Thursday, September 27, 2012

Surgery Delayed

It's been a week since Kimble's heart cath.  I've been anxiously waiting for the results of his doctor's discussion.  Late yesterday afternoon, I got the call I've been waiting for, and the news I was hoping for.  The surgery is cancelled!!

After discussing everything, our team of doctors concluded that Kimble's heart isn't functioning at a high enough level required to do the Glenn reversal surgery that they were tentatively planning for.  Just as Dr. Fagan mentioned to us after Kimble's cath, the tests verified that although Kimble's right heart has grown significantly since birth, and even more since his last surgery when he was 7 months old, it still isn't within the limits needed to pump his entire blood supply.  This is largely due to his faulty tricuspid valve.

The valve isn't capable of letting enough bloodflow through from the right atrium and into the right ventricle.  The valve is compared to a doorway, and it's leaflets compared to doors.  First off, the doorway is small and narrow and limiting.  Secondly, the doors don't open and close properly.  Third, the hinges and fittings are either missing or are so dysfunctional that they won't work.  That's what Kimble's tricuspid valve is like.  So the amount of blood needed just isn't getting through to the right ventricle.  That is why the right ventricle didn't form en utero, and that is also why the pulmonary valve didn't form.

The question was debated whether our surgeon could help the tricuspid function better, and the answer is no. At least, not at this time.  There may be something we can do in the future, but at this time, it cannot be fixed surgically.

If Kimble was struggling with heart healthiness right now, then his team of doctors would have figured out something else that they could do for him. However, Kimble is robust and healthy and energetic and happy.  So they are following the rule of thumb that states "If its not broken, don't fix it."  By trying to eliminate the result of "messing up a good thing", his doctors have chosen to just sit tight.

In conclusion, Kimble is doing well and is stable.  For now.  His next appointment will be in six months (the longest we have ever gone between visits) and at that time. we will do more tests and see what they prove.

Kimble is not done with surgeries.  His heart is not normal functioning. He is still stable and life-threatening.  This decision only concludes that he isn't immediately ready for the next surgery.  He needs more time to grow.  His heart needs more time to grow.  Pressures need to come down, and heart function needs to improve.

What this means to me, is that I get to have more snuggles, without the stress of going through another surgery at this time.  This also means, that we can work on Mr. Kimble learning how to make his smiles look like happy grins, instead of crazy cheesy psycho looks!

Friday, September 21, 2012

Outpatient Cath & MRI

This week was Kimble's first round of pre-op tests in anticipation of having his next surgery.  He needed to have a 3D MRI as well as undergo a heart cath.  All of this, of course, needed to happen at The Children's hospital, so with The Husband off of work for the day (our rule is, that if Kimble is ever under anesthesia, we are both at the hospital with him), we left the house at 6am, preparing for a long day of waiting for the testing, and preparing to stay the night just in case it was needed.  (All the kids were up and getting ready for school, and under Kamy's management, they got off to school at 7am, and I had some lovely people waiting to watch them after school, so everything at home was taken care of.)
 
Kimble was allowed to drink clear liquids until 8am, so he had a sippy of apple juice.  He was all smiles, and happy to go bye-bye in the car, although he had no idea what the plan for the day was.
 

We arrived at The Children's Hospital just before 8am, and were right on schedule.  We had Kimble's backpack filled with books and toys and his special comfort items, which included his favorite blankie, a bear made of soft alpaca hair, and his little giraffe that plays soft lullaby music, which has made a comeback recently in his favorite category.

 
After checking in downstairs, we went up to  the 3rd floor to get prepped in the Cath Lab suite.  We had a room assigned to us and Kimble was given a hospital gown and pajama bottoms to change into.  Kimble immediately perked up as to "Hey, something is going on here" and after that, required lots of comfort and soothing affection (which we were happy to give).


After blood pressure, pulse ox, nasal swabs and temperature readings, we had time to read stories. Kimble loves reading about dinosaurs!

