ONE LAST HOPE

Well, we got the news on Tuesday from the medical plan that they will not cover any expense for transfer or hospitalization in the US, so they FINALLY gave us a lettter stating so. Almost two months for that... No comments... At least we got the 2nd opinion that sayed the same we have been saying: the best place to take her is Madison or Newark... Gee, thanks for the newsflash... (sight).

So, now our last hope to get to Newark is if the hospital accepts Deedee. The doctors had say yes before on the phone, but by now I trust no words, but black and white. So we are hoping that they keep that option open and accept Deedee. Catastrophic Funds will give the air ambulance to get there if they say yes. We await an answer anytime soon...

So, whatever the outcome we have been dealing with moving stuff from the house at Hormigueros to my aunt's house. It's been a mess... Too much stuff to sort too soon too fast... I guess some things will stay in the house for others to dispose of. We can't do more.

Baby is hanging on. On Sunday had a slight fever so she had to take some antibiotics via IV, and so she has been a bit moody/cranky... But besides that she's doing good. A therapist discovered her addiction to the suction tube... And all in all she's been getting nice plug-outs. And word of the cough assist is spreading, people actually asking for it is nice news. All in all it makes one feel good when others get a benefit from one's efforts.

So... We are tired, sleepless, and praying that we get the answer that baby needs. Only God knows what is best for her. Choices has been narrowed to Newark. Now, let's see if that is the path we are granted... Whatever happens, we know we have done our best to do what is right, and we have fougt for it. I wish I could give it all a bit more, but my own illness has been putting me down (diabetes). I need the rest as a mandatory law... Wishfull thinking right now... Too much stress and uncertainty to have a nice nap.

Daddy stayed with Deeva today, as Mommy was taking care of packing things up at home. Soon he will arrive to help a bit, and so tomorrow we can take care of some loose ends. Hopefully we will do everything before 5pm, so we can go on to see our diva for at least two hours. We must keep her feeling she is much needed, and much loved.

So... Holding on to the last string of hope regarding treating Deedee with the complete NIV way. We know that if we get a no, they may try extubing her but it is a big gamble that may fail and end up in a tract. We will have no escape from that if fate turns the table against us... So keep on praying and sending good vibes our way. All in all, we will keep on fighting, and we will keep on faith in knowing what is best for Deedee... simply because it is in God's hands.

10-4

JUST KEEP SWIMMING...

Oh, our DeeVA has brainwashed us with Finding Nemo and everything Julie Andrews! The songs wont get off our heads!!! And she knows it, I tell you, she knows it! She looks at us while giving us that smirk of glee that just makes you want to eat her up... with kisses!

This weekend Mommy and Daddy went to make the preparations at home for the big travel ahead. Washing clothing, sorting out what to take or not, calling people to move things up from one house to the other... Busy times, no time to rest. Meanwhile, baby rests at her room on Intensive Care, dreaming of flying fishies that keep swimming no matter the odds... Fishies just like her! We should get answers on Monday from the people who can make things possible... Send good vibes to us, keep up with the prayers so things move forward and we keep on having the courage and strenght to do what we must!

10-4

The Waiting Game

Well, these are the news so far:

-Medical Insurance: Right now we are waitig on the Worldcare 2nd opinion to have a meeting with the med-insurance director so he tells us what they will do. The lady from Worldcare told us that it was very likely that Deedee will be taken to the US Mainland for care as her condition requires plenty of specific expertise... But the doctors will give their decision by Friday and then it will be taken to the med-insurance director for further action. We expect a yes for the hospitalization... But since nothing is certain...

-Cathastrophic Funds: We filled up all the paperwork and it is all ready. If the medical insurance says no, they will pay the air ambulance to New Jersey. Since all this time the ICU doctor and the social worker has been telling us to be there, we will be there. We will feel like the fishies at the end of Finding Nemo when we arrive and say "Now what?". But, we will get there. It seems it is what must be after all.

Here in the island things are a bit unnerving in terms of medical care for kids that depend on ventilation and other mechanical ways for survival. The laws that are suppossed to be there to help them are somehow twisted to the convenience of the big companies... Parents and doctors go unheard, and kids keep dying because the system is blind to their needs.

