Doctors, MicKey, Photo Date and New Nurse

What's new and Divaliciuos? Hmmm... let's see... Diet changes: The doctor insisted on lowering my food calories, so now it's 3 scoops instead of 4. In 9 days I've lost 4 pounds... Mommy & Daddy keep monitoring the changes. Mommy did some research and suggested to the nutritionist that maybe it would be better changing Elecare to Neocate, but that is maybe. We'll see what my nutritionist says next week about it. She seemed to have no problem with the idea, but wants to make sure... Anyway, I have some boxes of my formula to use up!

In the meantime, a simple message: I need to get carnitine! Sheesh! Where in NJ can you find carnitine! (Not in any pharmacy around us... What is so wrong with Walgreens in here? We have a BIG variety in PR! Come on!!! This is a big place! How dissapointing!) I need carnitine. I demand carnitine! Let's try a spell: "Summon Carnitine"... 1... 2... 3...

Oh, don't you like this picture of my belly? Watch closely... Yup, I no longer have that ugly big un-divalike gtube in my belly, oh, no... I got updated! Now I have a lovely, cutting edge MicKey button that shows off my curvy features! No more tangles! No more hiding in loose garments! I foresee a cute wardrobe ahead of me! Miss Piggy, WATCH OUT for the DUEL OF THE DIVAS!

This week I met NurseMicheila. She's a cool chick. She tells me secret stuff, and pampers me, and out of 7 was the only one that actually came back for a second show... Not shy, and nothing seems to scare her! LOL I think she may have what it takes to be around me... Oh, and she is not scared of my beloved cat! I hope she sticks around. It would be nice to have someone happy besides Mommy and Daddy that actually sees me regularly... Talking about visits, I hope that NurseGlenna passes by sometime. I miss her! She understood all my divalike needs so well!

Thanks to Little Heroes Project, a cool photographer (Natalya) contacted my reps (aka Mommy & Daddy), and made an appointment to visit me, and do a nice photo shoot of moi. That is so exciting! Finally! Good pictures of me! (No offense Mommy, but all you do is throw that flash in my face, and drive me nuts). What is so nice is that this will be right after a special day... (Mommy and Daddy's 2nd Anniversary is just four days away...) and before Valentine's Day. Awwwww... Can you feel the love tonight? LOL I love you Mommy & Daddy! I can only give you one good big present, and that is ME! Nothing like the three of us, together in our cozy home, to celebrate. It's all about LOVE!

I am so happy and so relieved that I have been well. My only pains have been thanks to my teeth, they keep arriving (now its my upper teeth, ugh!). Little by little things fall into place. All by the grace of God, who gives me strength and courage to go on, who tickles my heart with His warmth at all times. May His presence bless everyone in need, everyone ill, lonely or sad. May healing and happiness come to those who believe in all the miracles He breaths upon us.
10-4

AFTER THE HOSPITAL BLUES... LAZY DAYS

I've been enjoying some lazy days. Being in the hospital for two weeks was not fun at all, with all that poking and brobing. I'm glad it's over. I know I gave quite a scare to Mommy and Daddy and especially to NurseGlenna. I hope things keep on being good, that I keep on getting stronger and that next week things get back to normal.

From the day I finally went back into my bed, it has been a coming and going of nurses... In and out... I would like to think I get visits because of my fame, but no... They come out of duty, and hopefully two lucky ones will stay as my stable caregivers. But I won't be hasty! And they are driving me nuts, I can't even recall their names... Daddy has been playing his inner training video to give each newcomer the drill on what must be done. Let's see if they actually pay attention... Well, as a matter of fact, let's see if no one else gets scared away. Usually after the first day of training, they don't come back. Fingers crossed... Not that I mind too much. I like it better when Mommy and Daddy do everything, staying at my side the whole day. It's more fun. They understand everything about me. Others may try, but there is noone like Mommy and Daddy.


The weekend went really fast. I'm still trying to get back on track, in matters of schedule. At least my numbers have been high and very stable. My friends from the island called me, making sure that I'm fine. I definitively feel so loved!

