HOSPITAL, DAY 12 STILL GOING....

We hoped that Deedee would have been discharged today, but the girl just don't want to leave the hospital. After secretions had cleared up, now they all reappeared stuck in her right lung. Last night she was dropping to the 80s constantly because of this. So, today they are trying albuterol with another medicine to loosen the mucus and see if she gets better by tomorrow. So... One more day (crossing fingers).

Keep the prayers coming, so this episode is over soon. By now we are all very tired, and just want to be at home, together. Taking turns to be at the hospital may be the best choice in matters of being practical, but it's the worst as we spend almost no time together. So, yes, we all just want to be home, soon! We trust that this is a minor thing, with no further complications.

May God keep carrying us through all this, giving us strength, courage and stern hope.

10-4

HOSPITAL, DAY 8

And the extubation on Monday morning was a success!!! By no means an easy day, but at least the tube didn't came back.

The weekends had no news of consequence. Deedee's secretions were a bit less in the beginning, but by late Sunday they had thickened.

On Monday the X-ray looked well, so the plan to extubate her went on. They did so at 8:45am. Baby was struggling a lot. For the next two hours she kept hovering between 88-92 with a high heart rate. Then she settled for 95. During the night she gave some trouble, dropping once to the sixties but coming back instantly. Seems that secretions are doing the bad prabks... We had sick RT's in the weekend, so that may have affected the outcome (she had very clear secretions before the weekend, but by then seems almost all the staff became ill).

Tuesday went on with some action and then some quietness. Baby's getting plugs, and Daddy took matters into his own hands twice. After the shift change at night he had to ask for a change of nurse, as the one in charge of our case was sick... I don't get it. When they give cases, it is evident who's sick and who is not... It would be sensible that they take precautions with respiratory fragile kids... After all it is intensive care, no? Well... Hospitals just care to have slaves working so if they are ill they just demand they wear mask and gloves... But somehow that is never enough with our special kids, and they know it. (sight) What to do, what to do... At least the change was fairly fast after Daddy complained. The night is running smoothly under the circunstances. At least baby has remained using the bipap mask at 21% oxigen (room air), which is very good. Perhaps we will all be FINALLY home by the end of the week... Perhaps.

Keep on praying for our Deeva, as she needs to gather strength to win over the bad bugs! We know that so far she's been doing good fairly fast simply because of the good vibes and positive attitude. That is exactly what baby needs, what she feels and what she appreciates (besides food, of course). ;)

Mommy will be on Wednesday's night shift. She's taking two classes now, and assignments are driving her crazy! But well... Without sacrifice there ain't glory so... Sleep keeps on being overrated. :)

10-4

HOSPITAL, Day 5

The veredict of what baby has is pneumonia. Deedee has been taking antibiotics around the clock, her respiratory care has been also around the clock, and feeding has finally strenghtened her. There was a conversation about diet, and it was evident that the imposed diet to loose weight was leaving baby without the right nutritients, therefore she was very weak. So her feedings should be back to normal in the end, right now it's a transition of 3.5 scoops instead of 4 so it's done little by little. Already you can see results. Deedee is alert and responsive. The light in her eyes is back.

No fever in the last two days. The lungs atelestasia is getting better. They talked about extubating yesterday, but x-ray shows she is not ready yet. I foresee extubation on Monday if things keep on as they are. Secretions are very clear, green stuff is gone. Deedee responded very well to the antibiotics (which they have changed 3 times). This time the hospital team has been more responsive, so the experience has not been bad. We have been there constantly monitoring/watching everything, making sure that improvement is the only option.

Daddy will be doing a double shift, as Mommy began classes and there is an overload of assignments for the weekend. Daddy reports the day has been smooth, Deedee has good semblance, watched Wonderpets and Tinkerbell, and has been getting all she needs, and resting. Right now she's at 25% oxygen and her sat/hr is at 97/150.

Keep praying for our Deeva, for a fast recovery so we are all at home soon. She gave us quite a scare as the pneumonia hit her strong, but the agressive treatment gave good results. Hopefully there will be no further complications for extubation.

Thank you all for good thoughts and prayers. Keep in mind all the other kids that are going through hard times as well. May God grant healing and happiness to us all!

