Wednesday, March 30, 2011

hospital update

Daylon is still in the hospital. Dr. Tolar has gotten involved in his care here at CHOC and they've run additional tests to check for infections in other areas to go along with the blood infection. So far, chest x ray= no pneumonia, echocardiogram= blood infection has not spread to his heart, no RSV, no MRSA, along with no other signs of half a dozen other problems. They drew blood from his arm again yesterday and that came back negative (so far) for bacteria so it looks like the blood infection may be clearing up, however, his Hickman is test positive faster than ever. His temp is up to 104.7 yesterday and after two fever reducers dropped to 102.5 an 1 1/2 hrs later. Meanwhile, I'm about to have a nervous breakdown from the stress of the infection and possibility of losing Daylon and the fear of being here and the continual harm that occurs to him. We got Tanya Kamka (a NICU nurse who took an interest in Daylon and Bella and is trying to raise EB awareness within the hospital) to come down and pass out the information she gathered on the disease. I think that the more people are reading over it, the more they understand that this disease isn't a "rash" as they've been calling it. Please pray for Daylon that he'll get better soon and we can go home. We miss the other kiddos too. His four siblings chaos always perks him up. :)

to answer someone's question from the last post: When the staff here has hurt him, do they apologize. Honestly, mostly they come up with reasons why they had to do what they did and don't apologize. However, there have been a few that do.

I wrote the above yesterday....

This is from last night...

Two nights ago a nurse tugged too hard on Daylon's line and pulled the cuff on his line from under his skin, through the skin. There was screaming by Daylon and yelling stern talking to by me. Well tonight, Daylon was sleeping and his IV alarm started beeping. His nurse came in to check it. I figured the syringe was empty and listening to Caleb talking away on the phone. When she started checking the line for air, I lifted his shirt to check for a kink in the line and saw that his Hickman had fallen out!!! Normally there would be some stitches to close the hole, but since his skin still can't hold a stitch, they passed on it. I held pressure for 20 minutes or so and then dressed it with sterile bandages. We'll see what the doctors say tomorrow.

TODAY...
Daylon woke up feeling better and for the first time since Saturday, played with toys. I even got to see tinsy crackes of his eyeball a couple times today. It was only for a half a second, but I was so happy! This morning, as Brian was gettting ready to leave the room for work, Daylon let out a playful yell and was smiling in his sleep. I was so excited to hear about that! TA-DUM! Improvement!

Talking to Daddy on the phone after breakfast

  More good news? Ok.
  Dr. Buchbinder is back (Hooray!!) and taking control of the whole lack of EB knowledge thing. He was really disappointed to hear what has gone on  (he was out of town) and is fixing it. He spoke with infectious disease and they decided to get Daylon on oral antibiotics and not risk another surgery putting a new line in. His wants to get Daylon out of the hospital ASAP and away from blood pressure cuffs, twice a day complete body scans (which are wrecking his foot), thermometers, well intended nurses, etc. As long as he can go 24 hours w/o a fever (last one was 3am last night) he can fly the coup tomorrow! Yay!!


When Daddy came by on his lunch break, Daylon was so happy he even did his little happy dance and gave a great big cuddly hug!
 He will be SO much happier at home! Heck, I'll be happier to be home! My neck and back are killing me from these stupid chair beds plus I miss my kids like crazy! I'm acting like a pregnant woman over here (no offense, pregnant moms =D ), crying everytime I talk to them...or pathetically...even when I hear stories about what they've done this week. I've got to get it together over here! LOL!
  You know that moment when you're with all your kids and your spouse you're just sitting around talking? I love that moment.

13 comments:

Mom to Many said...

Wow, what a full few days it has been.
I am so glad that you have some heavy hitters on your team. I am hopeful that more people can learn about this.
It is so sad that medical people can be so, well, dumb for lack of a better description. No offense to those who do such a great job each day.

