Will It Never End!

I am a survivor . . . barely. I have already spent two weeks in the hospital, had surgery, and taken myriad amounts of antimicrobials. Then I finally come home and begin recuperating when what happens? I spend a sleepless night with Mommy, having horrible stomach cramps and wishing upon every star in the sky it would just end. Then the next day I had incredibly high fevers (104.9 to be exact) and all I wanted was for the end to come, and come now. My parents of course immediately freaked out, and I mean freaked out. They called our pediatrician (I think she is going to block our phone number soon) and got me into the weekend clinic pronto. My poor doctor just looked at me and wondered if I was going to experience all 5 plagues this winter. So once again we sat there as the adults puzzled and I tried to use my ESP powers to let them all know my insides wanted to be on my outside. They finally decided to do some tests and low and behold what did they find. . .


I now have Rotovirus. (Picture below for all those science geeks out there).

So now we are going to research if the Department of Homeland Security is using our home as a test facility for biological warfare. I don't know about you, but there have been a lot of germies attacking our family this year, and I am truly beginning to wonder.

Germs . . . Be Gone!!!

Since Michelle is home but still recouping and Daddy and Mommy are trying to sterilize our home (no more sicknesses please), I will take my turn at posting. Now as Mommy has told everyone, we have had our fair share of germies this winter. Germs stink!!! Not only do they make you sick, but you end up having to take lots and lots and lots of medicine. Well, since we have tried all the "big guns" this winter, the medical community has decided that "big guns" no longer will cut it. They pulled out the "bazooka."

And you thought you had taken a horse pill?

How do you take a pill that is the size of your forearm, one bite at a time. Not quite sure how many spoons full of sugar this one will need.
No, this thing really is stuck. Please can't we try mixing it in applesauce, or pudding, or anything.

Well here is to STOP being sick and START getting better. Oh, and does anyone know if Hazmat does residential clean-ups. We need serious help!

(Disclaimer: That was not a real pill in the pictures, but a foam hand squishy that Daddy had brought home from work. And these pictures were actually taken before Michelle got really sick this month, can't wait for Michelle to be that energetic again.)

Ruby Slippers and All

After being prepared by several of our doctors for a long recovery because of pain, bleeding, and difficulty breathing, I woke up happy and ready to go in and help her transfer out of the Pediatric Intensive Care Unit to the Pediatric floor where I assumed we spend the next few weeks. Then I got a message on my phone from Tory, "Dr. --- just came in, says Michelle can go home sometime this afternoon, or tomorrow. Will discuss with Dr. --- later this am."

WHAT?!?!?

I instantly had to call and find out what was going on.

Michelle was doing soooooo much better than we had expected and was not showing any signs of bleeding problems, her breathing was actually easier, and her pain was being well controlled with the medicine they could give through her G-tube. She didn't even need her IV pain medication.

WOW!!!

Then, Tory let me know that they actually were ready to start the proces to go home NOW.

WHAT?!?!?!

So, I forfeitted my shower, dressed in a hurry, got Ryker and Grandma up so that we could rush in to the hospital for the lengthy discharge process I was anticipating. I walked in and they had me sign the the paperwork, we disconnected Michelle from her IVs and monitors got her dressed and that was that. We were home and sitting on our couch before noon.

Sigh . . .
This little girl was more than excited to break free from this joint. (Tory and I were too.)

Michelle giving everyone a wave good bye and telling them thank you for all their hard work. And this is what I saw when we pulled into our driveway and turned around to see how she was doing. She was doing great!!! Now we all are doing great. After two emotional, crazy, and just plain wild weeks we are home. Just where our happy little family of four likes to be.

