Saturday, May 30, 2009

Insiny and Other Tidbits

We greatly enjoyed our little break from school, and it has actually re-energized us as we've gotten back in the swing of things this week. In addition to having a good few days of school, we've spent our time fighting fleas and roaches, enjoying the fellowship of some friends, and soaking in the last little bits of spring weather before the summer heat.

A couple of weeks ago I posted my school room reorganization process and shared that I still had a couple of things to get done. A friend from church saw the post and passed on a few things that helped a bunch! One was this precious organizer quilt with pockets - is that not awesome? And, in my kids' favorite colors, too - purple (Olivia), pink (Angela), and red (Steven)! The pockets are the perfect size for holding all of our little loose flashcards, and the only ones that were too big for it already had another home by the time we hung the quilt. So, we're good to go!

She also blessed us with some leftover material and seat cushions so that the kids can have cushions on their school chairs! How sweet! I haven't quite gotten those made yet thanks to the fact that my sewing table has been buried in started projects for a while - I am trying to whittle those down and then I'll get these made. But, I'm excited! They'll be great! Thanks, Lindy!

Finally, I want to share something that Olivia wrote this week. We just finished reading a book entitled Frindle about a fifth grade boy who decided to try to outwit his English teacher by making up a new word! It was such a fun book! To follow up our reading experience, Olivia made up a new word and wrote it into a descriptive paragraph. See what you think...

Insiny is a neat food. It is made from hard, small, yellow kernals that explode when they get really hot. Then they become white and fluffy. You season the ensiny with butter, white cheddar, caramel, or anything you want. And when you're done making that delicious ensiny, you eat it up. Ensiny is yummy!

So, gather your family around a big bowl of insiny and have a great weekend!

Friday, May 29, 2009

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.

Thursday, May 28, 2009

Olivia's Day

Tuesday was such a fun day! It was the first birthday we've had in a while that didn't fall on a church day. So, we were actually able to do a few things scattered throughout the day to celebrate Olivia!

We had to start the day with our chores because such is the nature of life, birthday or no. Olivia finished her chores quickly because she wanted to help decorate her cake. When she realized that I needed to fold laundry before I could start on the cake, she jumped right in and helped!
Once the laundry was folded, we had to do one more thing before we could start on the icing. The thing Olivia really wanted for her birthday was an apron - and how can you work in the kitchen without a good apron! Angie and I had intended to make her one, but we didn't get the chance. So, Tuesday morning we all worked together to make one for her - her first birthday present.
Then we set to work on the cake. Olivia had camera in hand to record the progress, and she also made sure I got everything right. She had designed every aspect of the cake, so I was glad to have her on hand to explain exactly what she wanted and answer some of my questions!
The finished product!
The birthday person always gets to pick a birthday meal. Olivia wanted "breakfast for supper." So, about the time we finished the cake, Doug arrived home from work and started cooking! Per Olivia's request we had delicious pancakes, scrambled eggs, peppered bacon, and our special occasion juice - pineapple orange banana juice. YUM!
Then it was birthday cake time!
And gift time! Olivia was delighted with her plastic canvas sewing kits from Steven and Angie, and was very excited about her brand new "big girl" Bible (with purple lettering, nonetheless!).
But, then Doug reached into the closet for the big surprise. Shortly after Christmas he'd found a child's training guitar on closeout at Walmart for a very manageable price. Olivia has really been wanting to learn piano and guitar, so we thought this might be a good way to work toward that goal. I don't think she was the least bit surprised...what do you think?



Now on to the adventure of all of us learning piano and guitar together! Should be fun! :-)

Tuesday, May 26, 2009

Update from Kari

I'd been trying to check Kari's Facebook page regularly for an update on William, but then the weekend got away from me. This was posted Saturday night, so my assumption is that they've been home since Sunday morning! God is good!

