We are back to once a month for the IVIG day treatments. Clinic is still each week for awhile until we feel Hayden is doing well enough to stretch it to every other week. Really no other changes. We are continuing with his nightly fluids of 500ml until his cyclosporin is done (I say 4 weeks, Rick always says longer) so either way the full night sleep for me can come after that has ended! hmm, sounding so nice!

Counts came back normal, forgot to get the printout from the Day treatment nurse for exact numbers. His platelets are still in the 300,000 range, which I am still jealous of!

Hayden’s Asthma (thank you Bob for the correct spelling, brain freeze there)  is doing really well with his inhalers. We bumped him up to 110mcgs for the flovent which really makes a difference when he is huffing and puffing.

 It has been almost two weeks ago now since Abby got her Tonsils and partial Adnoids out, she has done a great job with healing and tolerating the pain. She is now off her Tylenol with Codein but we still continue to eat softer foods until friday. Day 2, Abby was even eating eggs and Mac N Cheese which we thought won’t happen until week two. What a little champ!

This Christmas we are staying home to keep away from any viruses that may be lingering in other homes. We welcome family and friends to come and visit if you are well, with no existant cough or sore throat.  

Hayden is all about cruising the house, up and down the stairs, and breaking into our bedrooms to get into things he isn’t suppose to be in. He loves sitting on Dad’s top shelf of his closet and pulling his caps off their hooks (while Rick holds him of course). Now Abby is really watching her Barbie dolls accessories so he doesn’t put them in his mouth. Hayden loves playing with Abby’s horses from the Barbies and moving the Barbie furniture around in her Barbie house. Of course this angers Abby and she yells at him and he laughs back at her. It is starting already.

 These past few weeks we have been in contact with new WAS families. I am so sorry we have to meet this way, but I am so happy we all are getting good care to control the issues.  Meanwhile I feel very fortunate to be able to discuss Hayden’s history and his current challenges with you all, and hear all your stories and challenges of your son or yourself. I feel God has given Rick and I this challenge to allow us to meet and potentially help other get through this long but-oh so worth it-journey.

Check out the “20 takes” of the Christmas picture for our card. I should have minored in photography with my design degree! Maybe they would have turned out better! I suppose it won’t be so funny then…

Happy Holidays and safe travels!
Kami

This is Rick, I haven’t done a post in a while. 

Not much new to report from Hayden’s appointment on Tuesday.  His BUN level is down to 36 which is still too high but much better than last week, I guess the eight hour IV is helping.  His breathing is the same, not getting any worse and the inhalers are helping. 

He is down to 4ml in the morning and 5ml at night for the Cyclosporine.  This is down from 9ml morning and night.  Going down 1 ml per week he will be off completely in 9 weeks.  This means his immune system will be able to do it’s job without being suppressed.  Remember it is suppressed to prevent GVHD, which is when his new immune system identifies his body as foreign and tries to destroy it.  To date he has had very few symtoms of GVHD, and currently he has none that we are aware of which is great. 

Little Abby is doing okay.  She’s in pain and is uncomfortable but is being a very good girl.  She had her toncils and adnoids removed yesterday.  Everything went fine.  The doctor said her worst day will be in about five days, with her being fully recovered in about 10.  Right now we are letting her do whatever she wants and letting her eat whatever she wants.  She has been watching movies  and eating popsicles, orange sherbet ice cream, apple sauce, pudding, and eggs.  The egg (soft) eating is probably unique but so is my little girl.

I’m going to put some new pictures on that show how big Hayden is getting.  You can also see his hair.  He looks good, it has grown to about a quarter inch all around which is a good style for him.  Maybe I’ll see if Kami will do some photoshop work putting him in one of my old military pictures when I had my hair about that length. ¼/p>

Tuesday we had an appointment for IVIG, to help boost his immune system. We have a doctor come down to see Hayden while we are in our day treatment room, that is our BMT clinic appointment too.  A 2-in-1 appointment!

