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

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.