Tomorrow, they tell us, we get to go home. Tonight, John and I will stay at the hospital together with William while we practice with our home equipment. We are both apprehensive and impatient to start the next several weeks at home with our new status quo.

When I was a child in a household of nine drama-filled children and two overstretched parents, my favorite method to help dispel family tension was to make a joke out of it. Aside from one or two disdainful sibling reactions, my efforts usually helped long enough to give us all time to step back and get some perspective. I find myself doing the same thing again--often internally--throughout this process of home training.

John and I were ready to train and move things along on Thursday, but nobody else was, apparently. The home health equipment company contacted me, but our lines got crossed and we never spoke to each other until late Thursday. They promised to deliver our equipment Friday afternoon, and show us how to use it. Our trach training was scheduled for Friday at one. John got the afternoon off, and we waited together with William.

The trach training was relatively painless, but a lot of information. John, the one who can't even talk to my chiropractor about his spine without wanting to pass out, handled it like a pro. He's not sure how much he retained, however. She promised to be available for questions as needed later. I think I retained most of what she was telling us, but I felt terribly lightheaded throughout. Later, when were were being trained on our home equipment, our responses were the same. John made sure we kept a phone number so we could ask somebody again later if we needed to. I felt like I understood everything, but when our trainer left, I sat down and put my head between my legs. Everything that was being explained to us, I knew, was leading up to Saturday's finale: taking that trach out and showing that we could put one back in properly. I couldn't get the idea of it out of my head.

Let me just relieve the pressure from the rest of you right now: the finale was drama-less. It reminds me of the time John and I rented Nicole Kidman's The Others, not knowing anything about it. During the entire suspense-filled movie, we watched terrified, unable to tear our eyes away. John was so bothered by it, he got on google trying to find out the ending so he could stop worrying. Then, as the climax of the movie unfolded, we settled back into the papasan chair we had at the time and laughed at ourselves. The reality was much nicer than the anticipation. Then we hunted down friends and family who hadn't seen it yet and made them watch in terror while we watched them. This confession has very likely told you more about John and I than you needed to know, but there you go.

I won't bother the over-sensitive by making my description of trach training too graphic, but to give you an idea of what we knew we had to do, I'll tell you what our trainer on Friday told us. The respiratory therapist on Saturday was to simply observe and talk us through the process. John and I would each be given a fresh trach. One of us would remove the one Dr. Lyman put in on Wednesday, and replace it with a new one. Then we would carefully trade places with each other, and do the process again, this time leaving it in and securing it with the ties. Each trach has a hard plastic tube at the opening attached to a soft plastic tube that follows the contour of the trachea for a few inches. Inside the soft tube and protruding from the trach hole is a hard plastic "guide" that helps place the trach. The guide has to be removed once the trach is inserted to allow the trach airway to open up for breathing. I tried to convince John to go first, but he insisted that he should go last. I couldn't think of any clever reason why I shouldn't go first, so I shut my mouth and got myself ready.

Here's how the process went:

John: Okay, Kari, go ahead.

Me: Okay.

John: Go ahead!

Me: Just a sec.

John: Just do it.

Me: Okay. Okay. Now.

John: The guide! Take out the guide! He can't breathe!!!

Me: Aahhhhh, the guide! Okay, your turn.

John:

Respiratory Therapist: You did it! That's all there is to it.

Yeah, so aside from the guide snafu, it was quite anticlimactic. William didn't need to be tied down, which is a good thing since the practiced straitjacket procedure yesterday with a sheet was woefully unsuccessful. William accepted the process better than we did when all was said and done. And believe it or not, I could do it again in a second without a single qualm. How silly is that?

Our 24-hour observed care will be over tomorrow morning at ten. Then we'll go home, set up our house to accomodate our plucky little patient, and gleefully subject our family and friends to trach training which we are now qualified to administer. They are just as nervous as we were.

