Sunday, January 13, 2008


The days keep passing by, sometimes too slow and sometimes too fast. I can imagine what DeeVa could be thinking about it all... The sheer white lights that come and go, the strangers that get close to probe and test things on her, the mild comfort of MrLion who hangs by her side at all times, the constant gathering of all other small friends who at some given times during the day come to life to sing, dance and create a customized show just for her pleasure, and the popping in and out of her favorite slaves: Mommyslave & Daddyslave. By now, not only lullybies and sweet songs makes her sleepy, but also the constant sounds that make a technological chorus: the thumbings of the biPap, the beepings of the Oxymeter, the zumming of the vibrations machine... How everything changes in an instant! Almost a month ago, who would have thought that this chaos would come true? Almost a month ago, DeeVa breathed on her own, laughed spontaniously, and was happy with the simple warmth and joy that her favorite slaves gave her... It all seems a sick joke, a turn into the Twilight Zone which has no escape. The neverending quest for solutions that keep fueling hope is ongoing... There MUST be a way... There is ALWAYS a way.

In the glimpse of an eye we found ourselves teleported to the hospital at Rio Piedras. The Mage & I were a bit unsure if that had been a good decition based on what would become our job woes, travel woes, finance woes... plain woes... But it was obvious there was nothing more to do in Mayaguez that was not following the stablished procedure... something that was NOT what we wanted for Deedee.
During the day we got to meet the new staff, all with different specialties. The head doctor spoke with us, actually LISTENING to our concerns and dilemmas. The Mage and I established our point of view about the non-invasive approach followed at University Hospital, NJ and in Utah. He actually looked interested, a nice surprise. During the day the specialists poked and probed our DeeVa making certain that everything was as it should be... At night I sent out info to the head doctor.

The day was exciting from a fashion perspective. DeeVa was extubated, and a Cpap was placed in her nose. As we came back hours later, the machine was changed to a biPap. They are trying to see which machine is best for her. So far the biPap was working well, the only problem was the mask that had to be changed to see which size would be best for baby... and at all times was either too small or too big. Yup, accessories woes... One mask managed to stay put, and was tried for a long while. During the whole process, one of the staff ladies expressed interest in DrBach's approach and asked me to send her the info I had. So I complied at night. She replied she had used the CoughAssist once while working in private sector and sent me the MDA link that briefly shows its use.

During the day the head doctor had commented that he had not seen an In-Exsufflator and gave me the assignment of finding that out for him. Turns out is is the CoughAssist, so I sent him the info I had on that. By chance I also checked an old email and finally read a message from an SMA parent from Canada, Brad Fisher. I replied a simple hello to him, asking for info... I was in for a big surprise later one!

As we woke up to get ready for hospital, I checked my email and there were fou messages from Brad Fisher, all with plenty of info from his research to help his girl, Shira (SMA 1). We browsed some of it, and his site (winner of jewish journalism award)... Yes, information IS delicious! And so it is finding out parents that passed through this ordeal of confussion, uncertainties and woes... Parents that go on making their children's lives meaningful & happy. Things like this is just what we need, to get direction and to reassert our hopes.

We went to the hospital by midday. So far everything seemed stable within PICU. DeeVa had the biPap at 40% of oxygen and although the machine's mask was obviously too big for her (and is the smallest one) she wore it with resigned contempt. The head doctor passed by, commenting he was surprised that she was doing fine so far under the circunstances... The Mage and the Witch keep their watch over little DeeVa, making sure that she wakes up to a familiar face, songs and tales. So far, so good... DeeVa seems to be responding well to the non-invasive approach... now she just needs to show more tolerance to it. We strongly believe this will work sooner or later. It may all take longer because here it is trial and error, and that is understandable... I know in the end it is the best choice. So many parents and so many tests cannot be wrong. The SMA organization re-enforces this. And the parents of Shira, Taylor, and Emily... to mention some... We all believe.

As the last visiting hour was over, Mommyslave had the bright idea of going home to Hormigueros to get clothing and some other needful things... So it was just before midnight that the Mage and the Witch arrived to their house... Little did they knew that the house would be possessed by an angry spirit that mourned the lack of human breath by destroying the bathroom essentials... The foyer was flooded (as usual), the waterpipe on the living room wall seems on its way of exploding, and the downstairs bathroom gave huge monster wails as water pressure went on and off... The witching hour arrived, and feeling frustrated by the surroundings, both Mommy & Daddy went to sleep, hoping that the new day would bear better gifts...