 
Our nurse turned on Toy Story for Kimble, and after getting bundled up, he settled down to watch his favorite movie.  All during this time, we had his Anaesthesiologist talking with us, our nurses explaining things, and other workers having us sign paperwork.  Our room was busy, but Kimble was zoned into his movie.

 
I tried to get a picture of the three of us, but Kimble was just annoyed that we were disrupting his view of Toy Story.

 
Once again, picture with momma...but he was watching his movie and couldn't be disturbed to look at the camera.  Oh, and he took off his hospital gown, as there was a tag in back that bothered him, as well as the ties were lumpy when he laid down.  I have plans to make him his own little robe and pajama pants for his next hospital stay, which won't have those annoying attributes. I hope he will like them.

 
About 9:45, Kimble was given some Versed, which helped to relax him and get him ready for anesthesia.  Kimble turned a bit loopy, and was saying funny things and giggling. He was so funny.  As we left our room, to go downstairs to MRI, Kimble waved goodbye to all the workers and said  "All done!  I go home now!"
 
We were able to take him right down to MRI and get him settled.  Here we are, walking down the back hallways, with our nurse Jessica.  Kimble was laughing and saying funny things the whole time.


We got him lying down on the MRI table. His Anesthesiologist, Dr. Twite, has been his Anesthesiologist before, which is always comforting.  He was really great at making Kimble feel comfortable as he was getting the mask over his face.  He knew Kimble had his special giraffe toy, from when he was talking with us earlier, and so he told Kimble a story about the zoo, as Kimble breathed in and out and within 30 seconds, was asleep. 

The plan was for him to undergo a sedated 3D MRI (scheduled for the next two hours) and then they would transfer him up to the Cath Lab where he would  have his angiogram and other things associated with doing a heart cath (scheduled for 3.5 hours). After all of that was done, he'd be brought back to his room and once awakened and stable, we would be able to see him.  So we had about 7 hours of waiting in store for us.

During that time, we got something to eat, spent some time in the library using the computer, looking through food magazines, finding quiet corners of the hospital where we were away from the crowds (I love that we know the hospital so well that we can do that).  We also chatted with another of our doctors, Dr. Younoszai, who specializes in fetal ultrasonography, and was the first of our team of doctors that we met when I was still pregnant with Kimble.  He has been a great source of information and comfort through all our procedures, so it was nice to catch up with him again and get his opinion about Kimble's surgical future.

We received phone calls every hour, updating us on Kimble.  Through it all, Kimble responded well to all their tests, remained stable under anesthesia the entire time, and his doctors got some great images and data that was necessary to make a decision about his next surgery.

Towards the end of the Cath procedure, Dr. Fagan (his cath doctor who also has been with us since the beginning) noticed a collateral vessel coming off of Kimble's innominate vein from the left side of his body.  A collateral vessel is an extra blood vessel that gives an alternate route of bloodflow.  These vessels shouldn't be there, but are formed by the body as a measure to reduce pressure.  Although sometimes this could  be life-saving, in that the body tries to adjust to route bloodflow if the main pathways are blocked or altered, but in Kimble's case, this wasn't ideal.

 This collateral vessel "was not small", in the words of Dr. Fagan.  It was redirecting a large amount of blood away from the superior vena cava (which was carrying his redirected blood directly to the lungs, bypassing the right heart) and directing it down behind the heart and into the renal arteries.  This blood was in a state of recycling in that it never made it to the left heart to get pumped to the body.  So basically this meant that the right heart was working harder than it needed to, while the left heart wasn't getting the blood volume that it needed to circulate through the body.

So what Dr. Fagan did was "occlude" the collateral vessel. This means that he inserted a coil (from the same place in his groin that they inserted the cath for the procedure) and threaded it up through his arteries, through the heart, and to the collateral vein. There, they coiled (or clamped) the vein closed, thus preventing further bloodflow.  Now, Kimble's blood is going where it should go.

All this was done in the Cath Lab, and Kimble remained stable and happy under anesthesia.

