God wants another angel

This week has been the most devastating week of my whole life. What seemed normal, as we have been told it all was normal, turned out to be a life or death ordeal. The uncertainty of the odds are nerve-breaking and consuming… What do you do when all you can do is wait… give it hours and minutes and seconds to see if there is any change… to see if a little person, unaware of anything that is going on but very much aware of the love that is all around her, fights back and decides to live… DeeVa had to be taken to the Emergency Room on Monday night. She was not breathing. On Tuesday morning her lungs collapsed. They managed to stabilize her somehow… But her condition is quite delicate, and while tests have been run the results should arrive over Xmas weekend. And in the meanwhile, it all lays in her hands to have a will to survive and react favorably to everything they have done to take care of her. Yesterday night she was stable, and they lowered the oxygen levels. She seemed to be doing well. We need her to stay that way for two more days to be certain she will make it…

What happened? Why this sudden nightmare before Christmas? What went wrong? Here’s the story so far

On Monday afternoon I arrived from work early, as I took afternoons off during this week because I had no babysitter… Groundel was hospitalized on Sunday at Bella Vista and he was the one taking care of baby in our absence. Later on, LightShadow passed by, and stayed until nightfall. All the while, baby was fine. She fall asleep around six, so I left her in the room with the monitor on and the green light as usual. LightShadow left around 6:30pm. By seven I heard baby complaining, so I went to check her. I turned on the light and realize she was a bit red. My first thought was “What? You have an allergy? Why?” but as I reached her she seemed to be choking on her saliva, as usual these last couple of days. She’s been drooling so much we had named her Captain Babosa. So I pick her up and try un-choking her to no result. As I handled her she suddenly stopped, became completely limp as her eyes rolled back and she stopped breathing. I freaked out. I tried calling the Mage and LightShadow but the fricking cel would have no signal. The house’s phone was not working either. I tried reviving baby trying making her wake up, then trying kitty CPR. Not funny, I call it “kitty CPR” as it was how Clavel revived Crow when he died for 5 minutes… That happened in front of me, so I got the flashback and tried it… DeeVa opened her eyes. But she was in and out. I took her downstairs to put her in the car-seat and she seemed to be dozing off again. I kept tapping her face and her heart saying over and over “don’t fall asleep, don’t fall asleep”. I was too shaky to drive, but decided that if I stayed at home baby would definitively die. If I called 911 they would simply not arrive, I live too far from everything. A call from LightShaow passed trough and I told her a summary of what was going on. I thought of waiting for her, but baby was getting breathless again so I ran to the car and moved along… I kept talking to baby all the way, repeating to her “don’t fall asleep”. She was making no sound, which I knew was very, very bad. By reaching the main road I managed to call LightShadow to tell her I was getting off Anthill, she got right behind my car.

The drive to the emergency room took forever. As I got there LightShadow took the packs while I went in with baby. At first the doctor just said “She choked on milk?” LightShadow’s immediate response was “Look at her, she’s turning blue”. As the doctor did a double take then he took things seriously. They handled us some oxygen to put on the baby while they got a bed ready. Then they took baby, chacking everything, trying tubing her… They took a chest x-ray and it revealed a lung filled with liquid, and the other one starting to fill up. The doctor told me they were getting an ambulance as they didn’t have the right equipment for doing anything, neither there nor in Perea. She had to be taken to San Antonio Hospital that has pediatric intensive care with everything needed… A lady that was there with her sick daughter went to me, making a prayer while holding my hands. I just thanked her, I was not saying much at all. Things had not set in in my head, it all felt as if I were watching ER on tv… a very disturbing episode guest starring… DeeVa.

