Today Hayden’s platelets are down to 23k again. We just got that last transfusion on Monday. Now we face the issue of his body not responding from the transfusion which is scarey. Dr. Delgado feels the faster this tranplant can happen the better since we are starting to face these hurdles. His body needs to be able to retain platelets while the chemo is happening since his body won’t be producing platelets at that time.

Dad brings Hayden today to Day Treatment at 1pm today.  I was suppose to go to a Brewer Event today for work, but I will stay behind at work and pick up Abby from daycare later on today. The Brewer tailgate event might be cancelled anyways due to the storms coming in today.

We leave for Fairview Children’s Hospital on Wednesday since our appointment is first thing Thursday morning next week. Right now we are scheduled to get a transfusion on Wednesday to hold us over until we get back on Sat. Let see if this will work in our favor. It he still has a high cound on Wed. we will have to wait to transfuse him in which we just pray that all goes well those days we are gone. UGH!

We have decided to take Hayden out of Daycare until Sept. 3 mth old Mason will take Hayden’s spot until Sept. when Mason goes to their other son’s daycare. It really works out for both families. Hayden will miss out on the stimulation from the other children and Marci, but his health is most important at this point. We will switch off having Grandma and myself watch him during the week with help from a few others provided that they are healthy before and during their day with him. This is more scheduling on my part but you do what you have to in order to keep Hayden healthy until transplant!

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Hayden had a rough night last night. He was up for about 2 hours total, I lost track after the 7th or 8th trip into his room. I fed him at 3am and usually he falls back asleep right after the bottle, not this time. He whined for about another hour or so. He had tylenol and Orajel in him already so I honestly don’t know what the problem was. I honestly think he has pain after the transfusion, this isn’t the first time he has been so unsettled. I wish I can just take it all away from him.

Abby went back to Marci’s today, which she was excited about. And Hayden remains in Grandma’s care at home. We have an opportunity to bow out of daycare until September of this year. It hasn’t been decided on yet, but my friend’s sister-in-law has a three month old she needs daycare for until Sept. They would take Hayden’s spot temporarily. I think it is God’s way of guiding Hayden through and keeping him healthy until the BMT day.

 PS. I can’t call anyone on my cell, I am way way over on my minutes this month.

kb

Today was another crazy day. One mom, two child in need of medical help. Abby went to bed last night with a fever of 101, I gave her tylenol and she did fine through the night. This morning she woke up with a fever of 100.2, even two hours after she was up she still was registering 100 for a temp. More tylenol at 10:30am for her.

Meanwhile I drew Hayden’s blood at 9ish and brought it to the lab. At 11 am Dr. Delgado called to tell us that his count was below 10k!!!! Now I am at home with Abby with a temp and I also have to bring Hayden into day treatment. I called Mira from across the street to stay with Abby just until Grandma could get over to our house to watch Abby. This was the second time today that I called our wonderful neighbor. She watched the kids as I ran the blood sample to the lab. It is sure nice not to have to pack up the kids for a ten minute errand.

Anyways, we got to day treatment at 1pm and refilled Hayden with platelets (2 random platelet donors). I guess it states that on the platelet package.  All went well with the transfusion. Looking back, last night Hayden was very unsettled and today he was very cranky around the time the platelets are low. The nurses and I wonder if he can feel pain or some discomfort that he gets so unsettled.

I got back from platelets and turned around to bring Abby to see Dr. Taylor for her congestion and fever. We decided to treat her to prevent Hadyen from getting sick from her. Who knows what will happen tomorrow.

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Hayden has been having a great week (knock on wood). His platelet count is at 64k as of today and his ears seem better. I will have him checked out again next week once he has finished the Azithromiocin, just to make sure the infection is gone. And now that I finally know the correct spelling for croup, I won’t have to spell it anymore, his throat is clear.

Abby, Hayden and Corrina have been having a great time at our house this week with Grandma Sue and Grandma JoAnne while Marci (our wonderful daycare giver) is on vacation in Mexico. Now that they tired out the Grandma’s, the kids can’t wait to go to Marci’s again on Monday.

Hayden will continue to stay with Grandma Sue on the days she doesn’t work to keep his exposure to viruses to a minimum.

Our next platelet transfusion is scheduled for Monday afternoon, but the doctor thinks we won’t need it, not until Wednesday! Yah!!! It is easier to cancel an app. than to get scheduled in when daytreatment is full.

Daddy and Hayden will have a “boys” day on Saturday while Abby and I go to a wedding shower in Kaukauna. Events like these are when I really miss being able to bring him too. I want him to experience the world and learn about fun things like Abby did at his age.  I just hope his social skills aren’t affected with him not able to be in public. Sadly, he is like the boy in the bubble.

