Dr. Mattie ready to go!
Demonstrating his excellent mobility!
And blowing you all a kiss to thank you for praying.
We have completed 2 out of 4 the trainings necessary before we go home. This week we’ll have our final training on the vent and also take Trach CPR. One Saturday, John and I will go in sometime in the afternoon and stay with Mattie as his primary care givers for 48 hours. Basically the medical staff will be available if we have questions, but we’ll be on our own otherwise, giving all his meds, keeping up with his feeds, and monitoring his respiratory status on the vent.
We’ll go home Monday evening and then head back in on Tuesday for his DISCHARGE!
I’ve had a few Frequently Asked Questions that I’d like to tackle:
1. How long will Mattie have a Trach and need to be on a Vent? Well, we don’t really know. Mattie has brochomalasia which is a result of having been intubated as a newborn during a severe illness. The ventilator saved his life but also caused damage which takes time to heal. We have been told that he may need the support of a ventilator for another year or two. There will be a gradual but steady weaning process that takes place in the mean time. His need for oxygen will eventually be eliminated, he may end up only needing ventilator support for a portion of the day. Some kids get to the point where they are only on the vent when they are resting at night. He will also get to the point where he has the Trach but doesn’t need the ventilator (where he will be breathing on his own completely but still through the airway provided by his tracheostomy. And then eventually, he will be decanulated, the opening in his throat will heal over, and he’ll be a free man!
2. What happens if the power goes out? Well, first of all the power company will have us on a “restore power first” list. I’m sure our whole neighborhood will be grateful for that! And then we have various backup sources. We have a 3 hour battery and a 9 hour battery, and the vent can be plugged in to the van’s car charger. In the event of a long term outage, we would just have to go to the hospital with him.
3. Can he go outside? YES! He can go anywhere that we go. We can take him outside, to the zoo, to church. As we get more and more comfortable, we’ve been told that being on the go will become like second nature to us. Of course, we’ll travel in style with a lot of accessories! We’ve been blessed though with an amazing custom stroller that was a double sit and stand stroller. It has been converted and has a wooden shelf to support and store his vent, feeding pump and even has a hole cut out for the oxygen tank.
4. Do you have help at home? YES! Because Mattie is on a home vent, he qualifies for home nursing. The first three weeks that we are home, the goal is to have 24 hrs/day care. After that we will back down to 20 hrs/two weeks, and then will land at 16 hrs/week. As we grow more and more comfortable, we may choose to back that down even further. We’ll see.
5. Are the kids excited about Mattie’s homecoming? Excited is not the word for it! They can hardly wait. We are counting the days and so hopefully that this may actually happen this time! We’ve visited as a family a lot and they are all so good with him. We can hardly wait for Mattie to experience life in our family 24/7!
Any other questions?