10-4

BACK TO THE HOSPITAL

On Monday Deedee was a bit fussy and looked as if she were in pain. Early in Tuesday's morning she started desating out of the blue, being at 90-91. We did her routine therapy with some extra coughings on the sides to clear her up as when checking with stetoscope she sounded chunky. She then stay between 96-97 for the rest of the morning, but her heart rate was high (195-210) which made us think something was coming up.

In the afternoon I decided to change her mask to the prongs, figuring her teeth may be hurting because of the mask pressure, and therefore the high heart rate. Deedee started dropping and reached the 40's. We did inmediate suction, ambu and coughing. She would only stay in the 60's so we included 3 liters of oxygen, which helped her reach 92. Afterwards she hovered between an oxigenation of 88-92 and the heart rate kept on 200-210. We figured that she may have had a partial lung colapse, so we prepared everything and called 911. Fifteen minutes later, we were at the hospital.

As usual, ER checked x-ray and test for RSV and flu, plus blood tests. The X-ray showed almost the same as when she was dispatched in January, only with a bit more atelestasia on the right side as we expected. The pulse-ox showed 97/180 and again they were making plans to to release us when the numbers began to plummet again. Since she was not sustaining oxygenation with bipap, she had to be intubated and sent to PICU around 5pm.

Again, symptoms began at night. She began to develop a high fever around 8pm, at 102.3 of temperature. The fever would not give in for the rest of the night, until today in the morning. So, during the night Deedee was taking antibiotics, tylenol, IV and her food. The nurse and me were changing diverse ice packs that we were putting all over her as the fever would not go away (under legs, under arms, in back and face). When suctioning, the secretions were nasty green-brown. No doubt she has an infection, now we need to know what she has exactly... Baby was hurting the whole night, opening and closing her eyes, being restless and evidently in pain. It was a long night, as she looked weary, very pale, very tired. Her eyes just seemed to scream "make it all stop, please!". It was VERY unnerving and heart-breaking as there is only so much you can actually do to try easing her pain and the poking/probing of the staff is non-stop (a much hated necessity). At least the RT and the nurse last night were exceptional. I wish that was the team for the rest of the stay. They do everything they should do.

Today in the morning they took her X-ray and the temperature had lowered to 98.8. By midday it was 98.2. So far so good. No word yet on what kind of illness/infection she has, although it should not be RSV (she was negative to it). She was still taking Tylenol and antibiotics, and morphine. I had a minor "encounter"with the RT but then she confirmed what I told her with Weaver and problem solved. In the afternoon the morphine was higher and baby finally got to rest a bit more, letting go of the hurtful expression that she had in her face. Although she did open her eyes to watch bits of Batman Brave & Bold. That's my girl!

Daddy arrived at late afternoon to take care of tonight's night shift. We are crossing fingers to see if after 24 hours of antibiotics the infection begins to vanish. We are hoping Deedee can get through this quickly enough. Main problem has been her looking so tired. She needs more energy. Ironically enough, Daddy had finally got the carnitine on Monday. The "Carnitine experiment" was abruptly interrupted by the sickness emergency. Cést la vie!

Now it seems that the pattern will be a sudden drop, a trip to ER and then a stay when an illness finally shows during the first night. Interesting... I guess our Deeva wants to make sure she is in the right place to get all the attention she needs. Annoying? Yes. But looking at it with a "positive"view, at least she is in a place where action can be taken if things go beyond our knowledge or control. As long as we are in permanent watch and in control, no problem. We'll deal with it. The unnerving thing is convincing our beloved Deeva to keep the fight. We understand that SMA is a horrible thing, and the daily tortures she endures simply to breathe are not to be taken lightly... We wonder when will she get really tired. I guess it is a question with so many answers and opinions... We can only trust that her happy days outweight her sad days, and that what we show her of life makes it worth living. We all have to trust this has a purpose, even if sometimes it seems puzzling, unfair and questionable.

Fight, baby. You must fight and keep on faith and belief. A cure is near. You must try with all your will to simply be there when it finally is discovered. It is the only thing you must do: Trust in God and Will Yourself to Live.

10-4

HAPPY LATE VALENTINE!

I have been keeping everyone busy and on their toes! Mommyslave had no time to write what I dictate, but I said today: "Enough is enough! Update my followers, or feel my wrath! This I command!" Ok, ok... So I simply looked a Mommy and said with my big greyish eyes: "Please?". Even I cannot be disrespectful, I may be a Deeva, but Mommy is Mommy after all.