Mommy decided to give me a full bath in the tub on Monday. To make things special, the water had bubbles... and even smelled like strawberries and chocolate... So yummy! I stayed the whole afternoon watching She-Ra, peeking at Mommy who was putting away the Xmas decor... But then I saw the lights being placed differently, and some hearts attacking the tree... What's this? A Valentine's Tree? Oh Dear!

This week I have many things in plan... therapists coming home, tomorrow the family psychologist will visit us, pediatrician/nutricionist on Thursday... And on Friday I'll be in love...

Well, gotta catch my morning resoiratory treatment so I can see some Wonderpets! Just wanted to update you all in how I am doing, and thank you all for yurprayers and good thoughts. I am grateful to have so many people that care about me. And I'm grateful that God has been with me all this time, taking care of me, strenghtening me. I love you all!

THIS ONE IS IN SPANISH...

Miliki presents... Habia una vez un Circo & La Gallina Turuleca


And it continues with... Don Pepito & Don Jose


And Suzanita tiene un raton...


These are songs from Mommy's childhood... And that Mommy sings to Deedee sometimes. The animation is great! Hope you enjoyed them!

Extubed on Monday, and finally SENT HOME!!!!

Monday afternoon:
Doctors tried extubation at 1pm, and it was as simple as 1-2-3… Just as I had foreseen, Deedee did well, and soon was showing off being 98-99/135 on the bipap.

The night went on without any concerns. Deedee kept high numbers. Secretions were abundant at first but by Tuesday morning had lowered their intensity (although they had turned more sticky).


Tuesday afternoon: Deedee woke up in a good mood, and after a Wonder Pets marathon we finally decided that our Deeva could have a hair wash. One of the nurses got her the dry-wash kit, warmed it up, and off with the stinky hair! Yay! Deeva was not feeling too diva-like during the process, but upon realizing that it was mainly a nice warm massage, she complied to let us do our job. After the nice hairwash and the nice bath, she got dressed up and went to catch some z's.

Daddy arrived with the LTV, we switched the ventilators and watched the numbers. Everything looked good, Deedee never felt the change. The doctor asked us if we were comfortable going home, as they know we can do what is needed now to keep Deedee recovering. No sense in asking, it was an obvious yes!. So arrangements were made, and by nightfall the critical care ambulance arrived, with the usual crew, and took us home.

We arrived around six, then the quest for cleaning up began. We cleaned/disinfected Deedee’s room, and so the bird finally landed in her nest. She got her respiratory treatment at her usual 10pm, and then she went on to sleep for the whole night. Wow! We checked her up at 2am and 6am, and there was no need for doing anything, she was clear and in seventh heaven... And looking like nothing happened. She really needed the rest, when you are in the hospital you don’t get to really do that with so much poking and probing.

So, we are trying to be back into our “normal” schedule… Well, at least half of it... It will take a whole week to get back in synch with our so called normal life...

Deedee got her morning respiratory treatment, but bath was in hold for later as we had to cleanup the mess around the apartment, making sure everything is germ-free. After everything was in place, she finally got her bath, was placed in her wagon and was moved to the living room so she could watch Superman Returns. She’s been doing great the whole day, physically she looks relaxed and her numbers keep on between 99-100. We have not taken off the bipap today, as we need to start that little by little when she is completely recovered. We got a visit from Peter, one of the RTs from the respiratory company, who brought the humidifier for the bipap, so her throat heals well. Later on at nightfall we got a quick visit from NurseMarie, who brought some goodies for our tummies.

We are still doing plenty of laundry (after all it was 2 weeks, plus everything else that needs cleaning), and we are ordering paperwork and medical items. Still, we hope to get sound sleep after Deeva’s respiratory treatment. We are past due in matters of rest. Hopefully tomorrow will be more “normally inclined”... Well… The day will begin with a new nurse for training… Wish us luck.

Thanks to all the people that sent so many prayers in behalf of our Deeva. They were heard. We know many were really worried, and gave plenty of support and care. Thasnks to NurseGlenna and to LandlordSweatte, who more than once gave us a lift and helped out through the "hospital episode" and the snow.

