THE SECOND WEEK HOME

Wow! Another week has passed! Days are flying away, too fast for comfort...

MONDAY
Early Intervention visited us, and after playing with DeeVa and addressing concerns and wherabouts, DeeVa got accepted in the program. They scheduled a meeting for next week on Wednesday, so the case manager will meet with us and lay out a plan for our DeeVa.

TUESDAY
Date at the hospital, with DrBach. It was a very crazy day… We had to take a taxi to go to the doctor’s office. There, as we waited, an RT updated us about the recession and lack of jobs in Newark (lovely). By midday DrBach and Lou saw Deeedee, we left Deedee without a mask to see how much she tolerated (45 minutes) and then went to get an ECG (just 5 minutes). We showed Lou our DeeVa’s site, the links to the other SMA families and mentioned MJ’s tract… Oh Dear! Lou went insane! He tried reaching MJ for more than half an hour to no luck, especially after seeing the pic on her site with a tract.

Lou mentioned Ethan was upstairs, so we went on to visit him and his parents at PICU. We were really glad that plans for extubation were unfolding… by now that word gives me goosebumps! Ethan’s parents are very nice and sweet, and very hands on! They know exactly what Ethan wants, how he feels, what bothers him… Since Deedee has been away from home for so long we kinda lost track of the details, but we are catching up. At least now she makes a sound whenever she wants attention, which is good. Her silent cries for almost 4 months were awful…

So, the doctor said he'll see us in 6 months from now if nothing bad happenned. We went back home in taxi of course… And in the way the LTV began beeping low battery. That was very unnerving! The trip took forever. As Mark opened the apartment’s door the LTV shutdown. Talk about timing! Yup, that was the adventure/action moment of the day… Not funny.

DeeVa was exhausted after the whole drama, so she surrender herself to the Sandman’s dust. At night she woke up to catch Nemo, then to sleep again.



WEDNESDAY
It was a bad day. The morning went smooth, but by midday DeeVa had hit 92 and wouldn’t go up. As I handled her with suction/coughing, the numbers went down to the 70’s. Ambu action made them raise to 90-92 but they just wouldn’t go up. That trend stayed for at least 3 hours… Mark arrived by 5 something and took over my watch. By sleep time her numbers got to 96, and we let her be for a while. By midnight she was 99-100... So we finally went to bed, exhausted. I still don’t get it… Why she went down? I think it must have been a bad plug. My main problem is I can’t bend and carry Deedee because I lack the arm strenght, I can only carry her if she’s placed in my arms. And for CT I can’t do so for long periods because my arms become intolerably in pain ( my trapeze was damaged at work thanks to lifting computers and I have symptoms of carpal-tunnel). So without proper CT in the right places the plugs wont come out… Coughing her too much makes the blood rate go beyond 210, so it must be stopped at a point (she REALLY hates being coughed). At least Mark can handle CT’s and lifting baby. When he is not around everything gets more difficult.

Daddy went today for the Wellfare/Medicaid date. He now needs to get them an affidavit and a letter about the rent pay. Details, details… And I must go fill/sign some papers. So that should be Monday’s adventure…

THURSDAY
Our DeeVa was quite awake in the morning, so by midday we took her out of the crib and into the living room’s bouncer for a tripple session of Disney movies. The surprise of the day? She stayed without the mask from 11am to 4:30pm. Yup, she breathe on her own for 5 hours straight. The day before she was so bad… I just couldn’t believe it. We are so happy about this! During that time she didn’t look distressed or struggling to breathe, her oxygenation kept between 98-100. Her heart rate was a bit high (140-160) but she seemed mellow, smiling a lot. After that long lung workout, we placed the mask as she was turning a bit red in the face, and so she went to have a long nap. When she woke up, she watched Enchanted, and after her daily therapy she went back to sleep.



