Hayden started on his new chemo drugs ATG (made from rabbits) and fludaribine. He is handling both of them well except he no longer enjoys taking his oral medications. We were told that these drugs would affect him by making food taste different, often times enough so he will not want to eat. Although his eating has slowed he still consumes enough to keep him off feeding tubes.

Overall he is handling all these drugs very well. He has a cough that persists so today he was given a viral check and chest x-rays. We should get the results soon on the viral check, the chest x-rays looked okay. Because of the viral concern everyone who enters the room, such as doctors and nurses must wear masks and gowns.

His counts are lowering:

White cell ct 3.1

Red cell ct 3.6

Hemoglobin 9.7

Neutrophl 1460

The red cell ct and hemoglobin counts must be maintained with transfusions while the white cell and neutrophl will drop to zero.

Transplant day is still scheduled for Friday so say a prayer for this little boy.

rb

Today was an EARLY morning but a good playful one. He was awoken by vitals at 5am this morning.  He was very talkative and awake when the nurse got done so we stayed up-yah~  He ate good again today, he didn’t like the blueberry apple babyfood so we tried just applesauce again and a bottle, that worked. It seems when the food has to be chewed and broken down is when the pain in the mouth happens. Late yesterday they finally gave him Tylenol for the teething pain, which they don’t like to do because it can mask a fever.  He was soo uncomfortable that even the nurses were trying to comfort him. The swelling in his mouth seems to have gone down today (from teething too) so hopefully we have a better day.

Last night Grandma Sue came to visit Hayden. She stayed with him while I walked over to the Ronald McDonald house to eat with the Mennenga group who was making the meal for that night. Rick and Abby joined us too.   Even though we aren’t staying there yet (next week) they invited us in and we got to see a lot of the house, that includes the toy room and playfort right outside the dining room. Abby thought that was neat!

This morning I took a walk to get a bagel down in the cafeteria-this place is barren with the holiday. I forgot that Marci’s daycare would be closed today too.   Rick and I will split watching Abby and so we won’t be together with Hayden today. So far Abby has enjoyed the one on one time with Rick and I.

Child life at UW has lent us video phones to help Hayden and Abby keep connected, we plug one in Hayden’s room and one in at home so the kids can talk and see each other. Pretty cool!

He is still sleeping at 9am so I am going to rest myself.

check out the new photos we posted too~

kb

Thanks to everyone at my work for the dinner at the Ronald McDonald House yesterday!  I appreciate everyone’s thoughts and prayers for Hayden.  Also, so I can be with my son when he needs me most, thanks to my co-workers who are assisting my clients, and to Marshall & Betty for the tremendous flexability of my schedule.

rb

Hayden struggled today with eating.  We think it is his teething that is causing him mouth pain because it is too early for the Busulfan to cause the mouth sores.  The only solid food he had today was a few spoonfuls of bananas, then he would wince in discomfort.  He did finally start drinking his milk in the afternoon.

His platelet count was at 12k this morning and must have dropped before his transfusion at 3 because his ears bled the whole day.  We filled them with cotton balls and changed them out when they saturated.  His lips also bled so by the time he had his bath he looked like a pro hockey player (he has one and a half teeth).

He is a very strong little boy who has cat like reflexes when it comes to grabbing his tubes and yanking on them.  From here on out they will be connected and running until the day he leaves the hospital.  This will be an ongoing challenge to keep his little hands off them.  We have to put a mask on him during and for 30 minutes after the room is cleaned, other than the first few minutes he fought the entire time, successfully ripping the mask off twice.  He will need to be sleeping when the room is cleaned next time.

Here is a list of his current medications:

Busulfan - chemo drug

Lorazepam-prevents seizures and nauea

Zofran-prevents nausea

Glutamine-prevents mouth sores

Amoxacillan-cures para anal strep

Acyclovir-anti fungal

Fluconasol-anti fungal

Heparin-blood thinner & prevents venal oclusive disease

IVIG (intravenous immunoglobulin)-antibodies extracted from plasma to help his immune system

Platelet transfusions

TP Sulfa-antibiotic

Ursodol-protects his kidneys from damage

There probably is more but this is what we know of.

rb

Abby now has email! She will enjoy reading messages from you all. Alright, I guess she can’t quite read yet so Kami & I will read them to her and type her responses.

If you want the address let us know by making a comment (it will not be posted) and we will email it to you.  This is due to the spammers.  If you don’t have them already you can also get the email address’s for Kami and I this way.

rb

We are pretty much settled in at UW Children’s hospital. We are in isolation in the BMT unit of pediatrics. So far it has been non stop nurses and doctors coming in to introduce themselves if we haven’t met or getting updates from the last time we have seen them. Between getting vitals, blood draws, Physical Therapy (PT), and Occupational Therapy (OT) we will have a full schedule each day. Rick is taking night duty at home with Abby tonight.  We have decided to rotate each night or every other until next week when we have a room at the Ronald McDonald house right down the road.

Hayden was in a good mood all day despite a short nap this morning and a late afternoon nap at 4pm. He woke up very crabby, drank 10 oz of formula, still wasn’t happy, tried some ice cream to sooth his mouth from the teething, didn’t work, finally I made up another 4 oz of formula which he drank most of it and then fell back asleep. The nurse couldn’t believe the food this kid eats! We will see if he sleeps through the night or if this is just a nap!

Abby was very sad this morning knowing Hayden was going away. She was crying and telling us that she didn’t want him to go. We told her we would take her pictures she colored to him and hang them up for Hayden and reminded her of the fun things she has coming up with Auntie Kiki, the Grandparents, and even visiting the Ronny house next week. Rick is home with her tonight and has a few special things planned to do with her this week.

Tomorrow morning at 6am starts the first dose of Busulfan, every 6 hours for about 6 days. Then after the 6 days he starts on Flubarabene (too tired to look up spelling right now).

Our first visitor was Pastor Tweit from our church, Holy Cross in Madison. Hopefully tomorrow I will catch up on responding to emails and writing more!

Good night!