Surgery Day (Number 11)

Today was the day. Michelle had Surgery Day Number 11. I am honestly starting to believe she doesn't want to miss out on anything. Tonsillectomy and all. As I said earlier on, she had already had scheduled a bronchoscopy to look at how floppy her airway is and if there was extra tissue above the trach tube that was preventing her from using her Passey Muir Valve. Since she has been sick, all her doctors, that have been working so hard to figure out why we have had such a hard winter, decided to look at her tonsils and adnoids to see if they are big and causing her to have a sore throat and difficulty swallowing even her own saliva. Well the tonsils were huge and infected (even after all the rounds of antibiotics we have been through these last two weeks) so they are gone. The adnoids weren't as big, but her doctor told us that the opening in the back of her nose is small (not really surprised since her nose is so small) so the adnoids are history too. When they look down her trachea, right above her trachea was some extra tissue, not scar tissue like they had expected, just tissue. But since it might be causing some obstruction, they lasered it away. And last of all they looked at how floppy her airway is, and it is floppy. But they feel like it will get better as she recovers. Definitely a crazy day, but Tory and I feel feel like this will help Michelle not only get over all these cases of pneumonia, but also eventually help get that trach tube out.
Just hanging with Daddy and being super silly. Super Silly is what Daddy does best.

"What? They said I am not supposed to eat anything after 4:00am? Chocolate isn't anything, it is everything."

Taking one last look at her room on the pediatric floor before surgery.

Sitting down with Daddy and going through their "getting ready for launch" check off list. Michelle, I think you know how to run that Ventilator better than just about anyone.

Giving one last toothy grin to show Daddy and I that if she can be that brave then so can we. To be honest, you are far more brave than Daddy and I combined.

And now in the spot I think we are going to stay for a while. This poor little girl now has surgical procedure numbers 14, 15, and 16 under her belt. We are expecting the next two weeks to be very tough and to be dealing with a lot of pain, but we honestly feel that if we this will be thing that will prevent her from stop having to keep getting sick, then it will be worth it. We love you Michelle and can't wait to a family at home again, your little buddy misses you so much and keeps sending you loves on the phone.

The Great Escape

If you were raised in a family similar to mine, one in which you can quote Cary Grant, Jimmy Stewart, Katherine Hepburn, or Maureen O'Hara, you will understand why I have been thinking Steve McQueen like thoughts.

Michelle and I of having been making plans during our unending days. We have been stowing away the spoons, forks, and knives people have brought to us. We have done the math to figure out which way and the distance we would need to dig so that we were out of the search light's sweep. We discovered just the right tile to pull up in the shower, and had devised a way to dispose of the dirt. We were set to go when we realized one minor problem . . .

We are on the fourth floor. . .

Plans were revised. . .

We then we made friends with one of the guards who talked to the man in charge and it was agreed on by all, that due to Michelle's good behavior and astonishing power of cuteness, she could leave this room for a little expedition with our family.
So happy making our plans for escape.

Preparing to go out the door for our first endeavor outside this room (that is the first one Michelle was not medicated for because of a test). I honestly do not know who was the happiest in our little entourage. We were all so excited to break free.

Now Ryker has come to enjoy having wagon rides himself on his visits to see Michelle. So he took on the duty of Brother and took Michelle on her first hospital wagon ride.

This look of pure joy brought tears to my eyes. The most amazing thing was that her smile caused so many others who had worried and saddened faces to change and give a little smile back.

Of course, we had to stop and demonstrate the fine technique of drinking out of a fountain. This has become a favorite pitstop to Michelle's room.

Then Ryker had to show Michelle his very favorite spot to visit when he comes to see her. "Look Michelle, ginormous fish!"

"Why yes Ryker, these fish are absolutely collosal!"

And in the end Ryker jumped in the wagon with her. And life was good.

Unfortunately though, the ride came to an end and Ryker had to go home for his nap and Michelle had to come back to this room for food and medications and treatments. But for almost an hour we felt free and enjoyed getting to see more than just these same four walls.

Oh Happy Day!!!

First off, let me say sleep makes a huge difference. Two nights ago, Tory and I switched places. So the first night I went home and got 5 hours of sleep. It was fabulous. Then last night I went home and slept 8 solid hours. Wow! That is all I have to say.

