Parker’s Place

Last week we went to Cincinnati for Parker’s first follow up appointments since his surgery. We had two appointments. On Tuesday we went to voice clinic. At this clinic they did a few things to evaluate his vocal quality. First off, they took us into a sound room and recorded his voice. Parker doesn’t exactly “speak” on command, so we had to resort to some fun and games with bubbles and tickling to get him to squeak and giggle. They record the voice and evaluate its volume, strength and tone.

Next, we did a video scope of his vocal cords. This isn’t the most fun part of the visit as it requires a large fiberoptic camera to go in through the nose and down the throat to just above the cords. It is actually pretty interesting for us to see because we get to watch it real time. At one point Parker coughed up some nice lung snot that (on the screen) appeared to be flying off the screen and into my face. I ducked . . . causing some chuckles with the doctor and speech pathologists who were in the room. I guess they are used to snot bullets on screen. I’m used to snot bullets from the trach and with those you’d better duck or you will be covered!

The consensus was at voice clinic that anatomically everything looks perfect. The doctor believes that there is no reason that Parker shouldn’t have a perfect voice. At this point, he just needs to learn how to use his voice and manipulate his mouth and the air in it with purpose. He will begin speech therapy in a few weeks. In the meantime, we are working hard to teach ourselves sign language and it has been a lot of fun. He’s learned a lot of important words . . . hungry, eat, drink, potty, help, NO!, done, sleep, book, etc. He’s also learned some words that don’t seem so important . . . weiner and porcupine come to mind. I shouldn’t be surprised, really. He is a boy after all!

On Wednesday, Parker went back in the OR for a rigid bronchoscopy. We knew going in that if they saw any issues that could be resolved that they would take care of them on the spot. Potential issues would be granulation tissue or potentially the airway would need to be expanded (think balloon angioplasty). When the scope took longer than usual I started to get worried that they’d had to do something extra. All of my worry was for naught . . . the doctor said that Parker’s airway looked PERFECT! Music to our ears. Perfect voice potential, perfect airway! It turned out that the extra time was from trying to get his IV started. They had to stick him four times to get it. I’m glad he was asleep for that part.

After our appointments we went on to Alabama for a few days to visit Ian’s mom. Now we are in Indiana for a few days to visit my parents. I have a lot of great pictures to share . . . I will post a slide show when we get home.

I have to admit that Ian and I still look at each other and occasionally say “wow, three months ago we’d be doing this with a suction machine, isn’t this nice!” I can’t tell you how much we hope that day comes for all of our trach friends.

I know, I know. I’ve been remiss. That and a little busy. Between enjoying Parker’s newfound voice and preparing to move next week I haven’t had time to post and confirm that we are, in fact, home. Parker has not missed a beat. He’s up to his old antics and we are reasonably certain that once he actually starts talking that he will take after the Turpin side of the family and never shut up. I promise to post pictures of his naked neck, just as soon as I find my camera and take some. Stay tuned.

Today is Mother’s Day. In the last year and a half I’ve had the pleasure to meet a lot of amazing mothers. Mothers who endure so much more than I did with Parker and who don’t complain nearly as much as I did. One of those mother’s is Angie, her son Ayden has a very rare form of dwarfism and is in Cincinnati recovering from an LTP that he had on Friday. Ayden is 4 years old. While we were in the hospital the doctors told us how over the last few years they’ve really been pushing the envelope on how long they sedate and ventilate LTP patients. The ventilator can cause airway issues in and of itself and longterm use of sedatives and paralytic drugs don’t come without their consequences either. One day they mentioned that they’ve been able to rapidly wean kids as young as 4 off of the ventilator early and keep them just on pain management drugs. They have to be mature. They have to be willing to lie still and not compromise the graft site. They have to understand what is happening to them and what all those tubes and wires are for. These are not things we could see any of our children handling at the tender age of 4! Today, Angie got a wonderful Mother’s Day present. Ayden has been awake today! When I read this on Ayden’s blog it brought me to tears. Angie went on to talk about how the pictures of Parker during his surgery helped Ayden prepare and understand what was going to happen, they helped him be awake today. You can see Ayden’s blog here: www.aydenava.blogspot.com

Someone posted this on my trach forum. I can only truly relate to parts of the story. But, I now know too many moms who can relate to the whole thing. Happy Mother’s Day to each of them!

Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe
points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close. The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of
devastating news. It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

There’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper
to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, the
well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one-saluting
you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.              
You’re a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go

We are back from the OR. I don’t think Parker has ever been so happy to see a graham cracker in his life!

The scope went well. His airway looks great and the best news: we don’t have to come back for three months! Of course, if we have any issues, concerns or questions we can come back sooner but we don’t have to!

We will stay in the hospital tonight and get discharged in the morning. Ian will be here tomorrow to pick us up and we will head to Michigan for the night and then on to Whitby and big brothers Thursday. I anticipate a crazy homecoming.

