Sunday, November 30, 2008


The delay has not been intentional by any means! Last week was one of THOSE weeks…

On Monday Deedee went to the pediatrician to get her 18 months vaccines and the flu shot. Nothing different happened that day, which seemed normal as Deedee had no previous reactions with any previous vaccination. On Tuesday she showed some degrees of fever in the afternoon. Her stomach seemed a bit distended so she got vented, prune juice and problem solved. Wednesday was the same as Tuesday, fever in the afternoon, distended stomach… She’s never had this problems before. This time she had a suppository in the night.

Thursday morning began with her normal long night feeding finishing. Her morning feeding began, and suddenly she began vomiting. As reaction time was not fast enough, she aspirated some of the milk which led to half an hour of numbers going up and down. The rest of the day was uneventful, although the never-ending venting did increase. She seems to have more gas, out of the blue. She slept through the Thanksgiving afternoon, waking up around 8pm. Her heart rate looked a bit high, and even if she had prune juice there was still no bowel movement. We treated her to some of her favorite sing alongs, and after her respiratory therapy session (which went very well) she fall asleep. No bm for the day, so she got a suppository with no results. So again, we all go to bed around 3am.

Friday morning began with the same routine… setting up the new feeding. Again, baby vomited. Same half an hour session of using ambu, bringing her numbers up, keeping them up, preventing aspiration. This time the reaction time was fast so baby had no aspiration and settled a bit faster. Nevertheless, being twice in a row, and since this is NOT a normal behavior, we called her pediatrician, who asked us to go to ER for a complete checkup. We were thinking that perhaps something happened to her fundapplication, as she had never vomited before since that surgery in January. We also wanted to make sure she had nothing else. Again, her stomach was distended. Before the ambulance’s arrival we put another suppository as she looked evidently bloated, and her heart rate was high. When we arrived to ER we were greeted by an attendant that had seen her at PICU when we arrived. That made us more comfortable, as we knew he would take her more seriously. She got X-ray of chest and tummy, and EKG. And finally got a bm apparently thanks to the excitement. The x-ray showed a bit of atelestasia on the right lung, and some scarce secretions due to no morning respiratory therapy. The tummy x-ray showed her bowels were fine. Nothing that can explain her sudden need for so much venting. Since the events have been going on in mornings causing sudden desats, the doctor ordered her to stay the night at PICU so she could be properly monitored.

Friday night seemed uneventful at first. We finally gave Deedee her respiratory morning session at 5pm… Which helped her a lot. She got blood tests, and the usual… Around 10pm the rt decided she wanted to do the treatment, and she was going to use Xoponex. We told her about the d/c that the doctor had given that since it caused a reaction on Deedee (making her crash twice). So, instead of Xoponex she got Albuterol… Gee, big difference. Xopenex is a derivate of Albuterol, so things went just as we expected… The heart rate sky rocketed, baby had trouble breathing, her hands got really cold and sweaty, her eyes got swollen, and her eyes were only pleading for help. The RT had to stop the Albuterol as it evidently was not doing any good. I guess that the good thing is now we have sound evidence for the pulmonologist about Deedee’s reaction to Albuterol, too. Anyway… After that session and being cough-a-lated, we stayed almost up all night as the machines would not let baby sleep (pressure reading each hour made her wake up crying leading to us comforting her…). She got a blood test early in the morning, which returned negative so there was no virus found. Reaching midday the doctor said we could go home. No way to tell if Deedee just had a reaction to the vaccines, she probably did have a reaction to the flu shot as it was her first one (we are not from this cold place and everyone seems to forget about it), maybe she just was reacting due to her teething (there seem to be 4 teeth about to bust out), maybe it’s all due to her being constipated and bloated (last two weeks that’s the order of the day)… Maybe it was all of the above placed together. There is no way to tell if the fundapplication got loose… They say that it is fairly recent (I year ago) so it should work but anything can happen (so much for answers). So… We were send home (amen) with orders for rubinol and vitamins, no albuterol/xopenex, and prune juice as needed… Hmmm… Brilliant outcome. So… Upon arrival baby went to sleep, along with mommy. Daddy took care of things for the rest of the night.