There's more I was going to try to say to fill in some blanks, but I'm getting tired, my men are both snoring, and I think I'm going to pretend we're at home and wake John up to watch some late-night television with me and a bag of chips and cheese dip some sweet friends brought us today.

Thanks for all your prayers about training. Throughout these days, I've wondered several times how people get through things like this without the power of prayer and the strength of the Holy Spirit. I really felt all those prayers going up for us, and once again, each "next thing" has gone incredibly well.
Day 9 at LeBonheur. William is ready to go home whenever they get us trained to care for him!

Happy Birthday, Olivia!

Eight years (and twelve hours) ago, Doug and I saw the face of this sweet girl for the first time. We didn't even know exactly what we were going to name her at the time, and, to be honest, she seemed like a stranger. I must confess that I was a bit afraid. How would I ever learn that face? How would I ever be able to pick her out from a group of babies? How could I be a good mother if I didn't even really know my own baby?
But, she knew us! I'll never forget being awakened in the middle of the night by a cry down the hall. A nurse was rolling a baby to a room, and somehow I knew that baby was mine. Somehow, I knew that cry. I called out, "It's okay, sweetie! Mommy will feed you!" She immediately quietened! She knew my voice - after just over 24 hours, she knew my voice! She knew Doug's voice, too. At barely two weeks old, she would excitedly turn her head when she heard his voice.
And now she's eight. She's showing signs of wanting to do big girl things. She asks lots of questions and tries so hard to learn.
It seems as though it's passed in the blink of an eye - and I'm sure the next eight years will as well.
She is our creative child, putting things together in ways I never could.
She loves to draw and color, wants to learn to sew, and is learning to cook.
She loves to be a helper, and loves to serve others in so many ways. She's trying to learn how to do that in such a way as to be sensitive to those she's helping.
Her favorite color is still purple, and Bunny and Blankie are still around and loved on daily.
She adores her brother and sister, and loves home schooling because she can be home with them.
Happy, happy birthday, my precious Olivia. May you grow in the Lord in all you do this coming year. Lord, help us to raise her to love, honor, and serve You in all she does. Please grow her inside and out and give us wisdom to train her up.

We love you, Olivia!

Monday, May 25, 2009

The Weekend

How has your weekend been? I hope it's been great! Ours has really been quite good. The kids and I still have one more day of our weekend - we are taking tomorrow off, too, in honor of Olivia's birthday...but, more on that later.

On Friday we needed to head to Monroe for a trip to Sam's and to take Olivia's birthday pictures. We don't do school pictures or anything like that, but we definitely try to make sure we have a photo shoot of each child on their birthday. The girls love to go to Biedenharn Gardens in Monroe for theirs. We headed down Friday morning with the understanding that the rain wasn't supposed to move in until the afternoon. But, as we neared Monroe, the rain began to fall! We went to lunch with Doug's parents, praying for the rain to stop. Still the rain fell. So, we said our goodbyes and headed to Sam's, trying to contemplate an alternate place to take Olivia's pictures. We'd barely been in the van a few minutes when the rain stopped, the clouds parted, and some sun began to peek through! We quickly backtracked to the gardens, thinking we could get at least a few pictures. We got as many as we wanted! Such a blessing!

Here are a few of the pictures...Olivia's will come tomorrow.
When we left the gardens, the rain started again! God is so good to us - he cares about the little things like birthday pictures! Thank You, Lord!

As we were headed to Monroe, we heard from my sister Alli, asking if she could come down for the weekend! Naturally, we were thrilled to have her. She told us she'd be leaving Saturday morning. So, we got up Saturday morning and got our kitchen stuff done as quickly as possible so we could visit when she arrived.

In the meantime, my brother Ben and sister-in-law Ashley asked if they could come down for the afternoon, too! They all arrived within about thirty minutes of each other, and we had such a fun afternoon visit.

