Ups and downs… Too much information, lack of interest, comments taken the wrong way… Yup, the plate of the last couple of days… At least one thing is certain: We want to take DeeVa to NJ to make sure she is given the right treatment. We are rolling the dice, hoping to make it all possible.
YESTERDAY: Patience, patience
The morning visit went uneventful. At the afternoon visit we were told the staff supervisor wanted to meet with us (finally!). So, at the visit’s end, she appeared. The first half hour was pretty much debating over protocols in a very much defensive way… I was explained that protocols are not a rule that hospitals must follow, just guidelines and suggestions still on research… The Consensus points went down the drain following the criteria that they are not a rule… The internist made a point of DrBach being a Physician (gee, nevermind his expertise in SMA and his treating patients with SMA daily…) And from Dr Swoboda’s reply to me she just stated that cough assistance was not needed at this point, that baby used a type of bipap at a given moment, and that they have been following the right procedures based on baby’s needs for being alive.
I repeated that I was not doubting that they had saved Deedee’s life, and that they were doing their best based in their knowledge, that I just wanted them to consult with an expert in SMA… Seems that is the most offensive thing you can say to a doctor in this island… The whole condition was explained to me, the respiratory system, the issues of quality of life, the issues on nutrition, the doctors that have checked Deedee’s tests finding nothing wrong with her heart, kidneys,etc… And I repeated I did not doubt their ability but still seems I was doubted… I mentioned I trusted they were the best because of two doctor referrals and an inquisitive “Yes, who?”followed… Maybe they thought I was just saying that… When I mentioned my two friends, Ananska and Neixa, THEN the whole ambience changed.
Gee… Naming two names gave them the trust in what I was saying was not attacking them… Why that is not so reassuring for ME? (sight) They talked about transfer, and I asked if it was something needed due to lack of any resource. The answer was no. If that is so, then there is no need to transfer Deedee, within the island. It is well known that this is the best or second best pediatric hospital in the island (and that is good). The problem is the matter of expertise in the area… (Stubbornness, professional pride… Egocentrism… You name it…)
So… the outcome of the reunion? Hmmm… Baby was at 30% oxygen yesterday… She is stable. She will now face the physician and the physical therapist. And they granted the calling of the geneticist. The Mage and I decided she will stay for now where she is. If we were to transfer her to San Juan that would mean stress in many ways, plus seeing her only an hour two times a day. If she is in no need for transfer because she has everything available within the island in here, then why submit ourselves and baby to that stress? If something changes to the bad side, then it would make us go to the Metro area, but if we can stray from that, the better. At night, DeeVa was happy, playing with MrLion and mommy and daddy.
TODAY: Prelude to a Long Journey
It is the day when children go get some fresh grass to leave under the Xmas tree, for tomorrow is 3Kings Day. In the morning, DeeVa was sleeping a little, then awakened to find daddy’s gaze and smile playfully. Oxugen was at 21% (YAY!!!) Granny Millie was also around, and as the Mage was making a recount of a movie while I was singing to baby, baby decided that the show was too much and went to sleep. During the afternoon, we arrived to find MrCornellius (Yup, Kellog’s Corn Flakes character) at her feet. There had been a “parranda” and they left that as a 3King’s Day gift for baby. So we started playing around with MrCornellius, and Deedee loved it. She was not scared of him, actually following with her gaze everywhere he turned and ran and danced… Music, songs, MrLion and MrCornellius left Deedee beat. She fall sound asleep just in time as the visit hour ended…
At nighttime, the geneticist went in, saw Deedee and then spoke to us. He mentioned Utah, mentioned the basics of what we are to face, the human side to it, the not so polite things ahead... Many things reassured what we already know in our minds and in our heart. I hope he can contact DrBach and that Deedee can make it out the ICU as fast as possible so the journey ahead can begin soon. Deedee will have an added energy boost in her daily routine, which will hopefully strengthen her even more. The Mage and I had been talking much about making arrangements for a possible voyage to NJ… So based on what we heard this time, it is actually a good idea. Utah is also an option, but we have family in NJ and NY, which tips the balance that way. We just need one thing to make that possible as fast as it can be: Deedee recovering, getting out of the hospital so we can actually arrange to go.
So far, she has been strong, her will for staying has been evident, and if she chose so… who are we to deny her what she already decided? We don’t have a way to finance anything… So that will be the other challenge to actually get her the help that we think she needs. The Texas crew is finding options for traveling, organizations that may help somehow… in case her voyage needs a transfer with specialized equipment. The NY Crew will get us info on SS, Medicaid and local NJ/NY laws, aids, etc… I will sell the Hormigueros house, moving back to auntie’s place, leaving everything prepared for the imminent adventure that has been thrown at us… It is all a chess game in matters of coordinating things so we can do what is best for DeeVa. Hopefully we will get the help we need, and Fate will smile at us… rewarding our efforts with many winters of life for DeeVa… Her eyes and her smile create the light that guides us through this storm. Together, we will climb this mountain, conquering it.