Kendall started the day off bright and early with a 6 minute walk test to check her endurance, breathing and oxygen levels during this activity. (she wasn’t thrilled to do this because “it is too early to be walking that long” and she had already done this on Tuesday with PT/OT. “Why do I have to do this again? Can’t they just ask those other people how I did on Tuesday?” she said. Very valid point and very observant. She wants to make it make sense lol But the only answer I could give her is that it was a different doctor and this is the lung specialist who wants to do his own test because maybe your results are different from 2 days ago. I can’t find the rolling eye emoji but you get the picture of the responses i got!! Lol
Next she had a Pulmonary Function Test(PFT)- This is a test where she has to take deep breaths and blow into a machine several times to test her lung strength and capabilities. It gives you a certain number value that the lung doctor uses for his evaluation.
Supportive Care Consultation- We met with the director of this department and her job was to get to know us to find out what our physical, psychological, social, and spiritual needs are/will be. She assured Kendall that she would be asleep during the surgery and wouldn’t feel anything. Also helped her to understand that anytime someone has any type of surgery there is pain involved but her team would do everything they could to give her the best medications to manage her discomfort and they wouldn’t hesitate to try different things until they found something that worked best for her. She also encouraged me and Damon to get in contact with her and her staff personally if at anytime Kendall needed anything because she understand that pain interferes with the healing process.
More blood work
Met with Dr Zinn( cardiac transplant doctor) again for a recap of Monday when we met with him. This appointment was basically for us to get answers to any questions we had, clear up things we were unclear about, to make sure we had an understanding of the roles of each department we met with during the week and to sign consents if we wanted to proceed with the heart transplant. Based on everything we heard/saw up until that point of course we made the decision to proceed.
Pulmonology(Lung) consult- I am glad they saved this one for the end. Let me just say that we could tell this particular doctor was very brilliant, he knew everything there was to know about lungs, he told jokes and had Kendall at ease, very passionate about his profession and left us with no unanswered questions. However, there was a point in the conversation where I felt I was going to lose it. I just simply got up and sat in a chair behind Kendall so she couldn’t see my tears. The digital pictures of Kendall’s lungs and the explanation of what they looked like vs what “normal” ones looked like made me sick to my stomach. We were told that the right lung is functioning and the left one is not(which wasn’t new information) but it’s different when it has been told to you but never shown to you in that amount of detail. He said because her left lung is small, non-functioning and just kinda there taking up space, her diaphragm is paralyzed on that side because that lung is not making it go up and down when she breathes. If I remember correctly he said the left diaphragm was high up in her upper chest and the right side was moving as it should. He told us that the risks of rejection of a double lung transplant and infection were much higher than that of a heart. Successful lung transplants usually last 5-7 years at a time before you need another transplant. Heart transplants are much “easier and less risky than lungs” and when you are doing both at the same time it is very risky because of bleeding, infection. and organ rejection. My feeling was that he was leaning towards NOT recommending the lung transplant just based on the informational that was given. He wasn’t saying she didn’t need new lungs but what he was saying was that doing 2 major transplants at the same time should only be done if you have no other options. He said that people can survive on one functioning lung without having a transplant. The 2 other things he talked about was that there is no way of knowing that she may need a lung transplant in the future. But on the flip side, it is more ideal to get both organs from one donor vs doing a heart transplant now and having a totally different donor later on in life for lungs.
It was overwhelming and a lot to process and think about. Neither doctor came out and said what their recommendations or thoughts were because of course they don’t want to give parents false hope or misinformation. The team gets together and talks amongst each other to come up with a plan instead of giving their personal opinions which is understandable.
The team gets together on Tuesdays to discuss the upcoming transplant patients as I said in the first post at the beginning of the week. The transplant coordinator did call me on Tuesday evening and told me that they need one piece of information before they make their final decision. They need more information from the CT scan sent to them from Children’s Hospital in Detroit because it’s 2 vessels that they couldn’t see clearly on the tests that were sent to them. They needed more information from that scan because it was the another determining factor for their decision. From what I was told they should have this information this week and we can expect a call anytime from now and next Tuesday when they meet again.
I didn’t plan on posting this much. If there are some typos or confusion it’s because my brain is tired and I can’t even proofread or explain anything any different right now because I am overloaded with information right now and I am still trying to processall of it. I am merely repeating what was said to us over the course of the week but we are still convinced that all the risks and negative things that were told to us was necessary so that we were informed, but we know those things won’t happen. Kendall will live and not die. She will have a long, fully functional and fulfilled life. She will continue to awe doctors and defy odds. We are fully convinced and confident in this. Kendall is strong and she is here to be living testimony to us and so many others. We simply have to trust and believe in a higher power and know that everything is happening when, where, and how it was designed to. We believe God loves us that much to make us witnesses to His power and miracles.
xoxoxoxoxoxoxoxoxoxo
This journey hasn’t been easy and we don’t understand it all. But the only thing that gets us through it is our faith, family, friends, prayers and the kindness of people who continue to show us love and support. (and the people that I can call to remind me of the things that I just said when I start to get overwhelmed, weary, or doubt).
We love you all,
Cewanda and Family
#TeamKendallT
#KendallsWholeHeart
#BeKendallStrong