The Day Draws Near

Before Noah was even born I was looking forward to bringing him home. I imagined going into his room to change his diaper and sitting in the rocking chair to feed him. I even imagined watching him in the swing as I sat at my computer and worked. I had all these ideas on how life would be different once he was here.

Life is definitely different. Just not how I imagined it.

Noah's nurse (the Transplant Coordinator) figured he would be able to be released on Friday. But since he now has a blood infection, the Surgeon says he needs to be on 10 days of an IV antibiotic which started Saturday. So chances are he won't be released till Monday or Tuesday. But, he will reassess on Friday and see if he can switch to an Oral antibiotic or just keep the IV and come back to the hospital once a day to get his flush.

I just can't believe the day is near that I will be able to walk out the hospital doors with my baby in my arms. It has been such a long 5 1/2 weeks, yet he didn't even have to wait very long for his new heart and his recovery since has been so fast. I am so thankful that Heavenly Father quickened the time. I can't imagine how hard it would be if we were still waiting.

One item of interest: I had to put Noah's feeding tube (NG Tube) in today. This is the tube that goes in his nose, down his throat, and into his belly. I then had to learn how to check placement. I was really nervous because I didn't want to mess it up and cause him pain but all went well. Hopefully he won't need it long. He is eating fine, he just gets too tired to finish. So until he gets his strength up and can eat more, we will put his "leftovers" through the tube.

Tomorrow I go and pick up the 9 or so Rx's from the pharmacy and meet with the Nurse to learn the correct dosages and schedules. He has to get his Neoral at 8 am and 8 pm every day for the rest of his life. And it has to be at 8. I can't forget and give it to him 20 minutes later.... Guess I need to get a watch with an alarm on it. The Neoral is the medicine that suppresses his immune system. He is on another suppressant too for the next 6 weeks or so but then that is cut. So lots of meds right now, but there should only be the one forever. (Tammy, I will post which meds they are once I get the "list" tomorrow.)

Once our 3 months are up and we get to come home, we have the choice to either switch his primary care to Primary Childrens and begin following their program, or stay with Denver and come back for all the major tests and any possible rejection but have Primary's facilitate Denver's program for us. We are going to stick with Denver's program because they use lower levels of suppressants and have less of a risk for Kidney Transplant (the drugs he will be on can cause Kidney damage and many heart transplant patients end up needing new kidneys). They also don't use Steroids as long term treatment. He would only need those to treat a rejection episode. So I feel really good about their program and the results they have had. Only downside, is we will need to make a yearly trip to Denver for his Caths. But hey... Denver does have one of the best water parks in the nation.