Through all these hospital visits, Hayden is still conquering his milestones. He is sitting up with the help of the boppy, holding his bottle, rolling over, spinning around as he is laying down, and loving baby food. I have started sign language on him like I did with Abby and he is responding well to my signs. When I say “milk” and sign it, I see his fingers moving in and out like mine!
His favorite treat is the teething cookies and frozen bananas and veg. juice cubes which I put in a nifty little holder that he just sucks on. The cubes or food  stays in the netting so he doesn’t choke on the food. What will they think of next?
His favorite toy is anything with noise and some colorful boxes that fit inside each other, he puts toys inside them and bangs on them to make noise.
Hayden is in 12 mth clothing already at 81/2 months old. Thanks to wonderful co-workers and friends we have a great supply of clothing for 12-24mths and even past the winter-thank  you. This saves us a lot of time and money not having to purchase them!

Well, we got through the weekend. I thought I wouldn’t see the light for awhile there. After giving three different medications to Hayden all weekend and Abby’s first time on Antibiotics for her enlarged tonsils, I thought the pink stuff would never go away. 

Hayden is almost done with his Azithromyocin for his ears (5 day dose) and the Tylenol doses have decreased which means his pain from his ear went away. I still can’t believe I didn’t think of the ear thing earlier than Friday evening. Oh well, we got it taken care of!

Also, notice it is April 15, tax deadline day-”my husband returns to our evening life day” soon!  Yah!!!! Abby is going to be so excited to have her Daddy back! That will end her time “waiting” for Mommy’s attention, when mom is busy with Hayden’s med. needs.

Want even better news? We found out that the BLOODCORD is a match of 8/8.  This is a great match and requires no waiting for a donor to come in and give their marrow AND a bloodcord has immature antibodies which help reduce Graft vs. Host in Hayden’s body. GVH is when the body attacks the new stemcells.

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After dealing with a what I thought was teething all of Friday, It finally dawned on me to check his ears. As I have always done with Abby, I pressed on them slightly and sure enough, he really reacted. Okay, 7pm and alone with the kids, I have to go to the ER with Hayden. I called a couple people before I called the all-dependable aunt Lori and Uncle Dan. They came over and watched a movie with Abby as I ran to St. Mary’s Hospital.

I cringed knowing that we would be sitting in the waiting room with “sick” people so I asked to seat away from the people. Thank goodness, cause I think there was a little baby in there with croup, don’t want to go through that again.

So his right ear is infected and the other one is also looking “raw” as the NP stated. We left the hospital at 10pm with a prescription for Azithromicyn antibiotic. I called the Hemo on call to make sure the two antibiotics could be given together. Remember he is on TMP Salfite on the weekends to boost the immune system. Dr. Delgado is excellent in updating all Hemo on call doctors about Hayden in case we need to come into UW over the weekend. This makes our world so much easier-we are thankful for him!

As I was driving home, right down town by the police department, I noticed my van wasn’t driving right. I knew instantly-flat tire! Sure enough, one of my expensive snow tires was flat. UGH
Luckily I was on the phone with Rick, so he came down to change it since I had Hayden in there with me. After he changed it my battery decided to die too. Do we ever get a break?
Rick and Dan went back down town Madison to jump it at midnight.

Hayden was given Tylenol during the night and Sat. morning he started his antibiotics for the ear infection. He still was pretty cranky today, if I would leave the room, he would cry. So once again, not alot of house work got done.

Two more days until tax season is over! Thank GOSH!

Abby really needs to play “Playhouse Disney” now, so write more later! Patience are very hard to control!

On May 1, we will go to MN to meet with Dr. Scott Baker for a consultation at Fairview Children’s Hospital. We are really hoping that the protocal will be similar to UW Madison  Hospital’s but we are also prepared to go to MN if that is the best for Hayden.

Since we will be there, we will incorporate a little family fun to celebrate the end of tax season! I am looking at a few fun activites like the zoo, Mall of America (never been there) and maybe a brewery for Daddy. I will be happy visiting any of those places!

Platelet transfusion went well on Tuesday. We were done in record time since we only received platelets and not the IVIG treatment. Usually Hayden sleeps for awhile after the Benedryl is given, but he fought it yesterday. No biggy, we just played the whole time.
I will draw blood on Friday for another count check. Hopefully he will have more platelets than last time.

Tuesday morning we will go again for platelets. He is at 28k for platletes. This time it should be the regular 3 hours with no hospital stay. Hayden is finally sounding better. He continues to cough and spit up some flem at times, but is doing a lot better. It seems as though his teeth are bothering him the most now.

I drew blood out of his line this morning. It went well until I realized that I was running low on hemprin, which I flush his line with after the saline. I did find enough to get me through today until Chartwell sent some over. All better!