I feel like our whole house is one giant germ, we all have mild colds, but Hayden’s is full blown due to the WAS. We still need to find out what his immune system is capable of in fighting infections and virus. We are waiting for the test results on this issue from the auto immune doctor at UW.

Since last Thursday we have been in and out of Dean clinic, twice a day, getting Nebulizer treatments with a steroid liquid, Epi-something. Hayden is still working very hard to breath. He remains on the PredisoLONE despite our HUGE concern that his body will not continue to produce natural steroids. But we must keep him comfortable and keep the fever down.

Hayden’s platelets are at 65k today, up from this past Friday which were at 59K. This is the first time they have gone up on their own, without a platelet transfusion. I owe it all to the PrednisoLONE which is a steriod, which has known to increase platelet levels.

Hayden has been out of daycare for a week and a half now, he gets to hang out with either Grandma or myself, which he doesn’t seem to mind at all!

We love hearing from you all, in support of our little man! Thanks for all the well wishes!

kb

Hayden is still sounding like an old dog when he coughs (sorry Anna and Ivan, our 8 yr old Golden Retrievers) so I am bringing him back to DEAN this afternoon. We have been watching his temperature and today it has went up to 99.3.  Despite the shower steam and nebulizer treatments, I think we will have to continue the PredisoLONE to kick this in the but. I will contact Dr. Delgado first for his opinion.

This morning we went for more platelets at UW Day Treatment. Hayden’s platelet count was at 33k as of yesterday at 5pm, so by this morning we guess they would be down in the 20s which is not good with him fighting crupe. Everything went well, no reactions to the transfusion. Next week
Wednesday Abby asked to come too. Grandma B will be there again, so I will have some  help.

His breathing more normal today, and his cough is still productive and loose. Despite the cold, Hayden’s appetite didn’t skip a beat. He tried peas for the first time after his day treatment visit. He loved them! Now we play until his afternoon nap, those platelets sure do give him lots of energy!

Hopefully tomorrow he can return to daycare and I can get back to work.
kb

Hayden did get to spend some of Easter Sunday playing with his Easter baskets with Grandma and Grandpa A., Auntie Kristin, and of course Mommy, Daddy, and Abby.

So in addition to the antibiotics he already takes twice a day on Saturdays and Sundays, Hayden is on PredisoLONE syrup, which he hates, and his Nebulizer, plus his daily flush of the hickman or changing of the dressing, which ever one is needed. We still do find time to play with his toys and read his favorite books. 

Platelets are at 44k as of Sunday, we go again today for a finger poke to get a platelet count for tomorrow. On Tuesday at 9am we go for more platelets. Hopefully this transfusion will help with fighting the cold.

I have found, online, another boy who has WAS. He was diagnosed at 12 months old. His mother has journaled about his journey which I can’t wait to read now that our internet is working again. I will keep you posted on what I find out from David McNally, a BMT survivor.  The song by Mark Schultz, “He’s My Son,” which I have uploaded to Hayden’s site, was borrowed from David’s website.

 kb

Hayden developed a cough and congestion on Saturday.  He sounded terrible and would cry everytime he coughed.  His difficulty breathing kept waking him so he couldn’t get any sleep.

We thought about bringing him in Saturday night but decided to wait until Sunday morning.  I took him in Sunday early morning and ended up spending the whole day there.  He had to have his diaper tested for blood, a platelet count, chest x-rays, and an exam.  He ended up having no blood in his stool, his platelets we at 44k, and nothing appearing in his x-rays.  His diagnosis is an upper resperatory  inflamation, or crupe.  His immune system does appear to be fighting it because his white cell count is elevated.

He received multiple doses of medicine through a nebulizer, some type of stronger stuff that can only be done at the hospital, and oral doses of the steroid Prednesone.   This helped a great deal and made him sound much better.  He was up multiple times last night but he did get some rest.  We can continue to give him his normal nebulizer treatments which also help.
Tomorrow morning at 9 am he goes in for a platelet transfusion.

rb

Today’s platelet count is at 88k, which is still up there and safe to get Hayden through the weekend. We will check again on Monday morning which will bring us to day 7. Platelets tend to last for about 7-9 days in Hayden’s body. A normal person usually has 150-180k and those live twice as long as Hayden’s before they die on their own. Hayden’s antibodies seem to destroy his platelets before that time.

His eczema is not getting better, so I am going to make an appointment with a dermatologist to see what they recommend for his head. This is a symptom of WAS, but must be managed to prevent infection. We just got done with Physical Therapy for his torticollis (holding head to one side) so why not start with another Doctor to keep mom on her toes.

Hayden’s Globullin and blood cell numbers on normal for his blood work so with the dark stools, we are looking into whether his baby food (organic veggies and fruit) may be the culprit. Dr. Delgado isn’t worried about this, so we won’t be either, we will just monitor it.

