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.