Thursday, July 25, 2013

Day +9 Discharged

July 25. 2013

Last night around 9:30 p.m. our time I spiked a low grade fever of 100.7. When the nurse read my temperature my heart dropped. I knew what the protocol was for this was and it included blood cultures from my central line, blood culture from a vein, urine culture, and a chest x-ray. I just kept thinking this cannot be happening. My worst nightmare was that I had an infection and my progress was going to be delayed. I was crushed. Then after the nurse paged Dr. Burt, he just ordered  me to only have blood drawn from my central line. For some reason this eased my mind. I had a suspicion that Dr. Burt did not believe I had an infection and I was able to get some rest for the night.

This morning Dr. Burt and his team came bursting through the door with huge smiles saying, "Congratulations. You did it. You are going home." I was stunned. What do you mean? I had a fever! All of these thoughts were bursting through my head. Before I could utter a single thing, Dr. Burt began explaining to me that sometimes patients will run a low grade fever when the stem cells are engrafting into the bones. So, the fever was actually a good thing. How was I to know when all along this place was making me paranoid about fevers. And, what does engrafting mean anyway? In a nutshell it means that my body has officially accepted the stem cells and the healing has begun.

Another concern of mine during Dr. Burt and I's morning meeting was that my white count was now 0.8. Don't get me wrong, I was happy that I was getting discharged, but I know that the minimum acceptable white count is 3.5. Again, my mind began bursting with thoughts of, "What are you doing sending me out into this world with counts still that low?" "Are you seriously wanting to kill me?" Again, who am I to question Dr. Burt? They drag their feet during the discharge process so they can get one last set of labs. My second set of labs returned this afternoon with a white count of 2.6. What a relief that was.

Today has been bittersweet. I am happy to be leaving the hospital, but at the same time I am scared to be leaving the safety of this place. I have been more than physically healed. My mind, body, and spirit has become refreshed and renewed; and how can I forget my new, growing immune system.

I have met a lot of really nice people who I will forever be connected to because of our experience at Northwestern. Below is a picture of all my new friends along with some of the wonderful doctors.


                     From left to right: Kelly, Me (Bryan), Monique, Amy Morgan, Doug, and Ben

Finally, I received one last visit from Drill Sergeant Ashli, my physical therapy assistant. We had been discussing a goal of trying to walk with a cane before my discharge.  I was so glad she walked through the door with cane in hand. One more hurdle I needed to jump before leaving. Here is a video of my first attempt at walking with a cane.

With my final bow, my PICC line was removed and I was whisked away to the sanctity of our apartment. We will continue to stay here in Chicago for another week. This will allow me to have one final blood draw before we travel home. I know that these next few days will be difficult because all I want to do is get home to see my daughters. Patience is a word that I must focus on. I want to be as healthy and strong as I can when I see their faces.

Another day I am in simple amazement of the things I am able to do. I know I have said it before but there is no way God does not have his hand on Dr. Burt's shoulder. Please remember and pray for my new friends as they continue their journey. I would also like to conclude by saying that my results are a product of all the prayers that have been sent up to God's ear on my behalf. Thank you all so much.

5 comments:

  1. Tears of joy, here. So happy for all of you! I will continue to keep you and your friends in my prayers.

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  2. So excited and happy for all of you. Will keep praying :)

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  3. Eddie Nash here. I am so happy for you! My Wife Wendy Nash was also CIDP and had the HSCT there in Chicago. When I see another person getting their life back because of Dr Burt in this case and HSCT. You bring back the new joy I felt when I was my Wendy "Walked without a cane from the hospital to the hotel!" God bless your continued progress!

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    1. Eddie,

      I am very aware of both you and Wendy. Wendy's blog is one of the resources I used to research Dr. Burt's stem cell program. I am so glad that you guys have been following my progress. I read a lot of your posts on some of the other stem cell forums. You have a wealth of knowledge of CIDP/Stem Cell Transplant. I admire all the work you and Wendy do to bring awareness to this disease and the benefits of the stem cell transplant protocol. I look forward to working with you and Wendy in the future to continue to spread the word.

      -Bryan

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  4. Hi Bryan and Ann!!! I am so happy you are doing better!!!! Alex said that you are looking good and he was glad to see you put on some weight. He misses you yelling at them at football practice. Can't wait to see you at the games.

    God Bless!!
    Robin Rutter and Alex Paquin

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