At one point in the afternoon, Olivia was sitting with Alli, and Ben sent Olivia a text message on Alli's phone. Thus began a funny "private" conversation between Ben and Alli via cell phone. Yes, we did all visit as well, but Liv had fun getting to text back and forth with Uncle Ben for a few minutes!


One of Alli's goals on this trip was to once and for all win the affections of her stubborn nephew who has, up until now, run screaming in the other direction when he's seen Aunt Alli! Who would have thought that all it would take would be a game of "Dog Pile on Aunt Alli!"
Within a few minutes of this, I heard such sweet words from Steven's mouth..."Aunt Alli, will you play with me?" I think her trip was successful!
Of course, the girls just loved the weekend with Aunt Alli. Aren't they precious!
All in all, a good time and a good weekend. Now we are off to enjoy a delicious dinner made by my wonderful hubby while I have tapped away on here! Chinese...hmmm, how's that for a Memorial Day meal? :-)


Thursday, May 21, 2009

Children's Choir Program

For the past several months the children's choir has been working very hard preparing a program for presentation. The older kids prepared a couple of songs that they sang and learned two skits. Everyone learned a couple of fun songs to go along with the skits. As with any children's program, there are always a few nerves, wondering what in the world is going to happen. But, they were fantastic! The only hitch was Steven deciding he had to have his parrot hat for the first song and wanting to sing the first song a second time! Doug managed to convince him to sing the second song wearing his parrot hat and all was well!

I got the easy part of leading in all of the songs and being available for the skits. Tina Bailey, the wonderful head lady of the children's choir did all the real work, planning the program, brainstorming the animal costumes for the Noah's Ark skit and song, and then corralling the younger kids while the older kids were doing their things. I have to say I'm glad we're done, but it was definitely exciting to see it all come together after putting the work into it. And the kids did incredibly well!

Here are the pictures...
The older kids singing one of their songs.
Unruly animals refusing to quiet down and line up for "Noah's sons." As soon as "Noah" came out and yelled, "Quiet!" every one of them sat in orderly fashion against the choir partition! Two to five year olds included! Now THAT was a miracle!
Singing "Two by Two," Steven's favorite song!
Olivia memorized all her lines for her skit, pretty much without any coaxing from me. She needed help learning one line that was more of a paragraph, but once I gave her a few tricks, she had it down in minutes. I was very proud of her for making memorization her own goal! Here she is in part of the skit she did with friends Nicole and Zach.

The song after the second skit...Steven in his parrot hat.
Angie singing with the group.
Okay, I said I would comment more on my social butterfly breaking out of his cocoon. Those of you who knew him before we moved wouldn't recognize him now! (Monticello folks, just go chat with a few of our friends in Joiner, Southaven, and Memphis - they'll tell you I'm not lying!) Steven has become incredibly and exceedingly comfortable with people at church. While I was leading the kids through the last practice before our program, Steven ran and joined Mark and Meranda, two favorite people from his growing list of favorite people . They let him play with their camera, snapping pictures to his heart's content. When he wasn't on stage singing or running around like a wild animal (only when he was supposed to - yes, even he sat perfectly during the Noah skit!), he didn't come sit with me or with Doug - he went right back to the Caters. Yes, this is the same child who would burst into tears if anyone outside of our family even spoke to him. I love it!

So, that was our program. Now it's time for at least a short break before we decide what to do next. Thanks to the little kids for cooperating so well and to the pre-teens who jumped right in and enjoyed the kids' songs while adding the fullness of the skits. It was fun!

It's All Relative - Kari's latest note

I'm sitting in a darkened hospital room, waiting for my boy to fall asleep. His grandma just came and went, with his aunt and uncle. His daddy enjoyed a late night visit. He has a heart rate monitor taped to his toe that we've convinced him is his cool flashlight. He puts out his little foot to get it attached at bedtime. Aside from some oral medication for a little ulcer in his tummy, William is med-free. They have him hooked up to an oxygen pump at night just to get some warm, damp air into his trache while he sleeps. He doesn't need the oxygen itself.