Once more, God smiled upon us all and made things run smoothly. Who says Christmas is over? We feel we are in a chapter of the old Jacobo Morales series... We are grateful that things went right. So many SMA kids have been through a lot this winter! Our prayers include them, and their families. We know that the best way to help is to simply pray, for strength for kids and their caregivers, for wisdom and faith, and for never-ending compassion, as it is needed towards everyone that surrounds us.

We hope that somehow, someday, we will be able to give back all the love that we have received. We know that the Higher Purpose is there... at our grasp. Soon things will start moving. No one stays behind, and we don't forget promises and kindness. We just need a bot of "stability"to actually dive into the projects ahead... All fueled by our beloved Deeva, our inspiration.

10-4

Day 13: Getting Stronger

Saturday went slow, Deeva was not in good humor and was fussing much. At least Sunday was different. She woke up early in the morning, and watched sing alongs during the whole morning, which had a good effect on her mood. In the afternoon she got her pulmozyme treatment, then albuterol (which had me on watch as it had previously had an allergic reaction on baby). Her HR was high, but didnt went beyond 175, although she dropped oxygenation to 89-90. After it was over she returned to 94-95 oxygenation, so I didn't see any improvement...

We suction every half hour, and ask nurses to come do deep suction when needed. So far, it all has been about secretions overload, but they are clear. Teething keeps its progress, adding more salivation than usual. Lungs seem fairly clear, so most of the action is in the back of the nose and upper throat. Based on Deedee's outlook, I feel next extubation will succeed. It should be today or tomorrow. No fever has reappeared, so fingers crossed on that one. Let's watch what happens. We REALLY want to go home as soon as possible. Don't want any cross-infection to take place.

On a happier note, DeeVa is now 17 MONTHS!!! YAY!!! We are so lucky, and so blessed! That goes to show that breaking charts is NOT a bad thing at all.

10-4

DAY 10: HIGH FEVER

The doctor wanted to extubate, but we were not feeling it... Deedee had a rough Thursday, and looked quite unhappy on Friday morning. I felt her warm, but the temperatutre was no showing above 98 degrees... until fever finally showed up at 103.4 degrees. She was the whole morning and afternoon with a fever that wouldn't go away. As Mark got in time for his night shift, they were going to do a urine sample to test why she had such a high fever. The drama never stops...

Deedee was looking miserable these last two days. Her upper teeth also have made an apparition, so she must be in pain also because of that. Seems all teeth are coming out at once! Poor Deedee looks so helpless... They keep poking and probing for tests and it is all so annoying! She's had no real rest as people (doctors, rt's, nurses) keep coming and going.

These last two days were not too happy, but we expected that as they are the peak days for RSV. It's been secretions galore! And the increase of secretions in the back of mouth/nose makes me believe that perhaps she also has sinus... I have that problem and it gets worst with this weather. Deedee's troubles seem parallel to the weather as well... Deedee is taking the "being mommy's clone" issue too seriously. Chill out, girl! We need you to come back home! Hospital stays are NOT funny!

Her g-tube may also need to be changed, so we took her mickey button over there to see if later on in the week they change it. That would mean one less outing to a doctor's office during Winter.

Yesterday the nutritionist passed by, as the doctor is obsessed with Deedee being fat. It was the most funny thing! She shrugged and said that Deedee is already taking the less amount of calories, and that her weight rate when compared to her growth rate is ok. It's just that the girl is truly tall and big, not fat. I just find it funny. The doctor seemed to believe we feed Deedee extras or something... We don't. She just has it in her genes. We just hope she slows down the growing, so we can keep handling her. Right now she is 35 inches tall, and weights 35 pounds.

So... We've had drama. Not a dull moment... Deeva keeps hanging there. At least by the late afternoon she was moving her right hand a lot, which means she is regaining some strength. We may expect an extubation try perhaps in Sunday... If fever vanishes forever. We'll see what happens.

As a side note, Israel was re-admitted to PICU. Many prayers and good vibes sent his way as well.

