Home Again - Kari's Update

Hey all! Kari posted this yesterday. It answers the questions many of us have had about how long the trach will be in. I have a feeling updates will be fewer now, probably coming around his dr's appointments. But, I'll try to continue to keep you posted, either through Kari's notes or brief updates as I hear them. Thanks again for praying! God has worked - and continues to do so - in amazing ways!

What is it like to be home with a trach patient? Not much different for the trach patient himself. He's back to practicing with his big boy underwear and toddler potty. Today, he played outside with his brother. He asked his sister to help him set up his train set. The difference for the rest of us is that our adult eyes are always close by. Not that we could stop the two-year-old from behaving exactly the way a two-year-old will, but just for our peace of mind.

We brought William home Sunday afternoon. The observed 24-hour care at the hospital started at 10:15 AM Saturday when we finished our trach training and pulled off our sterile gloves. At 10:15 AM Sunday, they were handing us our discharge papers to sign. Somehow, I'd thought they wouldn't let us go that easily. By Monday morning, John might have been wishing they hadn't!

The other two kids and my mom were recovering from a stomach virus, so John and I went home with William alone. We left the others at John's parents' house to try to avoid infecting William. I took the afternoon to unpack and set up the kids' room to handle William's equipment. The baskets of stuffed animals on Anna Kathryn's dresser gave way to baskets of trach care paraphernalia. The machines and tubing that were to provide warm humid air to William's lungs at night were placed on the toy chest at the end of his bed. The suction machine went on the floor in between the twins' toddler beds. Then we took a deep breath and prepared to settle our boy down for the night. We were nervous about messing something up, but we followed the steps we were given and although it took us a while, it went fine.

William was happy to see his house and his bed. If he wondered where his siblings were, he didn't say so. I think it helped him later to have had that time with us to realize and accept that his hospital equipment had followed him home. Once he discovered which machine was used to suction out his trach, he took to leading us by the finger and pointing to it when the mucus build-up in his chest started to bother him. He now knows how to turn on the machine, and even goes to fetch me a little cup of water to rinse out the tubing afterwards. The new item was the apnea monitor. I told William that his "flashlight" on his toe was being replaced by this cool belt around his chest. He wasn't impressed, but when it came time to attach the black wire to the connection marked with a black dot, and the white wire next to the white dot, he took over the job for us. He's done that part every night since.

Mom and the kids came home Tuesday morning. William and I came out to meet them, and Stephen climbed up the front steps to us with his trademark happy little grin. He cocked his head at William's neck. "That's William's trach," I explained. "Trache!" he replied, reaching out a finger. "Don't touch it; it's making William all better." "Okay!" Stephen replied again, then put out his arms and hugged his brother. By Wednesday, they were popping each other on the arm like best enemies again.

My friend Kelly's dad passed away from cancer this week, and I left the kids home with my mom while I went to the funeral Wednesday night. This was one of the few times in the past two weeks I'd left William, and leaving him really gave evidence to how closely attached he's become to me. When I am home, he plays and eats and acts very close to normal, though he does come to me for hugs much more often than before. But he rarely acts stressed anymore. I've worked very hard to make him feel comfortable about the changes he's gone through. However, probably because I've been primarily by his side from the moment he woke up in ICU, William seems to need me around him so that he can keep feeling like normal.

When I arrived home from the funeral, he stood in the hallway in his sleep shirt, apnea wires dangling around his legs, with a very distressed look on his face. I gathered him up and we rocked in my glider rocker for a while. I sang to him the little bedtime song I made up when Anna Kathryn was little, because it always comforts the children. When I finished, he looked up at me and mouthed a request. I put my head down and he whispered it again, "Jesus!" Penny had sung Jesus Loves Me to William when he was fighting with all his strength for breath in the nurse's station at church two weeks before. She sang it over and over again, and when she was pulled away from him she told them to keep singing Jesus Loves Me because it relaxed him. William may never remember a thing from that day, but I'll bet he'll always be drawn to that song without ever fully understanding why. I sang it through and he smiled, then asked for it again, and again. I put him in his bed, and he stayed.

One exciting development is that William is starting to adjust to his little "talker" as we call it. It's a little valve that attaches to his trach, allowing him to draw in air, and forcing him to release air through his mouth. Suddenly, his silent coughs are loud, and he squeals instead of the silent screams we've been getting used to. The first word he said with the valve was "water." He likes being able to talk with it, but because he has to work harder to exhale than inhale, it makes him somewhat claustrophobic. He discovered that if he exhales and makes a noise at the same time, it's not as scary, so he's taken to wandering about the house and yard saying "Aaahhhh!" over and over. He sounds alternatively like a raptor or an elephant, depending on the velocity. With all that practice, he's learning how to make sounds without the valve, too. Words are harder to form, but he works at pushing enough air through to make the sound he wants. He sounds a bit high-pitched and tinny. I think some of that high-pitched sound is his own self-consciousness about the trach.

Again, thank you for your prayers. Ongoing, please pray for the continued healing of his injury. He will see his surgeon again in a week. Later, when they go in to take a look at the site, they will look to see how much space his scar tissue has taken up. If there isn't sufficient space left for good air flow, they will have to leave the trach in for a while and work on alternatives to minimize the scar tissue. If there is minimal scar tissue, they will be able to remove the trach, presumably sometime in July.

God has showered us with His amazing grace during this time of need. We have keenly felt all the prayers of His saints on our behalf, especially as the days continue and various details have to be handled for William's ongoing care. This experience has not been the nightmare it could have been. It continues to be a miracle. I am starting to come out of the surreal state of mind I have been in throughout, and the dreams and flashbacks I was told to expect have started to interrupt my sleep. Those will have to work their way through my psyche, I'm sure, but I'm just as sure that Satan would love to take the miracle and try to make a mockery of it by putting stresses and strains on our family over the days ahead. Thank you for your continued prayers as we work our way through the next several weeks, and try to let our little ones get back to as normal a life as they can have right now.

We're glad to have our miracle home again.


Ahhhh, thanks for the update :0)


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