FRIDAY
DeeVa stayed without a mask for 3 hours in a row, before starting to fuss. She was definitively in “ obey me and just me” mode. I exercised her, placed the splinters, played with her with the farm animals (her favorite tune is when she pushes the froggy and hears the banjo), and read her the Little Mermaid booklet. She finally dozed off watching the pinwheel and listening to Pocahontas… During the night the oxygenation was going down to 92 then back to 97. No plugs, nothing strange…. So we changed her position three times. She finally stayed at a steady 98.

SATURDAY
Mommy had a meeting for a business opportunity, so Daddy stayed with baby until the afternoon. As I arrived, baby was without the mask and had been so ever since midday. We put Fantasia on, and after the movie ended DeeDee complained so we placed the mask on her nose (after 5 hours without it) and put her back in the crib. She was in “leave me alone but don’t leave me” mode… Some songs later, I left her holding the bear-that=changes-colors, and with the pinwheel running as the LTV blows… She was very calm at night, sleeping tight without any problems or delays.

SUNDAY
Baby had her breakfast at mid-morning. She’s still napping but shall soon get her morning treatment, so she can have her Disney session later on…



So, another week passed. It’s been two weeks since our DeeVa came home. She is doing well, scaring us some days so we keep on the right track at all times (I guess). She seems happy, and seems very stress-free. Yup, no more poking and probing! We hope that this trend keeps on, so she doesn’t get sick. By now we are completely tired of hospitals…
Next steps ahead? We have some things in sight: A right stroller for Deedee, transportation with a lift, a positions bed. Daddy got her a memory foam pillow for her head and fo her legs. He also got a percussion massager that we will try today. Hopefully Early Intervention will bring on therapists soon. We also need a caregiver that could comply to care for Deedee at least once a week (what we can pay right now) so we can go to the next job fair and so we can visit government offices together. The job-hunt goes on, as well as Mommy & Daddy will be exploring a job opportunity to see if it works.

Things keep moving ahead, positively. With God guiding our steps, everything that is good for all of us will come our way. In this truth we believe.

10-4

FINALLY in my new HOME!

Almost a whole week has passed since I got out of the hospital, so many exciting things! Let’s see… Hmmm… Well, here goes what my memory allows me to recall (I’m reaching my nap-time!):



MONDAY
Early in the morning I was all dressed up and ready to go! Everyone passed by to check on me, saying goodbye and see you soon. I was placed in the carseat… To be taken back to bed as it needed much adjustment! The RT found a way to make it right, and so back to the carseat… I was showing off with my high oxygenation numbers (I really wanted to get out of the hospital, no offense but I am so tired of so much probing and poking!), When we reached the elevator the reality of it all hit me: I was REALLY going home! So for a moment the shock made me panic and lower my numbers… but only for a moment. I regained my strenght and will to go on, and gave the signal to go on… (Yup, hit the 100 again). So, Mommy rushed me to the grandfather’s car, setting me up in there was a bit of a hassle but was done properly… And off we went!



I had forgotten how a car ride was… I looked around but could not see much, the mask was obstructing the view sideways… And I was focusing on not letting the cold get the best of me… Geesh! Brain-freeze! That’s what hit me while getting in and out of the car! How different from my hometown!

Well, we reached our destination, a strange place in a strange land. This time I was taken out with the carseat and Mommy got all the equipment on her. The crew moved fast. Sooner than I expected I was placed in a bed… Gosh! My own crib! Wow! After all this months I FINALLY have my own crib! (Yup, they never got one for me, the plan was to simply use the play-yard and then get a twin bed… How lame!). I was so excited! As the night arrived the crib came alive with sounds and colors… My own Aquarium! A swimming fishy that bubbles! I was enthralled! I loved that fishy!



Reaching almost midnight the health session was done, and after such an exhausting day I gave up and fall asleep without complaint. Not much to think about… I felt safe. I felt cozy. I felt loved… Yup, I had finally gone home.

TUESDAY
Early in the morning Daddy went to the WIC but couldn’t do much as he needed a letter from Mommy giving him consent to do everything… So…Daddy had the Bob the Builder complex, and finished building up my changing table/drawer thinguie. Mommy figured out in writing what should be my daily routine, and by now handles the feeding pump to perfection! Very important, it’s all about the food!