What we have found out during this whole experience is that people who are in power in the right place to help just won't because of political affiliations and convenience. It is sad... The rotten apples get their way and they are a few bunch, not a whole... The rest of the apples in the sack don't really know what to do or how to change things... The few that try to raise their voice get thrown away from the sack. Sad indeed.

Another thing we have learned is that when people unite for a cause, prayers work miracles. Just when we were beginning to loose hope, things began to happen. People that barely knows us has been moving their people to help us. People from all over the island have been granting selfless support to us. People from our workplaces have been very generous and kind. Strangers united to pray for our DeeVa's health, moved by her early age, moved by personal experiences (we have met a few that have lost babies to different diseases). People from different religions have joined the cause, sending out prayers that gives us strenght to go on. It all has been very surprising, very unexpected. And we have been humbled, as well as we are very grateful to all.

We are tired and drained, but we keep going... We KNOW we must keep going. It is all in God's hands, so He guides our path... Wherever that may lead. He blessed us with our little miracle, and He smiles each time we are together... True Love endures anything and everything. Deedee gives unstringed love to all who surround her, a big lesson to be learned from one so young. She smiles openly, welcoming everyone with her warmth and will to live. She is breathtaking.

Slowly, but certainly... The top of the mountain is near... We know it. But now, lets rest and play the waiting game... Just for one day...
10-4

Among puppets and cherries

This week has been very hectic… Filling up paperwork, gathering up paperwork, calling, meeting… making miracles happen… It all has been tiresome and draining… but it all has been for a good cause. We finally got a date at Cathastrofic Funds, we sent the medical insurance papers for the 2nd Opinion at Massachussets so they decide what to do when the results arrive… and we will take papers to a Shriner’s delegate tomorrow morning. Someone has to respond…

In the meanwhile… Our DeeVa is still intubated, oxygen levels at 25%. She’s been gaining some weight, filling up her arms and legs after the mandatory starvation she went through weeks ago… I’m glad she’s looking good, building up strength and being happy and aware at all times. She’s been having non-stop movies, and music, and puppet shows. The staff at the hospital has been very thoughtful and kind to her. It is very much appreciated since family and friends are not able to visit due to distance. Deirdre smiles with everyone and seems to enjoy every second of social interaction. A diva indeed! Today she was all dressed up in red and white cherries. Definitively, red is her color. We celebrated our Valentine's day today. Yesterday was a bad day, filled with bad vibes... But today things got better. And it showed just by watching our gift smiling at us.

The way things are going keep on being a bit stressing… We don’t know if we will be able to take Deedee to New Jersey… Our hopes lie in the Funds to pay the air ambulance. Once there, we will need much guidance to work things through. New Jersey is quite expensive in its overall, and that is very scary… We don’t know how much will cost the hospitalization, and we know that no amount we raise will suffice… I’m hoping by some miracle the plan accepts to pay hospitalization or at least a percentage. We will need help getting a place to stay at NJ or NY…

They may try extubating her next week, depending on how things work out. I think that if they put their hearts to it, the effort may succeed. By now, one of the biggest problems is consistency of the physical therapy and respiratory therapy. Diligence on cough-assist, vibrations, chest tapping and suction is a must. Some do everything outstandingly, others don’t. We hope we can get hands on training so we can help put things under control so everything goes well, either here or elsewhere.

I asked for DrRodriguezSantana, whom was referred to me as the best pneumologist on the isle… I would like to know his opinion on everything we’ve done so far and what we intend to do with Deedee. I hope he can be reached soon. I think the most important doctor right now for Deedee is a pediatric pneumologist… Lung failure is the main killer of SMA kids. Besides him, a geneticist… By now we count on DrCarlo when we finally get off the hospital. And we may try to get DrScarano, a neurologist, when the emergency is over…

So… It all seems like playing chess… Move a piece here, have a consequence there… We trust all the moves we are making are guided by God. We put things in His hands… What will happen will be the best thing for Deedee. We have done every human step we could take… Now, to trust His works, to trust Deedee will heal because He wills so. We thank everyone who has helped us one way or another… We wouldn’t be here without you.

Pray for the families of Zenaida and Praxedes. They are at the hospital, and need good vibes. Pray for so many sick children who are abandoned at hospitals and elsewhere… God’s mercy and justice shall wrap us all.

10-4

Helping angels all around!

