~ERYNE UPDATE~ DAY 3- Friday Eryne CF Shan is back in surgery right now. They put five chest tubes in, 2 on each side, one in the middle. The right lung is draining fine, the left chest tubes have very little trickling out. They did an X-ray to see why, the X-ray shows large blood clots (plural) obstructing the left lung. It also is compressing the left lung. A CT scan was done today and ever more blood clots are visible. Any blood clot(s) are dangerous and could be fatal but thankfully these clots are not inside the lung, they are in between the lung and the chest cavity. It is possible there is internal bleeding, another reason why Eryne is back in surgery. The surgeon (who I love!) is going to reposition the chest tubes to see if they work better. Unless something changes, the ECMO is being removed tomorrow. (Yea! I can not imagine have tubes sewn into my head, arms and legs!) Eryne had dialysis again today. They only cleaned the kidney and didnt pump any fluid off. Her Creatine today is a little high at 1.57. Shes putting out about 10cc of urine per hour. Her kidneys are sluggish. PLEASE pray they will kick in again. Erynes WBC is really high at 25,000 indicating an infection somewhere. There was a part in her old upper right lobe that probably was colonized with some kind of bacteria. The lymph node next to it was so swollen it was the size of a potato! They removed that lymph node during surgery. (Ive never heard of that. Has anyone else?) Eryne had her first bronc post transplant. Things looked really good. The surgery yesterday to close her up went well. Im praying the surgery shes in now will go well too and that there will be no internal bleeding! I hope we can help this family. I love them and admire them greatly. I do not think either Jordan nor myself could have spent seven months in the hospital. Unavoidable calamity after calamity has befallen this family since March 2014. I want to see Eryne live to be 24, something Jordan didnt get to do. I want to see gorgeous Eryne walk down the aisle in a beautiful wedding dress. I want to see her get married to her still here in the bad times fiancé Michael. I want to see her mom return to work to try to get out of what has to be massive debt due to Eryne being in the hospital for so long. I want to take Eryne shopping to look at wedding dresses. (I cant wait!) I want something too. Lung transplantation is mostly an anecdotal science. There are not many lung transplant doctors in the US, much fewer that do lung transplant and CF. They all meet at conferences and exchange anonymous patient stories. Just as Jordan was mentioned recently (No one ever goes into cardiac arrest during a bronc) and Carrie was (ECMO Girl Walking) mentioned the year before, I have no doubt it will be Erynes turn this year. She is the ONLY patient I have heard of that was transplanted with a 97 (!) LAS score. Most doctors would say there is no way someone could survive a transplant with a score that high. I know because Ive heard a few doctors say that. I also dont know anyone is the 90s transplanted. Some centers had the policy to take patients off the transplant list if their LAD scores were too high. (The LAS score goes from 0-100 with 100 being the worse.) I am donating to Eryne my time, my energy and my been there advice. Ive also donated to her Transplant Fund. Eryne is a gift to those of us in the CF World. Shes a worthy investment. She has shown she is CF Tough. She has spent over 200 days in ICU. She had a collapsed lung, was put on a vent, had a trach for the vent, put on ECMO, got up to walk so she could do better after the transplant and had a ECMO dance with her Daddy. Eryne is showing the transplant world that you can be transplanted at a 97 LAS. You can have ECMO for over a month. My CF child, Jordan Ulrich, is gone now. She got 23 years, 0 days, and 13 hours. It is YOUR children I am fighting for. It is your CF child that Eryne could potentially help. She laid the foundation for surviving, never giving up, and always being positive. To me, she is worth the investment. How to help: * Nothing is more important than Prayer. Please keep Eryne and her family in your thoughts and prayers. * Eryne has a Go Fund Me Account listed below. It takes around 7% for a fee but its nice if you want to leave a message honoring your CFer both past and present. * Eryne has a Pay Pal Account. It you click Send To Family and Friends there is no fee if it comes from a bank account. It does take 3-5 days to process. If you use a credit or debit card it is available immediately and charges a small fee. * Some people have asked about holding Fundraisers. How lovely for the Shan family! If you will email me at lesa.ulrich@gmail or PM me I will forward them along to Eryne and her family. PS Erynes mom will be returning to update soon instead of me. Right now she is trying to get all the rest she can while Eryne is asleep. Imagine how worn out you would be driving 6 hours EVERY day for 7 months! Erynes dad Russell drove from another state where he works every weekend to see Eryne. They are better people than me. I think it would have been incredibly hard for me to do. **Pay Pal (paypal) Erynes account is eryne4cf@gmail **Go Fund Me (gofundme/451sf8
Posted on: Sat, 11 Oct 2014 03:55:02 +0000
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