Daddy brought home some batteries that Mommy had requested for a thinguie for my crib. They put it up, and oh my! It has three flying chicks, and music, and lights up bringing stars to the ceiling! That was fun! I love all these new stuff around me! But most importantly, I love my favorite minions... Having them around me beats anything else, it is always an adventure!



WEDNESDAY
The date for Medicaid was today, so Daddy went on to the appointment and then to the WIC to make sure I got everything filled up. In the afternoon Mommy and Daddy dared to take me off the crib and place me in the bouncer… I was not so thrilled about being seated, and after half an hour scared them hitting the eighties. Nothing that going back to the crib didn’t fix!



THURSDAY
Mommy tried the bouncer on me again… This time they kept is on laying position placing a pillow underneath. Sweet! I got to see Finding Nemo and Mary Poppins! Nothing like being really entertained!

During the afternoon Grandfather passed by, leaving some packages that people had sent me... Gosh! It was almost as what Mommy had told me that Christmas is! I got a bear that lights up at night in many colors! And a musical doggie like the octopus I had, and other bears and shoes and clothing! Yes! So much clothing! So many things! So much love! I am humbled!



FRIDAY
Mommy woke up early to put my feeding in place, then along came Daddy, and before I could actually complain they did that awful routine (I know, I know it’s for my own wellness… That’s what they always say!) and then Mommy prepared that thing mimicking the bath tube… and place me in! To my surprise there was no bottle over me pouring water, no-no… Now this thing is almost high-tech! It has an attached hose that goes to my seat, which is filled with water… And as you push a button water comes out… Just as in the big bathtube in the bathroom! Oh, my! That was fun! A bit scary, for I thought I would drown… Mommy and Daddy kept taking pictures of me, and making believe that I had a snorkel… Sheesh, people! Stop the imagination for a moment! Focus on drowning baby, please! Thank-u!



After the bath, Daddy went out to that wondrous place they call a mall… Mommy stayed with me, playing with me and putting some songs until I fall asleep. The furniture that was supposed to arrive… well, didn’t. During the afternoon one of the Millenium guys passed by to check things up making sure my equipment was working just fine. And at night we all gathered up in the living room, watching The Little Mermaid while Daddy setup the computer (the cable guy came during the day and put cable and dsl… whatever that means…).



SATURDAY
Mommy and Daddy spent the whole day at home, cleaning up the house, setting up the computer room… I demanded much attention, somehow I made my blood pressure go high all day long, so when the alarm sets off they would run to me… Yay! The power over my minions is breathtaking! The landlord passed by leaving a pest repellent for me… Ok, for the kitchen (but it is mainly for me… It’s all about me!). I didn’t wanted to go to sleep early, so I joined Mommy and Daddy in the Livingroom… Daddy put on Lion King. To my dismay, the movie is quite ruined (yup, we played it THAT many times back at the hospital in San Juan). It was so bad, the trying to fix it show… that I dozed off… BORING!!!



SUNDAY
Well, it has been a lazy day. Mommy & Daddy FINALLY put up the so-called “ border” in my room… Half of it features the Princesses, and the other half features Tink. Yup, the halfAriel/halfTink nursery prevailed over all other ideas… Although Nemo and his friends are there… Geesh! Call it a Disneyana mania room! But guys, how about adding Simba and the others from Lion King? I also like Lion King, you know?

Anyway… Mommy taped a pinwheel that Daddy brought the other day (and which I had ignored up until now) to my crib. Yeah, she put it so that the air from my mask would make it spin. How clever! I guess she thought that would amuse me… Well, guess what? It did! And it made me sleepy too… So… Signing off to Neverland to meet Tink in person! But don’t stay away for long! I love visits!