Our church of preference, the Fatima Church at Mayaguez, has been gathering funds for Deedee both on yesterday and today's mass services. The godparents went to today's morning mass and they reported the main highlights. We were unable to attend as we are in San Juan...

Yesterday, our DeeVa was happy as service was outstanding and there were no complaints whatsoever. The PT was diligent, the nurse was vigilant and we were able to spend time with a DeeVa that is drooling less. Her oxygenation is between 93-100 depending on which side she rests. And she is at 35% oxygen from Vela ventilation.

Took some lovely pictures, but the celular just wont comply to download them thanks to some administrator issues... And the camera has no drivers available... So I guess when we go to our hometown THEN I'll be able to put them here and in Facebook.

10-4

Routes of Hope, as God wills

Deedee is quite aware of whatever is going on around her. By now, she knows the songs of Sound of Music and from Mary Poppins at least by ear... She enjoys when we do the fingerpuppet show while these songs/movies play. She smiles with a wide grin many times, especially whenever DaddySlave is around. Yup, she's daddy's girl. She keeps on reacting to every sound, every movement, every voice... By now she can recognize specific nurses/PT's and the social worker (who is very fond of playing Octi's musical tentacles... reggae style). Deedee keeps on enjoying pulling the strings, being the cnter of attention... And whenever we are to go eat or go to sleep, she starts crying, fussing and dropping her oxygenation so we stay put until she is fed up with us. A DeeVa, indeed.

We were granted the suction wand so we can at least clean up her drowning/drooling messes, and oxygen is at 30%. Her oxygenation stays within 97-100 whenever she rests on her left side. Positioning her resting on the right side leads to steady 92-96. Her lungs seem to be healing up, let's hope things stay that way.

The doctors have been trying to follow most of the guidelines of NIV. They contacted DrSchroth, hopefully open communication will follow (fingers crossed). Will say no more so I don't jinx it. Still, consistency of the physical therapy still has to be worked on... The method employs AGRESSIVE physical therapy, the agresiveness of what we see still lies on the mild side... Cough assist should be followed by vibrations and CPT, not left as a stand-alone procedure. Some PT's do this to perfection, others dont even bother completing the coughing session acurately... And THAT is a big problem. So this is a work-in-progress situation that can be remedied (hopefully) by daily observation and complaints.

About the medical plan woes... Yesterday we went to the med plan and gave them the complete record. They will send it to 2nd opinion at Massachussets (affiliate hospital for e-commuting... I still dont see what good that can do... except the hospital from US saying that the NIV is valid and that it is recommended, which we are hoping for) so when they get the results they will pass it to Director of the med plan to see what they will do. If they would pay transfer/hospitalization that
would be peachy. But I am realistic, it would have to be a BIG exception (the have a policy against doing this in congenital disease cases). So...

Since the contact at the medplan was the director of Catastrophic Funds years ago, she gave us some ideas we could try at that government office... We had nothing to loose, so we went to the Catastrophic Illnesses Funds office. The director said she
does not qualify because it is not for mayor surgery... In the conversation it came out that she's still intubated. Apparently the lady was asumming Deedee was at home... So she will see IF they get funds before next Friday and she can ONLY pay the ambulance ticket one way. Well, not perfect BUT al least that would be something. But as everything else, this is an IF. We pray that at least we get this help. Everything else can be solved step by step...

If we get the air ambulance ticket to go over there, I know the first two months will be to pay by ourselves (which we cant)... but maybe getting the lease of an apartment so they see we mean to stay will help with hospitalization... I'm assuming its the same in NJ and WI... with different laws applying, of course. I am not sure of this... We need reference from people living there, or who can help us get a place there. We need a physical living address for Deedee in order to get the governmental help.

So... Seems the doctors will wait until next Thu or Fri so I have a decition
from the medical plan to see what they will do. I hope this is so. Trials of intubation/extubation are not good for anyone, so the least they are done the better. Besides, Deedee needs to gather up strenght to achieve a successful extubation to BiPap!

Whatever happens, it is all in God's hands. We have moved/spoken to everyone that matters and that can make things happen... As a proverb says "Sitting still and wishing makes no man great, the good God sends the fishing but you must dig the bait". We have digged the bait. The rest is God's will.

