Hayden is still hanging on to his cold. It is mild, less drainage, but we still address his breathing with inhalers which seem to work well. Hopefully, this Tuesday’s clinic appointment will show a good cyclosporin level and BUN level for kidneys.

This past Saturday was just a beautiful day, so Hayden got to mask up and go outside to enjoy the fresh air. Abby and I went to Mt. Horeb festival with her daycare friend, Brianna, Clara, who is Hayden’s age and of course Mama Wendy. Afterwards we watched the kids jump on the trampoline while Hayden watched Clara (from a distance) the whole time. It was just so cute to see him watch people. I can’t wait until they can interact and even be at daycare together. Two little red heads=trouble!

Hayden has pretty much lost all his hair and his eye brows are really getting dark from the cyclosporin (steroid) med he takes. When he got home from his BMT he still had patches of hair, now it is fuzz. He also has quite a hairy face from the steroid, Rick teased that he should be a warewolf for Halloween! Hayden will be happy being my cuddly teddybear or Daddy’s little sidekick, since he adores Daddy so much!

In all seriousness, I was looking back at our last year with the kids. From the excitment of bringing Hayden home when he was born to our long hospital BMT stay with him this past July, I know that with every hard situation that God gives us there is a lesson to learn from it. My biggest lesson I take home is NEVER take my kids for granted. I am blessed to have had the opportunity to become a mom.¼br> Knowing I can not have any more maternal children because of WAS, I get angered seeing sick kids (at the hospital) who’s parents are not by their sides to comfort them, to reassure that they will be okay, to just hold their fighting little bodies and make them feel better. I pray that those parents refocus their lives on their child.

We have a long ways to go yet with Hayden’s BMT care, but to see him happy, playful and this healthy from his new stem cells, reminds Rick and I that all the time and energy we have put into Hayden’s care has saved his life! It is 150% worth every sacrifice!
And we couldn’t have got to this place without your prayers! Thank you!

Last Friday Rick took Hayden in for his second weekly IVIG treatment. I should have been routine, tylenol, benedryl followed by IVIG globulin. His blood results came back that his BUN (kidney function) level was very high and his breathing was still rough. He was admitted at that point. The doctors said there was no taking chances on post BMT patients.

Rick called me to let me know they were being admitted and I freaked out, the one weekend we had to be the best man, and maid of honor at Rick’s brother’s wedding! And Abby was the flowergirl, now what do we do? My parents were coming down for the wedding too so instead of them attending the wedding, they sat with Hayden at the hospital Friday night, and most of Saturday while we fullfilled our obligation.

Saturdays lab results came back normal so we didn’t have to do anything different. Perhaps the Friday’s count was misread or drawn out of the wrong lumin. Since the cyclosporin was given through the white lumin during his BMT stay, we always have to draw cyclosporin labs through the red lumin or the reading can be effected by an cclosporin residue in the line.

We were able to bring Hayden home late Sat. night. Rick, Abby and I waltz into the peds floor all dressed up in wedding attire ready to bring Hayden home at 10pm! It was a long day for my mom, Hayden and us but we all were happy to sleep in with no hospital noise!

I am beginning to think that Hayden is missing the nurses and just likes the window view from the peds floor!

He is now 13 months old, he is just about walking, he cruises the furniture, walls and anything on his way to his destination. He adores Daddy but always says “Mama” when asked to say “Dada”. You tell him “NO” and he shakes his bald head back and forth and laughs. His favorite toy is still his “cuddly” (lamb head on a very soft small blanket w tiny feet on the end) but the big wheel he rides and we push w/the handle is a very close second. We go around and around the livingroom and kitchen chasing the dogs and Abby!
He loves to be outside and go for stroller rides (with his mask on) and he  likes to eat meat and veggies. He will eat hot dogs for every meal if we let him. He spits out fruit, won’t eat it, even if we hide it in jello or pancakes! The best change has been wheening him off his expensive formula and introducing Whole milk to him, he really likes it. I still give him a bottle in the morning and in the evening for nutrients and fluids.