Counts came back normal, except for the BUN. It was very high this week (49) which means the kidneys are not happy. That is really weird because we are decreasing his Cyclosporin med each week, the BUN should be going down slowly. So we just had to increase his fluids at night from 250ml to 500ml with sodium. That just means they will run 8 hours instead of 4. More sleep for me, unless he creases his tubing like he did last night. He is hooked up to a pump that beeps until the tubing is cleared again. Of course Rick NEVER hears the thing beeping, just me! the sodium is to increase his acidic levels, which is a serious thing, but why not add it if we are doing fluids anyways.

Unfortunately, we are staying home for Thanksgiving, Rick and I and the kids will enjoy each other’s company all day with a turkey, and the fixings to eat throughout the day too! We plan to decorate the tree and by the time Rick and I are done making the food, we will be ready for a nap!

Hayden’s cold is getting better! He will remain on his inhalers throughout the virus season to keep his lungs clear and hopefully keep him out of the hospital. The lung Dr. thinks he has viral indused asthma, so with that diagnoses, we will keep up with inhalers and hope he doesn’t get any other sickness!

Hayden is very excited to be sporting a new pair of shoes-Robeez, he loves things on his feet, so I hope he will be able to walk a little better with these than with his slippery slippers! Robeez are a leather slipper-like shoe that cost an arm and a leg, (but I got my online, clearanced, so they were cheaper) but so worth it. Abby had pink ones w flowers on them, and she lived in them. You can wash them and they STAY on their fat feet too!

 Happy Thanksgiving!

We finally were told that Hayden can go home tomorrow. With one antibiotic remaining, plus his other BMT meds we will continue to get IVIG regularly-once a week I am thinking and go back to weekly Dr. appointments to watch the lungs. We have a game plan coming from the Pulmonary doctor as well. Doctors now think that the spots they were seeing in the lungs were that of aspiration. Last Monday he threw up mucus, which strained his lungs, which are weak to begin with. It is either that or pneumonia which they have been treating with the antibiotics. Also, since Hayden has asma (spl?) they will increase his dose of Flo-vent to keep the airway open. Flo-vent and Albuteral inhalers will be given in the morning and in the evening as we have previously done. But Albuteral will be given every 4 hours to keep his airway open through these colds. Not a whole lot of change in our routine.
We can’t wait to be home. Staff is great here but home is where we are most comfortable. Grandma and Grandpa Augustine were down today to look after Hayden while I went into work for awhile to get some stuff done. It was nice to get out, even if it is cold out. Rick picked up Abby from daycare and came to the hospital too to see us and Grandma and Grandpa. It was nice to have a meal with the family again.

We now have to get Abby’s tonsils out on Dec. 5, so we will have a week of nursing her back to health with ice cream and popsicles!

Home sweet home tomorrow!

We were only suppose to stay 2 days, but doctors can not determine if the pneumonia is viral or bacterial. They did a CT of his chest yesterday afternoon and determined it is NOT fungal which can be deadly after the BMT. They did see a coating on the brochial tubes attached to the small tubing of the lungs. The plan is to watch and see if the two antibiotics that he is on will do the job or if we have to do a brochial-biopsy to remove a sample of the growth on his lungs to do a biopsy. I have heard that this biopsy is painful because they put a tube down your throat to access the area. He would be sedaded again.

He is in good spirits, playing, riding on his firetruck around the room and listening to his songs that sing his name-an early Christmas present. Shhh cause Abby gets one too with her name sung. www.poopsies.com
Hayden is coughing some, and still remains congested but it doesn’t seem to bother his sleep and activity or eating.

Today Rick comes to relieve me for the night. We both have lots to do at work, so it is hard trying to decide who has to stay with Hayden and who can go to work. By Tuesday, hopefully, we should be ready to go home with whatever medicines he needs to be on.

Hayden was suppose to have a CT on Wednesday but his cold is getting worse. The nurses checked him out and found him working hard to breath again. Tuesdays visit showed a little raspiness in his airway, but it became worse overnight. They concluded he wasn’t able to undergo the CT but we did an x ray instead which showed pnemonia in 3 of his 5 chambers of the lungs. He was breathing pretty calmly for that a large of area.

