Still Here

Well, another minor setback has occurred. I knew that this problem was going on, however I was hoping it would be nothing and we would move on. Nolan has been experiencing GI issues, mostly throwing up from time to time. They did a few adjustments to see if the vomiting would subside, however, he continues to throw up at least 5 + times a day. Yesterday he had a gastric emptying study done which is a procedure performed by nuclear medicine physicians using radioactive chemicals that measures the speed with which food empties from the stomach and enters the small intestine. Nolan was surveyed for about an hour and a half and his stomach emptied nothing. They are unsure what is going on because it has to be emptying something because he does have poopy diapers. There are some medications that can help assist with the emptying, such as metoclopramide (Reglan) and erythromycin. Some of these medicines can cause problems with his anti-rejections medicines, and the erythromycin is an antibiotic, which they don't like to normally use because if you use antibiotics too much you can build an immunity towards them.

So, what is the plan? As of now I am not 100% sure. Tomorrow morning they will be doing an upper GI endoscopy, which is a procedure that allows the doctor to look at the interior lining of the   esophagus, stomach and the first part of the small intestine (duodenum) through a thin, flexible viewing instrument called an endoscope. Here they can make sure there's no trauma to any of these areas since we have not always had this issue. We should know more tomorrow and have an idea of a treatment plan for the future.

A little disappointing, however, I am also happy that we caught this while in the hospital so we can have it treated as an inpatient. It is a little sad because we have been in the hospital for over one month since transplant; however, Nolan is doing wonderful! His heart function is great and his results from his last biopsy were good. I am not exactly sure what his "status" was, but Dr. Feingold told me that is was good, pressures are improving, his levels of oxygenated blood produced is higher...so, all great news! I think this recovery phase has been tough on us all. We had so many expectations that we would be out of here within 10 days after surgery, and here we are, 33 days post transplant and we are still here. A part of me is so ready to move on and get home, but another part of me was relieved that they kept us! I am crazy?! But of course, I long for us all to be at home together.

On top of all the craziness going on here...learning meds, pumps and how to care for Nolan, I got to see Nolan's birth heart today. I was going post a picture of his heart, but honestly, it was a little much for me. The pathologist first went over what a normal heart and lungs look like. I can't really remember much because the thought that I was physically looking at an actual child's lungs and heart was hard to even fathom. The pathologist also showed me what a normal heart looks like...then he showed me Nolan's. It is really beat up - hard to really explain, but you could see trauma around the heart and how damaged the left side was. It is a different color and the pathologist said that it was a really sick and damaged heart. What was amazing is that the cannula from the VAD was still attached. I actually held his birth heart in my hand and couldn't even believe that in my hand was the heart he was born with. It was the heart that Matt and I created and he had at birth. And now it's in my hands. Life has just been slapping me in the face these past few days, and this was meant to help provide some closure, but instead it made me feel bad. I am so sorry that Nolan's life was given this path, but I feel so blessed that our donor family let us have a second chance. They saved two pieces of his heart muscle that they will keep frozen for any studies in the future that may be able to repair damaged heart tissue; also a piece of his heart is undergoing genetic testing. Am I glad I saw his heart? Yes. I have pictures of it, so it you are ever interested in viewing, let me know.

I believe Matt will be coming to Pittsburgh tomorrow in case we are discharged Friday morning. We are still moving forward with training in hopes we are out of here by the weekend. One step at a time. Good news? Nolan is a happy boy with a great heart. We are much better off than we were a month ago! Have to put things into perspective sometimes.

We are almost there!

#nhos
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