Last week didn't have further commotions. Well, except the little bit of Mommy trying to get a tooth doctor as something was up with one of her teeth. I wonder if she's teething like me... I had no new nurses visiting me until Thursday afternoon. Just as the family psychologist was here, the nurse arrived for a meet and greet. Wow! This one is very, very tall! She came back on Saturday to spend the whole day tending me... Well, watching my care, as Mommy & Daddy don't let anyone do anything the first day in the job. It's more like a "show and tell".

Saturday was Valentine's day, the day of friendship and looooove. It was a funny day. Mommy got to finally have a tooth doctor see her, then my photographer arrived with fabulous pictures of me, and then we spent a nice evening watching some Noggin. I went to sleep, and then a weird thing happenned at 1:30am... Someone or something or some-it clicked my clicker and the butterfly played music and dancing lights. Mommy and Daddy came running to my crib thinking I had done it, then they realized that my toy and clicker were in my changing table... Yup, Twilight-Zone moment of the night. Hah! Yup, don't tell them, but my telekinetic powers are kicking in! Get ready for some action!!!

On Sunday I got ready, with a pretty dress and even a hairdo. Yup, all dressed up for a ANTM marathon. That and the special of the wedding of Half Ton Man. Oh, Dear!

Today, I got up early, got my respiratory treatment, and now I'm enjoying the disturbing songs about being glad I have hair and nose and face so I'm a member of the human race... Oooooookkkkkkkk... I kinda prefer Moose and Zee to that...

Well, kitty got her food, I got my food too, and soon a new Wonderpets movie will come out. Life is good!

Get well wishes to so many kids at PICU and to those bedridden at home. And special hugs to Sti and Maria who always remember me wherever they go, whatever they do! You guys rock!

PICTURE SESSION and WHEELCHAIR SCHEMES

Last week was very hectic for Mommy and Daddy, as they had to be taking care of me all the time. Such devotion! I just love my diva life! Daddy had to send our 1st shift nurse home on Thursday, as she was coughing a lot and he feared she could be catching something. And taking into consideration how weak I am, it was better to be safe than sorry. I don't wanna go back to the 5 stars hotel again, hopefuly for a loooong time! Well, the nurse went away and so daddy was on duty for the rest of the day. I secretely love when that happens, gives us time to bond and watch movies together...

On Friday the nurse didn't come, so we all assumed she was sick. I hope she gets better, I like her, she's funny. Getting someone for the afternoons keeps on being a challenge, and once again (as this whole past weeks) we were stood up by the 2nd shift prospect. Whatever. Me, I just love all this special attention. No one services me like Mommy and Daddy.

I had a picture session on Saturday, as Natalya passed by after midday. I was not really feeling it, so I confess I didn't feel like "working it". Don't know how those will turn out, I didn't feel like smiling. I just wanted to be left alone so I could watch my Wonderpets. Yup, I just wanted the bi-pap mask and my comfy bed and to be left alone. Mommy and daddy expected the speech therapist to come, but she was another no show... What's up with the no shows lately? I mean, by now I'm used to nurses not showing up, but hey, I will not tolerate that from my other minions! Come on! Work with me people! Throw me a bone! How can I rule the world is I have no reliable supporting cast?

Anyway, all that "being difficult" on Saturday lead to being just fine on Sunday. Ok, so I decided to give Mommy and Daddy a break... I watched some movies with them, I was with high numbers for 9 hours without the mask, I had a happy semblance... And they got a chance to actually do things around the apratment without having to fuss with me. My secret plan? I just wanted to smell the scent of cleaning soap! Yup! I love that apple blossom scent!

On Monday morning my nurse didn't show, and this time Mommy and Daddy got really, really mad. I heard some arguing with the nurse's agency... Oh, boy! I pretended i heard nothing! I just kept watching Treasure planet... I got bathed and treated and dressed up and then the ambulance passed by to pick me up and take me to the wheelchair fitting/selecting/vendor session. I almost fall asleep with the bumpy road! We got there and they started playing me as if I were a puppet... Gee, RESPECT THE DEEVA!!!! They put me in a tilted chair, and guess what? They put me in an almost seated porition... 70-80 degrees... Woah! I saw myself in the mirror... Gosh, I thought that stalking baby had come back, but after a while I figured out that had to be me... So cute I looked! So, the people talked about some customizations to what will be my first adapted wheelchair if it gets aproved. I hope so! I need to start actually doind so many things, and the right chair and support is the first stepping stone!

