We picked up our rental car, gave Caleb his breakfast/medications and headed right to the hospital on Friday morning. First on our agenda was Caleb's walking stress test. He passed with flying colors, never going below 97% for his oxygen levels. (Remember prior to starting his pulmonary hypertension medications, he was 86%.) Right after that test, we went to the BMT clinic to have his blood drawn. He must have been a little dehydrated because it took 3 pokes to get the blood they needed. Poor guy! Right after they drew his blood, we went to have his echocardiogram done. Once that was done, we headed back to the BMT clinic for his appointment. Yes, it was a lot of running around. Here he is with his favorite, Miss Holly:
We met with Dr Krance and Sameeya, Caleb's nurse practitioner, and got all of my questions answered. Caleb's labs came back during that time and were not good. I was in complete shock because his labs have always been so good! They called the lab and found out that the tubes sent had clots in them, so the results were not accurate. (Why the lab even gave them the results is beyond me!) Thankfully they had saved some tubes of his blood in the clinic and sent those to be tested, which contained "good" blood. We then learned that his labs were once again fantastic. They decided to cut his steroid dose in half, and we will cut them in half again in 2 weeks if he is still doing well. Once he's completely off of the steroids, they will start to wean his anti-rejection medication. This process will take a few months, but I am just glad to have a plan in place! The best news was that we don't have to go back to Texas for 6 months! At that time, he will have his ONE YEAR post transplant testing! Time is flying!!!! We are so blessed that Caleb is doing as well as he is!
After all of my questions were answered, we went to say goodbye to all of his clinic buddies. The nurses offered to watch him for me so I could go on the BMT unit and say hello to a fellow "CGD mommy." Alice and I have been in contact for a year now and her little boy was just admitted to get his new factory, just like Caleb. Timothy wasn't having a good day, but it was so good to finally meet them in person! I ran into a few of Caleb's favorites while on the unit, so they came with me to say hello to Caleb back in the clinic. He was such a little ham and was cracking them all up! I think they miss our little stinker! They all kept commenting on how great he looks!
It was 4:00 by the time we left the hospital! Caleb wanted to make a quick stop by the trains. This was something we did every day prior to his transplant when we went to clinic. A man donated a bunch of trains and maintains them and decorates the tracks/scenery for each holiday. There are buttons on the outside of the glass so the kids can operate the different trains/accessories. Caleb loves this!
The Elmore's were so gracious again and let us stay in their guest house! (THANKS AGAIN!!!) We got to see our Texas family briefly, but didn't get too close because they were all sick. It was so good to see them and we wished we had more time to visit! The next time we are in Texas, the kids will be able to play together again! That will be so much fun!
We got up bright and early again on Saturday to find a monsoon had arrived in Houston! Ben warned me that Houston people do NOT know how to drive in the rain, and he was right! Yes, it was raining pretty hard, but not hard enough to be going 20 mph down the highway with their hazard lights blinking! HA! I had to laugh! We got to the airport in plenty of time to sit and wait because our flight was delayed an hour due to the rain! Thank goodness for the iPad!!
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