Hospital received the CoughAssist on Wednesday. Yesterday they were reading the documentation, making sure everyone knows how to handle it. And so the plan is:
- Extubing Deedee to the BiPap today during the afternoon
- Begin the CoughAssist treatment with everything else... vibrations, chest tapping, positioning... They will probably do so tomorrow...
- Observe to see how it all works during the weekend, to see if Deedee tolerates it all
- On schedule, CPR course on Monday at midday for Mommy&DaddySlaves
Pray for Deedee, so she has the will to battle on, to be extubated successfully!
The hospital staff gathered with us on Wednesday afternoon so we are all on the same page. They worry about the NIV in PR, that if all this work they are almost certain it will be really hard to follow it at home as we wont have the people to back us up in case of emergency... a redundancy that can end up in a hospital where the tract will be done no matter what. They feel that is we are to move to the US, then if extubation succeeds it is the right time to take her on the journey. They also feel that if extubation fails, a tracheotomy is the best solution if she is to stay within the island, as it is the only way that people here are used to dealing with... If it fails we will face the two options: Travel, tract, or fighting the system to the end... And the choice must be done within the next two weeks. Time is running out.
On lighter news, the CoughAssist arrival was a happy event. When the respiratory therapist explained everything about it (validating everything we have been telling them that it does!), how it has been used in elders on the Veterans Hospital, how elders use it at home with much success... The staff was happy, wanted to know more about it, and is already thinking of uses in the floor with other ventilator-dependant kids. So... All in all, fighting for the machine was worth it. We hope it really works its miracle on Deedee, and that it can be put to use for the advantage of other kids. It is the first time that they will use it on infants & children here within the isle. That is exciting in itself... A bit scary, but exciting nevertheless...
Yesterday, the social worker took this picture of Deedee to post an actualized "Needs help" message. Deedee looks puzzled and happy, so enjoy that lovely look. Baby has been a bit fussy, crying a lot, having tummy trouble... But always her eyes light up each time she sees DaddySlave, and each time the Bear-ly-Princess gets in her hand! Kuddos to our little trooper! May God bring us all strenght for the days to come!
10-4
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