Jones Family

Jones Family
November 2009

Sunday, April 26, 2009

Sunshine & Fresh Air

What an awesome Sunday! First, we had a tough night. The chest tube removal got put off a few times. It was so sad to hear they were bombarded with a lot of new kids last night. At midnight they came in and we were terrified at how painful it would be. They said they wanted him to scream as they pulled out the tube so his lungs would expand. They got ready to pull and Brayden literally did not make a sound. Bryan and I were so relieved. The Dr. kept saying how strong and brave he is! We waived bye to the nasty tube and the 2 liters of fluid they had taken out of him since Monday and breathed a prayer of thanks. He had 2 chest x-rays that followed to confirm no air pockets in his lungs from the tube. At 2:00, we finally drifted off. Out of precaution, they kept the monitors on him last night and again, wow. Without the chest tube and oxygen, and only Brayden (and many miracles from God), he was breathing and oxygenating at 100% with a normal heart rate. Yeah!

I forgot to mention yesterday was his first day eating 3 meals!! Today he had another good breakfast. The Dr. came in this morning and told us (after a concern about his fluid intake/out-put) that his white blood cell count was lowering still (in the right direction). Everything still looks good. He's now lost 8 lbs since Monday night, but they're glad he's eating. We were reminded he will need his first blood transfusion this upcoming week sometime. She said his lungs sound a whole lot better. Since he's taking in so much fluid orally (my little water drinker)they're going to lower his iv fluid. He's pumped about that since the hourly 'commercial break' he'd call it would send all the visitors to the hallway. The best news? He can get up and around a LITTLE with a mask.

So, we were eager to sit in the chair. He said it felt so good! Later, after breakfast, we got ready for a trip to the garden just a few steps past his room. He was VERY independent in doing everything himself and pushing me to 'go faster!' and 'speed it up!' We were thrilled to share those amazing moments with Zach & Steph, Danny & Kathleen, my sweet friend Carrie, and Nini later. He loved the garden and the warm sun and was eager to 'walk across that bridge.' We peeked inside the other windows at the playroom where he can go as he continues to improve. He then pulled his on IV stand and took a little seat on the bench and just felt the warm breeze and the sunshine and the beautiful gift of a day we were given. After a few minutes and running through some energy, we came back inside and waited for a show from Steph & Zach. Brayden and I used our little joke of "there's an app for that" when they came in with their I-phones and had Star Wars music, light sabers and action noise coming from them while they fought! Brayden couldn't miss out on that action and was quickly dueling with Aunt Steph while a nervous mom watched the iv's and couldn't belive how far we've come in a few short days.

We were glad to have visits from Danny & Kathleen (thanks for the breakfast socialization time)and Brayden loved seeing us on the web cam! Thanks Steph & Zach for being here and bringing more sweet nectar (Starbucks) for mom & dad to keep up with the day. Thanks Nini for all your support. We had a nice game of Bingo today! I was so stunned to see my sweet friend Carrie here. Your hugs made my day and nearly pushed me past the brink of holding on. I'm so glad you got to see Brayden on his best day! Bray loved you teasing him about how good he looked. I loved seeing my friend, Machelle. I can't believe all the stuff you came with from everyone. Thank you, Bill for all the Mega Blocks goodies! Thank you, Kathy for the awesome magazines, gift card. Thank you Anita for the AMAZING comfy throw. I can't wait to use it. And the dirty clothes bag is something I am clueless on how you knew we needed. The Flat Stanley book and card and your family made me cry. Brayden loves it and it was so incredibly sweet and thoughtful!! Jean & Dave - thank you for your prayers and the card and hats. Bray loved them and we'll make time to watch Rain. Moira, Denise & Machelle - you guys hooked us up between Brayden's goodie bag and ours, we literally want for nothing. You guys thought of it all.

We'll close for now. Our families and friends have left and we're settling in for a nap (I hope!) and maybe we'll venture out for another quick walk later.

Quote of the day: last night, another Angel One flight coming in. His Dr. told him he couldn't do the chest tube because there was another sick boy coming in from Searcy. When he left and we heard the helicopter a few short minutes later outside our window, Brayden said, "Mom, I hopehe gets better like me and they can help him." Even in the middle of the night when they came back to finish, Brayden's first question to him was how that little boy from Searcy was doing. We are so blessed with a boy who has such a caring heart and love for others.

Praying for the ecko to produce good results tomorrow and no fluid on heart and no damage from the Death Star (Thymus tumor - our Star Wars word for it, in case I didn't clear that up before). They will also look at the liver and kidneys at the same time and we're praying they're still not enlarged and are healthy. Praying for the chest x-ray early this morning to show good results. Praying for the DNA test. I don't think I've said before but there is another big test they sent off that we won't know the results of for 3 weeks. It was sent to a specialist in Nebraska and we're praying it's negative. More on that later. Praying for WBC count to continue to lower and a safe blood transfusion later in the week. The heavy duty chemo is on Wednesday again. His daily regimen we are giving thanks that he can now take it in a pill form. The liquid was like acid going down his throat, so this was so much less traumatic this morning and will be going forward since he has to take it twice a day.

Thanks again to everyone!!! We appreciate all the support!


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  2. OH WOW!!! I am so happy that you guys had a wonderful day!!! That is so cool. You guys are such good parents to Brayden. He is lucky to have both of you. I will make shure at dinner tonight that Dad and I pray for all these things. We love you guys and hope that you have a good day tomorrow. I don't have your e-mail address anymore. Do you mind if I have it?
    You Cousin and Uncle,
    Jerald and Jean

  3. Hi,Brayden I am glad you got to go home on Wednesday.Get ALOT of SLEEP Brayden.I hope you get well soon.
    To Brayden Jones
    From Kaitlyn M. Terry