Yesterday little Michelle's eyes got their sparkle back. Michelle had started feeling better the day before, but was holding a gargutuan grudge towards everyone, Mommy and Daddy included. Yesterday we were forgiven and she decided that she would finally give us a smile. We ended up having so much fun coloring, stamping cards, and playing games that I just didn't have time to post. Here is the smile she gave me as soon as she woke. I only wonder what she was thinking. (Most likely something to do with, "Next time you fall asleep, I will finally perfect my Wet Willy skills.")

Tory bought Michelle this book back when I was pregnant with her and in the hospital in preterm labor. Well, this book truly decribes how we feel right now. Like we are locked up in a zoo.

This is the best picture I could get of the new type of trach tube Michelle has in. That big yellow balloon thing on the end is the cuff. They deflate it when the put it in and take out. But since it has foam inside the balloon, it does not get as narrow as the tube itself and that is why I would rather forget watching them put it in the first time, and also why they don't want us to go home just yet.Enjoying some color time.

Her amazing work of art.

Finding out that some of these medical supplies can help out in a game of peek-a-boo.

The one eyed bandit.

Well Hello Miss Happy, definitely feeling better.

Uhm . . . Mommy not so cute, mostly just scarey.

And then we discovered this amazing remote for the bed. Definitely hours of fun controlling the bed, lights, TV, and randomly calling the nurse.
And the smile she still had at the end of the day. We are just so happy to see some sparkle back. Now we just have to sit back and wait for Monday and surgery.

Now I keep talking about how much I miss our little buddy. So Grandma took some pictures of him and his adventures.

He recently found his cowboy boots and rocking horse. I just haven't figured one thing out. How did he know that he should wear his cowboy boots when riding his horse?

Yep, he is just that fast.

And sitting in the chair letting Grandma know who the boss really is. Well little man, I can't wait for all of us to be home together having lots of fun adventures.

Hmmm . . . Some of My thoughts

Please do not think I am a negative person and I promise I really am trying to look on the bright side of things. But right now there are a lot of things that really stink. And right now I am using this blog as a journal to record my thoughts. Something that would have been helpful right after Michelle was born.

Last night they put in the cuffed trach, an experience I would be more than happy to forget. But it is already helping her breathe so much better. They have actually turned down her ventilator pressures quite a bit and I am obviously extremely happy for such drastic signs of improvement. Hopefully she can heal now so they can continue with surgery on Monday. But I am worried that by choosing this path for better healing, we have chosen the path that will lead to a far longer hospital stay. Of course healing is the most important thing. But I really like my home better than this little tiny hospital room. But we have made our choice and now we are gearing up. Changing to a cuffed trach means a lot of adjustment on Michelle's part and a lot of training and preparation on our part as her parents.

Sigh. . .

So here I sit, next to my quietly resting princess, while missing my little buddy who is at home, hoping that the next few days, weeks, months, years will finally lead to the moments that Tory and I have been dreaming about for so long.

My Michelle

Here I am, sitting in a very comfy cozy hospital bed next to my finally resting little girl. It has been one week since we came to the hospital, and it has definitely been an up and down emotional week.

The last two nights Tory and I have somewhat traded spots since he had to go back to work. I have been spending the night here meaning 24 hour hospital life with our little princess, while my mom stays at home with Ryker. Sounds crazy I am sure. But to be totally honest, every time someone offers me relief from the hospital, the idea makes me break down to tears. But I miss my little Buddy too. I call my mom everyday to check up on him and hear his little voice in the background and hear about all his adventures the last few days and start bawling again. I am a baby and I know it. But it is because I love our babies both so much. And as much as I hate this hospital life and being separated, I know we are doing the right thing for Michelle. Progress has been slow, and difficult to understand why things are and are not working. But we are making progress.