About 3:45, we got a call that they were all done, and were taking Kimble back to his room.  It would be another hour and a half before we could see him, but that was fine. Kimble was brought out of anesthesia and he slept for another hour before he started waking up.  Meanwhile, we discussed all of this with Dr. Fagan, and he gave us some further insight into the initial results.

Dr. Fagan's initial opinion (without compiling all of the results) was that Kimble's right heart wasn't large enough to handle the entire body's blood supply.  As you may know, half of Kimble's bloodflow is rerouted to bypass the right heart, and go directly to the lungs to get oxygenated before going to the left heart to get pumped to the body.  This was done in a surgery called The Glenn when Kimble was 7 months old.  Since then, Kimble's defective heart has grown significantly, and is actually able to circulate and pump blood.  Currently it's pumping half the volume. So the question we want to know, is if his heart can manage the whole workload.

Dr. Fagan said the pressures in his right ventricle are at a 9.  He says that is very high. So if they are that high with only half the body's bloodflow, it would make sense that giving it all the body's bloodflow would make his pressures skyrocket....something I've been deeply worried about since the suggestion was given to reroute the blood back to the right heart.

Or...he could do fine with all the bloodflow.  We won't know until all the tests are compiled.  Plus, the pressure level is high in the SVC where it's rerouted to the lungs.  High pressures all around, except for the left heart, which has low pressures and low volume.  He also has a good amount of regurgitation occurring at the pulmonary opening (he has no valve there) and at the tricuspid valve (which is as faulty as it can be).  This also accounts for why the left heart has low blood volume, as all the blood in the right heart isn't getting pushed out with every pump.

Now his team of doctors will discuss the test results in their roundtable discussion.  They should do this in the next week or two, and then we'll know what the plan is for the next surgery.

I'm thinking they have three options that they could go with.  1.  Do the reversal surgery as initially planned.  2. Do a different surgery to help with bloodflow and decrease pressure levels.  3. Don't do any surgery right now, and wait until the right heart grows more.

With that, we wait to find out what they conclude.

Meanwhile, we were able to go back and see Kimble right when he was starting to wake up.  He was talking a bit with the nurse, when we walked in.  We quietly let her do her postop work, and we watched Kimble get re-focused.

 
After about half an hour, he was doing well and could drink something.  Apple juice.  He drained his sippy cup, and said "pweese more juice" and so we gave him more.  He drank three sippy cups of juice, and was recovering perfectly.  His nurse Jessica was awesome.

 
He still had his IV in, just in case it was needed.

 
We turned Toy Story back on for him, as he was supposed to stay lying down for the next hour.  Kimble often will hold my hand, if we are watching tv together, and this was no exception.  His fingers curled around mine and he quietly watched his movie.

 
Two hours of lying down, then it was time to sit up!  I held him for a while, as he continued to drink juice and watch Toy Story.

 
We were almost ready to go home!  We took a trip down to X-ray, to make sure the coils from the collateral vein were in place and doing their job.

 
Then after some quick paperwork and antibiotics from the pharmacy, we packed up our things and were released.  Kimble could go home.  He recovered perfectly.  What a great patient.  By 7pm we were heading out to the car, with Kimble resting in the wagon.


He ate a few goldfish crackers as we were waiting for Daddy to bring the car around.

 
 We were home by 8:30pm.  Kimble was instructed to rest as much as possible, stay off his feet until he felt more sure-footed, and drink/eat as normal.  No baths for 5 days, keep the groin-site clean, and have two more doses of antibiotic over the next 12 hours.
 
All is well at home.  Now we wait to see what the doctors tell us is the next step.

Wednesday, September 19, 2012

Released

 
Just one year after being called to be the young women's president, at church, I was released.  It was a sad day for me, as I have loved working with the youth.  We had some great times with the girls, and I have loved growing closer to the women I served with as well.  Even though only half my young women were at church that day, we still took a picture to say goodbye with.  Oh how I'll miss them.
 