The ambulance arrived, we all got in and off to the San Antonio Hospital... straight to intensive care. In the way, the doctor was able to tube baby well as she had been struggling at the clinic. So… Arriving at the hospital, they quickly took DeeVa to Intensive Care. No one is allowed inside unless it’s visiting hours, so they kept us waiting outside in the hallway… The mage was given the admissions papers, so he went to do that. After a while they called me to get all the info. The rules were explained, procedures, blah blah… The mage arrived and we were finally able to see baby. What a heart-breaking site! Tubes everywhere, the mandatory serum, and all the machines attached to her little body… Her having trouble breathing leding to the belly-breathing that is very disturbing to view… Ugh! The doctor explained she needed lung drainage, that was the next step. She also needed the vaccines record to be certain of the exact shots that baby got. And baby stuff: clothing, soap… So we agreed to handle the record and the baby bag early in the morning. We said goodbye to DeeVa, leaving our hearts with her as we went away…

The Mage had been sucking it all up so far, but as we went through the hospitals stairs he was all over me in tears. Me, I still could not understand what went wrong… so fast… I hated the site of baby surrounded with wires and machines, very much “a la Matrix”… but been there, done that… although it is very different when it all involves a tiny being that seems so fragile and whom you know she needs simply to be held… Leaving her in a cold, impersonal hospital room, not knowing what will happen next… Horrible. On the way home I let Coriolis know… And as the Mage and I reached home, the horror simply multiplied… Everything so quiet, so empty… The baby’s cradle in our bedroom seemed filled with cobwebs and dust… Unbearable sadness… Unbearable despair. We managed to fall asleep out of exhaustion from crying.

Tuesday morning arrived. We woke up early so we could go get the vaccine record completed (the ped had not filled the blanks on Friday, when he gave Deedee her 4-months shots). And to the hospital to give them her personal items. I just went in to handle both things, I could see Deedee’s bed and a bundle that must have been her… but they didn’t allowed me to get close… the fucking visiting hours rule. So… We went to Bella Vista to check Groundel’s whereabouts. He was pissed, really pissed. The whole ordeal was a minor surgery to clenup the wound… his doctor missed to mention that. I connected a phone in his bedroom, and told him the news about DeeVa. Instant shock and sadness… Ever since he’s been calling every 2 hours to see if there are some news…

Anyway… We went to the 11am visit. The doctor was there, and told us that in the morning DeeVa had some serious complications. Both her lungs failed, collapsed… you name it. They managed to stabilize her, but… she is in a very, very delicate condition. Then he moves on to ask about sickness history in our family, genetic illnesses, yadda yadda. Nothing but diabetes and heart failures from both sides… Then the in-deph of her lack of lower leg mobility, her moving only the arms, breathing trouble… The doctor turned to tell his collegaes “It must be the theory” and that really pissed me off… No explanation whatsoever about what they thought that was wrong with baby, just turning away to do the stupid tea-chit-chat they do… I was pissed that knowing a complete lung failure could lead to imminent death they didn’t call us. Procedures, procedures… The guy also insisted on us letting a neurologist see her for diagnose… not covered by the plan… Not thinking too much about it we said yes, and went to the frigging neurologist office. There we got assaulted by his secretary, “ A hundred dollars… pay first, then go, the doctor will visit the child”. Cold and straight to the pocket core. We got out of there even more outraged and pissed than before. They don’t accept my med plan so we are really screwed… The lady from the night before appeared out of nowhere asking for baby… And then saying “This is the best hospital for extreme cases… You will see… We’ll keep on praying for you”, and then she went away… Things that makes you go Hmmm… Called Coriolis and he gave me some ideas regarding contacting my plan and explaining the situation… So I went to the plan, explained, they called the hospital… yadda yadda… they had a talk about permits if a doctor from the plan’s list would see the child… yadda yadda. For that I needed to make calls, so we went to the hallway and called the Ponce neuro… no answer. Then the ped… various times… We finally got to talk to him, he explained some things and he was to call the hospital to see if they could enlighten him doctor to doctor. A summary? No help, no help. It was then that I broke in tears. Useless. What was I to do? What else could we do?

Back to the hospital in the afternoon. Deedee was the same as three hours ago. We talked to her, singed to her… Trying to keep her spirits high, I know she listens… And she needs to know we are there, that she has not been abandoned, that she is very much needed and very much loved in here… Visiting hour was over, and as we went down there was my sister and her godmother so we talked for a bit… I reminded the Mage to call the ped, and so he did. The ped talked to the hospital’s ped and basically said the same… that the baby was in a very delicate condition, yadda yadda, but added that they were not sure but they were pondering that the baby had the Werdnig-Hoffman disease, whatever THAT is… We went home and the Mage immediately looked it up. Here’s the Wikipedia basics:


Werdnig-Hoffman disease

Werdnig-Hoffman disease (also known as "Infantile spinal muscular atrophy", "spinal muscular atrophy type 1", or "spinal muscular atrophy type I") is an autosomal recessive muscular disease. It is the most severe form of spinal muscular atrophy. Werdnig-Hoffman affects the lower motor neurons only. It has been linked to an abnormal survival motor neuron (SMN) gene.

