Saturday, February 2, 2008
The summary of it all:
As we arrived they had started the trial to extube Deedee. They put on the biPap with a nasal mask. Deedee was struggling, her mouth was open so the air escaped through her mouth... She was given an hour and was intubated again as the doctor was unease about her paleness and her struggle to breathe. So, they intubated via nose this time, so her mouth is clear (I dont know what difference that makes... nostril intubation is more difficult by far and she already has a g-tube for feeding...)... And once again we were given the speech of the easy way of handling a tracheotomy, as it ensures neurons are not lost and it grants peace of mind in that matter plus it is easier to maintain a patient with a tract... The facts on doctors having little experience doing proper intubation of babies, the chances of something going wrong... Everything is better and safer with a tract... (Sight) The doctor's recommendation is to tract baby. But they will try extubing her on Monday using a full mask covering nose and mouth...
Ok, so we saw a full-staff effort. Well, almost full... We wanted baby to be safely extubed by having the certainty of an expert, DrSchroth, coaching the process. DrSchroth had no problem with that, in fact she has been quite available. But the hospital staff just WONT call her. What they give me is that they are experts with XYZ years of experience in their fields, that this is not the first SMA patient they have and they have the know how to extubate a patient...
Well, I dont argue their knowledge and experience BUT they have NO experience performing the nonInvasive approach, they don't have hands on training on the synchronicity of some events that allow a proper extubation to BiPap on these babies... They have never used a cough assist on a baby (and argue that settings should be 20/20, as 30 or 40 are too high for a small baby)... And I think that they could do a succesful extubation if only they followed experience on that area, period. With their experience and knowledge, and the right guide, maybe things would be so different! But the unwillingness to give a call, to accept another professional's instructions knowing that that other professional IS an SMA expert is more than appalling! I call it stubbornness, being nearsighted... among other things I should not post...
So... We are back to work... Less days to make a transfer, for a week has passed and now we have 2 weeks to get Deedee transferred to US Mainland. We contacted some family members to see if they can actually move something in their nearby hospital so Deedee can be accepted. We send in help requests to charity flights that some parents sent me... to see if by any chance someone can help us. We need a one way ambulance flight, Destination: Newark or Madison. No trip back to the island, as we are to stay there. We are moving some people to see if they get us some more donations... So far we have collected $7,000. We need to reach $28,000 if we are to actually pay for an ambulance flight... And we are not adding up medical expenses and mom & dad expenses... For stay we are to contact the RonaldMcDonald Foundation, but first we need to confirm a transfer date... Everything is a chain. I still have to contact Ester at NJ and the social worker at Madison... Time is running out.
Choices, difficult things... But nothing is impossible. We keep climbing the mountain with faith, as we know that truth and love guides our path. And hope shines bright before our eyes.
Posted by Vierna at 4:18 PM