On the walls is decorated art from churches in the area, created by children who don't know William, but who I'm told are now using him as an object lesson for their friends: "Don't run in the hall, there was this little boy at church who ran. . ." One card reads, "I love Jesus, do you?" Another encourages William to get well soon. DeVry sent him a boquet of cookie bears frosted as doctors, surgeons, and nurses. We shared one for breakfast this morning. He has a bear with his name on it from the internet protection service I work for from home, a bunny from LeBonheur, and another little bear from an old friend of John's. There are cards from our Sunday School class, and a tie-dyed coffee filter William decorated in the 7th floor art class this afternoon. A Thomas the Tank Engine blanket from John's cousin hangs at the end of the bed.

Most of the gifts are stuck to the walls with surgical tape. They surround the locked hazardous waste bin, and the framed art of a seal balancing an oversized pig on his nose. There is a cabinet full of crackers and cookies, and a drawer full of snacks and chips. A shelf in the clothes closet contains about ten different kinds of drinks. The generosity and concern from our friends and even people we don't know has been overwhelming. I have a little stack of business cards for LeBonheur staff from throughout the hospital. Some of our floor nurses had already met us before we came to them, because friends of friends heard about William and sent them to the ICU to check up on us.

If I had wanted to feel sorry for myself at any time during this past week, I haven't had a moment to spare for it. It means so much to me to see William's face light up when people come to visit, which happens several times a day, plus nurses and staff. If you have seen the pictures of him this week, you know already that he is getting his old self back.

On Sunday, they moved us out of ICU. The nurses packed equipment around William in his bed, and pushed him through the hospital to his new room. I followed behind. One nurse headed back down to pick up a monitor she needed, planning to grab my bags for me so I wouldn't have to go back down. She came back up with a laugh, and told me I would have to get a wagon for all my stuff! After William was settled in, I headed back down with a cart and loaded up. There were several bags lined up along the side of our curtained partition, containing snacks and drinks from different visitors. Other bags held gifts for William. I put them on the cart and rolled it toward the double doors. I was compelled to look back one last time. A woman in the pod next to ours rocked her asthmatic son and congratulated us on getting "moved up". Another couple stood over their little one's bed, their attention completely focused on the child. In one of the glassed-in rooms along the side, a boy lay shivering in his bed, unable to get warm. He had almost died several times during our stay, his illness according to his mother being due to a degenerative disease. This wasn't his first visit. I prayed there for a moment, and closed the doors behind me.

In the ICU waiting room, I unloaded the locker I'd been given late Wednesday night. It contained more donated snacks, a change of clothes for me, my purse. When I was ready, I found myself turning back again, my eyes scanning the room for a face I'd come to know. I found her, sitting in one of the many chairs she'd used in the past few days, staring blankly at the wall. She sat alone on Sunday; sometimes her daughter was with her, or the chaplain. While our sons were in the ICU, I had offered to share my snacks with her, since we moms had to stick together. If she ever took me up on it, I never saw. I put my hand on her shoulder and told her that I would remember her in prayer, and her boy. She'd been there for over a week already. The Friday before, she'd told me, her boy had passed away for an hour before they brought him back. Her eyes seemed both hopeful and resigned. She smiled sweetly at me, and there was no bitterness. One baby was getting moved up to a room; that was something to be happy about.

On Monday, William seemed much improved. The nurses kept saying that from shift beginning to shift end, he seemed like a totally different boy. By Monday night, he was starting to resemble the little boy in the photos taped to his bed. Dr. MacDonald came by and told the nurses to unhook him from the IV and all those tubes and monitors and let him out of his bed. It was too bad John wasn't there to see it; I thought I saw a glimpse of our favorite fake doctor, House, in how he commanded and everyone jumped to make the changes.

