Wynnie Breathing and transition care

You can't tell but Wynnie is smiling under his mask

Wynnie's breathing difficulties have not improved so we took him to the pulmonologist yesterday.  After walking into the room the doctor immediately told us Wynnie was working entirely too hard to breathe.  By forcing out so much pressure to breathe he was burning too many calories, running the risk of dehydration and possibly retaining too much carbon dioxide in his system.

We went to the ER and were met by friendly familiar faces (nurses from past hospitalizations that recognized Wynnie).  After being placed on IV, tanking down many times on his O2 levels and his heart rate, he finally calmed down once we moved up to the PICU where he was able to sleep on my chest.  Then when I left at 8:30 this morning to run home and take a quick shower and pack clothes for the next couple of days, he became very upset with anyone touching him and without seeing me.  The only people he doesn't mind being with is Chris or myself… other than that he gets really really mad if anyone else gets near him.  He has been placed on a bipap-looking ventilator and cranked his O2 to 10 liters to maintain safe levels.  Normally at home he is on 1-1.5 liters.  We are trying to wean him down to a more manageable oxygen level so that we can manage it at home instead of staying here for weeks on end like we did last year.

We spoke with the hospital staff and learned on how we can transition Wynnie home without putting him through any painful or traumatic invasive intubations, surgeries or unnecessary procedures.  It's called Palliative/Hospice Care.  When we heard hospice I said "We're not ready to throw the towel in yet!" and they explained to us that adult hospice vs pediatric hospice are completely different.  For us that would mean that he would go home and continue with his current nursing and respite care staff.  But in addition to that, he would also have a nurse practitioner fully familiar with him and his case on call 24-7.  This NP could write us scripts for antibiotics, steroids, comfort meds and give us direction on what to do without us always having to rush to the doctors office, calling their office 3-4 times per week or rushing him to the ER every time he takes a turn.  This NP would visit our home once a week to check up on his condition, check his vitals and make recommendations on treatment to us and his nursing staff.

We've been so lucky to dodge so many bullets with both Dorian and Wynn, it was finally time to have those tough questions answered and have a more definitive game plan moving forward.  So thankful they were able to put our concerns at ease about the next transitional steps and hoping we can hopefully get Wynnie stable enough to go home by the weekend.  Prayers please for that to happen!  I was upset when they were first suggested home based hospice care but once they explained it, it just felt like the right thing to do.  Our main goal is the keep Wynnie as happy and as healthy as possible while still being a part of the family as much as possible.  I think this is a great compromise since Dori can't stop asking for Wynnie ever since yesterday.  So thankful for Chris and the strong great father that he has turned out to be.  Thankful for Dori who likes to keep things light and festive at home.  Blessed beyond measure with the love and loyalty that Ben and Alex feel for their baby brothers.  Also so appreciative for our friends, family and team of nurses that help us manage our fun family circus at home.  This journey is a little bit easier because of all their love.

Thanks for your continued prayers.