10-4

Since I've got some requests for our contact information, here it is:
Vivian's Cel: 787-313-6955 Mark's Cel: 787-806-7196 has voicemail
In FACEBOOK look for Vivian Rivera. I have pictures of Deedee at the
hospital. You can also look for Mark Medina.
Internate donations to Paypal: hivequeen2000@yahoo.com

Awakening... And some Lung Collapse Answers

Breathe in, breathe out... A good night sleep hightens the senses and provides a clear mind. A new day opens up new possibilities... Perhaps the miracle that we prayed for will come true. Perhaps hardened hearts will soften and help. Perhaps the ugly things will turn into a lovely effort that will help others...

Too many roads, some choices... One truth. Hope endures and conquers the impossible when it is paired with love.

In more serious news... Today I'll visit the med insurance to try getting some answers...

I checked up the SMA Support group for I posted a question about collapsing lungs, which seems to be a continuous problem with Deedee... First of all, I want to make one thing clear: Right now Deedee has no pneumonia, she has no injury and she is just fully loaded with secretions. The secretions are the ones making the left lung collapse... I wish they understood the importance of coughing her out every hour, we understand that one PT for the whole PICU is taxing and demanding but in order for the NIV to work this MUST be done right on time, not just when the PT can! It's a mix of things...

Anyway... Here goes what I posted... Maybe someone from the hospital is reading this and can benefit from the comments.

MY QUESTION:
Doctors are arguing with me now because Deedee's lungs are not working at full potential and they think following the NIV can make things worst. ??? She just had a left lung collapse so they reintubated her Tuesday's morning... Today they are arguing that the protocol is for kids whose lungs work more than 40% well. That anything less will end badly. Because Deedee had both lungs collapsing in December, and a week later the left lung collapse, and now it collapsed again, they are using that to try "proving us wrong" about NIV. Any insight on that matter?

Deedee's chest seems higher on the right side than on left side. They keep mentioning atelestasia... Because of the lung collapse they were not using cough assist giving Deedee time to heal. ??? Is that so?

Oh, they mentioned the proving us wrong and I almost flipped... They have been humoring us to prove us wrong!

Saturation keeps going down and I think it is because of secretion plugs... but noone runs unless it goes below 85. We are not allowed to try suctioning/cough assist, and the hospital is extremely understaffed... The PT complained tonight that now she had to add the cough machine routine, as if she didnt have enough work... Things that makes you go hmmm...

SOME ANSWERS by SMA PARENTS:

ANSWER #1:
1) Why is her lung collapsed. Have they taken an RSV swab, checked for bacterial pneumonia etc.
2) Typically when a child has severe adolectasis you would stay intubated until the lungs are clear enough to be extubated
3) You have to define if you are dealing with A) Illness or B) An injury?

If its an illness she should receive the proper antibiotics and they should be giving her CPT and IPV (I doubt they'll do that) every 2 hours and they should be taking blood gases and xrays often (every couple of days I would think) to make sure they are heading in the right direction with treatment. NIV does not create problems but if the doctors don't know what they are doing then NIV will not work. Have they consulted with Dr. Schroth, Dr. Swoboda?

Lungs don't work at full potential sometimes if there is severe scoliosis but I would think she is too young for that to be happening. You have to speak their language and tell them that your child has perfectly normal lungs but she is all clogged up and the problem is with Difussion and therefore she is not getting any Saturation!

Most of the time our kids are just sick and cant get the junk out of there lungs and therefore we have to implement the cold protocols of using nebs , possible intubation, lots of CPT etc. until the patient gets over what is ailing them. Almost everyone is told not to do NIV and that they should trache their kid.

ANSWER #2
I believe they are mentioning that she has atelectasis, which are pockets of collapse in the lungs - and she NEEDS to be coughed to clear it out - or it could lead to another partial or full lung collapse - if she is underventilated, especially. I don't understand why they say she needs to "heal" - the only way she will heal fully is if she receives aggressive cough therapy and remains properly ventilated!

There is no reason why (unless of course she has an added condition like chronic atelectasis or scoliosis - or asthma), with the NIV, that she DeeDee's lungs shouldn't be working at an adequate vital capacity, meaning that she takes in enough air to ventilate her lungs to keep her O2 levels within normal range. Kids with SMA DO NOT have diseased lungs. Their lungs are healthy - it's just the muscles around them that are weak.