A dog named Abby came to visit William and left her card. He was so surprised, every cell in his body was shaking, and he buried his face in my neck. I decided that the doctor was right, it was time for him to get less attached to that bed. Just like he was accepting that his voice didn't work, I think he was starting to see the bed as a security blanket. I wanted to see if getting out of the bed for a few minutes might develop some independence. I am not sure how thoroughly I thought that through on behalf of my very adaptable two-year-old. I set him down on the floor, and he wobbled on his legs as though he hadn't used them in days. Which of course he hadn't. Within minutes, he was up on his toes the way he usually walks, skipping across the room. I requested that he please walk. Please. Walk. Son.

I started to hit a wall. The adrenaline of the previous days was starting to wear off with the relief of seeing William get back to his old self. People would ask me a question, and I would have to stop them, process the question in my head, then search somewhere in my memory for an answer. I needed to sleep.

Tuesday, William was even better. Dr. Lyman, the gentle doctor who initially explained William's injury to us, then later described all that happened in surgery, came in and looked at his trach, then said something about switching it out the next day. I wasn't sure what day it was anymore--hadn't they told me he couldn't get the new one until Thursday? I wanted to stick around, but I needed sleep more. My friend Julie and her dad Benny came up to the hospital to sit with William while I went home and slept in my own bed.

I slept for eight and a half hours straight Tuesday night, and woke up thinking I could have had eight and a half more. By the time I'd had my breakfast and some orange juice, though, I was feeling much refreshed. John took me back to the hospital. Dr. Lyman had been by and ordered what he needed to switch out the trach. I was doing well on suctioning William by myself, and applying powder to heal the irritation on his neck caused by the damp air from the oxygen. The doctor came back around 3 PM, and got to work. We lay William down, and gave him a balloon to look at while his stitches were removed from the trach. He fought and wiggled. My mother-in-law saw his tears and felt for him like I did the first time I saw him cry without a sound. She felt lightheaded and sat down quickly. The child life specialist and I talked to William, and explained what was happening. The doctor worked quickly. The one part I couldn't watch was when the doctor removed the old trach and put in a new one. I know I have to be able to do that myself within the next couple of days, but it's the hardest thing for me to think about right now. I'm told I'll be an old pro at it before I leave. I'll take their word for it.

So, tomorrow we begin training on trach care. Once that's completed, we'll be home by ourselves with our boy and our truckload of equipment. As much as I would love for them to keep him here until it's all over, I'm even more eager to get home and pull my little family back together for one long group hug. We miss each other.

Tonight, I talked to William about talking through his trach. We have been practicing some sign language since Monday, but I'm told that he can learn to verbalize through the new trach, although it will not be easy to teach him at his age. I showed him on my own throat how he could put his finger over the hole and talk. William gingerly put his finger there, then refused to try it again. We practiced taking a breath then blowing. Then I suggested he take a breath and yell the next time. His response was a silent, stubborn smile. Later, I was talking to my mom who had just arrived from Minnesota. William was not getting my attention. Suddenly, he stood at my legs and looked up at me, then yelled. Yes, he yelled. And did it a second time. He didn't even cover the trach; he just yelled. I got nearly as excited about his first noise as I did a few weeks ago over his first successful potty, and we did a little dance. He was delighted at my response and tried the noise again, later. Tomorrow, we'll tell the doctor about it. Maybe he'll let us attach a filter to his trach, which I'm told will make talking even easier for William.

Isn't God amazing? One week ago tonight, I was settling myself into a chair in the ICU surrounded by beeping monitors, watching my boy in a medically induced heavy sleep, and not even daring to think what the next day might bring. Tonight, I am trying to invent ways to keep that same boy occupied tomorrow so he doesn't drive the entire hospital crazy with his energy! To God be the glory, great things He has done.
Day 3 in the ICU. Stephen and Anna Kathryn got to come visit. A very good visit.