Today, things seem normal enough, but we are making some adjustments to see what happens. We are diminishing the feeds, making them slower, as we have to figure out why she’s getting so bloated. We are also using one of the wedges to keep her a bit up as she feeds and prevent vomiting (which has worked so far). Making note of her heart rate, making note of bm’s and making note of any behavior, normal or not. So far, she is happily watching Sleeping Beauty.

Tomorrow, daddy has to go get a LMN from the pediatrician, but making sure to mention discontinue order for Albuterol/Xoponex. We don’t want more drama about it with the nurses. That has been another issue this week, and in a way I guess it was a good thing that Deedee showed part of what happens to her when they are used on her. Seems that what parents no longer are believed when we say something has happened to our kids… No more comments about it. It was unnerving, but finally we got the belief in what we say. Every kid is different. Just because a majority benefits from a medicine it doesn’t mean all will do. I know what that is like, as I always have reactions to medicines (and that is why in the end I can only take two things: Tylenol and Erythromicin, I am allergic to many things and it seems Deedee is just like me).

The next adventure is due this next week as well. The Synagis shot will arrive on Tuesday and we must go to the pulmonologist office so they give it to Deedee as it is her first time. (Sight) Somehow this “prevention” is turning out to be a creator of more problems… Let’s cross our fingers and hope nothing else happens.

So… Thanksgiving day went by, with much commotion around it… but not forgotten. In the middle of everything insane that always goes on, we did took a moment to gather as family on Thanksgiving day evening… Daddy, Mommy, and sleeping baby. We are thankful to God for He has blessed us with so much strength! He has opened ways that we are to follow without questions or doubts. Everything has a purpose, we strongly believe that, and we don’t blink twice to simply keep on walking the way He sends us. We are Thankful for Deedee, as she has given us reason to live, reason to be better, reason to fight for us as well as for others, reasons to help as we have been helped. Every time that we have been in need, we have received an answer. Every time Deedee has been in peril, she has been granted more time to be with us. We are grateful for the true friends that we have, for the new friends we have made, for the lives that touch us and the lives that we touch. We are grateful that there is always bread in our table, enough to share with others. We are grateful we are surrounded by love.

This is a picture from our last Thanksgiving in Puerto Rico in 2007. GrannyMillie, Melo, Cindy, GreatAuntie Gladys, Mommy & Daddy. Baby was 3 months old. This is our true family. We miss them very, very much. As we also miss Maria, Steve & Alex. We hope to see you all soon.

May all families know the true meaning of Thanksgiving! May everyone enjoy the wonders that God places upon us, especially by giving us small fragile gifts that bring out the best in all of us.


Friday, November 21, 2008

Welcoming Autumn

Click to play Deedee in Autumn
Create your own photobook - Powered by Smilebox
Make a Smilebox photobook

Here's a small memento of Deeva's life in Autumn, "scrapbook" style. Enjoy!

Monday, November 17, 2008

Causing a conmotion?

The past two weeks have been full of commotion. Not because of Deeva, but because we changed the nursing service. Long story. At least now we are getting the weekends covered, sort of. Still a work-in-progress in that matter… Not everyone wants to work on weekends.

Deeva’s illness flew away. She’s been really happy these last couple of days. Besides her Princesses, Disney movies, Baby Einstein and Candy Candy routine, now Conan and She-Ra have been added to her daily entertainment. Talk about controlled TV! LOL Well, I think most agree that the 80’s shows were more constructive than todays ones… And we definitively want our Deeva to know the beauty of being “ochentoso”. Next in line are Jem & the Holograms and Mazinger, but first we need to find them.

No doctors appointments until Friday. She has an eye doctor date. And next Monday she has a pediatrician date. Hopefully nothing else will happen this week. Early Intervention shall try exploring a Speech Therapist soon. And we have a date in Children’s Specialized for the beginning of Jan, so new choices for equipment are available.