The NIV protocol is in place to help our kids exercise those muscles. It is also in place so that the kids are well ventilated at night - and are able to come of BiPap during the day while maintaining adequate saturation levels. It is also in place to ensure that our kids are well-ventilated, so that collapse doesn't occur. Sure, there are some kids who use BiPap more often - or are 24/7 BiPap dependent - but even in those cases, the BiPap is working at exercising the lung muscles and keeping the lungs properly ventilated.

Used correctly, the NIV can help our kids live longer, better quality lives. DeeDee's doctors are making no sense at all in their approach to her condition...they are treating her as if her lungs are diseased or damaged. Unless she has a perforation or some other type of added damage outside of SMA, then the only way her lungs will "heal" is to cough open the atelectasis - and to keep the cleaned out and properly ventilated!

The PT or RT or whoever made the insensitive statement to you about added work with the cough machine should be removed from DeeDee's case! She is there to HELP, not to complain about what needs to be done to help your child! I know you're in a bind - but I would push as hard as I can to get her coughed - and threaten lawsuit if they don't begin to comply with your wishes. They are not helping her there - they are making her worse by not treating her the way she NEEDS to be treated!


Thank you guys for giving some clarity and perspective to our minds!
10-4

To be or not to be

We were cheated into believing that we have been trying something in the best interest of Deedee. Turns out that the possibilities are overruled by people in power who humors us now to see if they can prove us wrong. I've never expected to hear such a thing... I thought knowledge, truth, simple facts could go a long way. Why make such a big deal out of something that goes to the point and is very matter-of-fact and simple? I thought there was a code out there in which shared facts and discoveries and successes were the main plate. But no... I was naive. Once again things blow in our face... Which are the real facts?

-We have been patronized. You know when some parents let their children run so they fall and then they say " I told you so"? Something along that line...

-There has been no true effort towards the main goal. It all has been an effort to prove us wrong. My question is: How can ANYTHING work if you dont follow the rules? A hybrid of the best of both worlds can be a good try, but it is not what was suggested... what we expected... what should be going on...

-Why people have to be so nearsighted? I dont know... Human nature? Just having fun? Maybe this was an interesting project in the beginning, and we were expected to give it up... The problem is that we are not fantasizing about anything, but there is proof things can work well if done properly. So we dont give up. People dont like it.

One day they we find allies towards our goal to extubate Deedee to a BiPap. The next day we have cruzaders for tracheotomy challenging us in every imaginable way. The next day we find a truce in the middle of a war, and a happy medium. The next day it all turns into a Trojan horse, a gift given with further intent... What are you to think of it all? How can trust be ongoing, constant? And in matters of life and death, trust is a most... Empathy, trust, will...

Mark and me, we are not happy with what keeps going on with our DeeVa. We are not happy that some processes are not constantly kept, and then they are expected to work. We are not happy with the lack of importance put on secretions versus the importance of oxygen. We are not happy with the suave mockery that goes on when we bring in facts or "clues" to solve the puzzle called NIV... We are not happy at the lack of interest in simply getting a full coaching on how to do this thing that they have not done before, not this way... Why they wont learn something new, a new choice for other people that will arrive at their hospitals... a choice different than tract or death. We are not happy at the fact that we can watch but do nothing, not even a little suction, when we know that there is no staff available at the moment because they are solving something more important... Policies that are stupid, people that create barriers... No, we are NOT happy.

We wish DeeVa could speak. It would be hilarious to listen to all the anecdotes she could splat at people... It would be priceless to hear the good, the bad and the ugly. But she cant speak... She can barely react to things... She cant understand what is going on, why mommy and daddy cant be there at her side all the time, why these strangers keep poking her with needles, why these machines are used on her. She cant demand attention, or affection, or simple human rights. She cannot even cry for milk, for she wont be heard. So, forgive US for being so paranoid about her care... for pointing out the big flaws... for trying to do the best we can do for her. We want her to have quality of life, we want her to have the opportunities that no one else would give her just based on her condition, we want her to be able to say in the future that she has the world at her fingertips, that she can do anything. Forgive us for being so knowledgeable, for bringing on facts versus fiction, for keeping our hopes high.

