Days 4 and 5 at PICU

In the afternoon we were told that she would have to stay intubated a bit longer as they found strep and straph bacteria in the lab tests. As usual, no explanation of what that means, just that she will get antibiotics as soon as they check if she would be resistant to it, or not.

In common human language, this is what I found about the new "tenants":
Staph (Staphylococcus ) Can cause a multitude of diseases as a result of infection of various tissues of the body. It can cause a range of illnesses from minor skin infections, such as pimples, impetigo (may also be caused by Streptococcus pyogenes), boils, cellulitis folliculitis, furuncles, carbuncles, scalded skin syndrome and abscesses, to life-threatening diseases such as pneumonia, meningitis, osteomyelitis endocarditis, Toxic shock syndrome (TSS), and septicemia. It often spreads through skin-to-skin contact.

Strep (Streptococcus ) Common cause of sore throat and leads to infections in the upper respiratory tract. Can cause pharyngitis and pneumonia. If untreated it spreads organisms by airborne salivary droplet and nasal discharge.

Fortunately, they have not developed symptoms yet, which puzzled the doctors. Today, Deedee got her antibiotics started in the morning and so far she’s been doing well. Xrays look much better, the right lung atelestasia is gone and now is a matter of secretion handling which has not been so bad. Also, it’s been three days of using Pulmozyme and so far it had no side effects but lung improvement and secretions getting clearer (finally SOMETHING works well with her! She cant use Albuterol or Xopenex as she has allergic reactions to them, plus she gets all the side effects of Robinol).

Yesterday Deedee had a happy disposition and was showing a good grip and pushing with her feet. She looked stronger and not so bothered. Of course, she was watching The Little Mermaid, so that was of help… She got her feeds, her respiratory treatments and good suctions, all of which had made a difference.

Daddy reported that no bad events happened at night or during the morning. The only changes where the addition of antibiotics, and the upper two front teeth that are starting to surface too... Gosh! Everything always comes at the same time!

I’ll take the night shift today, so wish me luck! Yesterday there was a snow storm forecast. At least it was not so bad here in Newark. Hope it stays that way at least for a while! Now, to figure out how to get to the hospital...

10-4

At PICU, Day 3

Well, right lung is a bit bad but getting better. Doctor talked about plans for extubation on Sun or Mon if things keep getting better. She's been alert today, watching WonderPets non-stop. Daddy stayed with her all night long and today. I'm getting things ready to drop before nightfall, with provisions for a long weekend stay. We are at University Hospital's PICU in Newark NJ. DrBach has been in and out, as there are 2 sick SMA babies (Deedee and a 2 year old who has been there for almost 3 weeks and is in very delicate condition). DrSinquaii and DrNevado have been in the watch, so we are confident things will run smoothly. We have no complaints so far. The only difference from last year's hospitalization is that this time we know what is happening, what to do, and we are definitively more finicky and demanding as we know what Deedee truly needs. Hopefully that will make a difference translating to a shorter hospital stay. Fingers crossed, and much hope and faith in things getting better.

There is no internet access available at the hospital, so don't know when I'll update. Guess it's back to the old ways... You may reach us at 973-517-7407 / 973-517-5909. Will keep this short, gotta run.

10-4

Deeva in the hospital with RSV

Deedee had to go to ER in a haste on Wednesday morning as her stats went down drastically, reaching 16. Thanks to good old-fashioned teamwork, her life was saved. The guys from emergency arrived very fast, and intubated her in the ambulance. We arrived to ER at 9:45. Half an hour later they stabilized baby and prepared her for pediatric intensive care. The rest of the afternoon at PICU went well, stats were looking good and the doctor was talking about extubating baby. But when we got cultive results at night, baby showed RSV positive. And she confirmed being sick by the fact that she got a high fever for the rest of the night. Secretions began thickening. And numbers began to change due to body fever and pain.So... no extubation on sight for the next couple of days...

Today it was completely evident she has RSV. (For the benefit of those who doesn't know, RSV is like a flu that only affect infants and toddlers, and is common in this lovely season. Right now there is an epidemic of it, and since it is very easy to catch it is something that any kid with neuromuscular disease should avoid as it affects the respiratory system with the overload of secretions, obviously... Prescriptions? Time, secretion handling, fever-pain handling... Lovely, huh?).

So... Baby's life was saved, and now should require some hard maintenance at our favorite hospital. People over there were actually happy to see us (yes, something is so wrong in our lives... LOL), as we have managed to stay off hospitalizations for long (apparently something that is not so common). See? Being "difficult parents" pays off in that matter... :) Anyway, we recognized many old faces, met some new, and had our share of fighting to do things Deedee's way. Meaning that we will be in PICU for at least a week, if we are lucky. There is another SMA case in the same PICU that has been there for 3 weeks... please pray for the little boy, he's got RSV with FLU and Pneumonia.

We hope that Deedee can be sent home soon... We rather give her the "special treatment" each 4 hours being zombies at home than have her in an environment where she may catch something else. Well, let's watch what happens.

Deedee's life is in God's hands, always. We trust HIM to grant what is best for her. We pray she stays with us for a long time, as we believe she has no expiration date. Everything is difficult and hard, but there are so many sweet moments that make it all worth it! Endless life, endless love. May we have strength to carry on.

As a final note, keep Elienid Maisonave in your prayers. She was a friend who finally rests in peace after a long fight of her own. Pray for strength for her parents and family, as her departure was very unexpected. A new star shines bright in the sky, smiling for she now has no pain, no suffering, and just thrives in beauty and love. Elienid, we will not forget you. R.I.P.