I know it was done to help alleviate my stress during this time of preparing for Kimble's next surgery, but it was still hard to accept.  However, I can see the wisdom in it, since I was beginning to really worry about how I was going to manage everything.  Now I can just focus on my family and especially on Kimble, for a while, until we are all back to normal again.

Denver Aquarium

 
We got the opportunity, as part of our Mended Little Hearts group, to go to the Denver Aquarium for an activity for all the members of our local chapter.  It was sponsored by some wonderful people who made the day extra special for all the heart families.
 
After we checked in, and while we were waiting for the catered lunch to be ready, we had some mermaids to visit with! The girls loved asking them all about how they were able to breathe under the water and use their tails to swim super fast.

 
There were two balloonists there who could make anything with a balloon.  It was crazy and impressive  all the animals and things they came up with.   They also made the balloon animals wearable, either across their body or on their heads. Each of the kids got to request a balloon animal.




 Mr. Kimble wanted a horsie.  I loved it!
 
 
Everyone enjoyed their balloon animals so much.  They certainly crowded our pictures, though!


 
There was also a sloth there, to touch and to feed.  Here is Kimble, debating whether he wanted to go for it.  When he is figuring things out, he puts his hands behind his waist, like in the picture.  He is so cute.


He eventually decided to go for it, and fed the sloth some lettuce leaves.

 
He was happy after that!
 


 We moved indoors, after  lunch, to see all the sea life they had there.  Kimble tried to share his sucker with the fish. Too bad the thick glass prevented this.


Kamy had her back to the glass when the sharks were roaming around. This one looked like it was coming right towards her!


There was a little bubble that you could pop through, to look like you were part of the aquarium. Keaton and Kolby demonstrated this fun offering.


We were pretty interested in the scary eel, who liked to sashay in and out of his giant shell.

 
We went outside after all that, and let the kids bounce around in the bouncy house. We took the opportunity to take a kidless picture!

 We went back inside and let the boys (and Kamy) take turns at climbing the big coconut tree.  Kamy and Kolby couldn't make it to the top, but Keaton did!

 
Lastly, before we went home, we watched a little 4D movie that they had, which resembled a rollercoaster.  The kids all loved it.

 
It was a really great day and a wonderful event that was put on for the heart families. We were so glad we were able to go.

Father/Son Campout

Last weekend was a Father/Son campout, through our church.  The boys were going to camp out at Turkey Creek, and although they were all excited, I think Kimble was the most anxious about "going bye-bye with Daddy".  He was all ready in his stolen cowboy hat, new boots that were sent to us by a friend (Thanks Katie!) and his outdoorsman vest. Yup. He was ready.
 
 
He even spent some time with the chickens, to prove how outdoor-sie he could be.

 
Finally, dad came home from work, and after gathering up a few things, they were ready to go camping!

 
Keaton and Kolby were just as excited to go camping!  They packed the car with a few blankets, pillows, changes of clothing (which The Husband said they wouldn't use), toothbrushes (which he also said they wouldn't use) and some stuff to make smores.  They opted to grab a pizza on their way out, and eat that instead of their usual spaghetti and meatballs hobo dinners I normally prepare for them.
 

 
I sent the camera with The Husband, to capture the happenings. This next picture is how they slept: all piled in the back of the Subaru, the four of them all snug as a bug.  Oh, and do you notice Kolby's dirty upper lip?  It's a combination of marshmallow goo and soda and whatever other treats he shoveled in all night.
 
 
 In the morning they sat around the campfire until breakfast was made.

 
Keaton held tight to his multi-tool and even found a few sticks to whittle away at.

 
I don't know what happened as to why Kimble is upset, but notice Kolby's upper lip, still encrusted with dirt and grime.  This is a perfect example of the difference in my idea of camping (still stay clean and neat and always wipe faces before pictures) and The Husband's idea of camping (whatever...as long as they are safe).

 
Mmm. Breakfast.  Kimble worked up an appetite!

 
After breakfast, they came home and took showers and naps.  The girls and I enjoyed a quiet night at home where they had rootbeer and brownies and they watched a movie in my bed with me.  Fun times all around.