Sunday, December 23, 2007

The sound of music...

The day went on being scary, as not being able to actually be at Deedee’s side makes the waiting game quite long and unnerving. That has been a nightmare this week, intensive care is as impersonal as it can be... I guess it is a needful evil, sorts of speak...

Yesterday, the first visit had no news, which for us turns into good news… No news means more healing time for baby… Which is just what she needs… not more probing or tests.

As we went to the second visit of the day, the drama factor was enhanced. Just as we were to follow a nurse that went in to the ICU, I noticed Deedee was being handled by two nurses, and the one going in turned around really fast asking us to stay outside. That gave me a taste that something may be wrong, but we just sat in the floor and stayed calm for a while. Then the doctor goes in running into the ICU… Calmness faded as we got beyond scared… We KNEW they were handling Deedee, and something HAD gone wrong. An hour and a half passed… At 3:40 we were allowed to go in. Deedee looked a bit pale, but still looked at us with half-sedated eyes suddenly becoming wide with joy… The doctor was in, and she basically told us that we will get a lot of that waiting factor.

Deedee’s tubes get plugged with her saliva and other stuff, and they have to change the tubes when that happens as it prevents the ventilator from helping her breathing. Besides that, they took another X-ray, and one of her lungs looks much better, the other still has fluids. The three tubes stuck in her chest are doing a good job draining the liquids. They also started giving her a bit of formula, to prevent ulcers in her stomach… Not a-lot, but enough to make her crave for more. And they started putting nutrients and things to boost her immune system, so she keeps on being strong. All of this MUST be good.

So overall, in her delicate condition, she keeps on being stable… She keeps on wanting to stay with us… She keeps on wanting to be with mom and dad. The funny moment of that visit was that after the medical review the doctor asked us what was it that we brought with us that left Deedee calmed and sleepy as we went away… that the nurses had mentioned a musical box that we played and she seemed to like. We laughed at that. A musical box… Well, I guess I’ll have to wrap myself and put myself in a box… The look in her face as we told her that we just singed to the baby was priceless. I mentioned the baby always had music as background in the room, for sleep mostly. So she asked us if we could bring in the music, because they were giving baby the maximum in sedatives and she just wouldn’t sleep… only a bit after our visits.

We went home quite happy about that revelation… As I have believed all this time, music DOES make a difference. We took her cd’s and the cd player, then visited El Calvo to give him the news on everything that has been going on for the last week… Not a nice surprise, but I know he will be another strong column that will give us strength. He gave us some presents, one for Deedee, one for the Mage and one for me. The Mage wants to keep all presents under the tree, waiting until Deedee is home so we open all of them together… And so it will be done.

We arrived at the hospital and our DeeVa was quite awake and fuzzy. She evidently wanted food, but she will be fed small portions at specific intervals... So all I could do was caress her head and chin and sing along her favorites… Her daddy was trying to setup the cd-player, but it didn’t work and he assumed it got broken in the way… That’s the kind of thing that happens to us… So we spoke with the doctor agreeing to come back with a cd player later on in the night, to make sure Deedee sleeps.

We headed towards the nearest pharmacy, and there was no cd player, just the one with headphones. So we went to a department store… easy to get it, hard to pay for it… We kinda forgot the Holiday shopping sprees, and we had to wait an hour and a bit more just to pay. That’s insane… The mage went to take the cd-player to ICU, and again it didn’t work. As he went back to the car he was quite upset and frustrated… Why is it that something so simple as playing a bit of music to soothe baby became such a difficult task? (Sight) I know… We went to auntie’s to give her the latest news, and the Mage checked the cd-player… And it worked. So, it seems that the problem was the voltage in the electrical outlet of ICU.

Ok, so we breathed deep, and decided we would try getting a small 3-legged extension and try plugging it in on our next visit… The day had been too long, and we needed to rest a bit. LightShadow had visited our church and asked for a date to dedicate mass for Deedee’s health. And the only available date was today at 6:00am, in Misa de Aguinaldo. So… Being midnight that meant 4 hours, more or less, to rest. And keeping the hope that everything will be fine, we went home.

Today, we got up at 4:40am. The full moon is quite bright and makes it look as if it were already late morning. We were a bit sleepy, but we became quite awake as we arrived at church. Everything looks beautiful, with the decorations for Xmas. I remembered everything from last year, and it is amazing just how fast time has passed by… The Mage’s communion… Xmas… The wedding… The Mage’s confirmation… Deedee’s baptism… And now Xmas again… It has all been blinks of an eye… As usual, the Father gave us all a beautiful ceremony wrapped in warmth and merryness. We met him afterwards, briefly. I didn’t felt like explaining the depth of Deedee’s condition as I didn’t see the need. She will get better. So far, she has shown that’s what she wants. She is here to teach many lessons to those around her, around us… Her lungs will heal. And after that, everything else will just be lessons and everyday miracles…

There are no impossible goals. Belief cannot be lost. And hope has to guide our path, now more than ever. The greatest Healer that exists is taking care of our baby. And she is feeling all the love around her… from friends, from strangers, and from family. Prayer crosses seas and any kind of distance, prayer brings us all close. It is music for the soul…

We thank everyone that in one way or another has helped to feed our hope. We keep believing, and Deedee keeps on fighting…

10-4

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true


-Ken Hirai- When You Wish Upon a Star

Dedicated to Deirdre Valeria
We hope you come back to us soon...
We miss you, and love you so much...

1 comment:

Visha said...

Please contact Dr Swoboda - you can get her contact information from my website (www.ourthreegirls.com) under the link "Taylor's SMA Info"... it should be the first link -- this is the doctor who has been following my daughter and is one of the top SMA docs in the world! Our prayers are with you and your family at this time.