Wednesday, May 20, 2009

Kari's Heart

I mentioned the other day that I wished I could share with you Kari's words about what they were dealing with. Well, she gave me permission to share her notes from Facebook with you. I didn't post the first one, but here are the next two, in order. Some of you might not care to read them, but some of you who are praying might be like me - you might like to know the heart of the ones you are praying for. This will show Kari's heart, that's for sure! She said she would be posting another update note soon, so when she does I will share it as well. Thanks again for praying!

When the World Becomes Ten Feet Square
Friday, May 15, 2009 at 2:47pm

There really is no "best case scenario" in the mind of a mother when it relates to her injured child. Best case would be me in the back yard with my boys this afternoon, watching them run around in big boy underwear with training potties close by. Best case would have my son climbing into bed with me this morning at 5:30 AM to snuggle on me with his blankie and Thomas the Tank Engine. But if I must be sitting by the bedside of my brave little boy in ICU, the scenario I see playing out before me is the very best I could have asked for, had I known what to ask.

Yesterday morning, William lay in his bed with a tracheostomy, sound asleep and still. He was warm and pink, and slightly swollen from the events of the night before. Within a few short hours, the paralysis drug they'd used overnight had worn off, and he began to wake up from his deep sleep. I jumped up from my chair, and put my face close to his. William's eyes fluttered open, and he looked at me, then around him. He raised his hand to eye level to see the tubing and tape that was weighing it down, and shook his arm as if to swish it away. I started to talk to him, telling him that he fell down and hurt his throat, and those tubes were there to make him all better. I used words and phrases that he was used to, as his anxiety level grew and then subsided. He mouthed "Stephen", and I told him that his brother was at school. He nodded slightly and closed his eyes.

By evening, he had awakened and fallen back to sleep several times. Because the drugs they would eventually wean him from caused some amnesia, I reminded him every time he woke up that he had an accident that that they were going to make him all better.

All around us, the nurses and doctors continued to evaluate, make changes, and adjust, always with the eventual goal of weaning him off the strong drugs and preparing him to go to "the floor". Meaning out of ICU. The CT scan had come back fine. There were no additional complications. The nurses got permission, and took him off the oxygen, and he breathed on his own with no problems. The only issue really affecting William was his confusion and distress at not understanding where he was, what was going on, and why he couldn't move or roll over or function the way he wanted. They sedated him as necessary to help calm him down.

At one point, he tried to tell me something. I didn't understand. He tried to move, to pull out the trache tube. We stopped him. He started to cry, and no sound came out. That made him panic, and his little face scrunched up, tears rolling down the sides. I put my face down to his cheek and cried with him. The nurse opened a box of kleenexes for us.

Visitors came and went all day. I appreciated every face that showed up. I didn't answer my phone. I couldn't make myself talk on the phone, so I didn’t. Not even when my mom called. I wanted to be available for everything happening right there, in our ten square feet of Operation: William. I listened to all my messages; read all the Facebook comments, replied to texts, and waited for the next thing. Each next thing just got better.

By evening, William was feisty enough that they decided to sedate him somewhat to help him sleep on his back. He wanted to roll on his tummy to sleep like he does at home, with his blankie wrapped around him. They were afraid he would damage the trache site. Because he was asleep, I decided to go home and get a shower. John stayed with William. I showered and packed myself some things. Somebody had come to the house and made my bed, rinsed my coffee pot. I fell asleep by 1:00 AM, and slept like the dead until after 6.

At 9 AM, Penny and John and I had an interview with Channel 3 News. Somebody had read my Facebook note, and passed it on to somebody else, who passed it to somebody else, and so on. While my baby lay in his bed, alive and thriving, God got the glory. People from as far away as Russia heard about William and contacted me. My pastor left me a message. I will call him back. After I call my mother back, of course. She understands.

