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.