This week has gone in a flash. I was unable to seat down and write events… It all has been a mix of joy, fear, success, frustration and courage. Today DeeVa got the DNA results. As I expected, for it was obvious, she’s got SMA Type 1. Now that she’s been legally branded, I hope things begin to move fast.
The news so far…
MONDAY 31st: Year's End
Very low traffic, that was the best of it. At the hospital, lack of staff... A light atmosphere as a consequence of no bosses around... Morning visit, afternoon visit and night visit went flying. We sang, we played with Dolly and Hippo... And baby looks alert, happy and as lovely as ever. Oxygen is at 50%.
The night was unnerving. Too many people throwing fireworks and the like... I dislike it because of the people playing with guns and "killing" the year... As soon as we went home I took a bath and went under the pillows in the bed. Between the sounds and the fact that the craddle was empty it was a long, sad, frustrating night. I was restless... And I know the Mage felt the same way. A never-ending "Why?" that doesn't really matter but that hits you hard over and over and over... DeeVa must have been scared at the hospital, listening to all those high-pitched sounds... I prayed she would not feel lonely... I prayed she wouldn't cry.
TUESDAY 1st: A New Year
In the morning, everything was normal, stable… Baby was happily following MrLion as the songs from the CD were also singed by mommy and daddy… Oxygen was at 40%, DeeVa was feeling pampered and we got a reward of many smiles.
As we got to PICU in the afternoon, they had changed the oxygen machine to a simpler one… And DeeVa looked beat. The Mage talked to her and kinda mentioned that she looked strange, maybe a bit bluish. I dismissed that as a reflection from the blue tubes… As I went to grab her hands as I always do, I realized both hands were blue. So we called the nurses… The doctor mentions “I told you that wouldn’t work” and we were asked to wait outside while they tubed baby back. After a while, we went in… Baby had recovered some color in her face, the old oxygen machine was back, this time pumping oxygen at 96%. The doctor told us that Deedee had accidentally pulled out the tube so they left her without it to see if she could breathe on her own. Obviously it didn’t work… Okayyyy… You do THAT and you leave the baby unsupervised? If I had some faith in the hospital, it went down the drain thanks to this. What if we had not gone to see baby in the afternoon? They were busy with a new baby at PICU… I just can’t believe some things. That completely reassured the fact that they don’t know what they are doing with her. This is the second attempt at extubation, both done the WRONG way based on all we have read. If this keeps on, they could even cause some brain damage… they should realize that! Oh, I didn’t want to leave… For the last fifteen minutes baby was happily following MrLion again… She seemed fine and content…
At night, only the nurses were in that floor. Of course, Hapy New Year, or something… It really bothered me, because an emergency takes only seconds to happen. Nd this is intensive care? But what can I expect… At the other hospital Groundel didn’t have someone to change his bandage for almost a whole day… The joys of Xmas!
The Mage and I arrived home. I had not realized that some people had left messages with support and much needed info. So, we stayed until very late… or early? In the morning, reading and sending out some mail… Someone MUST have an answer out there… Things cannot be so hopeless…
WEDNESDAY 2nd A Doctor's Call
The morning went without much intervention… DeeVa slept a little, then gave many smiles to daddy. Oxygen at 60%. The Mage left a paper to be filled out stating his family leave absence for all these days because of the hospital ordeal… He left that paper 2 weeks ago, and they had not filled it yet. So, they told me to get it in the afternoon…
I went to have lunch at auntie’s, and just as I was about to reach the hospital for the second visit, I got a call from DrBach. He told me they were not following the right procedures, and that I should try either getting the staff into following the protocol or getting help in that matter, or transferring baby either to UH, NJ or to the hospital in WN. I was really excited to get something, as all these days I’ve been sending out messages trying to figure out what to do, which is the best choice… As I KNOW that what is going on in the hospital may keep baby stable, but may affect in a bad way her condition…
So I got the info, his number, and went to get info on my insurance’s coverage in the US… I had to wait for 3 and a half hours to get a brochure and so they would ask me to bring the patient record… Yup, information procedure they could have told me when I arrived, was asked what I wanted and they gave me a number… Breathe in, breathe out. I arrived at 4pm to the hospital, visiting hour had ended… I wanted to tell the doctor about DrBach as reference for the protocol, but they just told me to come back on the next visiting hour. I was upset because I didn’t get to see Deedee in the afternoon thanks to the medical card stupid staff… and this answer didn’t help the case, either.
Deep breath… I went to get the Mage’s paperwork and they had not filled it in the hospital because, and I quote, “The father had not been taking care of the patient, the patient is in intensive care so there is no reason to fill in and sign a family leave. The patient was taken care of 24 hours. The father had only been visiting”. WTF? It’s like… Exactly… Visiting a baby that can die any minute, being there because an important choice may appear any minute… This is no flu, no chicken pox… I managed to get a certification specifying that Deedee was in PICU and that parents had to attend visiting hours to get the doctor’s veredict… From there I went to Medical records to get a copy of Deedee’s case for the medical card… and since baby is still in PICU they cannot give me a copy of the complete record. Ugh! Lovely!
Frustrated and angry, I went to my car to take a long drive… I guess that it was about time to simply just cry it all off. The uselessness of everything! Tied up by stupid rules… The wall of “No” kept on rising and getting thicker… I drove until I reached another town, ending up at El Calvo’s house. I kinda vent it all off, and met the Mage to give him the so-called certification. Then I drove back to ground zero, taking a deep breath and trying the mantra “Be nice, speak up, they will listen”.