We love our DeeVa, deeply. We know everything that will try to break her... And we know just which things will keep inspiring her everyday life. Look at her, a little fragile thing that with just staring at you can break your will. She is powerful in her innocence. She has no degrees, no knowledge, no idea of what is going on... But she keeps fighting, showing more strenght than all of us united. She looks at everyone, and smiles a genuine smile. She is happy just with feeling the warmth of those who love her... with an empathy that is both defying and haunting. We love our DeeVa so much we would let her go if that is the best choice for her. We wont allow her suffering innecessarily. But right now, she is there... powerfully spinning her web so we do her will... Her mind ever present behind her lovely stargazing eyes.

Some attitudes are too much to handle. We are reaching our limits... Still, we try to breathe and let God take charge. What is best for DeeVa will come, as God wills it. I just wish that people didnt have to make things so difficult... I just wish dissapointment were not so continual... But the show goes on. Stronger than ever.

It may be about the bad, sometimes one has to talk about the bad... But we dont forget the good. The good is out there... helping us with prayers and good vibes... The good is lending a helping hand, to make a dream come true, to give a chance for truly living to a little star that just began to sparkle and fate treatens to take away. There is good. We have witnessed the good in our friends, in strangers, in everything that surrounds us. We have witnessed miracles, as swift as they may be... We are angry, we have a right to be angry... But that only fuels our dedication to our cause: Our DeeVa. It is her, not a choice to tract or not, that makes us face each day... We battle for her wellbeing, not for anyones ideas. Right now we strongly believe it is not the time for rushing into something that can have lifetime consequences. So we will do whatever is in our power to stick to this. We also believe that God allows things to happen because of a higher purpose. Something big will come out of this. Something good, that we still dont understand but that will be.

For now, we'll just loose ourselves in our DeeVa's eyes... in her smile... Together we shall stand after the storm is over. Together.

10-4

Help Wanted

This is the English version. Click on the image to be able to read the information.

Second Extubation Failed

Yesterday, as we arrived to the hospital, Deedee had to be re-intubated again. The doctor told us she had been doing fine in Bipap, that they were doing the cough assist and suction by the hour... but at 3:00am her left lung collapsed giving them no other option... So, back to step 1...

Deedee was fine, under the circunstances. She was amused by DaddySlave as usual, watched some Mary Poppins, fall asleep for a while, then woke up in time for her night therapy. She is very strong-willed. Besides that, we don't feel too comfortable with her oxygenation as it keeps leaping between 85 and 94. She had been on 96 to 100 for the past days... We have to see if that improves...

We gathered some details that I hope will provide some more guidance at the hospital. They are not giving cough assist therapy because of the intubation, and that is important for success in the process. Intubated patients can have this therapy. And after extubation the cough assist and the vibrations/chest tapping should continue as specified by documents. I hope that for the next extubation attempt they keep these details in mind, plus a flat bed to help Deedee breath better. The doctor said maybe the next attemot will be on Thurday, depending on the X-ray. I think that may be too fast, but well... The X-ray will decide.

Finances... Not so good. I've finished my sick leave, so now I enter the non-paid leave. Mark has been in unpaid leave since December... I cannot go to work yet, not when we must be at the hospital to make sure things roll as they should. We take turns making phone calls and the like, too many things to do that are not visible to people but that is very tiresome and taxing for us, who actually do everything plus guard baby. We have reached $9,000 on the baby's account... We need $30,000 to transfer her to Wisconsin as she must go intubated in an air ambulance (non-profit and volunteer flights are not ambulances and have no resources for a patient like this). So we are short by $21,000... But we keep trying, we won't give up.

People, if you can gather up and ask for funds please let us know so we forward you a copy of the medical record review and the letter asking for help plus the ad. Some ideas are asking at traffic stop lights, doing a carwash, high schools can help raise funds with activities... By now EVERYTHING counts. If you know someone who can help FORWARD the information and contact. We have reached everyone we know, and every contact that has been sent to us. No news about Catastrophic Funds. MDA and other organizations do not help individual cases. We are hoping Club de Leones, Mazones, and organizations like that can reach us and help us... we have tried making contact without success.

