Hayden is doing well with no platelet transfusions last week. We haven’t been able to skip a week since he started on platelets about 9 months ago. This means that either his body is making platelets already, slowly, or his body just isn’t destroying them as they used to do. Either way, it is a good thing. He is riding at 25k for platelets, staying above the 20k cutoff we set, but low enough that it makes mom and dad nervous through the weekend.

His blood pressure still remains high, 120’s/85ish which is up from his normal due to medications. So he continues to take Iradipine for it. The GVH is still red throughout his body. We lube him with cortizone cream along with two daily doses of the cyclosporine.

On Saturday Rick got out of the house to enjoy the summer day and Sunday Abby and I went to church in the morning and then Cornfest later in the afternoon to enjoy our time outside. We took Hayden for a long walk on Saturday in which I didn’t hear one peep from him the whole time. Since he has to wear the mask, we don’t like to keep him outside too long, he gets quite hot underneath it and starts to breath harder.

Hayden really is enjoying his baths, I set his bathtub up next to the tub so Abby can take a bath at the same time but in their own tubs. They think that is pretty neat.

Tuesday is clinic again, so hopefully we have even better levels than last week!

Don’t forget to check out the new pictures from Hayden’s digs at UW!

kb

 ANC-2880
WBC-3.0
Platelets-23k

Since Monday Hayden has really settled in to his new/old home. Throughout we have maintained a pretty consistant schedule which we hoped has helped. Rick and I are back to work, between clinic visits to UW for check ups and transfusions. Tuesdays are BMT clinic days so we will have to take turns taking him. This past Tuesday I forgot to hold off on his Cyclodine med so he could be tested for Graft vs. Host so we have to go back on Thursday so they put it off until then. He is showing a mild case of GVH on his body, so he has to go back into day treatment on Thursday to be checked again.

He has gone a whole week without having a platelet transfusion which is very good right now. This means his body isn’t destroying them or his body is creating new platelets already. We go back to day treatment tomorrow for platelets and a recheck on GVHD. It was good to see the day treatment nurses again. They had a cake and present for Hayden since it was his birthday.

Not sure what happened to Monday’s entry but I will do it again…

The weekend was a little scarey for Hayden. Going home to a strange place, sleeping in a strange bed and seeing these very large dogs walking around above him when he was on the floor, seemed to be too much for him. He would scream in terror if Rick or myself would leave his side and getting him to sleep was a long ordeal. We would have to stay right by the crib until he would fall asleep.

As the days passed he grew more relaxed with Abby, and his surroundings. We took a small walk on Sunday which he enjoyed (and he kept his mask on the whole way) and played the rest of the day in the livingroom which was gated off to the dogs. As he got up and around the house in his walker, he seemed to get more comfortable with the house. We don’t know if he lost his memory from the morphine or if he was just confused with what was going on.

He is still on quite a few medicines (5) and we have to flush his hickman lines with a medication to prevent infection in his lines since he had a rip in one of his lumins just before he was to leave Children’s Hospital. He is eating well and we have seen normal stools each day, without the help of drugs. Yah!

Hayden is going home today! We are packing up his room and waiting for his platelets to come so he can get a refill. Last night while the nurse was flushing him, his one lumin from his hickman ripped so he will also have to have them repaired before we leave. Thank goodness it happened here and not at home.

Our instructions are for him to wear his mask on walks, clinic visits, and while cleaning our house. Also in public, but he won’t be making too many appearances for at least the next 100 days. We have to limit visitors and if anyone does come to the house, 2 people max around Hayden. Hayden will have to forgo church and shopping for at least 6 months because of close contact and viruses people could have in that kind of atmosphere.

It is sad to say good bye to the hospital staff, but I am sure we will be seeing them again! Home sweet home for Hayden!

Watch for August pictures to be posted soon!

kb

I have to go back and look at what day we are at, we have been so consumed with preparing our house for him to come home, we have been slacking on the site….

I just attended rounds for Hayden and it is still a go for him to go home on Friday. Since the beginning of the week, he has received platelets, IVIG, and yesterday they gave him something new. GCSF is a cell booster that basically motivates the growth of the cells and neutrophil.

Yesterday levels
wbc-.6
anc-162
platelets-98k

Todays levels
wbc-2.0
anc-1110, yah, huge jump from yesterday!
platelets-83k

So we will be going home on Friday, I will be monitoring his blood pressure with a traditional cuff and stethiscope-they will teach me today, and also taking the usual CBC lab work to Dean and returning on Tuesday for checkup with Dr. Desantes in the BMT outpatient clinic.

With the help of LeeAnn, Lori, Kristin and the Grandma’s we have been able to get the house cleaned, carpets scrubbed and Hayden cared for since Tuesday. Thank you gals and everyone else who have offered and helped in other ways. We so appreciate all the kindness, prayers (keep them coming until 100% engraftment) gifts and support so many of you have given. Even though you may not know it, you all have made an impact on our lives, especially for Hayden! We thank you.