I give thanks to God for granting me the wish of staying with Mommy and Daddy. They would be lost without me, you know? I give thanks becuse I face ech day and night feeling safe, feeling loved... I matter. My minions love me dearly, and I know that they would give their lives, willingly, for me. I thank God for the oportunity to get to know them, to share the good and the bad... And I thank God for all the people that has come to my aid, that has brought hope and beauty to my life. This could have been the end, but God turned it all into a beginning. I cannot give thanks enough... I go to sleep being certain that Mommy and Daddy guard me, that Angels guard me, and that God guards me. Everything is allright.

10-4

GOING HOME on MONDAY!

Mommy has been down with the sickness... Yup, she finally showed up to see me at the hospital today. She was with a bad flu ever since last Tuesday, with fever and chills and all... The climate has not been good for her... And the hospital didn't want her around spreading her ewwwww germs especially to me!!!

So, the big news is, DEEVA will be going home on Monday!!! yup, I will finally be able to go home... Finally I'll see my new apartment, my new room, my new craddle, my new Ariel and friends surroundings... The excitement never stops! I've been able to stand some days some 30 minutes without the mask, two days ago I was without the mask for 1 1/2 hours! So, tomorrow i'll have an appointment with Doctor Bach before i go, and then... All will be in the hands of mommy and daddy...

The Early Intervention people contacted mommy and will go visit me on Monday 21 to evaluate me... hopefully I will get everything I need. It's all a whole new world! Daddy has to go to Wellfare tomorrow very early in the morning, and on Wednesday he has an appointment at Medicaid. Mommy has been submitting some jobs to see if something appears... daddy's official job search will begin a week after I am home.

I'm exhausted now... All this attention and all this good drama takes every drop of energy that I have! Well, gotta go have my beauty-diva-sleep. Gotta keep the charm spell working!

10-4

Extubated on Sunday, On BiPap so Far!

Sunday: Deedee was extubated on the morning. They put a nasal mask, and (miracle, miracle!) baby kept her mouth shut. She was a bit distressed at first, startled and completely annoyed... But an hour later she sleeped peacefully and numbers showed up with good news (Oxygenation between 95-98, heart rate within 150-180). We stayed in until midnight with her, but since she was doing so well we decided to go home and sleep. We know we'll need to be wide awake and alert for what is to come.

Monday: What a hazzle to get to the hospital! It was raining, and we had to wait for almost an hour for the bus... Being car-less is NOT funny! Anyway... Baby was very interested in watching her favorites, and her numbers were too good to believe them (99-100 oxygenation, 130-150 heart rate). The social worker and the case manager reunited with us to keep things running. Social Security gave us their appointment for April 8th, Medicaid for April 16th.

Tuesday: Baby keeps on with good... outstanding numbers (98-100 oxygenation, 120-140 heart rate). DeeVa got a visit from infamous drBach, who told us she should wean to no mask on daytime and use the mask at nights and when necessary as she's with perfect oxygenation, breathing on her own. For the time being, they will keep the mask on until her left side lung's atelestasia improves more. Feeding stopped being continuous, now is every 3 hours. Calories were lowered to 20. We also got the quotes for Deedee's equipment, which cost was halved (everything helps). Daddy got his driver's license today, Mommy will try next week.

Baby is doing just fine. We still can't believe it. She seems content, alert, happy... She is doing well on the bipap, and the prospect of her using it only at nights is simply a big thrill. It is more than we expected. Everything has been more than we expected. The people surrounding us, helping us... So many angels sent to show us the way, to make things move and come true! It all has been hard, and it will be hard for a while, but everything we knew that should be done IS BEING DONE! And it is a great feeling to actually get to know that yes, you were right all along, you had the right idea... and your efforts have not been wasted.

We get the greatest reward each time our DeeVa looks up at us and smiles. Whatever happens now, it will all be fine. Our lives are in God's hands, so we trust His will. And we will keep on fighting... Belief, faith, trust, will, and above all, love.

Our little mage keeps spreading her charm everywhere she goes. The story goes on...