Last nigh DrScroth from WI called me up, and at least I got some details answered. I know that over there the social worker is doing his best to try helping us out. At least that gives us some hope. An answer will appear somehow. DrWeaver from NJ sent us a very detailed extubation procedure that I forwarded to the doctors. Let's see how that goes...

So... We keep belief, we keep hope, and we keep fighting. Deedee inspires all this. In the end, we will reach the mountain's top. Nothing worth doing is easy... So we hang on, and go on.

10-4

Second Extubation Attempt

Today we had many plans... but since I took some time venting on a chat, we were off to the hospital a bit late (and who knew, thank God for that!). We arrived in time to put The Sound of Music and fly off to take the infamous CPR class... Ok... So basically what the vet taught me about applying CPR on kitties is the same as CPR for babies... Actually it was that kitty CPR that saved Deedee as I reacted in time thanks to my kitty training... Anyway, after the class, to PICU again. And it was then that the "fun" began.

The doctor went on with the extubation plan for today, as he said the baby's X-Ray was "picture perfect". Drama began trying to set the best full mask that would prevent leakage... After a while one that could do the job appeared and fulfilled its destiny. The problem was the doctor who had to be attached to it... as it was an ambu mask... so no way to hold it except holding it manually. One of the therapists came up with the " use the spider mask" solution, and so far that has been the best option. From 3pm to 9pm Deedee kept her oxygenation high between 97 and 100. They were giving round of cough assist and suctin every 2 hours. The physical therapist was satisfied with the work that the cough assist does on secretions. Deedee seemed to be sleeping, but we know that the mask is a bit too big and may be bothering her if she opnes her eyes... So everything is in observation. We wont chant "Success!" until she uses a nasal BiPap. Right now she's at 60% Oxygen, and so needs to be weaned to normal ambience. It is high to compensate for the mask leakage, but it has to go down... hopefully little by little. We'll see what happens next.

Besides this drama, some action has been taking place in matters of what to do about transfer to USMainland. We contacted the social worker at Wisconsin and he's working to get us solutions. We are very happy and very grateful for his fast reply and even faster solutions quest. While this goes on in Madison, I contacted my brother who lives in Newark so he can try gettig a hold on the social worker over there. Mark's dad was also following that quest. I find it strange that NJ social worker has not contacted me in a whole week, so nothing better than personal face to face interaction to see what is going on and what can be done. I need a green light from a hospital before I go full force on the transfer quest. So far the best vibe is Madison, but who knows... Whatever happens, it is all in God's hands and it will be the best thing for Deedee.

So, please pray for Deedee, so she gets used to BiPap and can go on. Also, send prayers for everyone who needs a small miracle in their lives... Small miracles make the BIG difference!

Thank you all for the ongoing support and hope. LightShadow, you are the best spiritual mom around! Coriolis, thanks for the shelter, we apreciate this trouble as we know you are a lone wolf... but lone or not you have a pure heart that only a few know. Groundel, thanks for your constant caring for Deedee, we know you love her much, your prayers mean a lot. To family and friends, thanks for helping out in one way or another, physical and spiritual. Everything helps. Everything is very much needed. Thanks to God for granting us each morning the chance to guard Deedee... Our precious DeeVa.

10-4

HAPPY 1st ANNIVERSARY to MOMMY & DADDY!!!

Yep, it was a year ago on February 3rd when MommySlave & DaddySlave said their "I do" at church.

Wow, seems like we blinked and here we are! It has not been a boring year at all... A Disney honeymoon, a DeeVa growing and showing up, a super Halloween and a lovely Thanksgiving. Christmas was a bit sad, but DeeVa decided to stay with us, so it all was balanced by the Divine. And now, in the middle of the fight, drama and action... Romance lives on... Oh, Dear!

Extubation Failed

The summary of it all:
As we arrived they had started the trial to extube Deedee. They put on the biPap with a nasal mask. Deedee was struggling, her mouth was open so the air escaped through her mouth... She was given an hour and was intubated again as the doctor was unease about her paleness and her struggle to breathe. So, they intubated via nose this time, so her mouth is clear (I dont know what difference that makes... nostril intubation is more difficult by far and she already has a g-tube for feeding...)... And once again we were given the speech of the easy way of handling a tracheotomy, as it ensures neurons are not lost and it grants peace of mind in that matter plus it is easier to maintain a patient with a tract... The facts on doctors having little experience doing proper intubation of babies, the chances of something going wrong... Everything is better and safer with a tract... (Sight) The doctor's recommendation is to tract baby. But they will try extubing her on Monday using a full mask covering nose and mouth...

