T-R-A-N-S-P-L-A-N-T

Yesterday Tim had a cardiac catheterization, to give the doctors a more detailed look at his heart. What a long day, but Tim did great considering he got started a little after 5 this morning. After arriving at Children’s at 6AM we were immediately brought into the pre-op staging area and got to know a very nice nurse who started getting Tim ready for his cath. Everything was going smoothly until it was time for the dreaded blood draw which resulted in a lot of screaming and carrying on by everyone favorite red-headed boy. He finally calmed down and we then got a visit from Dr. Butch, easily the nicest doctor I think we’ve ever met, which is really saying a lot. His bedside manner was what really helped Tim settle down before his procedure. Our last visits before the procedure were from the cath lab team including Dr. Wax, his fellow and nurse practitioner.

During this part of the visit we were a little surprised to hear that there was a chance for an extended stay if they saw anything they wanted to try and resolve with an angioplasty or stent. It wasn’t so much surprising that if either of these things happened it would result in a longer stay, more that this was the first we were really aware that this was a possibility. The instant thought was that we hadn’t packed anything for the unexpected, but possible, need to stay the night but we decided to just go with the flow and see how things worked out before letting any panic set in comfortable with the knowledge that it is just a 40 mile round trip from hospital to home and back again if needed.

Finally the team was ready for Tim just after 7:30 this morning and after a little Versed social lubricant for Tim he was more than happy to head off with his nurse to get to the cath lab. Mom & Dad took the opportunity to grab some much needed breakfast after joining Tim during his morning fast and then settled into the waiting room. As these things seem to always go we wound up waiting longer than expected and nerves started to set in until we finally got a visit from the nurse practitioner who gave a positive update that no interventions or issue had come up so far and they were just getting lots of film and pressure readings to allow for a full diagnostic picture that could be shared with all of Tim’s doctors. About 30 minutes later we got another visit from the nurse practitioner letting us know they were essentially done and just checking to make sure they didn’t need to get any more readings or pictures before closing up and that they still had not had to do anything that might necessitate a longer stay.

Another 20 minutes later we got a visit from Dr. Wax, who again assured us that the procedure went as well as could be hoped. He did find some narrowing in Tim’s pulmonary artery that he speculated could be an artifact from his old banding that was causing some of the high pressures that had been seen in prior echo results. He mentioned that he didn’t want to try doing anything to resolve the narrowing today because he didn’t think it would make that appreciable of a difference in the big picture and that because of Tim’s unique physiology it made for a tricky job for him that he wasn’t fully prepared for today. He mentioned that they would discuss this, along with some damage to his coronary artery that appeared to be from a prior surgery as well, at the weekly cardiology meeting with the full cardiac team and they would also forward everything to Dr. Bove to get his opinion as well. Dr. Wax did confirm that while Tim’s pressures were running high, they weren’t dangerously high right now and that he was fairly stable and should remain so for some time, which he said could most likely be measured in years.

In the end the results were essentially what we were expecting and will go into our mental file as part of a larger decision making process. The end result is that Tim’s heart was worn out and while the double switch was a success from a surgical point of view his anatomy won’t last forever in its current state. That means that at some point we will probably need to make decisions about a heart transplant and weigh everything that we know with how he looks and feels over time in conjunction with the medical tests available to decide if and when we need to actively pursue a transplant. Of course the only problem there is that we will be trading one set of issues that we know for another set of issues that we don’t know. At least it is not a decision or action we have to make today or anytime in the immediate future.

The rest of Tim’s day was pretty uneventful. After going to the post-op recovery room and charming his nurse there with his quick wit and desire to be a chef we got transferred to a private room on the regular floor which was quite spacious and comfortable for Tim, Mom, Dad & Rosie. Considering how concerned Tim was about staying still for hours going into today he did a great job of being still with no prompting from anyone. He nodded off for cat naps from time to time, enjoyed a wide variety of foods throughout the afternoon and enjoyed watching movies and TV with Mom and Dad waiting on him all the while. Tim’s brave attitude even seemed to inspire little Rosie who decided Tim’s hospital bed was the perfect place to learn to roll over and practiced her new skill most of the afternoon. For once we were discharged right on time and were able to get out and away for a quick dinner where Tim got to enjoy several of his favorite foods including bread, calamari and chocolate, finally catching up on all the calories he went without for the first part of his day. After finally arriving home Tim went right off to bed ready to get some rest and ready to take it easy again tomorrow so he can let his leg fully heal and looking forward to our Wisconsin Dells vacation in 2 weeks where he will be able to enjoy all the pool time he wants.