Getting up early was a bit fruitless... There was no water in the house, so Mommy & Daddy got clothing for the week ahead and went to make sure Auntie and Groundel were doing well. Auntie was still sick but better, Groundel will get off the hospital on Monday. We got Mommy's prescriptions and went to Aguada to meet with Jessica & Ivancito (3.5yrs, SMA 1 boy). It was a short but very inspiring visit. Jess has a very cheery predisposition and an ongoing energy that is very, very contagious. She greeted us and instantly asked us to go inside her house to see Ivancito. The boy was peacefully sleeping in his room. She explained to us a summary of all she's done for him, her constant vigilance at PICU, how his heart stopped and the hospital staff thought him dead and her deep belief in him being alive made everyone move... making a miracle happen. She cares for the boy 24/7, her husband does so as well while not working. Since we had to go too fast for our taste we simply agreed to be back. Oh, so many things to talk about! She has many things to teach us, and to share with us. Hopefully we can meet again very soon...

Coriolis had been watching over our DeeVa during the established visiting hours. He reported no changes besides ain increase in oxygen percentage at his second visit, but everything else looking normal.

Our travel back to the hospital got delayed by traffic, but we managed to arrive two hours before our visiting deadline. DeeVa was asleep, but as she heard our voices she had to open her eyes to check if it was true, if we were really there. I felt relieved to finally see her and touch her, being away for the whole day made us quite anxious... The doctor told us that she had some bluish spots, so they had to put the oxygen a bit higuer again, 50%, so basically DeeVa keeps on in observation. I told her about Dr Swoboda's reply to me, that baby needs the CoughAssit therapy to prevent re-intubation. She will pass the info to the head doctor to see what they can do.

We went to Coriolis Inn after a beggar stalked us for money... There, a PC awaited to be connected and a room awaited organization. So, the Mage & I complied. The witching hour arrived, and we went to sleep... some... We are worried about the outcome with the non-invasive protocol. Main problem now is that they don't have a CoughAssist at the hospital, they will have to look for one and someone who knows how to use it (maybe the lady in the staff who has seen/used it). How long can DeeVa resist being only on biPap to allow time for that search? How much time will they allow before trying re-intubation? The option of tracheotomy is not for baby, not right now. She is too small, and I feel that she can do better without it. When she REALLY needs it, I will know... And only then I will give in to that idea. But even then, I will go first elsewhere to get an expert opinion on that matter. Both the Mage & I strongly believe that the non-invasive approach works. Too many witnesses prove that. It is uphill to make it at first, but we believe it is what is best for Deedee right now. She is a fighter, and she knows we are trying our best to simply bring her back home. We must keep making her feel our warmth, so her desire to be with us make her succeed.

Getting ready to visit DeeVa. Hopefully things keep on being constant... So many things one wishes to do, and most end up in waiting and praying... Frustrating. Tiresome. But all in all, the constant presence at DeeVa's side must be certain for her sake. What is she to do being all alone in that cold, isolated place? Only her eyes can express anything she feels... And only we can tell exactly what it is that she needs... or demands. We know she will pull through... She has her father's strenght, and her mother's stubbornness. God granted us the miracle of healing her lungs, allowing her to stay with us... Granting her a chance to keep on bringing joy and purpose to our lives. We are grateful for that chance. Everything has a reason.


1 comment:

Nate said...

Hey Vivian -- I hear ya! Tough times and very tired - we know how you feel. I am sorry you are going through all of this. I know it's been mentioned, but have you contacted Dr. Schroth as well? We are BIG fans of Dr. Swoboda too, but sometime PICU Dr's will listen to a Pulmonologist that deals with SMA kids regularly. I hear you contacted Dr. Bach and he won't call the hospital - so that's why I am suggesting Dr. Schroth. She may be willing to call down there, maybe.

Hang in there! There are people that do the right things for kids - sometimes you just have to fight, fight, fight to find them. :/

I know Brad and Shannon have given you TONS of good info, but if you need something from me don't hesitate to ask: