We are finally home. Hayden was released late Friday afternoon after they gave him a large dose of prednisoLONE through his IV. Thank you Dr. Reeder at Dean for suggesting that! Friday started out good, he was breathing well, even slept through the night, waking up only for his nuk. By 5:30 he was done sleeping so I fed him, and made him go back to bed. He played for a bit and then fell back asleep for an hour or so.

Saturday was different. He was so ansy, almost hyper from the prednisone. My parents were down to bring Abby back home so I had a little help with him most of the day. Rick found that the “Johny Jumper” really lets him exert the energy the prednisone (steroids) give him.

Last night was just a blur, Rick and I were up with him most of the night. He started coughing, which is good for crupe, but that made him wake up every couple minutes. Once he even coughed up a large amount of flem. We did end up calling UW hemotoligist to get advise. With the cool mist vaporizer and him sitting upright in his carrier we all got through the night.

Uncle Dan and Aunt Lori brought Abby to church this morning while Rick went back to work to do more taxes. The end of tax season is near!!!!!! I can’t wait to have him around more. Either can Abby.

Hayden is napping now but sounds like a little pug, or chihuahua with his breathing. (sorry Tugboat and Cassie). I will continue to monitor him to make sure his fever doesn’t go above 100. Then we go in. He has decreased his eating, but not enough to worry yet. After all he is 20lbs at almost 8 months old.

I now know how to draw Hayden’s blood for his labs through his hickman. I passed my exam with the nurse before we left UW Friday. It is a bit scarey doing this, but so is the daily flushes and dressing changes. Just as long as I keep everything sterile, we will be in good shape.

I am going to see if Gma can stay with Hayden again on Monday since he isn’t out of the woods. Abby can go to daycare, since I know she misses it. This week we will start our interviews with MN hospital Fairview to see what their protocol is with WAS transplants. Both Rick and I have been reading throught the material for the transplants, but will need to consult their transplant doctor as well.

It is a coin toss right now to whether we stay or go home. We are at Day12 of crupe. I met with the doctors and nurses as they discussed Hayden’s condition today. He is at 50k for platelets today. They will bring this up to the autoimmune doctor the option of trying another prednisoLONE treatment for him. He woke up sounding really good, as he naps this morning, he sounds like he is working again. Last neb was 7:25 am, I will call for another neb once he wakes up.

All bathed and waiting for the neb treatment. The little 2 oz bottles of Alimentum that the hospital supplies are perfect for Hayden to hold. He thinks it is quite neat to feed himself.

Dr. Diamond has just been in to tell me the game plan. We are going to give one large dose of prednisoLONE via IV to Hayden today which will last about 5 days. Doctors are hoping this will get him over that hump we keep shooting for. Then we won’t need nebulizer treatments.

In addition to Hayden’s treatment today, I finally feel comfortable to learn how to draw a blood lab out of his hickman. The nurse will teach me this today before we go home. YES, I said go home! This will help in the days Home Health can’t be at our home by 8 or 9 am so we can get the blood tested in lab to see whether we are to go to day treatment for an infusion. Those beds fill up fast and nurses need to be called in day treatment so we really have to have some notice, plus we need to know what our day will consists of too.

Gotta go work on “Chester” again!

kb

Day 2 at the hospital, day 11 for crupe. We really haven’t seen a change in his breathing. Doctors are wondering if his crupe has even peaked yet. Last night we nebulized him at 12, when vitals were taken, which didn’t make a difference. He stayed up for another 2+ hours until I finally asked for some tylenol for his teeth and we nebulized him again. This time both things helped since he was pulling at his face which he does when his teeth bother him and his breathing is hard.

Dr. Diamond just came in and would like to watch him for another night. Dr. Delgado agreed. We will continue with nebulizer treatments and hope this will end soon.

Rick will be here soon, so I look forward to going home, showering and getting clean clothes for both Hayden and me for tonight and tomorrow. Abby is very busy in Green Bay with gma and gpa playing with Bailey, the neighboor girl.

I almost forgot the best news of all for this week, Hayden has rolled over in the hospital bed in front of Rick, Abby and myself! Another milestone completed! We are soo proud of you little man!

Today started out as a normal day treatment day with IVIG treatment and platelet transfusion. We added a Epi-nebulizer into the mix too to help with his breathing from the crupe. After much monitoring, Dr. Delgado decided that admitting him would be the best to get over this hump of the virus. This way we can give the epi treatment to him every couple of hours. He is off the prednisoLONE. We don’t want his thyroid thinking that it doesn’t have to produce steroids anymore.

Abby did come with us to day treatment today, she really did well, considering she has been acting out when we have to deal with any of Hayden’s issues like nightly flushes, dressing changes, or weekly blood draws. I just remind myself of what Super Nanny would do, or I call my sister who is a school psych. 

Rick picked up Abby this evening and met my parents at our house. They are going to take her back to Green Bay for a few days until the weekend. She is soo excited to spend time with them and get spoiled!

Hayden had his dressing changed for his tubing, a bottle and an epi-neb and is already sleeping by 6:30pm. Getting platelets really tired him out. Alas! alone time for me and rest for Hayden!

until tomorrow morning,
kb

I bring Hayden in tomorrow morning for more platelets and IVIG treatment. I told Abby she could come with us but her cold isn’t gone yet, so I will have to explain to her once again the rules of day treatment; no sick people allowed to protect the other patients.

Now to add to the equation, one child may have pink eye at daycare, so I have to keep Abby home as well, so she doesn’t get it and then give it to Hayden. She is more than happy to take time off of Mother Goose Preschool to bake with Gma and play barbies all day! After all, we are setting up for a big wedding to happen with the barbies soon, only if Hayden will stop trying to put the barbies in his mouth!

Two more weeks of tax season for Rick, then we really have to buckle down and make a decision on the hospital for the BMT. Each year after tax season, Rick and I have taken turns planning a surprise get-a-way to celebrate Daddy being back in our lives evenings and weekends. This year we might have to travel to MN to check out the BMT program at Fairview, we will have to just kill two birds with one stone and make it fun! I am thinking a waterpark, but then I remember the germs that we will pick up…I will keep you posted on our decision!

kb