Hayden's Hope

Thursday, June 23, 2011

Have You Ever Bribed Your Child?

Have you ever bribed your child? I mean seriously, what parent hasnt and dont' lie to me! OK I know it is not at the top of the list for "Better Parenting" and teachers would definately not approve. So if you are a teacher, just close your browser now because you are NOT going to like the rest of this post :)

I currently owe Hayden $300 dollars. You may ask yourself what in the world did he do to get that kind of cash? I personally am wondering if I've lost my marbles too and am thinking I might try to see if he'll take an IOU or a credit card to cover "charges incurred".

It all started with this little purple valve called a Passy-Muir valve which enables Hayden to talk with his trach. So you may remember that over these 3-1/2 months, Hayden has not been able to talk because he was nasally intibated. As a result I am now proficcient in reading lips, a skill that required a high amount of concentration when your child is talking 100 words a minute!!!

But now that Hayden has a trach, he can talk if we put on the Passy Muir valve. Hayden has decided that it makes it harder to breath with the valve on and is stubbornly refusing to ues it. Strangely the Docs did an evaluation on him while he had the Passy Miur valve on to look at O2 intake and it did make his O2 intake a tinsy, tin,y minutely, bit, slighly lower. So I said to Hayden, "Really? Dude you have got to wear this thing Mommy's eyes are really worn out from trying to read your lips." and what do you think he said...."Nope!"

So being the desperate mother that I was, I told Hayden that I would give him $1 for every minute that he wore the Passy-Muir valve. And do you know that kid wore the valve for 5 hours. No problem. Playing Wii, computer, doing physical therapy, the whole shabang. Yes 5 hours is 300 minutes.

When Hayden woke up the next day and wanted to put on the valve, I warned him that my deal with him was a one time only gig. He just smiled his cute impish smile and said I know....and then asked when I was going to pay him the $300. Ha! Kids!

Friday, June 17, 2011

New Beginnings

With milestones come new beginnings and new chapters in our children's lives. The pang of nostalgia is coupled with the pride of a parent as Hayden participated in Graduation from 5 th grade last week. Its an amazing milestone, especially for Hayden considering what he has been through these last three and a half months. The milestones also mean new beginnings, a new school, new friends, new adventures. Its hard to believe how quickly they grow up. I can remember when he was just born and mothers would come over to see the new born baby and remark "Enjoy this time. They grow up so quickly!". At the time I thought "What are you talking about?", but now I know exactly what they mean.

What is it about each of these new beginnngs in my children's lives that brings a tear to my eye. Their first breath, their first spoonful of food, their first step, their first word and each one of these milestones is such a precious moment for us as parents. Case in point, I told myself when Hayden's first day of kindergarten arrived I wouldn't cry. Of course, as the day was upon me and I watched him being led by his teacher into the classroom,sure enough I started crying, "My little baby is growing up!" Its the same feeling I get with each new beginning of my children's lives. It's not that I'm sad. It's that I can't believe how quickly these milestones come and how proud I am of Hayden and Elsa as I watch them embrace each new beginning.

I feel like I am reliving these precious moments as I watch Hayden once again say his first words off of the ventilator, take first bits of food and especially learn to walk again. Seriously, the pride of being a parent couldn't be more as I watch his determined face walking down the hallway.

I find myself giddy with excitement at the prospect of Hayden coming home and getting off the ventilator. I could be even more excited, but I can tell I am holding my emotions at bay a bit because I just dont want to be devastated if Hayden has a big set back. The "what if?" is always lingering in the back of my mind. But most of the time I push those thoughts aside, look to the future and savor each day watching the "old Hayden" return. A new beginning happens here every day for Hayden. Eating strawberries, going off the ventilator for 12 hours, walking across the room, talking again. Its wonderful.

To see one of his lastest accoplishments, click here.

Wednesday, June 8, 2011

Holy Cow!

Just the words "family meeting" create a pit in my stomach and my eyes automatically start to shoot darts directly at the doctor that is mentioning one of these horrid things. However this time was different and by far my favorite Family Meeting. We talked about setting goals for getting Hayden out of here. Yeah!! We decided that a great goal would be for Hayden to come home so that he is mobile, off the ventilator during the day and on the the ventilator during the night. I can't wait. And the million dollar question that I know you are all wondering is - When will this happen? We hope earliest end of June or possibly mid July. We have lots of "exercise" to do on his lungs and his legs but we strangely very motivated!

Today we celebrated. Hayden, his sister and cousins will be treated to a special private viewing on Kung Fu Panda 2. Conan from DreamWorks brought the movie and showed the kids his very cool job of being an animator. He drew some fabulous Kung Fu Panda sketches for the kids.  Very fun.
Conan from DreamWorks, Hayden, his cousins Zach & Anika,
and sister Elsa Lilli

Tomorrow, Hayden is looking forward to graduating from 5th grade. I can't even believe he is graduating from 5th grade let alone realizing he will probably be able to go to 6th grade, possibly without a ventilator. Official ceremonies will be held at Old Mill School where Hayden will participate via Face Time ( Thank you Steve Jobs and Bryan Van Vliet! ). Graduation party to be schedule upon Hayden's homecoming!

Hayden Practicing "Facetime" for Graduation.

And the Holy Cow part is that Hayden was off the ventilator for a total of 6 hours today!!!  Just awsome.  That boy totally inspires me and makes me so very proud!!

Sunday, June 5, 2011

Moving n' Shaking

Exciting things are happening in Room 8 at the UCSF PICU ward! Not sure which I find the most exciting but will start off...

First of all the CO2 monitor was uncerimoniously thrown out. (Picture me throwing it out the window...) Yeah!!! Not that I didn't like the "Iron Man" look, but the new one also didn't read accurately and the doctors decided that Hayden has been doing so well that we really don't need the CO2 monitor any more.

Hayden has been doing great at his drinking. We've had Coke, Diet Coke, Odwala Mango Tango, Jamba Juice. He has been allowed to drink 2 oz five times a day. Plan on moving up to some sort of pureed food i.e. applesauce.

On a personal note, I am getting closer to earning my degree as Nurse Ratched. I have officially learned how to suction Hayden, although I told Hayden he is NOT under any circumstances to wake me up from my beauty sleep for suctioning. In the middle of the night he can press the call button for the nurse. I also am now experienced in lowering and reinflating Hayden's cuff when he drinks. I feel so important :)

Tonight he lost a tooth. I got to pull it out. Those little buggers are harder to pull out that they look. This tooth will be donated to the FOP lab becuase baby teeth have stem cells in them. The FOP lab will use the stem cells in Hayden's tooth to do FOP research. I hear the tooth fairy pays triple when you're in the hospital.

The two best things that have happened this past week is
-One: the ventilator is now permenantly on a CPAP setting which means that it is basically just blowing oxygen in at a set volume. The volume has moved from 15 to 8 in the last week. So Hayden's lungs are really showing us what they are capable of doing.
-Two: the very, very best for last. Today Hayden was disconnected from the ventilator for 45 minutes AND he is still alive to talk about it! So utterly amazing. I started crying when John called to tell me about it. What they do is attach whats called a Trach Cuff to his Trach and it just provides 100% O2 with out any type of support, just like breathing outside. They called it breathing sprints. We are getting Hayden's lungs in shape to get the heck out of here!

Look Mom I'm off the Ventilator!!