So, at night Deedee looked different from all the other days. This time her eyes were not completely opened and she was staring mainly into the sheets. As I approached, she looked up at me with the saddest eyes… I have never seen so much sadness in her. It literally broke my heart. I tried cheering her up, singing a bit… She managed a smile before I left, but she was sad. I can’t believe that not seeing us in the afternoon made her feel so. And it was evident she missed daddy, as she seemed to look for him to no avail. I talked to the doctor in charge, she had not known about the oxygen event the day before so I refreshed that for her so she would understand why I was so obsessed with the SMA intensive care protocol… I gave her the Consensus that establishes everything. She said she would forward it and that next day I should look for the social worker and the pediatric supervisor to tell her all about my concerns. I was satisfied with her response as she showed at least enough interest in what I was saying.
After I left I was heading home, but I made a turn out of instinct. Or perhaps I just didn’t want to get home at all, as it would be an empty place… So I visited an old friend. Since she’s a doctor she gave me some insight on options and called up her brother who is a geneticist. She mentioned the pediatric hospital in San Juan, and I explained to her the importance of the UH in NJ and the one in Utah. We talked a lot… Until I heard my cel singing and I realized it was close to midnight. She gave me a small token for Deedee, a small silvery image of Virgin Mary. And I finally got home, into the Mage’s arms. I told him about the plan to ask the hospital to bring in the geneticist, and to give the staff all the printouts of the protocols and info… We stayed until 3am doing all this… Anyway, lately we just can’t sleep. We keep looking for answers and choices… There must be a way…
THURSDAY 3rd The Final Veredict
Morning visit… I went to PICU with the idea of speaking with the supervisor giving her the right info to make things move… When I got there, the supervisor was not even in the hospital, the social worker is on vacation and the doctor in charge would not talk to me until the second visit. I was really pissed off… I don’t understand this bourocracy that doesn’t want to listen when you have something important to say. We went to where the doctor was, managed to get a hold on her, explained our concerns… especially that we had spoken to a geneticist and that they needed to call him. The constant we cant do anything, procedures, yadda yadda is beyond bothering… I understand that rules are to be obeyed, but if this is an out of the ordinary case as it is not something of their expertise… Why so much unwillingness to get the information or the right channels? Excuse me for being mad about it. Having the answers right in front of you and not being able to do anything to reach them because people tie you up is the worst feeling in the world. Knowing every second count makes it even worst… Back to PICU, quite bothered, quite angry… At least watching DeeVa and singing to her soothed it all a bit. The hour went too fast… Virgin Mary was pinned into Dolly’s chest, so both can guard Deedee’s dreams… Oxygen is at 50%. The Mage went to work, and I went to auntie’s to eat something… And to try putting myself together in mind and spirit…
Afternoon visit… I wanted to see the supervisor to give her the printout of the protocol for people with SMA, but was told to wait through the visiting hours. When time was out, I was told to wait outside PICU for her… Minutes later the doctor in charge passes by telling me that her supervisor had to go take care of an emergency in another town… Oh, that made my day. She added that the lady had taken the SMA Consensus that I gave them yesterday for she really wanted to read it, and added that at least there were some news: The DNA results finally arrived. And they were positive, SMA Type 1 because of age range, but Type 2 following two positive genes that apply on that array… Like I didn’t knew… We all knew it would be positive. It was obvious. The good news, not having to go through the trauma of delaying the inevitable through extremely painful ways… The bad news, the condition is not piece of cake… it can be fatal, yes… But, we keep the belief we can beat the odds. So far DeeVa has shown her inner strength, her desire to be with us… And we will return that favor. The biggest miracle has been her being alive until now. The rest is up to us… Courage, wisdom, will, love… Together we will conquer this mountain.
Night visit… DeeVa was placed sideways, so she could finally rest her back. But it seems that the stitches bothered her, as she kept crying. The doctor in charge approached us telling us that the supervisor had talked with administration and they agreed to call the geneticist. He will pass by on Saturday to see DeeVa and give his report/assessment about her. The doctor also called the Pediatric Hospital at Rio Piedras, exposing the case so they make a bed for baby. There she should be able to get help in all the areas she needs to be assessed… Since the doctors working there are proffesors too tey can contact doctors in the States and try out protocols… So this may be where they finally begin to apply the non-invasive protocol for intensive care patients of SMA Type 1. We will see… So far, I’ve been told this is the best pediatric hospital in the island as they try anything to save the baby. I hope this is so. What I want is to take baby to University Hospital in NJ where everything is already established and there will be no trial and error… I don’t want DeeVa to become a guinea pig in this island… But reality about finances bind me to the established system for now. If this works and DeeVa pulls through, then the plan to move to the States could be assessed with more care so it is successful ( Both the Mage and I think it is the best for us all anyway… DeeVa will need the special care in detail that this island doesn’t provide for disabilities, and I will get better diabetes care). But by now we are ready for anything.
The Mage and I have just landed in Holland., but some people have already gave us some highlights of the place. Thanks to them we are not broken by the facts. It hurts, life is about being hurt… And about healing, beating the odds, and fighting for our dreams. I knew our baby changed us forever, from the start, when she opened her eyes and showed us those big deep blue eyes… “Oh, you’ll give us trouble”, that was my first thought. So much beauty, so much feeling that nails you each time she stares at you… She understands everything even if she knows nothing. And in her we see that small miracles happen everyday, many take them for granted but not us… She brings delight and passion to life, each time she smiles, each time she holds our fingers with her tight grasp… And we wouldn’t have it any other way.
We love you, Deedee… Our DeeVa. We miss you so much… We want you home. Be strong… Feel our love. We believe in you. Keep making us smile. Keep making us dream.