Symptoms: It is evident before birth or within the first few months of life. There may be a reduction in fetal movement in the final months of pregnancy. Symptoms include floppiness of the limbs and trunk, feeble movements of the arms and legs, swallowing and feeding difficulties, and impaired breathing. Affected children never sit or stand unassisted and will require respiratory support to survive before the age of 2. Other symptoms include:
-Fasciculations of the tongue
-Marked Hypotonia in Proximal, Distal muscles, Intercostals & bulbar muscles (Patient lies in a Frog-Leg position, i.e. hips abducted & knee flexed)
-Flaccid Quadriplegia
-Difficulty breathing
-Poor feeding - need gastrostomy
-Weak cry
-Areflexive extremities
-Normal Intelligence

Diagnosis: Electro-Myelo Gram (EMG) will show Fibrillation & Muscle Denervation,
Serum Createnine-Kinase may be normal or Increased

Prognosis: The patient's condition tends to deteriorate over time, depending on the severity of the symptoms. Children with Werdnig-Hoffman disease / SMA Type 1 face a difficult battle. They are constantly at risk of respiratory infection and pneumonia. Feeding difficulties make it a real challenge for parents to give their children adequate nutrition and supplemental feedings may be required. Tubes placed through the nose or directly onto the stomach may be necessary. Recurrent respiratory problems mean that mechanical support for breathing - usually initially in the form of BiPAP and later often tracheostomy and ventilation - are necessary for the baby to have any chance of long-term survival. Affected children never sit or stand and usually die before the age of 2 if the decision is made not to provide breathing support. However, some individuals have survived to become adults, in which case sexual function is unimpaired.

Treatment: Treatment is symptomatic and supportive and includes treating pneumonia, curvature of the spine and respiratory infections, if present. Also, physical therapy, orthotic supports, and rehabilitation are useful. For individuals who survive early childhood, assistive technology can be vital to providing access to work and entertainment. Genetic counseling is imperative.


So… A constant risk of dying from breathing failure, 80% babies do not make it beyond the first year. So this is the great mistery that the doctors won’t say… Lovely. We went back to the hospital at the night visit. Grannie Millie was already there comforting baby being quite shaken. The mage and I went to baby saying happy remarks, talking to her, teasing her… Positive vibes… Even if your heart breaks even more every second that passes… Baby was very alert, looking at mommy and daddy as usual, demanding food. And entertainment. And, gosh! They took her earring! Now DeeVa doesn’t look fierce in those with sheets! What were they thinking! The doctor arrived, and said she was doing well so far. Less liquid in the lungs, awareness, no belly breathing… That they ran tests and today will run another one… That results should be available at or after the weekend. So far, so good. Hope baby copes, keeping the will to live even if only for food. We went home again…

Silent house, eerie atmosphere… Incredible how you get used to some things that you get to find annoying, and miss them so much… We have found we don’t mind so much getting up 2 or 3 times during the night to feed baby… We have found we listen to her shrieks and breathing and silly sounds and they bring warmth and joy to our home. We have found that we have no complete home without her, we miss her so much… We just want her home. If she has that stupid disease or not, who cares? All she needs is love. All we need to give her is love. She was our gift from God. We have never asked for anything… We don’t care about material things… We hope that this Christmas, we get a miracle. God has been pondering about taking our beautiful child to heaven for he wants another angel… We ask of him to grant her stay, as she is the only thing that makes life worth living for both of us.

Wednesday: Got a phone call at 8am from the hospital. The neurologist passed by and want to speak with us during the morning… So, we should be heading over there soon… And after that, to meet with DeeVa for a small lunchtime chit-chat.
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