Tuesday’s check up and IVIG went very well. We got good news that Hayden’s T-Cell count is at 40%. This means that his immune system is up to 40% strength and is producing new cells from the core. Dr. Seroogy (immunologist) says the new system is that of the new stem cells. The new stem cells are doing their job!!!!!!! Back in August, Hayden’s BMT was shown to be 100% engrafted and on day 100 his T-Cells were at 9% so his body is really working hard to get back to normal. We are so excited and proud of our Hayden man!

Also, Cyclosporin is DONE! He had his last dose of .2ml on Monday evening. As we brought him down from .4 to .3ml, we noticed some rashing occur. I applied Hydrocortizone cream and lots of Eucerin lotion twice a day and the rash has gone away for the most part. He still is extremely dry and the Eucerin and Aquafor creme is still needed. He is very lucky that his GVH was so short lived and mild.

Since the steroids are done so follows the 250ml of fluids each night and the blood pressure med. His BUN level is at 13, which is normal and this number tells us the kidneys are happy without fluids. We still have 2 more weeks of antibiotics (Nafcilin) to give every 6 hours through the gravity drip IV. I can see the light at the end of the tunnel!!!!!

Hayden’s pneumonia seems to be contained and we see no signs of a blood infection. He still has a loose cough and runny nose but has a great appetite and energy level. He is now telling us when he wants to sleep by either bringing us up to his room or nodding yes when we ask him if he wants to sleep. He is like clockwork with his two naps, which is sooo good. I tell him he has to rest his body and he nods yes!

Hayden has discovered where his coat hangs in the hall, so he wants to put it on and go Bye Bye, it is so hard to tell him no. Soon he will be free to go! For now, he walks around the house with his coat and Packer hat on waiting to go somewhere.

I had to bring Hayden in to see Dr. Taylor on Monday. As I was vaccuuming the livingroom Hayden joined Abby upstairs, Abby shut the door into my room and I stopped the vaccuum to go up there. As I opened the door to yell at Abby for playing in my room, I see Hayden sliding off the bed into the night stand. He cut his right eye a bit. It was bleeding so I checked to see how big of a cut was there. Just to be safe I called Dr. Taylor, his Pediatrician at Dean Clinic. The nurse Pauletta told us we should get it checked out. This time of year clinics and ERs have lots of germs and viruses lerking around, we are to stay away with Hayden’s immune system being so weak, but I really was afraid it was worse than I could see. Dr. Taylor took us in right away and no stitches were needed.
Abby cried that his eye was broken! I told her accidents happen and that mom makes rules for a reason-no more monkeys jumping on the bed!

Hayden and Rick returned home from the hospital late (last) Wednesday night. He had been diagnosed as having pneumonia and a staff infection. Both very serious for a normal person let alone a post bone marrow patient. He is on Nafcillin for 4 weeks.
We immediately had to unpack Hayden and get him set up for his antibiotics through the IV. The schedule is every 6 hours to start the IV and it is suppose to go for 30 minutes, it actually takes 40 minutes. We start at 11pm, again at 5am and go through the day 11am-working into his nap time and again when I get home from work at 5pm. That equals no solid sleep for me or Rick!

The medication seems to make Hayden a little ornary, but he is also learning the temper tantrum thing too, so a combination sure gets our attention. Since Hayden has a very limited vocabulary (Abbeee, Mama, Dada and ugh) he gets frustrated when I don’t respond to his pointing. He knows basic sign language words but doesn’t always use them. But as we did for Abby’s tantrums years ago, we stand back, keep him safe and wait for him to stop his tatrum. It takes just a few seconds to end.

He is back to his normal playing and eating routine, and roaming of the house just cause he can walk now.

The plan is to send Hayden home today after 5 days in the hospital. Four days were in isolation, meaning nurses and doctors all wore gowns and masks in the room to protect other patients from a potential RSV virus that Hayden was tested for. They do a nasal swab and send it out which takes days for results to come back. Each time we are in the hospital they do one on him and thankfully they have all come back NEGATIVE! So then everyone stops wearing the gowns and masks.
Hayden always remains in his room when we are at UW since we are still in isolation for post BMT at home. It decreases the possibility of him getting any other illness from kids that are also in the hospital. Also even though Hayden had vaccinations up to 4 months of age, his body now after transplant does not have any memory of them which makes him succeptable to Chicken Pox or any other serious illness.

We had our old BMT room again which brought back memories of our 6 week stay. This time though, Hayden is walking and has found “forts” to play in instead of the playmat. There is a clothes cabinet with double doors, which opens up to a 3′ cubby. Hayden will climb inside it and close the doors and play. You can hear him talking giberish and saying his favorite word “ABBY”. I wish I brought my video camera to capture it.

Also, Abby has shown him how to crawl under the crib and onto a shelf below it. He looks through the crib rails that slide down. What a card!