We have also switched Hayden from 250 mls of fluid (gravity drip bag) to 500 mls of pumped fluid each night. Last night Home Health showed us how to operate the electric pump to control his fluid intake. We have been giving the fluids at night so no body gets hurt trying to control that pole as he tools around the house and plays. We have had close calls with him pulling his tubing and pole over.
We give the fluids to him for 8 hours now instead of the previous 4 hours. Either way, we are up changing his diaper and making sure his fluids don’t run out. But now the pump beeps once it is done and we just have to flush him, and load his line up with Heperin and we all can go back to sleep. I think we will eventually start the pump at 10pm and that way it will go until we get up at 6am.

Marci tells us that Abby talks about Hayden at daycare nonstop, they are so excited to see each other when we get home! We can’t wait to bring him out with us camping, the zoo, the pumpkin patch and all the other fun places we take for granted.

We finally left UW at about 5pm Friday. We had agreed to stay to meet with a lung dr. about Hayden’s breathing issues. He suspects Hayden’s breathing could be leading to asthma related issues steming back from either premature birth or resulting from the Chemo or Morphine. Nothing is really proven, but either way, we will be addressing it with two different inhalers. One is very similar to his Albuteral Neb treatments but takes 3 seconds to give, start to finish. The second one keeps his airway open, reduces the inflamation. It seems to be working well.

We are going to have to stay yet another night to make sure all viral results come back negative. So far we had 2 of the tests come back negative. Other parts of the test aren’t done yet.

Hayden has responded well to the 4 hour neb treatments and continuous drip fluid. We still are hearing crackling in his breathes and a lot of mucus stuck in his little nose.

We have a nice view and Hayden is doing well and loving the “nurse” attention, so I handle another night!

Hayden is going on about 7 weeks with this cold that isn’t getting better. Tuesday’s Day Treatment evaluation showed him working hard to breath. Dr. DeSantes had Hayden admitted  right away and ordered chest x-rays and a virul swab test to be done asap. We were upstairs without receiving IVIG an hour later. They didn’t want to give him a $18,000 treatment if it wouldn’t be effective if he has Pnemonia. We later found the chest x-rays to show no Phenomia and he got the IVIG later that night.

Rick brought clothes for Hayden and I for the night, since we couldn’t leave. Every 4 hours Hayden receives a Nebulizer treatment, on going fluids and continuous pulse-ox to monitor his oxygen intake. He is doing really well and has shown improvement in his breathing since the repeated nebs.

I had his walker with me for day treatment so he has the ability to tool around just as long as his lines follow after him. He gets a kick out of throwing things behind the couch and watches for the helicopter to pass our room through the window. We should be released from the hospital by Thursday if all keeps going well. As usual the swab test results won’t be back until prob. Friday so he continues to be in isolation for virus and BMT issues.

wbc 8.8
ANC 6600
platelets 182k
BUN 21 (was at 28)

Hayden is your tipical 1 year old busting into cupboards, crashing my pots and pans, helping unload the dishwasher and exploring new areas of the house each day.
Dr. DeSantes continues to be happy with his progress. His red rashing has decreased some to allow us to reduce the predisolone to 1ml! This is great news, with his cold still lingering the steroids aren’t helping it. Tuesday, the nurse explained that the steroid is suppressing his immune system, and the IVIG is trying to boost his immune system so the faster we get rid of the steriod and let the IVIG do its job, the faster Hayden will fight the cold.

