's parents gave me the K...for my 2 boys....and then the necklace felt finished.

 

 

  

 

 

Back in March, when Kaleb's participation in the Baylor feeding program was "suspended", I was terribly disappointed.  I really believed that the program was at least the beginning of Kaleb beginning to eat and enjoy food.  I'll admit I started to worry that it might never happen, and I was just overwhelmed with sadness about it. 

The same week he was dismissed from the feeding program, we left for the Round Top Antique show.  We had planned the trip 6 months before, but now my heart wasn't completely in it.  I did manage to dig up some enthusiasm for my pilgrimage to the Junk Gypsy tent, though.  Anyone who knows me well, knows I am a HUGE fan of the Junk Gypsies.  I was wearing their stuff long before they left College Station, and I'll probably still be wearing it under my flannel muumuus 30 years from now.  But I digress...

In the JG tent, I had just picked out a "My one and only rebel child" onesie for Kaleb, when this necklace caught my eye.  As soon as I read it, I knew it was made for me.  Suddenly, I felt this amazing combination of hope for the future and shame for even temporarily doubting my son's potential.  From the beginning, he's been defying very long odds, and learning to eat will be no different.  A year ago, I prayed  he would be doing half as well as he is now.  He just needs time, but my expectations for him(not of him) are always getting higher.  As his mom, I'm not only there to cheer when he reaches each precious milestone; I'm also there to (lovingly) push him to the next one.  Sometimes, I just need to remind myself to be patient...something I'm not likely to be better about any time soon.  But oh, how I love my sweet, smart, adorable, hilarious, precious, loving, incredible son.

 

 

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?!