We have had a busy few days. On Saturday, Grampa Ed and Nana (Ian’s dad and his wife) came to visit. On Sunday, Grandma and Grandpa “Bug” (Suzanne’s parents) came to visit. Today, our friend Robin from the tracheostomy forum came to visit. Robin is a trached adult. She was one of Dr. Cotton’s first patients when he came to Cincinnati (after his Fellowship at Sick Kids). He still follows her to this day, so she was here for a visit. The forum is for the families of kids who are trached but I can tell you that it is absolutely invaluable to have Robin and the couple of other adults with trachs. They can answer the things we wonder about: what does it feel like to get suctioned or have your trach changed? How does it feel to eat? Etc. Robin even brought us a loaf of homemade bread which we plan to break into soon!

Parker didn’t go into the OR today. He is scheduled for 8:45 a.m. tomorrow. Hopefully there will be no “news” from the scope and a definitive time will be set for his release from the hospital. He’s starting to get a little stir crazy and bored I think. Can’t say that I blame him. I know that seeing his brothers will be a big push to get him closer to his former strength and stamina. And getting an uninterrupted nap won’t hurt either.

I spent a long time on the phone today with a nursery school in Grand Blanc where we are moving. We didn’t put the other boys in a program when they were two years old but we (along with the speech therapists) think that getting him into a program next year will help his language development. This school already incorporates sign language into their toddler program and they seemed very willing to learn more and help Parker, should we enroll him. Our goal is to have Parker’s language, vocabulary, and voice quality as “typical” as possible by the time he enrolls in Kindergarten.

I finally got Parker asleep this afternoon when someone banged on the door and asked if we had any dirty linens. Of course, Parker woke. As soon as I got him back to sleep the respiratory therapist came in and announced it was time for his breathing treatment. Seeing that he was asleep she said I could give it when he woke up. That was nice but she forgot to use her indoor voice! Again, back to sleep and you guessed it . . . time for vitals. I tried again but when the ENT came in to check on him and pointed out that it was 4 p.m. and that wasn’t a good time to start a nap, I gave up.

I really, really like hospitals that have afternoon quiet time policies. It makes a lot of sense. For stable kids who really need naps, having a guaranteed break from all of the hullabaloo is a good thing. Maybe tomorrow!

Parker had a good day. He did some walking. His legs are not strong or stable and he’s finally realized that holding mommy’s hand isn’t a bad thing. We went for a wagon ride and even spent some time in the play room. ENT said they might be willing to let him venture off of the floor over the weekend which means he could go down to the cafeteria or just around some of the other places in the hospital. It reminds me of the first time we got to take him out of his hospital room after he was born. It was Christmas day. Sick Kids has this big glass atrium and I will never forget when the sunshine hit his hair for the first time. We knew he was a redhead . . . but not like that. I don’t think heading down to the cafeteria this time will be quite as breathtaking but it will still be a big milestone.

Ian made it up to the big boys. They were beyond excited to see daddy and go swimming. Barbara is glad to have her own room for the night, I think! Tomorrow they will go see our new house. I will be anxious to hear their thoughts, see some more pictures, and also hear Barbara’s thoughts on it.

Editing to add: It is now 9 p.m. and the overnight respiratory therapist just came in and not only did he forget to use his indoor voice, he turned all of the lights on! I feel a long night coming on.

For dinner, Parker at a whole yogurt, a few bites of grean beans and a quarter cup of pureed macaroni and cheese slop. The good news is we can go tonight without putting the feeding tube back in. The bad news is my back is killing me. Why is my back killing me, you ask? Because after this meal, Parker suddenly remembered that two weeks ago he used to run around, jump, dance, climb on anything he get his hands on, open and shut drawers and generally act like a crazy child; and that means that he wasted no time in getting back in the swing of things.

Unfortunately for Parker, and my back, his legs weren’t cooperating. It took him about 90 minutes of hard work to get to a point where he could truly walk (albeit wobbly) without help. My back held out for about 10 minutes before the nurses had to mechanically pull me out of the hunched over to help your knee high kid position. Adding insult to back injury. Parker could NOT understand why I insisted on holding on to him at all times and kept shoving my hands away. Thankfully I don’t think we are in serious danger of a concussion anymore, so outings tomorrow should be less strenuous.

Speaking of tomorrow. Our other friend Tommy (see his blog on the right) is having his LTP tomorrow. He is having a double stange which means he will keep his trach in an have it removed in a few months or so. Tommy is a heart/lung patient so after he gets his trach out, he has a few more major surgeries over the next year. Getting the trach out will be a big hurdle though and I’m really excited for him and his entire family. Please keep them in your thoughts.