10-4

MERRY XMAS!!!

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Here's what went on in "Nochebuena" and in Xmas day... Enjoy! :)

Finally Bathing... in the Bath!

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Yes, last week our Deeva FINALLY got her bathing chair. After a quest to get a long hose showerhead, she finally got her first official bath... in the bathtub! Yay! Here is a slideshow about it... Enjoy! :)

And if you were wondering about DeeVa's teeth... Well, not only she has two front teeth... She got a whole bunch! 6 in total! Watch them LIVE here:


So what else is going on? DeeVa also got a visit today from the bed people, so now a nice position bed with "trendelemberg" features will be ordered and should arrive in a few weeks. That will help a lot in Deeva's respiratory treatment (and in matters of helping caregivers control backaches!). After the scheduled visit in Jan to Children's Specialized we expect to get a new stroller by March, and a stander to help with her physical therapy.

Many people have been generous with DeeVA, giving her some Xmas "stuffers". Thank you all, nurses, people from Early Intervention, SMA families, friends, and family! DeeVa is very excited to get her first official "Santa" visit. Last year she got many blessings, among them the gift of being alive (our Xmas miracle) and this year she finally got to see a tree with pretty lights, Xmas cards and so much people sending their love to her. She knows what is the true meaning of Xmas alright! We miss everyone from the island, but we know that we will go back sooner than everyone expects. You know how it is when you wish upon a star!

So... We would like to remind you all to take a moment this afternoon and remember and live within yourselves the greatest miracle of them all: The birth of Baby Jesus. Yes, it is not today for real, yes it all has been changed and commercialized... But just dismiss those thoughts and keep focus on how innocent things used to be... There are still good people in this world. There is still hope. And the Spirit of Xmas is alive in those who are righteous, courageous and good. Believe, Wish, Dream, and really Live.

MERRY CHRISTMAS TO ALL!!!!

Sweet Sixteen Months... And getting closer to Santa's visit!

Just 7 more days! Yay! I'm so excited! Two days ago it actually starting snowing! Yup, soft white blanket over the cars and building outside. It was not too much, it all melted away quite fast, but it was exciting enough! At least for me, you know... I am a baby of a sunny summer-all-year-long island! LOL

How have I been these last few days? A bit fussy, you may say... My two fron teeth are here! And so are the pain and the fever they bring! And two more are on the way, at their sides... It's never-ending pain! I just wanna be left alone, with my She-Ra and Ariel movies and a continuous feed (food, always the important factor).

It has been so much FUN getting the mail! We have been receiving so many Xmas cards from the other SMA families! We are putting up the cards in the main door, which Mommy had wrapped up in golden paper with small Santa decors ( I guess Mommy misses her office at work, since she decorated around here as she used to do in her workplace!). The door looks so nice! There is a plush Santa face in the middle, and all the cards around it. I like staring at them all, its all colorful and happy.

Just like my Xmas tree. Yes, it had to be kept in small scale... but it looks so pretty in the dark. I like lights, colored lights. they are fun to watch. The small tree has a pine scent. Yup, Mommys trademark of putting one of those car odorizers scented in pine in the tree keeps going! Well, at least we can smell something! :P

This past two weeks I've met four new nurses. One of them is just like Mary Poppins, with such a cheery disposition! That one is a keeper. She talks to me, reads to me, is trying to teach me new words and is so happy at all times! Just the right attitude to be around me. I want happy people! It's all about me! Me! Me!

Still... I wish I had only three stable nurses. This coming and going gets so tiresome... And it disrupts what Mommy and Daddy have to do... Mommy's last day of school is Saturday. These past two weeks she's been chained to the computer, making her big project work.

And Daddy, well, he passed the test last Tuesday, and now has the ID and Certificate as a CNA! For all humans that don't know, that's a Certified Nurse Aide/Assistant, a certificate issued by the State of NJ. He finished that state program, after 4 months of constant sacrifices. YAY!!!! I'm so proud of you, Daddy! One step closer to our family goals! Now, after the RN (registered Nurse) degree... We believe in you!

I'm a bit sad as so many SMA kids are in the hospital. Cornelius reminds me of me months ago... and Shira got RSV. Many others with flu or just feeling ill. I keep all of them in my prayers, as I know God is good and protects all of us. He never stops keeping me safe, and he stands by every one of those kids, and their mommies and daddies. May God grant you all the gifts of healing and family togetherness and peace this Xmas, and always!

I miss my grannies and my great-granny. I miss my 8 kitties, my home, my godparents... I miss humid weather, sun, sweating... I miss the breeze at my home, the silence of the nights, the birdie that use to wake Mommy everyday at 4am... I miss my family. I miss my friends. I also pray to God that we can all be back home soon. There is no place like home.

Bittersweet Xmas... But I am grateful for so many blessings and so much love that has followed me wherever I go! So many people fighting for me, so many helping hands!

One year after the respiratory arrest that landed me in the hospital, here I am. A beautiful big baby that didn't gave up. A beautiful baby that God protected from the beginning. Who would have guessed that I would trigger so much devotion, so much faith? Thanks to me those who love me have witnessed that yes, there is good in the world. Thanks to me my parents are boldly going where others have not gone before! And my life is just beginning, at my sweet sixteen months!

This is only the beginning!

10-4

Merry X-mas from Deedee!

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