We should be in the hospital until Friday, they hope to try to do the CT on Friday to further detect the extent of the infection.

I will keep you posted!!!!! He is in good spirits, just tired and ansy to be on the floor!

My present was already given to me on July 11, 2008. A second chance for Hayden to live a long, normal life. Thank you UW Children’s Hospital for that wonderful gift! You really think twice about material things when you face medical issues like this.

Hayden is spending these warm days with Grandma JoAnne and Cassie (chihuahua) at our home. She has come to help out with Hayden until Wednesday! Today it is 70 degrees out so they have probably been on 2 walks already today. More to come this afternoon. Hayden just sits back and looks around with his little mask on. He loves it and it tires both Grandma and him out!

Hayden’s hair is also coming back nice and thick. It doesn’t appear to be real red, more darker, but that can change yet. He has facial hair too, but we won’t worry about that-that and the eyebrows will go away once the Cyclosporin goes away.

Hayden has some visitors this past weekend, Uncle Kyle and Aunt Katie stopped over to see Abby and Hayden. We can’t wait to be able to go to the zoo with Uncle Kyle and Aunt Katie once Hayden is better!

This week we didn’t have a clinic appointment, his levels came back normal last week except for the BUN, which was at 36, very high, so we continue with fluids at night and push liquids during the day. His T-cell count was climbing nicely which controls the immune system.

We are watching his teething again, he gets a stuffy nose, usually while he sleeps and then he wakes up cause he can’t breathe well. So once again I am up alot at night responding to his needs. Little noses vicks rub clears him up a bit plus an eyedropper of tylenol for the pain.

Rick will be solo in caring for the kids this Saturday to Sunday, while I enjoy a little get away with the St. Phillip girls to Galena, IL. where we will leave the children behind but probably talk about them the whole time. It will be lots of fun!

For Halloween Abby went as a princess witch and a princess (changed twice) while Hayden helped hand out candy at the door with Daddy. Hayden wore a black shirt with a skeleton and a little red heart on it. His Haloween socks lit up as he moved around too. We had the hospital gown, mask, stethiscope and blood pressure props on deck, but we didn’t need them this year as Hayden didn’t go out.

We haven’t received Hayden’s lab results back yet, but with what Dr. DeSantes concluded on Tuesday’s visit, he is looking great! We have once again decreased his cyclosporin to .7 twice a day. (5% decrease) and stopped his Raninadine (stomach antacid)  and decreased his Isradipine (blood pressure med) to 1ml twice a day. Less meds for him to take. We will still continue with his antibiotics for flungal infections and viruses, and his inhalers to keep those lungs clear and junk free.
 We continue to give him fluids at night to keep his kidneys happy, again his BUN is at 36, way too high. Once the Cyclosporin is stopped then the fluids can stop and I can start to sleep through the night again.

This past week Grandma Sue was in the hospital for blood clots in her lungs, she is doing well and expects to come home this week yet, we miss her and truly realize how lucky we are to have her around during the week to watch Hayden.

Hayden has stopped signing all together now. This is frustrating because all we hear is whining. He looks at me with a blank look each time I show him the sign. I can’t tell if he has just forgot them or if he is just being stubborn.

BUN 35 (high again)
wht cells 7.4
Hemoglobin 9.9
ANC 5,000
Platelets 260k
Creotine .5 (up from last test, not bad though) 

I so wanted an update on Day 100 (Monday) but forgot to write. Tuesday’s appointment went well. Doctors see little sign of redness from the mild Graft vs Host disease. It is very mild but still has to be watched. Rick brought up the redness that we have been seeing on only his hands. They get very red at times but in isolated areas. We will just continue to watch that. We started to decrease his Cyclosporin med (steroid) 5%, so that calculated out to .7ml in the morning and .8ml in the evening. I really can’t wait for that med to be done with, he really has a temper on that.