Deeva’s lower jaw teeth are showing, so that has been making her a bit uncomfortable. Besides that, everything looks good. Hoefully, Thanksgiving will be another nice day to remember. Get those forks ready for turkey!!!


Saturday, November 1, 2008

It was the day before Halloween...

And all through the house
were running up and down
trying to get Deedee's sats
to stay up and about!

Ahh! Yup, we began using the nebulizer and the Rubinol pill, but somehow all seems to be worst, not better. The plugs are thickened and the secretions keep coming... On Thursday morning the sats would not go beyond 93 for a while, so we called up the pulmonologist and she asked us to go to ER to get a culture and Xray just in case. So... We went through the lovely routine of calling 911, getting ready 9this time with food and all, in case we had to stay) and off we went. Thank God that the ambulance crew was one that had already handled us... Great guys! So we got to ER, and we were placed on a sick bay. Everything went as usual, the wait was a bit long but we are used to it... NurseGlenna stayed with us, so we had both moral support and something interesting to hear (she has many real stories to tell).

Anyway, after having a picnic at ER, an Xray that looked a bit blurry to us but ok to the local doctors... and getting negative results for Deedee's tests (RSV and FLU), we were sent home. We are to do Nebulizer and whole cpt/vibration/cough assist every 4 hours until things get better, plus Rubinol each 8 hours... Ok, sounds like a plan... Right...

Thursday night was a nightmare. Mommy tried to keep up helping Daddy with the whole thing, and the new routine kept us up all night. The beepings are such a lovely melody... So Halloween crept upon us with a trick... A spell of Sleeplessness. As the "Corpse Bride's" song goes, sleep is "uninportant, OVERRATED!". At least we got a small break as NurseGlenna arrived. We did everything routine, then went on with the "Super Heroe Plan". Yes, we were very tired, and the situation is very stressing... So when there's high stress, you should also do some high unwind! LOL

By 1:00pm we were all into our secret identities. Wonder Baby stole the show (even if for a while she was more interested in Ariel). WonderMommy and Flashito were also a hit. Even a Go-Go dancer made an appearance as the damnsel in distress! And Therapist Pat came in as Justice League representative to make sure we didn't eat candy, just pretzels, and to keep WonderBaby in shape. We all defeated the evil Cat-Kitty... (Ok, we needed a villain so bear with us). The evening got to an end and every child was sent home... And back to our secret identities (and being designated slaves to our beloved Deeva).

The rest of the afternoon and night we've been following the 4-hours treatment scheme, but secretions and everything seem the same. The night was lovely, long... We went to sleep almost reaching the dawn. Mommy had to force herself to sleep as she was not feeling well, so she took Benadryl to go to lalaland. Daddy was in charge of Deeva for the morning.

During Saturday's evening we decided that nebulizing so much has not done much but to increase bad plugs. So, we decided to try giving the complete Rubinol and skip a nebulizer. On the last treatment things went better. Lungs are clear. Still, the hovering between 94-96 is unnerving. By daylight there is no beep, but at night is party all night... We'll see how it goes after midnight. So far, it all seems a copy of yesterday. At least she is not getting worst. We have to keep this up until Monday, when she must go see the pulmonologist at midday. At least that date did not took long to plan.

We may be targeting the wrong thing... What if Deedee is allergic to something in the environment? The change in climate is sharp and very bad. Some days its 45 degrees, other days 70. No stability... Although we try to keep the temperature constant in her room and within the apartment. But, Mommy is allergic, and has been with bad sinus... What if baby also has sinus? We'll see on Monday. So far she's been fighting it all... as the WonderBaby she is... We all know it is NOT a secret identity after all.


Deedee's Second Halloween

Click to play Deedee's Halloween 2008
Create your own slideshow - Powered by Smilebox
Make a Smilebox slideshow

Last year she was a dashing devilette. This year, we all became heroes...