So we continue to do nebulizer treatments twice a day (he really sits well cause we read to him, Abby picks out the books each time), 6 medications by mouth, and 250 ml of fluid each day, which means 4 hours of being hooked up to a line attached to a pole which we carry around the house as he crawls or rolls around in his walker. We do notice that Hayden sleeps better with the fluids and nebs and his breathing is more normal.

wbc 10.
rbc 3.8
neutrophyl 7580
platelets 183k
creatinine **.5
BUN 28

Hayden is doing well, still fighting with his cold. BMT doctor is still concerned about his cold. He is hearing a bit of a crackle as he breathes but an albuderal treatment on the nebulizer seems to take it away. Orders are to neb him twice a day, plus his BUN level came back abnormal which is his kidneys not being happy with the amount of fluid passing through them. He is now to have 4 hours a day of fluids pumped into him. We have lucked out cause lots of kids are sent home from the BMT transplant being on fluids and even meds. We have had none of it till now. Home Health nurse came today to set up the gravity drip bag and pole. Now to just keep him in one place for a long period of time. Grandma tried giving it to him while he napped and he rolled over on his line which must have waked him up. So he ended up jumping in his Johny Jumper for a long time connected to his line.

So after eating almost a whole hotdog, mac and cheese and 6oz of formula (still can’t be on milk) the kids took a bath, Hayden got his neb, meds, another 6 oz and went to bed at 7:45. Last night he slept real sound from the neb treatment, hopefully tonight is a good one too.

Dr. DeSantes called last night to give us some great news. As of the August 8th engraftment test, he is 100% engrafted.  We are so happy, now we just have to concentrate on his ANC and WBC  levels and hope they keep going up as they have.

We can’t wait to have Hayden go outside next year and touch sand, swim in a pool and just be able to go to gatherings and be a kid! He has had his first year without learning about all the great things there is to see outside. Soon right?

Hayden’s platelets are still growing all on their own. This is the third week without having platelets and he is at 121k which is closing in on the normal amount (250-300k) a person should have. His neutrophils are at 5,030, normal is 11,000+. We are slowly getting there. His GVH is still considered mild and meds were adjusted a bit to bring down his blood pressure. I get a reading of 120s over 80s when I check him, so it still is higher than normal.

Hayden is easily set off, his temper can go from 0 to 10 in seconds, but that is a normal reaction from the Steriods. He is still loving his meals and has to feed himself.  So once again (since Abby was small) I am preparing foods that he can feed himself.

Hayden still has about 5 or 6 meds that he takes each morning and evening and one that is given just on the weekends-TMP Sulfate. He has learned to fight us when we are giving the meds so we have to be careful they get into his mouth and not all over him. He screams and shakes his head back and forth. I feel so bad, but it has to be done to keep him healthy and alive.

Hayden will start to get IVIG once again on a weekly basis. He has had Rhinovirus, a common cold, for 4 weeks now and Dr. De Santes is concerned it could settle into his lungs and cause viral puemonia, so this may (they don’t know) boost his system each week to help his body fight the cold. Poor kid gets his nose wiped about a 1,000 times a day right now.

His favorite toy right now is anything that “bangs.”  He loves things like his tool bench where he can bang the hammer onto. Pots and pans are always fun but daddy can tolerate that for only a little while. Mommy just blocks it out while Hayden has fun! He has also learned how to use a hair brush, so he brushes not just hair but Abby’s whole body with the brush. It is quite cute.

kb

Hayden is making his own platelets! Yah. He has had his third blood check and his last count went from 25k platelets to
65k platelets. So for the second week we haven’t had to have platelets!

Our main concern now is the Graft vs Host (GVH) disease which is still being classified as mild. You can see a faint redness in his skin tone. His dosage for Predisolone has been increased to 3.3 ml, up from 2ml. His Cyclosporine was increased a bit as well. Both meds  are preventatives for GVH.

This is the second week Hayden is at home, he is crawling, pulling himself up on things and eating Macaroni and Cheese, spaghetti, potatoes, carrots, eggs and lots of other people food like a champ!

We had 0-3 child counselor come to the house to assess Hayden’s developmental skills. He passed with flying colors even though he has dealt with everything regarding the transplant. We will check his milestones again in another couple of months just to keep him on task!

In addition to Grandma watching Hayden during the week, Liz will start filling in when Grandma is working. Liz is a retired nurse and good friends of the Blatters. She and Hayden met yesterday and hit it off. She has 7 Grandchildren so she is very used to kids! Even though Rick and I administer all meds and flush and care for his Hickman, it is comforting to know that Hayden is in “medical minded” hands!