On our walk around the floor today we met Noah. He’s four and a liver transplant kid. He is from Tennessee and flew here on a jet. He (and his grandmother) told me that an ambulance took him from the hospital to the airport and then he flew on a jet to Cincinnati. I’m anxious to get to know him and learn more of his story over the next few days. He immediately noticed Parker’s “brave scar” and wanted to know if he used to have a trach. (Smart kid!) It turns out that after his transplant they lived for six months at the Ronald McDonald house and he met a few other kids with trachs. Noah is going to be a big brother soon. He hopes he gets a sister. Right now he calls his baby “Pickles.”

We made it. Parker graduated to the airway floor at about 1 p.m. today. Here he can play on a mat on the floor, go to the play room, and take wagon rides. He is still very weak and has a little interest in eating. So we will work on those things over the next few days.

He doesn’t want to stand on his feet but he is beginning to crawl short distances. For now, he needs to be hooked up to monitors so he doesn’t have much room to roam. They say it sometimes takes more than a  month to regain full strength and activity levels after the surgery.

As for eating: he pulled his feeding tube out just before we came down to the airway floor. The ICU doctors wanted it put right back in but we asked that it stay out until we got down here. He’s been on continous feeds so he just doesn’t feel hungry. We wanted to give him a chance to “want” to eat. If need be, we will put the tube in tonight and supplement his feeds overnight. But, one of the requirements before going home is eating normally. We did get him to drink some vanilla pediasure and eat some of that mixed with rice cereal, so we are started but have a long ways to go in that department.

In other news, Ian left today to go to Michigan. Some of you know this but most of you don’t. About a week before we came here for the surgery we learned that GM will be transferring Ian to a plant in Flint, Michigan. Thankfully, we have a really good sense of humor because, of course, the timing couldn’t be worse. Just after the surgery Ian was up there for a day to meet with his future colleagues and I found a few houses online that looked interesting. On a whim, Ian called the realtor from the one that we liked the best and was able to see it. Thank goodness he did that because they need us to move the end of May. So, we’ve been busy buying a house from the hospital.

So, Ian is going to be at his new plant tomorrow and his mom will bring the boys in the afternoon to Sarnia which is just over the border. They are going to swim and play and then go see the new house and pick out their new rooms. It will be a much needed break for the big boys (and for Ian.)

Parker has had a great day. He didn’t sleep much last night so mommy didn’t sleep much either, but that is ok. He’s been up, reading, eating and drinking a tiny bit. He’s started to clue in that people in scrubs come in the room to do annoying things so he plays possum.

They are going to keep him in the ICU overnight tonight but if all goes well, we will move down to the airway floor as soon as a room is ready tomorrow. Being down there will allow him a little more freedom. He can come off of some of the monitors and visit the play room and go for wagon rides around the floor. Eventually, they might even let him venture further out into the cafeteria!

Right now the plan is that on Monday he will have another scope. If things go well until then and look good at that time, he will be released from the hospital. Depending on everyone’s comfort level, they may ask us to stick around here for a few days or we may be allowed to go home.

Today we saw Colin and his dad. They flew in last night for their first follow up scope. Colin looks great, his voice sounded great, and he was clearly happy to have been home to see his sisters and sleep in his own bed.

My friend Jill, who grew up in Cincinnati, is in town to visit her parents. She came by for a visit today and we had a fun lunch out and a trip to Target. Good old Target!

They pulled the ventilator tube at 11 a.m. this morning. This time around it was much calmer and there has been a lot less “excitement,” which is a good thing. Largely this is due to using a completely different drug schema. Of course, as those meds start to wear off we may see things change but hopefully not. They now have a lot of experience with Parker and know that he defies conventional logic with meds.

Parker is still on supplemental oxygen but a minimal amount. They will start to wean that as soon as they see that his blood gas levels are ok. The other big news is that so far he has very, very little stridor. Which is a great thing. Stridor is a raspy course sound when breathing that is mostly attributed to “turbulence” in the airway- swelling, scar tissue, etc.

These are all good news but, as you know, we are definitely NOT out of the woods yet.

Parker did it again. He’s officially piqued the interest of the entire department. We had a lot more than usual participants in the after-scope conversation.

The good news is that the graft site looks great. It has started to grow mucosa which means it is integrating nicely into Parker’s airway. There was a little swelling but nothing remarkable.

The bad news is that we don’t have any concrete answers about why Parker had this episode. There is some renewed interest in the vocal cords and whether or not they are working intermittantly. This would be highly unusual but not unheard of.

For now the plan is to extubate in the morning and see how it goes. Because the graft site is stronger this time around the PICU doctors will have the freedom to try some things that they couldn’t do last time. They can use positive pressure to help push the airway open if he has a bigger episode. Doing this effectively buys us time to get past the episode and avoid reintubation. Of course, if the episodes keep happening than something else needs to happen but the hope is that they won’t. If they do, the plan is to get ENT to do a stat scope bedside during an episode to see exactly what the cords are doing.

Wish us luck tomorrow! We hope the withdrawal is less and the wake-up is speedier since this time around he’s only been sedated for 72 hours.