Well gotta run, my son just vacuumed up the yo yo string and smoked the belt. I am sure you wish you were home dealing with things like that instead of having a sick baby.

<3 Cheryl

Jan's Blog said...

I get exhausted just reading what Daylon and you go through. I'm so tired dealing with a dying father and sick friends, and they are all in different states. You are awe inspiring. Sending prayers as always...
Jan (one of your devoted blog family)

Angelique said...

Yay for Dr. Tolar, Tanya and Dr. Buchbinder to the rescue!

Boo for ignorant medical staff calling his condition a "rash!" Really? Like you'd put your child through a BMT for a rash? Silly people...use your heads!

Praying you guys will get to go home soon.

jeanine said...

Ugh! I can't believe they don't even apologize! Hope his fever stays down so you can head home soon!

Tanya said...

Oh Jenn :( I'm sooo sorry you are having to go through this!! I wish I knew how to better educate everyone, it's not ok to do harm because of lack of understanding (again and again)! I hope you get out of there soon!! And I apologize for everyone who hasn't!! I wish I were better at educating the nurses and staff :( You're all in my prayers!

Tanya

Kristy said...

I pray you are in the middle of "that moment" VERY soon!!! You are such a beautiful mother and your love for your children is a blessing to witness! Praying your lil' fella is feeling all better and back home soon!

Edling's said...

Tanya,
You are absolutely amazing and we are SO grateful for all your help! Don't apologize for a second!
We love you!
Jennifer

Anonymous said...

Yes Lord, please get Daylon and parents home quickly. Get all the family together so that each member is happier and healthier. sg - KS

Gilda said...

I am very disappointed in the way the staff there is handling your situation. And am very grateful you have some doctors coming in the help Daylon's condition. I am not in the medical field but I think if I was I would take time to learn what you as a parent are letting me know. Sometimes I think people think they have alot of knowledge in the profession they are in and forget that being in this field requires alot of bedside manners.I realize it is their job but it takes compassion also to do it. And from what I am hearing here they are not showing you very much dedication to help Daylon condition even if they don't know too much about it. I am so sorry that Daylon is going through so much. I continue to pray for you and Daylon. Sending your sweet angel many gentle (((hugs))).

Anonymous said...

We were so happy to hear that Dr. Tolar is back on the case. Hopefully he will shape up the staff at CHOC in the care of Daylon. Glad to see he is doing alittle better. Sure hope his fever stays done and the the infection gets under control so you can go home real soon and be together as a family with the other kiddos. You are such a wonderful Mother and so loving, caring and so strong. Your kids are so blessed to have you and Brian as their parents and both of you are trruly blessed to have such precious children. You are truly a eternal family and blessed by Your Heavenly Father. He Loves You so much and so do we. The kids are so blessed to have such great grandparents to help in their care and for the love they have for them. What a true blessing. We are so sorry that Daylon is going thru so much. Daylon is a true child of Heavenly Father and is Loved so much. Daylon is really a strong determined boy and a real Superman. He has really overcome so many obstacles and is a real miracle. We miss the kiddos and love these precious children. Can't wait to see them. You aree in our thoughts and many prayers, and we continue to pray for Daylon to get better and come home.
Hang in there Superman, We Love You. Take Care and hang in there. Hopoe to see you real soon. Hope you can get some well needed rest.

All Our Love;

Myrna & Dwight CA

The Lewis Family said...

I'm glad you're doing a little better over there...I pray for you and your family all the time. I'm definately a fan of Daylon's, he is a super star in my book...all EB kids are!

Jamie said...

ugh I am sick and teary from these last two posts, what the heck is going on in our culture these days that people who sign up to help others medically hurt little babies b/c they are too proud, busy, etc to slow down and listen (and believe)! prayers for you and your family. (and the medical staff--that they might have compassion and SLOW DOWN and LISTEN).

Nicole said...

Praying that Dylan is recovering and doing better.