10-4

WE ARE IN NEW JERSEY!!!!

After so many storms, and what seemed an endless wait, we got the GO! from Cathastrofic Funds. So we got the air ambulance. The news arrived at Wednesday night... By Thursday afternoon I got a call from the hospital saying Deedee would be transferred any minute now... And on Friday Morning, at 11:00am, baby was put in the jet and zoomed over to Newark!

THE TRIP
Mommy reached the hospital after 6am, and baby was prepared for her big day! Everyone passed by to say farewell to our DeeVa, and it all got very emotional. The people from the air ambulance company arrived, and as baby was placed in the gerney she went into a shock... She just stared straight ahead into nothingness, becoming non-responsive to her surroundings. I noticed that as we were in the ambulance, just before we went in the jet. It freaked me out. She would not follow with her eyes any movement, or show sign of being aware... not even showing a grasp. She stared to the front, without blinking, without any movement.

Monitors showed no signs of trouble, so we went ahead and went in the jet. It was a now or never moment... The four hours that went afterwards have been the longest hours of my life. Deedee was unresponsive for almost two hours. Then she started blinking a bit, and moving her fingers a bit... but very lightly. The nurse put Deedee in my arms, so she would be close to me in the rest of the journey until we reached ground. Deedee would not fall asleep at any moment, even if she wanted to... her eyelids kept closing while she fought sleep off. An ambulance waited for us, and so Deedee was moved very quickly to the hospital.

NEWARK ARRIVAL
We arrived at 4:30pm at the University Hospital. Deedee kept on looking shocked and being stunned... When she reached her assigned room and was placed on a bed she looked over at daddy, then at me, and smiled. Finally, a sign of actually acknowledging us! I felt sudden relief! So... Baby was checked, her tube was changed to a smaller one, medicine was placed to lower the throat swelling, and she finally went to sleep a-lot, for the rest of the night... We filled up the admission papers, and stayed for a while. After being sure that everything was fine, mommy and daddy went to their new home to FINALLY rest. It had been a long, taxing day! And still, everything was surreal, unreal... you name it.

So the new chapter on Deedee's saga begins...

They were going to try extubating her today, but decided to give baby more time to get used to the new surroundings, the new staff and so she is completely rested. Extubation has been scheduled for tomorrow. Today she has been sleeping non-stop after watching Fantasia 2000, and she seems calm. Her usual charm is back to normal. Many prayers keep going her way, so there is success in our efforts for her. Fingers crossed on that, and complete faith on what God will do with her in the end.

It all has been His will, what seemed impossible was delivered flawlessly into our hands... Chapter one was closed feeding hope, feeding trust in the Allmigty, feeding belief in what we strongly belief was the only right choice for baby. So many hands have helped in the way, so many people gave us strenght and made us smile through our hard times! We are grateful for everyone who helped, for every prayer, for every kindness. It all has been a collective effort which demonstrated that there are good things in life, that miracles do happen, the good can win over the bad.

We want to thank family and friends for their ongoing support. We want to thank the Rio Piedras's Pediatric Hospital PICU staff for bearing with us and trying out a different way (special thanks to Dr.Diaz, Dr.Garcia, Leslie, Idaliz and Wanda... We will NEVER forget your dedication, your help and your love for Deedee. We made it through thanks to you guys!). And we thank God for allowing us to give Deedee a chance for a better life.

Chapter Two begins now. Let's see how the story unfolds... Step by step we keep on climbing the mountain. day by day a new hope rise.

10-4

A Strange Visitor...

In the middle of the stress about the transfer to NJ and the forced waiting game, DeeVa got a visit from an infamous mouse... Baby was curious about him, looking at him with haunting attention. She atually started crying when he went out. Hmmm, demanding attention? Nah! Yup, seems baby really has all the basic attitudes to conquer the world! :P Mommy wondered why she wasnt scared of him, and then later in the afternoon she realized why while playing "Fantasia"... Of course, the Sorcerer's Apprentice... Mickey Mouse is there, as well as in the intermissions... All in all that was a happy intermission from the overall "what next" mood.