Hayden continues to eat well, and takes his 5-6 medications pretty well. There is usually a little fight to hold his head still. But we fool him into thinking we are putting the nuk in his mouth and then we put the meds in instead. His bouncing in the exersauser has increased in loudness and height as well. We might have to take that with us!

His meds include:Ursodiol, cyclosporine mixed with apple juice (pretty yucky, he gags from it) Lactolose for stooling when needed, Glutamine for mouth care, predisolone (steriod), acyclovir (not sure on that one).

Someone will clean our house to keep up with the weekly dusting, vacuuming and mopping for awhile until we get his med needs down and I can continue with cleaning. Also we were encouraged to bath the dogs more often until Hayden’s system is up to speed. So we have set up an every other week bath at the groomers. This will eliminate some pet hair and dirt from the pups. I am so happy the dogs can stay and if this is what we have to do for awhile, so be it. The extra money we have to spend on these things are so worth Hayden’s health!

Little man is up from his nap, time to play!
kb

WBC-.7, down from .8
Platelets-15k, he gets platelets today
Neutrophil-320, down from 544

We were told today that doctors plan on having Hayden go home by Friday. We are very excited, but most of all NERVOUS!!!!!!! We don’t have our house cleaned the way we were instructed, so tomorrow, Grandma JoAnne and Aunt Kristin have to come and watch Hayden while Rick and I clean.

Doctors aren’t worried about his numbers going down, they said they are evening out, so we will just have to wait and see if they are right! We have told the staff that we don’t want any more morphine given to Hayden since he is completely off of it. We will request Tylenol or Oxycodone for pain. So far he has tolerated the pain and is eating well.

In the next coming days we will meet with the BMT coordinator to discuss what we have to do to our home and have our questions answered about how to care for him there. He will have tons of meds that I will have to give him orally plus back to his normal dressing changes and daily hickman flushes. I will again have to draw blood for platelet, RBC, and neutrophil counts.

Since Hayden won’t be able to go back to Daycare for about a year, we have Grandma Sue watching Hayden almost every work day. She will change her nursing hours at St. Mary’s Hosp. to work 5 days on, every other week. This will cover all days of care for Hayden except every other Monday and Tuesday when she will be working. Right now Rick and I will divide those two days, but we will begin to look for someone to help us out on those two days once tax season starts.

KB

Hayden had his morphine discontinued on Friday at noon, though the next two days were very uncomfortable for him he is now doing well.  I think he should have been weened off a little slower than he was but it’s over now. 

His labs confirmed he has a virus called Rhinovirus.  It’s just a common cold type and the doctors don’t seem too concerned, it just needs to run it’s course.

His white blood count went as high as 1.4 but dropped to .8 today, we don’t like to see it drop but fluctuation was expected. 

His food assistance has been discontinued entirely.  He has been eating very well so they felt it was not needed.  Also discontinued are all his antibiotics.  The only thing he receives now is Heparin, cyclosporine, and  an anti fungal.

The next step will be switching his cylcosporine to oral, this is expected to happen tomorrow.

rb

WBC-.9
ANC-639
Platelets-79k

Hayden is still doing very well. He is still playing, and eating. Rick passed on PT yesterday because Hayden was quite tired from being up since 5am. Doctors are still talking about taking away the morphine, but they decided to wait a little longer.

If he has another ANC count of over 500, we can bring Hayden out into the controlled BMT hall. That is scarey for Rick and I since avoiding germs and other viruses has been such a high priority.

We are still at .7 for white blood cells. That is okay. But we do have numbers for ANC levels, it is 399. We were told in the beginning of this whole BMT, that the ANC has to remain at 500 two days in a row, for him to be able to go out in the hall with his mask on.

Hayden had PT today, where we added another play mat so he can work on crawling which he is slowly getting. After playtime with Physical Therapy he got platelets since he was at 16k today. As usual, he gets a dose of benedryl, tylenol, and then the platelets so he doesn’t have a reaction, so he was really tired when naptime came around.

They have also decreased his TNA down to 16 hours a day with 0 fat vs. the 19 hours of liquid food. So this morning we had scrambled eggs, yogurt, and even his first pancake which seemed to get stuck a lot in that mouth. Morphine is reduced to .2 as well.

kb

Hayden is again doing well. His white cells are up to .7 and platelets are at 31k. He is eating and drinking well. He is fighting on taking his naps, so we know he is getting back to his normal sassy self.

He is moving around so much that we are constantly calling the nurses in to untangle his lines. He sets a beeping noise off on his machines that we have grown accustume to when he is “occluded” or cut off from his drips. So we call the nurse back in. Hayden has really learned how to wave good bye well to people coming in and out. I work with him on using his signs as Abby did. It makes for better communication between us for eating, playing and even manners. He knows milk, more, and eat and we are working on please, and thank you.

kb