Welcome God Brother

Finally!!! After two days of sitting in the Hospital room, Stef had the baby with some help from the Surgeon.... He is a beautiful 7lb 9oz bouncing baby boy. Eden is truly in love with him already.. She was the first to get to hold him other then Daddy. Stef and Eden have a very special relationship and Stef wanted Eden to be a special part of the baby so she asked Eden to be his God sister. Eden plans to take her responsibility very serious....

Father's Day

Today Eden and I got a quick ride in on her bike and Riley and I played around the house. I just wanted to say how much I appreciate them and Thankful for another Father's Day together.

Eden had a pretty good weekend swimming and playing. Riley and Eden had a bake sale at her garage sales Friday and Saturday. They had a great time.

Counts are up!

It looks like Eden has started to Engraft.

Counts as of this morning.

HBC: 6.8 (she is getting blood but it seems to be holding better then in the last month)

Platelets: 39

WBC: 2.9

She did get blood and platelets on Tuesday but, this is the longest she has gone now without more platelets.....

Tuesdays Counts:
Platelets: 12
HGB: 6.6
WBC: 1.8

Home At Last!

Eden did in fact make it out of the hospital Sunday afternoon. She no more made it home and had me chasing her around the block on her bike.. She is truly feeling good. One of Eden's great aunts is in the hospital in Huntington WV so Eden, CeCe and I took Grandma JoAnn to see her today ............there and back in 8 hours... shewwww I have no idea how we made it that fast considering it seemed we were stopping every hour to feed this child.

Because Eden's counts are not great we only stayed at the hospital for 10 minutes with Eden all masked up. So the rest of the Time Mamu visited with her sister, we went exploring. We did some shopping, Eden picked out a few new outfits and shoes to go with them and of course had to stop and feed her again and on our way back to the hospital we got just a little lost. Well CeCe just bought a new car with onstar in it and Eden was so very excited that we got to call them for directions back to the hospital. She is the funniest kid ever! She was a great sport about all of the traveling and we had a fun day!

Sorry for no new pictures today.. Having a small issue with my Camera but will get it fixed soon.

Don't forget this weekend is the last push for the Eden Benefit Yard Sale. Friday 9-3 and Sat 9-3 2590 Yates Ave Grove City. We hope to see you there!

Sunday Counts

Eden is still in patient.

Saturday Vitals:

• Platelet Count: 36
• HGB: 8.5
• WBC: 1.4


Sunday Vitals:

• Platelet Count: 25
• HGB: 7.4
• WBC: 1.1

Eden has received Ceftazadine and Linezolid all weekend and Getting Red Blood and Platelets again.

Pictured with Eden is Fellow Dr.Beng Fuh he has been with us since the begining. He will be leaving Children's at the end of the month to head to the Carolina's. We wish him well and many Thank you's.

Friday Evening Inpatient

Eden did receive red blood; however, her line leaked. Her bed sheets and clothes were soaked in blood. They got her cleaned up and ready for the rest of her evening. An antibiotic push was administered and another IV started with ZYVOX® (linezolid). Eden is currently eating, coloring and watching TV. I just spoke with Dr. Beng Fuh and he is working on getting one of Eden’s important prescriptions taken care of. Potassium Iodide, (SSKI®) is a medicine that protects her thyroid gland.

Her current vitals are:
• Platelet Count: 64
• HGB: 7.8
• Temp: 99.4

One of the things that have been affecting Eden is her VRE classification in terms of her playtime at the hospital. Someone ask me what VRE was so I am putting this quick summary up.

What is VRE: Vancomycin-Resistant Enterococcus?

Enterococcus is bacteria that live in the digestive and genital tracts. They are normally benign and do not cause any problems in healthy people.
Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics.
Vancomycin-Resistant Enterococcus is a mutant strain of Enterococcus.

Eden’s nurses and Drs handle her a bit different. The nurses and Drs put gowns and glove on prior to handling or working with her. She is normally isolated and not allowed to run the floor visiting and partying. Consumables that come into contact with Eden are used for Eden only: Like her blood pressure cuff and stethoscope. These types of items that are exposed to her are disposed of after usage along with many other items.

Clinic and Inpatient

Eden started her morning today with chest pains and a fever of 102.8

Vitals today:

• Weight: 18.7 kg
• Height: 123.5
• Pulse: 114
• B.P.: 95/60
• Platelet Count: 24
• RBC: 1.86
• HGB: 5.8
• WBC: 1.4

After arriving to clinic this morning Dr. Yeager assessed her and decided to keep her for awhile, he immediately started and IV with ZYVOX® (linezolid) to fight off any microorganisms, Since Eden was complaining of chest pain we ran by X-Ray on the way to J5, she's in room 5304. Eden has had benadryl is now receiving platelets. She will get red blood as well in about an hour. That’s all I know for now. I’ll update later with more information.

Stem Cell Recuse

Eden started her morning yesterday a bit pale and warm prior to her getting her stem cells back.
Basic vitals prior to the stem cell transplant were:
• Weight: 18.9 kg
• Height: 123.5
• Temp: 98.8
• Pulse: 112
• B.P.: 105/64
• Platelet Count: 25
• RBC: 1.2
• HGB: 5.6
• WBC: 11.2
Infused was 2.65 X 10 to the 6 per kg divided into two bags. Robin her transplant Nurse Practitioner infused them manually trying to control Eden being sick or in any discomfort. It helped with the discomfort and pain but not with the sickness. She got sick a couple of times, during the first and second bag. Because her HGB and Platelets were so low we also infused red blood and platelets. It was a long day at the hospital. However, near the end of all the transfusions Eden perked up a bit and that’s when I snapped this picture of her. As for the rest of the evening, Eden did not sleep that well and this morning after getting up for school had to take a quick nap before going. She made it to school in pure Eden style, let the party begin. After school, she had a hearing test to make sure her hearing aids are keeping up with her needs. She has stabilized on her hearing lose for the present time. In addition, she visited the chiropractor Dr. Cole to help with the pain and discomfort she has been having over the last several months. She states that after being with Dr. Cole that she feels better. Therefore, if it helps we will do the best to make her as comfortable as possible.

Stem Cell Rescue Tomorrow

As you can probably gather from the last Update... Eden's counts were right down scary on Friday leading into the weekend. Therefore, she received packed Red Cells and platelets.

After we saw her counts, it was agreed upon by everyone that we should do the Stem Cell Rescue ASAP. She will start hydration at 9 am and then get the stems cells going by 11 am in the morning. There is nothing dramatic about it at all. It looks just like she is getting platelets only it smells like cream corn gone bad. Last time she received them she did spike a little fever for 20 which won her a night in the hospital and if it helps her that is more then acceptable.

Our hope is she will be able to make it back to school on Wed for her last day however, I feel for her fellow students as she will have a bit of a funk to her for a few days.... lol

I have decided to move the Yard Sale to the third weekend of June due to inclement weather.

We will update once Eden is done with her boost tomorrow.

Weekend Update

Eden made it through the weekend, She's looking good except for the platelet issue, major bruising. Eden missed a lot of important social engagements over the weekend due to her condition. We apologize to everyone but it was important to keep Eden down a notch. When Eden had downtime, She was with her mom coloring, reading, and resting in the pool. Monday Eden will be off to school and we have Stem Cells scheduled for Tuesday morning. Dr Yeager and Dr Mosse have conversed and decided that it was important to get Eden's Stem Cells back as soon as possible. We would have infused on Monday but couldn't guarantee delivery.