Later on, Daddy called and got the news first from DeeVa's assistant... Baby took possession of the phone to listen to Daddy... She was quite excited about the mousy visit! But then, minutes later, she realized her big mistake... DeeVa says it all with her eyes! "MommySlave, PLEASE! MAke him stop singing! PLEASEEEE!!!" And Mommy knew what she was talking about, Daddy was on speaker... "Oh, Dear!"

Don't fail to notice the Teletubby effect of the bow on DeeVa's head! See? Teletubbies... Resistance is futile! (And it all began thanks to the StPatrick's day green bow, courtesy of a funny insane RT... How come I didn't think of that?).

The news for the day: Catastrophic Funds got the fax from University Hospital and next Wednesday will be the evaluation. Until then, try to relax and release... We have come this far, things won't stop now. People, send us positive vibes, and pray a lot for all of us, as well as for all other kids who are in intensive care and have missed many holidays thanks to that. May them all go home, healthy. May God's gifts of mercy and healing fall upon them all.

This is Holy Week. Remember so. Remember God's sacrifice to redeem mankind. Take a moment to think about it, and give thanks for all the blessings you have. We know we have many blessings, our greatest one being our DeeVa who is still at our side, bringing so much warmth and love into our lives! Easter may be fun because of funny bunny eggs and wabbit furs, BUT that is just a playful addition to the important main event: The Resurrection of Our Lord Jesus Christ! Let your kids know that before they go egg-hunting. The most important things are invisible to the eyes, but touches the soul.

10-4

The DRAMA Continues...

We got the apartmet, we got University Hospital of Newark saying yes to our DeeVa, and today when we contacted Catastrophic Funds to coordinate the air ambulance, they say that the case was submitted to their comittee and was denied because there was no hospital accepting Deedee and now it must be re-submitted to the comittee next Wednesday to see what they decide. ??!!

We dont get it. They had told us, back on February 19th, that the only thing they could give us was the air ambulance one way ticket as they could not cover anything else for our case. That was enough for us. We believed their word that they would do the transfer. Now, this... Aparently someone didnt really thought we would get a hospital without having insurance, and just dismissed us with a word of hope that would take us nowhere anyway... I would like to think that is not the case. Seems Mark and me have the same bad habit of believing people. We are too naive, still at this stage of the game.

So... Now what? We have to wait for our hospital to try to move things, or until next Monday to speak with the Catastrophic Funds director who is not available this week, and/or wait until next week's Wednesday so the comittee gives its veredict of granting the air ambulance... or not.

After all this work, after all this wait, this happens. It was the first stepping stone we needed to do before everything else, and we trusted their word about the air ambulance... It is all a bad cruel joke.

DeeVa has been 3 months with 2 days at intensive care. She has been intubated all this while, which is NOT good. Days cannot keep passing by... People dont seem to get that if she's at intensive care it means she has a life or death situation. Her illness is fatal and must be assessed inmediately to at least try and grant some hope for her. SMA has no cure, we know. It can only be treated... And we want to treat it so Deedee has the best options at her grasp within her particular circunstances. We want her to have a future, even if it seems to be just a fantasy or an ideal. We will not treat her as if she had a death sentence because from the moment we are born we are all going to die. It is that simple. Only God knows when she will go to Him. In the meanwhile, it is up to us to make things happen for her, so she truly has a chance.

It is frustrating how people dismiss things as if they were everyday situations, as if what we want was only a product of fickleness. We wonder what they would do if it were their children who needed the help... The help that a government agency made just for that can give. We hope that it all will work out in the end, that this is just one more trial of our patience... May God grant wisdom to the right people, enlightening and unhardening their hearts. And may God give us strenght and serenity for the days to come...

In the meanwhile, baby waits for whatever is gonna happen to her... Always smiling with innocent glee, always alert to everything and everyone, always eager to simply live. What a lesson to learn from one so small!

10-4