We went back home arriving late... Yup, that fitting session took a long while! We expected a meet and greet at 4pm but seems the lady got there earlier. Nevertheless she showed up later around 6pm, met me... discovered my condition as no one told her I cannot jump and run... Ugh! All in all this didn't went too well. We faced the same stereotype of all that I requested the agency not to send... I need someone who is full of energy and that will actually talk to me and help me do many things! Why send me minions that just wont cut it? I dont get it... Keeps happening... Will try to give the lady a chance today (well, I'm out of options, are nurses that scarce?). I don't get why the ones I like don't stick around. I mean, I have a ravishing personality, and there's no dull moment in my life! How come people don't wanna join my ongoing adventure... for real?

Mommy went to bed as soon as that lady went out. Her energy levels went flatline. Me? I have energy to spare! Watched Fantasia and Bambi2. Yup, keeping Daddy awake is one of my special skills. So... I guess that the main thing here is that I should be very, very grateful. I have loving parents that will go to any end for me. I get upset as people take advantage of their goodness... Hey, if someone is to do that, it is a privilege that only I can take! They are mine! Get it, people? No sharing rights over Mommy and Daddy! Understood? So... I gotta get my diva sleep, so I can wake up with a fresh mind to plot my next steps... Gotta evaluate my staff, my minions, and even my food! So many things to consider! It's not a simple life!

Thank you God for all the blessings you keep shedding upon me. Grant me progress, grant me strenght and will. Grant me love around me always. Keep me safe, and keep so many ill kids safe as well. So many kids need you, God! But you've got more than enough "good stuff" for each of them! Keep Gabby and Ally and Vivianna and Mary safe! May they recover fast! And help all others get stronger, so they can keep on bringing happiness to their families and friends. God, protect us all!

Amen.

CELEBRATING MOMMY & DADDY! Two Years and Counting!

Yay! Daddy sent Mommy some delicious strawberries covered with chocolate... I'm glad I'm part of the celebration. Yup, this year the three of us celebrate the 2nd wedding anniversary of Mommy & Daddy! We've been so happy and so blessed, being together and at home in such a special date! Last year it was a bit scary for them, we were all at the hospital in SJ... I had them going bald! But enough of stressful memories! What is important is the present. A present of us. That sounds just right.

About me... Well... During the weekend I kept everyone busy, beeping all night long. I'm such a party girl! Well, main thing is that my pulse-ox is placed in my foot (which I move when I sleep, so it makes the machine beep)... It's fun to watch Mommy & Daddy going crazy trying to figure out what is wrong with me. The not so fun part is when they decide to cough-a-late me! Ugh! That's when the prank backfires! I've had a bit of fever and I've been in pain, but it's been because of the arsenal of teeth that my mouth is pouring out. Gosh, it makes me miserable!

Today Tracy and Pat and Ellen gathered at home to discuss my improvements in communication and using the clicker. I fall asleep, naturally... Well, sue them for coming when I'm tired! :P Mommy told me they discussed giving me more choices, more alternatives of play, and even the probability of adapting a mouse so I can try using the computer. Gosh, and I missed it all...

Mommy made another appointment, this time with a pediatrician at Children's Spec. Seems the previous date is for the physician... Ooops... No harm done, as I got a date before the end of this month! (Oddly enough in Ash Wednesday). And she also finished today my updated "Caregiver Handbook", this time it includes much details of what is SMA and other themes so caregivers get REALLY informed! I should get my hardcopy on Thursday.

Mommy also created another blog about me... well, sort of. She told me that here I talk about everything that happens to me, but that others may benefit of the information that she has gathered with Daddy, and so they will put it all little by little in another blog, named DEIRDRE MEDINA so people don't get confused... And know it's about SMA Type1. Mommy wants to put things in Spanish so people from Puerto Rico can benefit of the information... Gee... She's always finding things to get busy, huh? Well, as long as she doesn't forget to service me, no problem! Yup, the diva comes first!

Nothing further to report... I'm gonna take my nightie respiratory session and then to catch Z's... I thank God for the precious parents that I have, who love me so much and show it at all times! And I pray that everyone ill or sad gets a spark of hope, healing and sunshine, so they can also smile!