There's a Light at the End of this Tunnel

It's been over two weeks since Luke's trach surgery. We praise God because Luke is doing fantastically. His trach site (stoma) is healing. He's finished fighting off the last infection. David and I are gaining solid confidence in our skill to care for him and his special needs once we get him home. It is such a relief to not have to help Luke fight for his life. It's nice to come ot the hospital and hang out with him, play with him, and care for him without having sever anxiety for what the next few hours might hold.

Our frustration over the weekend is specifically due to the hospital's plans for discharging Luke. just before Luke got his trach surgery, it was communicated to us that if Luke did well and had no complications with his surgery, and if David and I could learn all of the necessary skills and could demonstrate our competence, then the intensivists (doctors) could decide not to send us to Baylor. Our understanding was that id we had to go to Baylor it would be because the docs weren't comfortable with our skill level, and our time there would be much abbreviated from the usual learning program because we had already learned the skills.

At the beginning of last week, Dr. Meyer decided that it might be possible for Luke to go home with only his trach and without his ventilator. As a result, they delayed ordering our vent and trach supplies to see if we could wean him off the ventilator. We gladly agreed to staying another week or so in the hospital to see if we could go home without a vent. As the week went on, it became evident that Luke was not making progress on the weaning process. We resigned ourselves to following the original plan of taking Luke home from Medical City (MC) as soon as he was adjusted to his home vent. Then we got the bad news: We are definately going to have to go to Baylor because the Respiratory Therapists here at MC can't teach us all we need to know about Luke's vent. The bad news kept coming: since we were entering Baylor, we would have to go through their entire educatio program for not just the vent, but the trach as well. So it effectively doubled the amount of hoops we have to jump through to get Luke home. Information came in pieces and was inconsistent. We would only need to stay a few days while David and I took turns staying with him for 24 hour periods and demonstrated we could care for him alone if we had to...we would have to stay the entire 6 weeks to go through the program as normal participants...we would have to complete 6 trach changes, but we might be able to do them more frequently than once per week...It was a yo yo. I believe David and I have been quite flexible throughout Luke's 14 week hospital stay (so far), but we've fairly reached the end of our flexability and patience. We could not understand why all of the stakk involved in making this decision could not get together and come up with a solid plan for transferring to Baylor. It was extremely frustrating.

Yesterday afternoon we had a Family Care Conference. We had the attending intensivist, the nurse practitioner, the nurse supervisor, Dr. Kao, and the coordinator from Baylor present. I said very little during the meeting (David's much better at putting forward a solid argument; I was too emotional to say anything intelligable). David stated our frustrations. We were met with some defensiveness, but we got to say what we needed to. Most helpful was our discussion with Rocky from Baylor about what we could expect at Baylor. She told us that there would be no fudging on the 6 trach changes, and the Respiratory Thereapist there is not willing to change a trach more than twice in a week. So we're expecting a three week stay at Baylore. We might could get our pulmonologist to pull some strings once we get there, but we have yet to create a relationship with him, so we'll see.

Baylor's going to be very different. Luke will have to share a room, and visiting hours end at 8 unless you're spending the night. We'll have to change the routine we've been establishing for 14 weeks. It also sounds like we will be required to have 24 hour at home nursing care when we finally get home for at least a month-maybe as long as Luke's on a vent. I was expecting we would need at home nursing, maybe even 24 hours for the first couple of days to make sure that we were confident with everything at home and to get any questions answered that might come up. But I feel really nervous and invaded upon to have a stranger in my house around the clock every day. I'm not a super private person, but I definatelyneed more privacy than that. David and I have some investigating on this point that we need to do, but we might have to accidentally dismiss our nurse after awhile. We haven't figured out how it will work when we want to take Luke to our friends' houses or to church--Will the nurse go with us? Or will we be disallowed to take him out of the house? If that's the case, this really is a prison sentence, and now we have a jailer. I know I shouldn't see it like that. I need to be glad for the medical care and support that we will recieve, but I have lots of anxiety about having someone watch every single move I make to care for my son. I'm truly afraid of being judged by this person every time I make a mistake. We could really use some prayers to help us get adjusted to this new way of life up ahead.

We just got word that Luke won't be going anywhere this week. There are no beds at Baylor right now, so it will at least Monday before we get transferred over there. Please pray that we don't encounter anymore setbacks. Please pray that Luke stays at his current level of health and gets no more infections before we can get trransferred.

One last point. I got a healthy dose of perspective and attitude adjustment today. While David and I were indignant, feeling abused and neglected on Monday, two kids died on our unit, one of them because of heart issues. I feel ashamed that I've been complaining about a delay in taking Luke home (significant as it is) , while there are two families this week who are going home without their beloved babies. It makes me weep to think of how close we really were to losing Luke, and renew my thankfulness that Luke is still alive and growing stronger every day. God just shut my mouth. Who am I to allow myself to feel entitled to anything when life itself is never promised to us? Again I thank you all for the prayers you send up for Luke's life and health. Pleas pray for the families that lost children this week. I don't know their names.

So, there is light at the end of this tunnel. We can see it, and it grows closer all the time. By our estimates, we should be taking Luke home in 3-4 weeks! We appreciate your continued prayers as we finish up the first leg of this journey.

We pray that you are blessed as much as we have been blessed.

Rachael & David