This seems to be our new norm. Waiting for the CALL, waiting for his heart cath to get done and waiting to hear he is listed here in Nebraska, waiting for people we hope would contact us to show support. Now I am not complaining or mean to sound like I am on a pity party, this is our life...NOW. What an amazing life it will be when we do get that CALL, whether it be at Iowa or Nebraska.
I have said it before and I stand by it...this is not a journey for everyone to handle and I guess that is why some pull away. But we have been graced by an amazing support system that has been there for us. We have so many things to be grateful for. We have encountered amazing nurses and doctors, people who we have gotten the pleasure to work with who continue to pull us through. We have had some that we had to decide weren't for us in the best interest of Eric. And that is my advice to all of you...be your best advocate. If something doesn't feel right, go with it. It will help in the end to feel in your soul that your team is the best for you and your care.
Back to the waiting...I got a glimpse into what it will be like when we get the call and I wait to hear the new heart is working. While waiting through Eric's cath I got the chance to see a family waiting. Waiting to hear their daughter came through the liver transplant, while also waiting to hear their relative, who was a live donor match, also came through fine. I talked with the young man's sister. He was a match for his cousin to donate a portion of his kidney to her. There were some tense moments when they were given news the procedure on her had to stop due to some issues...but then the news it restarted and was successful. Through the time I was in there they filled half the waiting room with family and friends offering support. As the surgery completed, they gradually left, back to their families and hopefully much needed rest. I wished them well and hoped the best for the 2 who just went through what they did. I wasn't even part of it but I sat there waiting for smiles and not tears for them. I get both...
Well, we are back today for the last series of appointments and tests. We get the chance to meet the surgeon who will do Eric's transplant if the heart comes here. We are told he is the best package of surgeons wrapped into one having experience in all the areas Eric needs; electro-physio for his ICD, pediatric and adult congenital defects. Another full day at the Nebraska Medical Center before driving home later this afternoon. Nebraska presents new cases for transplant listing on Fridays, unlike Iowa who is Mondays. There is a good chance we may not know until next week what they decide. But the chances that they don't list him here, when he is already listed at Iowa, are unlikely. And even though it is Nebraska (haha sport joke) we have been very impressed by the facility so far. Very efficient, kind and Knowledgeable doctors (2 of which are from Iowa originally). Beautiful facilities and did we mention FREE VALET parking. That is worth its weight in gold!!!
So thanks again for those thoughts, prayers and good vibes! Keep them coming our way as we need all we can get right now.
I have said it before and I stand by it...this is not a journey for everyone to handle and I guess that is why some pull away. But we have been graced by an amazing support system that has been there for us. We have so many things to be grateful for. We have encountered amazing nurses and doctors, people who we have gotten the pleasure to work with who continue to pull us through. We have had some that we had to decide weren't for us in the best interest of Eric. And that is my advice to all of you...be your best advocate. If something doesn't feel right, go with it. It will help in the end to feel in your soul that your team is the best for you and your care.
Back to the waiting...I got a glimpse into what it will be like when we get the call and I wait to hear the new heart is working. While waiting through Eric's cath I got the chance to see a family waiting. Waiting to hear their daughter came through the liver transplant, while also waiting to hear their relative, who was a live donor match, also came through fine. I talked with the young man's sister. He was a match for his cousin to donate a portion of his kidney to her. There were some tense moments when they were given news the procedure on her had to stop due to some issues...but then the news it restarted and was successful. Through the time I was in there they filled half the waiting room with family and friends offering support. As the surgery completed, they gradually left, back to their families and hopefully much needed rest. I wished them well and hoped the best for the 2 who just went through what they did. I wasn't even part of it but I sat there waiting for smiles and not tears for them. I get both...
Well, we are back today for the last series of appointments and tests. We get the chance to meet the surgeon who will do Eric's transplant if the heart comes here. We are told he is the best package of surgeons wrapped into one having experience in all the areas Eric needs; electro-physio for his ICD, pediatric and adult congenital defects. Another full day at the Nebraska Medical Center before driving home later this afternoon. Nebraska presents new cases for transplant listing on Fridays, unlike Iowa who is Mondays. There is a good chance we may not know until next week what they decide. But the chances that they don't list him here, when he is already listed at Iowa, are unlikely. And even though it is Nebraska (haha sport joke) we have been very impressed by the facility so far. Very efficient, kind and Knowledgeable doctors (2 of which are from Iowa originally). Beautiful facilities and did we mention FREE VALET parking. That is worth its weight in gold!!!
So thanks again for those thoughts, prayers and good vibes! Keep them coming our way as we need all we can get right now.
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