For those who want to know all the details, right now the first step is to put in a "cuffed trach." It is a special tube that has a small foam cuff around the outside of it to create a seal in her trachea. Right now the most popular theory is that Michelle has been having chronic tonsillitis this winter (which fits with the get sick, get better, get sick, get better pattern we have been going through this winter, and also some of the difficulty with swallowing in her therapy) and that since her throat has been bothering her she has not been swallowing well and her saliva has been going down her trachea and into her lungs causing the pneumonias. They feel if they can stop the saliva from going down and causing the pneumonias she can get better. After that we are looking at a tonsillectomy that right now is scheduled for Monday, Feb. 22. We are lucky because our Ears Nose and Throat doctor already had us on her schedule for Monday to do a bronchoscopy (a special test where they put Michelle to sleep and then look down her airway to see how floppy her airway is or if there is any scar tissue forming) so they just added the tonsillectomy to the procedure list. But this all depends on her getting well enough to tolerate surgery. Pretty much we seem to go from one moment to the next trying to help Michelle get better.

But as I have already admitted, I can't live without my camera. And I am definitely turning into one of those crazy paparazzi type mommas, but that is just how I roll.

This is the effect versed has on one sick little girl. Nice to see some goofiness, wish it was not medication induced.

Having to go downstairs for a CT of her neck. Making sure we wouldn't need to change surgery days to sooner than later.

Such a big bed and big production for such a tiny little princess.

Now this my friends is where you all know for sure that I have turned crazy paparazzi momma. Here they are using this monstrous CSI like tool to find a vein for an IV.

If any of you out there as are crazy as my family and love the TV show "Monk" you will understand why we dubbed this machine the "Spectrascope."

Our view to the outside world.

And a bunch of the medications Michelle is on. And that is just one round, not the whole days worth.

And one very tired little girl who just wants to get better.

P.S. I can't wait to be home taking pictures of our little buddy and chronicling the new adventures he is currently having, and most of all I can't wait to take pictures of both little rascals together doing what rascals like to do best.

Frustration

Bye bye improvements. Michelle lost her IV last night so all of her medications (antibiotics and steroids) were changed to go through her G-tube. I don't think, well, I pretty much know, they are not working as well. So yesterday's improvements are literally a thing of the past. So I am extremely frustrated. I could post a list of all the things I am frustrated with, but I think it would be very very very very long and someday I might regret putting in writing some of those things. But I will say that tomorrow is unwritten yet so hopefully we can improve again.

P.S. Thank you to everyone who has been thinking of us and praying for our daughter. We feel it and appreciate it greatly. And Tory and I celebrated our 7th anniversary today, and it is a good thing that we have such wonderful family and friends who will not let us just eat leftovers for dinner.

Some Improvement

So Michelle made improvement today. HOORAY HOORAY HOORAY!!! I will definitely not say that she is "better", but right now we will take improvement. For those of you who want to know the gritty details, she finally improved after Tory and our Pediatrician decided to try giving Michelle IV steroids (no, it will not make her muscles bigger, but they will decrease the inflammation/swelling in her airway). She got a loading dose, meaning twice the normal dose to get an appropriate blood level quick and a few hours later she finally started to calm down and relax for the first time since Sunday. She took a two hour nap where here heart rate finally came down below 100 and her breathing came down to around 30 breaths per minute. HOORAY! She has not had a fever since early this morning, and she finally realized that she had flowers with a butterfly in her room, a new nightgown on, and a big girl bed just for her. It was so nice to finally see that little sparkle in her eyes again.

So, since you know that I can't detach myself from my camera, here are some pictures of "the happenings."
Our little ray of sunshine!

You just can't keep crying when someone gives you a smile like that.

Cheese puffs for breakfast, yummy!

The sign that has greated me every morning for the last few days. This sign and I have seen a lot of each other the last few years.

The elevator number I have come to know all too well.

Another sign that greets me each day.

Our Marvelous Michelle. Some local "Misses" came with their tiaras and fancy dresses and brought little tiaras and gift bags to the children in the hospital.

It is so nice to finally see her be just a little bit silly.

And some beautiful flowers she has gotten. So many people have brought us so many wonderful things, THANK YOU!

And last of all, another picture of Michelle. Let's keep improving!