We were excited to see the hickman lines working well when Bethany (BMT nurse) drew blood for labs. Thank goodness we didn’t have to wait around the hospital again to unclog his lines. We will get the results of his 100 day engraftment tests in a couple of days/weeks to show where we are with the engraftment. If you recall our last engraftment showed Hayden was 100% engrafted, but with 5% of his old cells still lingering. That is acceptable, but they do monitor through the first 6 months of post transplant.

The BUN level is high again (liver function), so instead of me giving him fluids every other day as we changed it to last week, we are back to every night. That means he wets through his pajamas every night and even less sleep for me. I usually wake up at 2am to change him and his bed while Rick holds him, but last night he woke me up at 12 just soaked and screaming. You would think he is in pain the way he cries! He is just mad he is awake and not sleeping I guess. So I will try some overnight diapers for him to see if they absorb more. He still only receives 250ml of fluid, so it isn’t alot.

So this week, our million dollar baby’s milestones are bouncing on his Fisher Price jumping Zebra, he sits on it and it bounces up and down as he moves his legs. Thank you Karis for donating that fun toy to Hayden, he loves it. Now we inherited an even bigger horse that rocks and jumps. My parents’ neighbors, Tammy and George passed onto our kids their flexible rocking/spring horse (Nicki) so last night the kids were having a great time riding their horses! Thank goodness for indoor toys! Thank you George and Tammy for the horse, Abby loves it!

Other milestones Hayden has been working on are standing and playing at the same time. He plays at the play kitchen with pots and pans, opens and closes the doors, puts things in and out. It is just so cute to watch him. We are still working on his clinginess, I think that will come with age too.

This weekend we have two HUGE pumpkins to carve and a couple of small ones too. As long as we scrub down the pumpkins we can have them in the house for him to touch. One pumpkin is as big as Hayden is!
Abby will be going trick or treating again this year and Hayden is stay back at home with one of us. Abby plans to wear a black hoop dress borrowed from her second cousin Zoe (thank you) which fits perfectly! I think it is a princess or witch!

 BUN 19 (good, could be lower though)
Wht cells 7.9
Hemoglobin 10.4
Platelets  234k!!!!!! ( I am sooo jealous, I’m sitting at 75k)
Neutrophyl 5,000+
Liver enzymes are looking good!

Clinic day update. Usually we are scheduled to be seen at 1pm,  we were seen at 2:30 thanks to Dr. DeSantes who noticed we were not on the schedule at all for our BMT clinic app. We were told 1pm the last appt so I was planning to be there at that time. Nurse Peter called our home in the morning to set up an appointment, I was confused telling him we are to be seen at 1pm. There wasn’t anything scheduled for Hayden. UGH
Wouldn’t be a huge deal except we hold his Cyclosporin med that day so we can take blood labs for a weekly reading. That is the important steroid that controls GVH disease. We have to be within a troff period for the test to be precise.
It wasn’t until 6pm that we finally got labs drawn. As it happened twice before, Hayden’s hickman tubing formed blood clots inside so it worked just fine to flush his lines, but once we tried to extract blood, the lines were clogged. The nurse explained it as a flap that forms, it flows one way but seals up when you change directions. We were sent back down to our wonderful friends in Day Treatment. Denise filled the lines with a larger dose of tpn to dissolve the blood form in the line. The draw worked and we were out of there in minutes!

All numbers are looking good for Hayden, we are still working to iron out that cyclosporin level. They want us to increase from .7ml to .8ml which Rick and I don’t agree with. The count was way out of the troff area, so it technically is off. Not a huge change, so we will see what next weeks level brings.

His blood pressure is finally going down, Liz held his noon dose of Isradipine with a reading of 100/75 which is on target for him right now. He still continues to look hairy. Those brows are dark and hopefully won’t fill in, even so, he still will be so handsome!

Oh, and the most important thing going on in his life, he is teething again. Those eye teeth (fangs) are coming in just in time for Halloween! It is so cute but you can tell he is feeling them! He is such a trooper with the pain!

KB