Saturday, May 29, 2010

Whirlwind

The past several days have been a roller coaster of types. At Daylon's eye doctor appointment we learned that he has a astigmatism and is far sighted. They are going to hold off on glasses for a bit though. The nasal swab from last Friday came back positive for para influenza. The Infectious disease doctor said he looked fine and requested a second swab...which also turned out positive. So, the chemo was pushed back a week more.
Daylon has started cutting his one year old molars. Teething and EB is a bad combo. On Wed. Daylon just wasn't his happy self and by Thurs. a low grade temp kicked in and he was super fussy. On Thursday afternoon, Daylon was crying and suddenly his cry turned into a high pitched scream sort of cry. Blood started to drain out of his mouth. For Daylon, when teeth come so do the blisters on his gums at the sight. I suppose the veins must be really close to the gums because the blisters are blood filled. This has happened before and is a normal sign of his teething symptoms, but it makes me feel helpless and completely overwhelmed...if even for a moment. I can't describe the feeling of seeing your sweet baby suffer so much and know that you can't make it better.
After his evening nap, his 99 degree temp was 102, so I gave him tylenol and off to the ER we went. I had hoped it was just the para influenza he had tested positive for. While we waited for the blood work to come back, Daylon started to have a seizure. It seemed to last for an eternity but it was only about 10 minutes. The Doctor and Nurse were there to evaluate him the whole time, so that was nice. When they took his temp it was 104, so the spike probably did it. After he rallied, we were sent home. The next morning we got a call finding out that he had a blood infection in both of his central lines. He was admitted by noon on Friday. We have since found that the bacteria more than likely came from his stomach, Kaleb-something or other. My guess is that the stomach content from the drippy G-tube is the culprit. The central line dangles on the G-tube. Today, the Attending came in and said that he also has a yeast infection and staff infection in his blood. The rash on his body is also yeast related. The antibiotics he's on should heal him. This morning his hemoglobin levels came back at 7, so he also got a blood transfusion. They said EB kinds tend to be on the lower side and since he's sick, he's not replacing the blood they've been taking fast enough. It should be fine in a few days. Thank goodness for modern technology!
We've also been really blessed this week. Yesterday we got a bigger room at the Ronald McDonald house! WOo-hoo! Also, the FDA is allowing Dr. Wagner to separate the EB kids into two groups: Junctional and RDEB. He can now do one transplant of each type a month instead of one EB kid a month. Daylon's delay will not affect Bella (the June EB kid) or the rest of the kids on the schedule since they're RDEB! We were really feeling guilty about it, so that's a sigh of relief!
That's the update from Minnesota! Hope things are great where you are!

9 comments:

Jan's Blog said...

I have difficulty knowing what to say, so generally I say nothing. I just want you to know that there must be many people like me... we don't say much but you have our prayers. You are in our thoughts daily and we restrain tears, if we can, when we read about your struggles and your joys. God Bless you ALL~

Zack Troop said...

We just started following your transplant adventure! My son Zack is 7 and has rdeb. I love your quote from Sister Hinckley, it is one of my favorites.

Nancy said...

Thanks for keeping us updated. You're amazing! Hang in there. Oh, and ditto what Jan said.

Tanya said...

I just want to give you a huge hug, I'm so sorry Daylon is having a rough time :( You and Daylon are so strong!! Please please please let me know if you have any question about medical stuff (or anything else)!! I think of you guys everyday!! Lots of prayers and hugs from Orange County :)

Tanya

Linda said...

Hi Jen: So sorry tht things are a little rocky right now. Hopefully everything will settle down and Daylon can get started kicking some EB butt. Praying that all goes well. Will be checking all the time to see how your son is doing. My granddaughter had JEB so I am very interested in his story. God Bless You. Love Leah's Nana

Kristyn said...

We love you guys so much. Jennifer you are doing a great job in updating us as you struggle through all this ....Hang in there Jenn . Daylon is our miracle baby ... he is going to make it . Bless you guys.

Jenny T said...

I really hope things will calm down soon so you can get started with the transplant. I think a lot about you guys... Take care, best regards Jenny in Gothenburg, Sweden, mother to Natalie with RDEB ( www.ebifamiljen.se )

Juliet Coy, California, USA said...

Wow, you guys are dealing with so much. I thank GOD that he is there with you all, helping and comforting you every step of the way. Your family is in my prayers and such an example of love, pure love.

Mom to Many said...

Best wishes to you and your family. :o)
You'll be in my prayers.