Happy Easter!
kb

We are very excited to tell you that doctors have found 3 matches for Hayden’s Bone Marrow typing! One is a blood cord, and the other two are Marrow donors. The UW transplant team will do indepth testing to see which one matches the best. We were also told that one of the matches looks to actually go beyond the 8/8 matching factors, which we don’t quite understand yet.

I can’t help but wonder who the donor is that will potentially “save” our son’s life. That information we might never know as it is confidential. Either way we are so grateful to this donor!

We also are still trying to figure out this dark stool thing, no blood was detected in the stool we tested, so we can’t help but wonder if it is his baby food that is changing the color. Sorry to speak of stools, but this is very important in determining whether he is bleeding internally or not.

kb

Hayden was acting very unsettled and had very dark stools, which usually means bleeding internally.  He was brought in and tested at Dean.  Nothing unusual has been found, no blood in the stools and his platelet count was at 160k, which is very good. We suspect it’s just his normal reaction to the platelet transfusion.  Stool this morning is pretty normal so we will watch him throughout the day.

Hayden was at 60k for his platelet count as of last Wednesday, by Saturday he was down to 36k so we knew by Monday he would be needing more platelets. We went to UW day-treatment center for 12:30 Monday, St. Patrick’s Day, good thing because Hayden was at 19k for platelets and his eczema was very bad. For once, this visit was somewhat relaxing, no needle pokes and no crying from the butterfly needles moving around in his veins trying to thread. We hooked Hayden’s catheter up for the Benedryl, and then for platelets, we were done in no time, without the painful crying and bruising Hayden usually went through.
The nurses now fight over who gets to care for Hayden since they don’t have to poke him anymore.

Today Hayden’s skin (eczema) looks and feels better. For a normal person, having eczema is not a huge deal, but for a person with an very low immune system, scratching can cause open cuts, which can get infected, and infection for Hayden is very serious as is fever and viruses. Hayden usually feels a little achy a day or two after this proceedure, but seems to be doing well with no side effects. So so far so good with his St. Patty’s Day platelet treatment!

With Hayden’s Hickman catheter, we have to maintain it. At first Home Health was coming to help flush the tubing and change the dressing, now we are confident enough to do this ourselves. Of course we need two people for this proceedure, one to hold Hayden’s hands away from the sterile area and the other to be sterile and change the durapatch, flush the tubing and change the safe-sight valves. All terminology I thought I would never use. Home Health is now going to Hayden’s daycare to monitor his Hickman and draw his lab bloodwork on a as-needed basis, which saves me a trip to the labs.

The goal for the week; no visits to UW and Dean for the rest of the week!
Hayden’s next transfusion should be 7 days from now, give or take. We will check his plateletes as usual on Friday to ensure he will be safe for the weekend!

Thursday and Fridays procedure went well with putting a “Hickman catheter” into his chest vein. He now can have blood drawn and treatments administered through this port without getting poked again. This Hickman will remain in his chest until after the transplant is complete.

I did just learn that Dean won’t draw blood labs out of the catheter, which defeats the purpose of him having one, so we don’t have to keep picking him. Hopefully Home Health will do this blood draw for us, since they are coming twice a week anyways for the Hickman catheter care and to check for infection.

Rick and I have had to learn how to care for the Hickman and how to flush it on a daily basis and change the dressing every 3rd day. The whole environment must be sterile from the skin to the gloves we wear, AND we have to keep Hayden’s hands away from this whole area at the same time.
Pretty intimidating!

Hayden is doing pretty good with this tubing coiled around on his chest, it is under his onesie most of the time, so he doesn’t have a chance to pull at it. He does cry a bit when we change his dressing, since the sterile rubs must sting on his open area, where the tube comes out. That skin will grow around the tube and eventually the stitches will come out and the tubing will not have to be bandaged. It will be a long month though!

Hayden is at 88,000 for his platelet count as of this morning, so we will test him again on Wed. to see if we need to go back in UW day treatment for more platelets. I hope he stays up there in count, he really gets an upset stomach from the treatments, not to mention he is still teething which gives him soft stools.

As of right now, the kids and I are planning to be in GB Wed night until Friday of this week for my work so Grandma and Grandpa will be watching the kids during the day. But if Hayden’s count is very low, we might have to get a transfusion yet this week. Oh the stress of waiting!

We are in the final stages of Hayden’s NEW webpage, www.haydenblatter.org, we will have daily entries about Hayden’s progress, pictures and links to related information that will help you understand this disease.

A lot of people have asked about being a Bone Marrow Donor, his page will provide info of what we have been told by our doctors on how to get on the donors list. Hayden’s Dr’s are going through the National Bone Marrow and Blood Cord list for his preliminary search.