Wednesday was Moving Day for our DeeVa. At least within the hospital. As we arrived she had been taken to another room that has more space and is a bit more isolated from the others. The first impression was not very polite. We just envisioned a room used for storage being cleared so baby can stay somewhere within the inward boundaries of intensive care... a vision not helped by the cleaning people not going into the room and the A/C crew doing their job while cutting through the fiber-glass ceiling of a room of a respiratory illness patient with the patient watching. Not so funny at the moment. We were very upset. That, and watching the area at night being so isolated didn't help our nerves or our trust in the place. The alarm for oxygenation was very low, and since it is a closed room nothing can be heard from outside. Plus no visible camera shooting baby. Baby would have complete silence since there was no CD or DVD player around, which we dont like as she is used to music: Sounds make her feel safe, silence makes her feel lonely and uneasy. The whole combination was unnerving, and we canceled our plan to go to our hometown to finish moving. We didn't sleep well that night.
Thursday we arrived trying to be a bit more open minded and less defensive about it all. So instead of getting angry we started joking about it all. At least our paranoia levels went a bit down. I took my CD player so baby can listen to her music at her usual continupus play mode (reminiscing home). The TV in the room has VCR, and Daddy was upset about it, but never fear! I'm ready for anything. I still have my VHS movie collection (yes, I'm a Disney freak, so what?). Baby will have many hours of entertainment... no problem about that. The cleaning crew finally showed their noses, so no... it's not a warehouse and we dont have to call maintenance :P And the window is reasuring in case there is a fire and we must hurry out. Nah, the day/night feel will be good for baby. Being in a closed room is the pits especially without awareness of time... Last perk of the new room: It is in front of the RT desk, so they are literally accessible if they are not servicing anyone else. So we felt a bit of relief (after baby seemed content with everything). After the visit, we decided to head to auntie's house so Daddy could spend some time with his other daughter, Mandy. We have been talking about the travel to NJ and he knew it was certain for the weekend... with uncertain way back. He wanted to see her just in case.
On Friday we cleared some of the mess at auntie’s place in our hometown, as well as Daddy went to get Amanda so they would have some quality time together. We were to get a plane ticket no matter if we had to pay, as the time at the hospital is shortening (DeeVa's pneumonia is almost over and we need to move fast if we want to take her to the States without a tract). We had no idea that the Mayaguez Airport was in such bad shape, with no flight booths left. I mentioned that we should get the tickets online... Daddy got a call from his friend from work saying the company will pay the plane ticket and that he should go to the factory so they could browse for it online. Great minds think alike! In the afternoon, we got the plane ticket so Daddy could go to New Jersey… Courtesy of Cordis LLC, who donated this for our beloved DeeVa’s cause. Night crept upon us, and we faced the road once more... after all, we had to go to our beloved DeeVa! We reached the hospital in time for Daddy to spend a bit of time with baby before his trip at the wee hours of the morning. It all has been speeding up… Memories are hazed by so many events one after the other, at all times…
Very early in Saturday's morning, Daddy went on to accomplish his mission for Deedee’s sake… At 3:25am he took a plane to get to New Jeresey. He arrived over there at 6:25am. Now, he needs to fulfill his mission: To find an apartment for all of us. To get to the hospital and fill out paperwork so we finally get over there. To get a job so one of us has something to keep us alive. All while Mommy stays with baby at the hospital. Hopefully everything will be done within two weeks.
It’s been just one day, and it has been really hard not having Daddy around… Baby misses him badly, and Mommy misses him too. It’s sad and hard when we are forced to do things separate ways, but we do what we have to… Happier times and happier memories will come after so much hardship. Right now the important thing is giving it all we have to give Deedee a chance for living to the fullest. What is best for baby will happen, we have faith in God and trust His will.
Since baby’s new room features a TV that has an attached VCR, I took some of the old VHS movies that I still had so Deedee can be entertained a bit longer. Today I showed her Fantasia2000 and Beauty&theBeast. She's definitively into music. She loved the synchronicity between images and music, and was entranced by the triangle butterflies and the flying whales. She laughed a lot during B&B songs, especially “Be our guest”. After all that visual excitement, played some Sound of Music songs, followed by Lord of The Rings. Daddy called me up, and I put the cellular phone next to Deedee so she would hear him saying hello… Instant smile! I thought she would not recognize him since he sounds a bit odd on the phone, but she did. By the time I left, the Baby Einsteins hits were playing… and baby was getting ready for a nice nap after taking some coughing therapy. Today was one of those days that I would have stayed the whole night with her…
Outside, met the lady with the other SMA kid who was supposed to go out of the hospital like a month ago. She’s been having issues with the medical insurance, and then with the people in charge of the public residence where she lives (she needed permits so she could have an electric generator for the baby’s ventilator and other equipment). The good thing is that now there will be a basis for babies with ventilators on public housing projects. The bad thing is everyone making things harder than they already are (the usual).
Hopefully I can contact other moms within the island…I need a list of babies/kids with SMA so I can contact them with FSMA information. I want to begin a chapter of this organization within the isle as I realize that there is deep need for information about this illness for both parents and healthcare professionals. The main problem to get the information on the parents of SMA kids within Puerto Rico is the law that forbids medical information disclosure… I know most people wont mind, but the law is the law… So I’m hoping that they can reach me by word of mouth or that some therapists or doctors passing along my contact info so they reach me if they are interested in the SMA support group.
Families of SMA is for neutral information (facts about all treatment alternatives for SMA, tract, non-invasive, equipment pool, doctors lists, and research), parents support, and funding SMA research (like the ongoing Project Cure SMA). My being interested in doing a PR chapter has no value if no one else is interested, so I hope others join for this effort. I need professionals who would like to be part of all this. I’ll send out letters with information about this later on, after Deedee’s fate is decided. Right now all my energy should be focused on our DeeVa. Next in line is the FSMA PR Chapter.
Wrapping things up: Daddy is in New Jersey making things more tangible for the fate of baby, Mommy is plotting survival on NJ or in PR, and DeeVa is flawlessly behaving as a "super model in training" captivating everyone with her lovely eyes and her smile... while missing Daddy... Our hearts keep guiding the way as they are filled with love and hope.
The show goes on... Woah! We KNOW drama!
10-4
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