Day +107

Posted: December 9, 2010 by Kat in Uncategorized

I’m pretty sure it’s been at least a week since my last update. Once we got home on Monday night (the 29th) Creed and I did nothing but enjoy each other at home. Our week home marked our longest stay yet, since he was admitted on the 13th of August. As of now, he’s been home 11 nights, and we’re thankful for every one of them. I did post a small update on day 100 and the thrill of having a spicy chicken sandwich from chick fil a. He would have eaten one everyday since if the doctors would let him, but with his steroid dose still pretty high they have put the no fast food rule in effect again. Just a little treat for day 100.

Friday was Creed’s 6th birthday, and although it was a little different from every other year, it was a very special birthday for him and all those who celebrated with him. You know how we live under strict rules in transplant world, and we have followed them the whole way, but birthdays are very special in our house and to me it warranted breaking or lets say stretching them just a bit. Creed has not seen any of his under 12 friends since he was admitted in August and I felt like his birthday should be shared with all those who love him, not just all those over 12. Some of his closest friends were able to come for a little bit, masked of course!! Graylyn, Millie and Charlie came over for some cake and presents. It was probably more magical for the moms, Courtney, Addie and me than the kids but requardless, it was fun for everyone. The party continued in shifts, Casper and his “parents”, Lisa and John came, and the every popular Matt was able to be there as well. The lucky ones…Emily, Garrett, Gigi and Pop were there for the entire event. Creed wanted nothing else but a new bike, so that’s what he got. One of the downers of having a December is the fact that it’s usually pretty cold, and when your hemoglobin is low and you’re cold anyway, that makes going outside and testing out your bike pretty much a NO!





Saturday was here before we knew it, and we were thrilled that we made it as long as we had. We were in clinic every morning during the week, but the weekend is where you really pray things stay stable. As you would know…Saturday is when the wheels began to shake. During the afternoon, Creed began having blood in his poop, as he has done before when his platelets are low. I spoke with the doctor and decided that we would try to make it until Monday, when we were suppose to be back in clinic. He did fairly well, meaning continued to have blood, but did not worsen.

Sunday was another big day for Creed. Cure was having their annual christmas party and Santa was going to be there. For me, this was such a special party. I don’t think of us as “one of those families” most of the time. Mostly because we’ve been in this for his whole life. It wasn’t until this time last year that we officially became “one of those families”. Cure is a wonderful organization that loves on us and walks along with us to give us support and resources we need as we’re on this path. Every year they have a christmas party for the families and this year we were lucky enough to get to go. It’s extra special for me, because Cup of Joy, a women’s ministry that I’m apart of and adore, partners with Cure to host this party. We get loved on twice!! Because Creed was having the bleeding issue and was slowing down a little, I was not sure until literally 15 minutes before we left if we were even going. I knew that if he didn’t get to go, he wouldn’t see Santa this year. Can’t take him to the Mall with all the germies out there. As time approached Creed said he wanted to go see Santa and in the car we went. I wish I could have taken you all in with me and could have shared the excitement and emotion as we walked in that door. One of my dearest friends, Addie was right there smiling big and yelled “CREED”!!!! I was immediately covered in chills and of course my eyes were leaking as I knew the excitement that they were all feeling as well. We walked through a line off people some we knew, some we didn’t, but all of them with big smiles and so much love for us. We had our own little elf who helped us make our way through the magical room, with more than you can imagine all around us. Creed went immediately to see Santa and told him all he wanted for christmas, got his picture taken and for me all well. I couldn’t imagine a christmas where he didn’t see Santa. Luckily I didn’t have to. From there we made our way to the gingerbread house station and he was table to make a gingerbread house of his own. His sweet elf Ashley put the icing on and he strategically placed his candy and decorations. From there we went to the christmas tile table. It was designed for Creed to make a handprint tile, but he wanted me to get messy, so I made a tile for him instead. That pretty much tired him out and we begin making our way back towards the door to go home. He snuggled up with his friend Emily and got several pictures taken while snoozing in her arms. I felt somewhat famous as we had someone around us pretty much the whole time taking pics. It’s so great to be loved!!! We said our goodbyes and Creed smiled as I asked him about Santa on the way home.



