Hayden continues to be sick from mouth sores in his throat (mucuscitus) to fevers from what could be bacteria that is in his bloodstream. He is taking antibiotics for the bacteria in the bloodstream and continues to be on the continuous drip Morphine. The staff started Hayden on a red blood cell transfusion earlier today, but stopped mid way through when his temperature went up real fast. We now are restarting what blood cells he had left but from a fresh blood pack.

I am noticing blotching on his skin, but doctors think it could be from his temperature changing so fast from high to low. He now sits at a good 100′. Yesterday and early today we saw temps of 106, and 104, so we are relieved to see it go down. Thank goodness for Tylenol!

Hayden hasn’t done any playing the last two days, he still continues to eat a couple of ounces here and there, but he is starting on TNA (liquid food through IV) right after the blood. We don’t want his calories to be insufficient.
We are running out of space to put all the gravity bags on his pole. I suggested we hang them on the crib rails. I will post a picture of his set up soon!

I got to spend the last night with Abby and today we brought subs to the park, hit a few rummage sales in Sun Prairie and walked down State Street before heading to the hospital. Too hot for State Street with all those people out! We had fun!
kb

As Rick stated below Hayden is still not feeling well. We have decided to increase his Morphine to continuous drip at .2ml an hour. We are monitoring his bottom now as well. It is red and we don’t want infection or bleeding to start. He did receive platelets this morning and doctors will keep him at a higher level to prevent bleeding from his mouth sores.

Rick is on for Friday night duty, so I can spend time with Abby!

As expected, Hayden has developed some sores (mucasitus) in his throat.  The pain makes him not want to swallow so he constantly drools, he still has a cough which also makes him cry.  His eating has slowed but no feeding tube yet, the doctors said most likely he will go on them soon.  Another effect is his skin has become more sensitive and he cringes when you touch him at times.  Morphine is given for the pain.

He developed a fever today (106 degrees) so he has been started on a long list of antibiotics.  We have stripped him down to his diaper and cool him with a wet towel.  He is overall uncomfortable and wants to be held nearly all the time.  Yesterday he did have bursts of energy where he jumped in his walker like a mad man, sometimes he closed his eyes and near fell asleep while jumping.  This is probably from the larger doses of steroids he is receiving.

He has lost some weight but not enough to be concerned.  His stomach is holding at the same size.   We started watching this four days ago, a larger stomach could mean a malfunctioning liver.

His platelets are below 20k so he will receive a routine transfusion today.  Red blood cells and hemoglobin are lower but not enough to merit a transfusion.

rb

Many have asked for Hayden’s address. Well here it is!

 UW Children’s Hospital
1675 Highland Avenue
Pediatrics, Rm 4133
Madison, WI 53792

We have been so busy playing with Hayden that we haven’t been able to update his blog. He goes from having a crazy amount of energy to becoming tired out, other times he just wants to be held.

He has finished receiving all chemotherapy drugs.  The harsh effects will hit him later this week and next week.  From here until he leaves the hospital he will receive a constant dosage of different steroids, these are to prevent Graph vs. Host disease and to keep his body from attacking the new stem cells.   One added benefit of these are it has cleared up his skin and helped his breathing. 

He has continued to eat well only on his anti-nausea medication. We tried taking him off of it and he threw up, so maybe a few more days will help him out.  The longer we can keep him eating and off the feeding tubes the better.  I picked up some more prune juice since he is still struggling to have a bowel movement each day.   

The doctors expect him to be neutropenic (no immune system) for 21-28 days, then we should see a very gradual increase, this means the new marrow will be growing and producing cells. 

His cough still lingers but his chest X-rays still look the same each time which is good.  To help his breathing he receives a nebulizer treatment three times a day.  Also his stomach must be measured each day because it appeared to be larger, this could mean his liver is not funtioning properly.  His belly button seemed to be sticking out abnormally and so he probably has a hernia which will need to be fixed.

Today Hayden slept in till 7am, he even slept well last night, waking up only for vitals from a loud nurse. He has been a non stop peeing machine from all the fluids that have been put into him. He woke up in a cheery mood and had some breakfast. Doctors still haven’t taken off the dairy and soy allergy on his med. records so we haven’t been able to order people food from down in the cafeteria for Hayden. He loves yogurt, scrambled eggs and ice cream!

He sleeps alot, taking only small naps but hasn’t gotten sick and is keeping food down. He is getting pretty spoiled with being held while he naps from us, but that is when he sleeps the best. His platelets are at 28K today so by tomorrow he will have a platelet transfusion.

Doctors are happy with his progress and his numbers. So far no fever which usually happens a couple days into the infusion.

kb

A few of you can’t remember your password for commenting, please email me (kami) and I can send you a reminder of your user id. This is set so we don’t get spammers.
Sorry for the inconvenience!

Another good day for Hayden.  His only problem area is the cough which the doctors feel may be an effect of the ATG.  At a minimum they think it causes his weezing, he had the cough prior to admission so they are not sure if the ATG just makes it worse.

White cell ct  .9

Red cell ct     3.8

Homoglobin  10.9

ANC     890 (big drop)

Platelets 12k (thus a transfusion today)

Tomorrow the stem cells will be transplanted at 1:00pm.  It will be done via IV using a gravity drip bag, it should take 15-20 minutes.  Hopefully he does not have any immediate negative reation to them.  After this the plan is wait and monitor.  The stem cells must find the markers in his emptied bones and start growing, producing white and red blood cells and platelets (and other things I’m sure).  Each day he will have his counts checked, ideally they will go up a little each day and at a safe level he will be allowed to go home.

The doctors feel his next two weeks will be his sickest and most uncomfortabe, but one day at a time.

We very much wish we could thank the person who decided to donate the umbilical cord that contains the stem cells.  We are not given any information on the donor so we don’t know who it is.  We hope they understand the tremendously wonderful gift they made and just how much it is appreciated.  We hope if they are ever in need someone is there for them.

rb

Hayden is having a GREAT day today. His mouth pain is down enough that he is eating and drinking his bottle. He has eaten some puffs and cheerios too which helps work on his pincer finger developement.

He used to be good with taking his medicine orally, but is now fighting us on that even though they are flavored. We seem to get them down with the help of his nuk. I am waiting for some prunes to feed him today to get the bowel working. With his levels so low, any small problem is a big problem like no poopies.

kb

White cell ct    3.7

red cell ct         3.0 received red cell transfusion, his first ever

hemoglobin     7.8

Neutrophl      3600 (strange, this should be going down)

Platelets         31k (60k drop in one day)

He ate a huge helping of mashed potatoes and gravy this evening, then I saw his face turning red and he started grunting, he then laughed so the pooping issue is over.  I again encouraged him to do this when mommy is here.

Tomorrow we will cut his hair because it will fall out soon. 

rb

This past Sunday Hayden met someone famous. Cindy Crawford came to UW Children’s Hospital to see patients at the Children’s Hospital. This is something she does every five years to support the education room that she donated years ago in memory of her brother who died of Leukemia. Jeff Crawford went through his chemo at UW Children’s Hospital so this place must be very special to the Crawford family.

Cindy visited each room in the pediatric unit (there was only 4 families) and gave each child a Mushabelly stuffed animal. Abby got a piggy, it is pink and Hayden is a frog. If you squeeze their arms they make the noise of that animal.

Cindy stayed for about 10 minutes until Hayden started getting spooked by the camera, and strange people that were looking at him. It wasn’t Hayden’s best hair day, and she commented on his “alfalfa hair” sticking up on his head. She was very nice and down to earth.

Check out the “Hayden meets Cindy” photos…