This is our favorite Psalm, as it sums up all we believe. May God shed His presence on all of us, in sickness and in health.

PSALM 23
The Lord is my shepherd: I shall not be in want.
He maketh me to lie down in green Pastures,
He leadeth me beside the still waters.
He restoreth my soul:
He leadeth me in the paths of righteousness for his name's sake,
Even though I walk through the valley of the shadow of death,
I will fear no evil:
For thou art with me,
Thy rod and staff they comfort me.
Thou preparest a table before me in the presence of mine enemies:
Thou anointed my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life:
And I will dwell in the house of the Lord for ever.

10-4

THIS IS SEWIOUS!

Ok, couldn't help it... Deedee LOVES the Wonderpets, so... Enjoy!

DAY 8: 1st try at Extubation failed

Well, this morning they tried to extubate Deedee as she seemed to be doing well for the past two days, we saw x-rays progression and it all seemed fine. Turns out Deedee only stay on bipap for an hour, and had to be intubated. This time is a smaller tube. She's getting steroids for the inner swelling which seem to prevent her from breathing. This is similar to when we were transferred last year, as they changed the big tube for a small one and two days later extubated successfully. Crossing our fingers so that is repeated. They may try it again on Friday or Saturday. The "voices in my head" believe that extubation in the weekend will succeed... Let's see if I'm a good fortune teller...

I knew that this would fail, there where bits of blood when suctioning in the night which seemed to be nothing but alerted my "voices in the head". I didn't like that they chose to do it on the 8th day of her stay, would have preferred them to wait, but X-rays and numbers showed it was ok to go on. The Rt that was attending today is useless... The nurse was the one that actually seemed more in charge, besides the doctor. The funny thing is that Deedee was 99-100 without the mask, and whenever they tried putting it she would go down. The bipap was not in synch with her breathing, and seems nothing would straighten that situation. At least the intubation was fast and clean, no horror show.

After the event Deedee slept for the whole afternoon. They had to give a bit of morphine as HR would be 198-210. She woke up around 4pm, and from then on kept on being herself. X-ray showed her lower left lung collapsed, interfering with extubation. So now we have to wait and see what happens. Mark stay the night, and I know he'll keep the nurse and rt very busy. He's usually shy, but when it comes to Deedee he becomes quite a warrior.

Deedee is used to gentle loving management, plenty of care with her skin and movements... something that most staff members lack. Someone mentioned today that she was so sensitive to everything, and we flipped. Well, duh. She's alive, sentient, and aware of everything around her. She's not dumb. I wish baby could speak, to tell everyone a thing or two! One wonder what they would do/say if their kids where in the same position... Whatever. We are trying to keep our minds focused on Deedee healing and getting out of the hospital as soon as possible. So far Deedee has been lucky, and we dont want her to run out of luck.

God has listened to so many prayers! We keep on being humbled by so many gifts He has bring us all! As our second wedding anniversary approaches, we hope that our gift is simply a precious baby back at home. We need nothing else. Just the three of us is always the perfect moment in time! May God grant that wish.

Keep praying for so many children that have fallen to RSV and other illnesses. Definitively, Winter has hit hard! Hugs to you all, may you all be back at home soon!

10-4

At the Hospital, DAY 6

Not much to add... Deedee still fighting the bugs, and we officially got the notice that they may try extubing by the weekend (which is good, early extubation with so much secretions had me nervous). If everything keeps going well, maybe it's a matter of just one more week... We are preparing our minds for 2 nevertheless. Better safe than sorry.

Deedee was cranky today, watched Aladin and after reading about shapes she fall asleep for a long while. She's getting her respiratory treatment every 4 hours (two days in a row, I'm amazed! Seems that Daddy's talk with the doctor worked well). Yeah, last night I was feeling useless, they actually did everything... LOL

Bach and Lou passed by today, a quick in and out. Oxygen is at 21%, and everything else seems stable, so there were no further comments. No more surprises for the day, which is good. We don't want more surprises.

Daddy stayed the night today. Gotta go rest. Thanks for all good vibes and prayers, as all work its wonders. We strongly believe so.

10-4

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.

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