For the rest of the afternoon he snoozed on the sofa. Around 2 that morning, Creed woke me up saying he felt like he needed to throw up. As he started walking to the bathroom he fell and said “he couldn’t walk”, I picked him up thinking with his hemoglobin being so low he was probably lightheaded and helped him the rest of the way. I knew that we were headed to the ER so I ran and got dressed, when I turned around I found him lying on the floor where he had pooped and thrown up. Down to the ER we went, pretty fast I must say. Good thing about traveling in the middle of the night, you can run all the red lights because there are no cars around. Once in the ER we found out that his oxygen was 52 (you want it above 92) and his potassium was 8.8 (normal is 3.5-5.5). On top of that, his platelets where low. He was taken for a chest x-ray where we saw just what was causing all the breathing issues. The ER docs first thought was pneumonia, but after talking with the BMT docs we learned that his lungs hemorrhaged. Having blood in your lungs is not a good thing. Good to know!! We were moved to the PICU and placed on a BiPAP machine (this is a non-invasive ventilator). The doctor explained the treatment plan to me and informed me that if he didn’t respond to the BiPAP they would have to intabate (tube down his throat). And if he didn’t respond to the medications they were using to treat the high potassium they would have to place him on dialysis. Ok, it takes a lot to “get me” but she managed to do it that night. I’ve seen Creed go through sooooo much in his short life, that most things don’t worry me or frighten me. But when you throw two big things like dialysis and intabation at me…I break. All I could think about was when he was an infant and seeing him that way again, was horrible and I couldn’t face it again. But being the fighter that he is…he got his act together and all was avoided. Thank you God!!! So here we are, in room 4129 with our breathing machine, trying now to get his potassium to come UP!!!! Yes up, Creed loves to keep everyone on their toes. He likes to make them earn that pay check. He’s responded very well to all the treatments and has continued to improve everyday. Today, he was able to remove the mask (breathing machine) off for two hours to see how his lungs responded and did GREAT!!! They placed it back on for the night, because they don’t want him to over work and end up back in trouble again. The plan for tomorrow is to take the mask off again, earlier in the day and allow him to go the majority of the day without it. We’re hoping that we get to head back over to the BMT unit by the weekend. We don’t love the PICU so much, they are a little more intense over here and we like to laugh and be silly at times. Not a lot of that in this world. I will say this, the nurse we had on days Mon-Wed was INCREDIBLE!!! He, yes he, was by far one of the best nurses we have EVER had. And we’ve had our share of nurses!! Speaking of great nurses…Creed’s primary nurse, peanut butter and another one on his team, Amanda came by today for a very fun visit. They were actually running down the hall with warm blankets to see who could get to him first. They remembered there’s no running in the PICU, and walked as fast as they could to get to us. We both loved looking up and seeing their faces!!! Thanks girlies!!! Totally brightened our day. Speaking of visitors, you know where I’m going….CASPER came and the PICU doc allowed him to come in for a visit. Creed resumed his normal position and to sleep he went. As I’m writing this, another one of Creed’s fav’s walked in, Sam. She is Creed’s night nurse, and he absolutely loves her!!

If you read my “thankful for” post you can see a small glimpse of what I’m talking about in this post. We are always covered with love when we’re here and it just never stops. When we’re in the PICU, all the way on the other side of the hospital, Creed is visited by his BMT nurses. We’re here at Egleston and Creed is visited by CASPER who comes all the way from Scottish Rite to love on us. As Bryan, our nurse for the past 3 days left tonight, he came in to say goodbye and tell Creed how much fun he had being his nurse and getting to know us. Our BMT docs are always with us, even if we don’t know it. They continue to work and work and work as they figure this little miracle out. I continue to get text and emails, notes on facebook, videos sent to my phone all with encouraging words and prayers. You’ve all seen the prayer sent to me by our sweet friend Emily. It’s so easy to stay positive and happy as we continue on this journey, when you can see and feel God’s love every day from all of you. We are getting closer and closer to christmas and most people would probably be devastated if they had to spend christmas here, but honestly it won’t bother me one bit. These people are now a part of our family and that’s what christmas is about, sharing the love of a Savior to others. That’s why Jesus is here. No matter where we are, this home or our home in Roswell, we will be loved and enjoy christmas like always. I’ve learned more the last two years about what really matters and what doesn’t. I’ve learned so much through the Creed and admire him more and more every day. I still can’t believe God chose me to be his mom. If I never get another gift as long as I live that’s fine by me, God gave me more than I deserve and I am forever grateful to be known as “Creeds mom”.

More to come, and I’ll try not to have such a big gap this time!!

Love,
Creed’s mom

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Comments
  1. Aunt Rach says:

    Wow. Ok… Aunt Rach just can’t hold back the tears this go round. Creeder, you really are the toughest tyke I’ve ever met. I love you little buddy and wish I could have come seen you this week. You’re one amazing kid with a pretty inspiring mommy right beside you.

    LOVE YOU!

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