It will be interesting going home on the coldest day of the year. Thank goodness for parking ramps and garages-we won’t have to take him out in the elements.

Saturday morning Hayden woke up at 6am crying. He usually sleeps to 7 or 8, so this was the first sign that he wasn’t feeling well. I rocked him for awhile until he started getting warm, I got a temperature reading of 99.9 just minutes after he woke up. I gave him Tylenol at 7am.

He started shivering as I held him so we called the Hemotologist on call, who called back immediately. Our options were to go to the ER or be admitted. Since the ER is germ infested and we would have to take hours to brief these doctors of Hayden’s history we chose to have him admitted. We are happy we did as he got very sick very quickly.

At 9am we arrived to the Peds floor at UW Children’s and we checked his vitals once again. His temperature was up to 101.5 and he was hot to the touch. He just layed there lifeless and whining in pain.

The lab techs came to draw blood for cultures but the hickman wouldn’t draw out, only flush in. This is the third time it has clotted and my biggest fear was infection in the line.
Once we finally got the line to draw, it clotted in the vials the first time and they had to draw more blood. They already took 10mls out, they took another 10mls and they cautioned me that he may need a blood transfusion. They nurses watched his blood pressure closely from that point on. It dipped as low as 45/25 and then they increased fluids which help increase the blood pressure.
He also was started on a general antibiotic till the test results could tell us what type of infection he had. At this point Hayden didn’t want me to hold him, he must have acked and he seemed to be ha

Within 6 hours the red lumin’s culture started to grow stuff, which means bacteria in the hickman line. The white lumin took 11 hours but did the same thing. So Hayden is being treated for a bacterial infection in the blood. To boot, his chest x-ray showed pneumonia in the right lung. He is now on an antibiotic to kill both these bacteria growths.

Today, Sunday, he woke up at 1am ready to play, we stayed up till 3am and played a little cause I was just so happy he was active and in a good mood. He started having bowel movements then too, which showed his kidneys working to get the access fluid out of his body. The nurse noticed he was puffy from too much fluid, so the fluid was slowed down to allow his body time to waste it.
By morning Hayden was up and walking and playing, he still had a fever of 100, but with Tylenol he felt good enough to play and eat. We all were so relieved.

We will stay at UW until all results come back for what type of bacteria he has,probably for another day or so. Vacomiacin is the antibiotic that he is on now.
We will keep you posted…

 BUN 29 (still high, should be 5-18)
CO2 content 19 (should be 22-32)
WBC 9.1
RBC 3.5 a bit low
Platelets 357 (wish we could give some to Ayden and Nolan!)
ANC 5300

Today Hayden got IVIG for a boost on his immune system. Hopefully it will help kick the cold. Abby decided she wanted to come with today, which meant Hayden didn’t want to nap because he is too busy watching Abby. They both feel asleep on the way home so at least they got a half hour nap in.

Hayden’s BUN is still high at 29 so we continue the fluids to keep him hydrated, but we anticipate only a few more weeks of that since we started .2 and .3 on his Cyclosporin today. Hayden still has that rash I spoke of a few weeks back. I thought it was changing lotions.   Hydrocortizone takes it some what away so we are thinking it is still the mild version of GVH. Doctors Delgado, and DeSantes looked at it today along with Sharon, (NP) and aren’t too concerned because it doesn’t cover over 50% of the body.   This means additional steriods aren’t needed-thank goodness, his temper is bad enough on cyclosporin.
I slather on Hydrocortizone twice a day along with Eucerine lotion to keep the rash down. My plan was to start back at work 100% after the new year.   Well, my time spent medicating Hayden has increased, once he wakes up at 7:30 or I wake him at 8am, it now takes me longer to get meds and lotions done.

It is also TAX SEASON so I am solo in the evenings except for Wed.   We will do bath and dressing change that night and then again on the weekend.  The rest of the time I just wipe him down with a wash cloth if needed.

On Thursday I will find out if Sue can continue to help on the weekdays with Hayden.  She goes back to work so it will be schedule and health permitting.   Otherwise I will have to find a nanny for 3 days.  Tuesdays I am usually off with day treatment or clinic, and once a week a family friend, Liz, watches him.

Since Hayden is walking he only stops to eat and sleep, otherwise he is wondering around the house non-stop.  It tires me out watching him and my house is in shambles since he picks things up as he moves and drops them as he sees something else to play with!

Abby has been acting up lately-not listening and talking back, and time-outs aren’t working as well. We decided we have to take another approach.  Instead of constantly repremanding we will go back to the sticker method I used for potty training.  She get’s a sticker for good behavior and good listening, once 10 stickers are in a row she can choose a day out to Chuckie Cheese, open gym, Children’s museum or ice skating with dad or mom!

I’ve got to get Hayden to bed again, he went down for a nap at 7pm and slept for an hour.  Now he is up and has no intention of going to bed at his bed time! Crazy kid!