Ok, so we saw a full-staff effort. Well, almost full... We wanted baby to be safely extubed by having the certainty of an expert, DrSchroth, coaching the process. DrSchroth had no problem with that, in fact she has been quite available. But the hospital staff just WONT call her. What they give me is that they are experts with XYZ years of experience in their fields, that this is not the first SMA patient they have and they have the know how to extubate a patient...

Well, I dont argue their knowledge and experience BUT they have NO experience performing the nonInvasive approach, they don't have hands on training on the synchronicity of some events that allow a proper extubation to BiPap on these babies... They have never used a cough assist on a baby (and argue that settings should be 20/20, as 30 or 40 are too high for a small baby)... And I think that they could do a succesful extubation if only they followed experience on that area, period. With their experience and knowledge, and the right guide, maybe things would be so different! But the unwillingness to give a call, to accept another professional's instructions knowing that that other professional IS an SMA expert is more than appalling! I call it stubbornness, being nearsighted... among other things I should not post...

So... We are back to work... Less days to make a transfer, for a week has passed and now we have 2 weeks to get Deedee transferred to US Mainland. We contacted some family members to see if they can actually move something in their nearby hospital so Deedee can be accepted. We send in help requests to charity flights that some parents sent me... to see if by any chance someone can help us. We need a one way ambulance flight, Destination: Newark or Madison. No trip back to the island, as we are to stay there. We are moving some people to see if they get us some more donations... So far we have collected $7,000. We need to reach $28,000 if we are to actually pay for an ambulance flight... And we are not adding up medical expenses and mom & dad expenses... For stay we are to contact the RonaldMcDonald Foundation, but first we need to confirm a transfer date... Everything is a chain. I still have to contact Ester at NJ and the social worker at Madison... Time is running out.

Choices, difficult things... But nothing is impossible. We keep climbing the mountain with faith, as we know that truth and love guides our path. And hope shines bright before our eyes.

10-4

Extubation Due Today!

Hospital received the CoughAssist on Wednesday. Yesterday they were reading the documentation, making sure everyone knows how to handle it. And so the plan is:
- Extubing Deedee to the BiPap today during the afternoon
- Begin the CoughAssist treatment with everything else... vibrations, chest tapping, positioning... They will probably do so tomorrow...
- Observe to see how it all works during the weekend, to see if Deedee tolerates it all
- On schedule, CPR course on Monday at midday for Mommy&DaddySlaves

Pray for Deedee, so she has the will to battle on, to be extubated successfully!

The hospital staff gathered with us on Wednesday afternoon so we are all on the same page. They worry about the NIV in PR, that if all this work they are almost certain it will be really hard to follow it at home as we wont have the people to back us up in case of emergency... a redundancy that can end up in a hospital where the tract will be done no matter what. They feel that is we are to move to the US, then if extubation succeeds it is the right time to take her on the journey. They also feel that if extubation fails, a tracheotomy is the best solution if she is to stay within the island, as it is the only way that people here are used to dealing with... If it fails we will face the two options: Travel, tract, or fighting the system to the end... And the choice must be done within the next two weeks. Time is running out.

On lighter news, the CoughAssist arrival was a happy event. When the respiratory therapist explained everything about it (validating everything we have been telling them that it does!), how it has been used in elders on the Veterans Hospital, how elders use it at home with much success... The staff was happy, wanted to know more about it, and is already thinking of uses in the floor with other ventilator-dependant kids. So... All in all, fighting for the machine was worth it. We hope it really works its miracle on Deedee, and that it can be put to use for the advantage of other kids. It is the first time that they will use it on infants & children here within the isle. That is exciting in itself... A bit scary, but exciting nevertheless...

Yesterday, the social worker took this picture of Deedee to post an actualized "Needs help" message. Deedee looks puzzled and happy, so enjoy that lovely look. Baby has been a bit fussy, crying a lot, having tummy trouble... But always her eyes light up each time she sees DaddySlave, and each time the Bear-ly-Princess gets in her hand! Kuddos to our little trooper! May God bring us all strenght for the days to come!

10-4