Wednesday, August 25, 2010

Day +61

Today's post is short and sweet. It's 1 am and he's finally relaxed enough (thank you Homedics lullaby projector) that I can step away for a second...if that gives you any idea of the type of day we've had.
  Dialysis ran today, and the nephrologist actually wanted to lower his dry weight because he felt he was still fluid up. He thought his stomach looked distended. He's a baby; that's normal. He says the high pulse and sunken soft spot aren't dialysis related. Agh. This is so frustrating. I feel like everyone is taking this personally. I want everyone to work together and figure this mess out. After about 20 minutes of pleading my case, the doctor finally agreed to just clean his blood today and not take any extra fluid off.
  Dr. Tolar thinks there is a possibility of a line infection that is being pushed into his blood during dialysis. There are seriously about 6 or so possible oddball things the doctors are all looking at. The hope is that the infection/allergy/condition will suddenly clear up on it's own (what? It happens :) Seriously though, it does happen around here). I keep hearing things like, "I haven't seen anything like this in 30 years"...boy that's a popular phrase to use when taking care of Daylon :) Ok, so the possibilities range from things that can be taken care of quickly like a change in meds, to something a bit more difficult like an infection (it would have to be a serious one to not have died with all the antibiotics he's on), to something possibly life threatening like his immune system is over zealously trying to kill off some foreign body (not GVHD). Either way, they need to figure it out asap or it needs to up and go away.
 Daylon still got a fever tonight, but only 102.7F. He's moaned (this is new) and shivered all evening and well, since about 3 pm (dialysis ended at 1:30).
 Before he got too sick I did get to play with him a little. He really liked all the lights and sounds on his dinosaur shape stacker that we bought him for his birthday. He didn't really make any expressions, but he was grunting and started to move around when I told him, "lets dance to the pretty music!" Everyday I see a little bit more of my Daylon starting to return.
  As always, we are very grateful that you take time out of your busy lives to check on Daylon and to pray for him. Thanks for all the dialysis comments! I love having ideas when I confront the docs in the morning!  Sleep well.
PS- no dressing change tonight, since he was inconsolable pain. Hopefully, I'll have pictures tomorrow.


Mom to Many said...

Do you think Daylon ever feels like a wrung out dish cloth after dialysis? Poor guy.
I am seeing the sun rise here, but I think the glare is a bit blinding at times.

I am so glad to hear he was dancing with you. What a cutey! I'll bet you are just elated when he plays back. You have faced long hard days of your baby being so quiet.

I hope you are getting some sleep, you sure need it.
My little guy is asleep now, so I am off to bed.
(He broke his other arm last night when he tripped on some uneven cement. It's a Smith Fracture. I had no idea kids could break so easily.)
Take care of you,

sharon kaye said...

I know the doctors are doing their best. I hope they find the answers soon. I pray for them as well as Daylon. They (the docs) need wisdom beyond their own. Hopefully they can "look outside the box" and find the answers and be humble to receive inspiration.

Linda said...

Hi Jenn: I just wanted to let you know that I am still praying for your precious son. The EB community is so grateful for you pioneer families to go through this procedure so we can kick some serious EB butt and get it the he** out of here. Take care and keep the Faith. God Bless You. Love Leah's Nana


I am really hoping things can get figured out SOON! I am glad you got to see a happy side to him and got to play before he was in so much pain. I love seeing pictures/video of him smiling and happy! Today is a new with that please some some new answers :) sending prayers your way as always :)
Thanks for stopping by at my blog, your so sweet :)

Angelique said...

OMG - These kids are giving a master class to these docs! This hospital is filled with experts in their respective fields and even they are stumped! We continue to pray for wisdom, which translates to a course of action to a speedy recovery for our kiddos.

You mentioned you guys might be here until December. I heard someone refer to it as "The Winder of Miracles!" I like that idea.

Carrie said...

Just curious if they have tested the actual dialysis machine. For instance could the water in the dialysis machine have a bacteria in it?
Praying for your little boy.

Anonymous said...

No good ideas as to what to try next, but I'm praying for you and Daylon.

Anonymous said...

Hoping things will work out real soon for Baby Daylon. We are praying for him and we love him and all of you. He is such a strong baby and such a fighter. What a blessing. You are all in our thoughts and prayers. Hang in there. God is watching over all of you. Miracles Happen. Sending prayers and love your way.

Myrna & Dwight CA

Anonymous said...

praying for your precious boy, love in Christ, Mary Chinn, Indiana

Katherine @ Grass Stains said...

Still praying in Birmingham for sweet Daylon. Love to all.

Gilda said...

So glad your able to see your Daylon back. He is such a sweety,thinking and praying hard for you and him.

Susan H, Alabama said...

I just wanted you to know that even though I don't know you, I feel like I've known you forever. You have changed my life (for the better) with the way I am with my children. I prayed for the Lord to help me have more patience with my kids, then I found your blog, Bella's, Jonah,s and Tripp's. I was so very humbled and amazed at the strength, dedication, patience, love, faith, courage, and I could keep going of your family and the other families. I pray for these kids every single time I pray for my own. I think of Daylon every time I look at my 11 month old son. You are an amazing mother and I just wanted to let you know that I admire your diligence and strength!! I will always be praying for your sweet baby Daylon and your family!!! May God Bless You and continue to heal him. In Jesus Name!!!! I am so happy he's showing up the doctors and doing better!!!!

crsleigh said...

My prayers are with you everyday. Daylon is doing so well! Hopefully they are able to figure out what is causing the issue soon! Have they consulted with an infectious disease specialist? That was who finally diagnosed my husband's port as being the culprit. It had a bio-film of bacteria within the actual port. As always- God Bless!