Later this morning, they put him in my lap. He flailed around the tubes and cords and pointed to the floor, then failing that request, to his Daddy. John leaned over and hugged William, who settled back against me. The nurse filled a sippy with apple juice. I held it up to his mouth, and he stubbornly shook his head. Then with shaking hands, William took the cup from me, lifted it to his mouth, and drank. They took the tube to his stomach out of his nose. We put him back in the bed bolstered with pillows and a DVD player, and handed him some applesauce. I put the spoon to his mouth, but was rebuffed again. He took the spoon in hand, and shakily brought it to his mouth. The effort cost him, and when he dropped his hand, his fingers fell into the sauce. He licked them off, and fell sound asleep.

I don’t know how my little girl is doing. I don’t know if Stephen got over his flu bug last night. I don’t know when my mom might arrive from Minnesota, or really anything at all that is going on in the world right now. In a week or so, I’ll bring him home to my little girl and his twin brother. Tonight or tomorrow they might even come see him. Penny told me that I would learn things about priorities during this experience. I am beginning to understand her. Because right now in our little corner of ICU, I’m looking at my precious little best case scenario. He is doing great!

Thank you for all the prayers and well wishes, and for the food and offers of help. Thanks to Benny for the frequent flyer miles for my family in Minnesota. Thanks to the Mothers of Multiples for the Target gift card and for remembering to bring goodies for my other children. Thank you to John’s boss at FedEx, and to his MDs and VP, for their lunchtime visit and support. Thank you to the many people who have stopped by, to the thousands who have been praying non-stop since Wednesday night, for the phone calls and messages and notes. We are reading all of them. I am bolstered by this, and by the knowledge that God’s hands are so much bigger and better than mine. When I can’t hold my child, He always will.
The comment I seem to receive the most in the past few days is amazement at my presence of mind and peace in the face of such upheaval. My response to that is that nothing I have done or felt since William's injury has been normal for me. I'm not an amazing mom. I'm just a mom, like all of these other moms in the ICU, waiting and praying for her little boy to heal.

My personality is naturally calm. I choose my battles; I am quick to make decisions, yet rarely impulsive. I am very internal. Even shy. My parents saw this about me as a child, and made sure that I had plenty of experience with public speaking and communication. They enrolled me in writing and speaking contests as my primary educators--homeschooling me and my 8 other siblings for most of our grade school years. I can speak publicly when I have to, and I see it as a challenge I want to master; it’s like my personal Mount Everest. But writing comes naturally to me. I write the way I think. And I've always done a lot of thinking.

Wednesday night will always have a haze over it for me. I wrote on Thursday what I knew and had been told because I knew that the haze would probably grow rather than recede when it comes to remembering the events of that evening. There are one or two things cemented in my brain. The rest is peripheral. I don't need it. I just praise the Lord that He gave me the grace that night going forward; grace that He promised he would give to His children in just the right measure to meet the need. God's presence in my life has been a constant for me since I was a very small child. I would never even consider excluding Him during moments of great distress or upheaval. He has always been there for me; I talk to Him at odd moments of every day, whenever a thought comes to mind. He talks to me through the Spirit, sometimes even when I'd rather He wouldn't. But I've never doubted Him. He's always there. He knows me, and I know Him. I'm glad you see that.

God uniquely prepares us for events in our lives that we don't see coming. One question Christian detractors often ask is, "Why do bad things happen to good people?" We may never get the whole answer to that question until we meet again in Heaven, but I can give you a tiny piece of the answer right now. Penny did not know 18 years ago when her daughter was born needing multiple surgeries, that one day she would be at the right place at the right time and know just what to do when William was injured. She didn't know. But God gave her the grace to handle that experience at that time, and the preparation for my child's distress and my own subsequent measure of grace. She learned empathy through that experience. It changed her life. This will change mine. Picture the butterfly making it's way through much effort out of its cocoon. Or imagine the baby chick breaking its way through the egg. Science will show that the effort itself is part of the process; without the trial during transformation, these creatures can fail to thrive and develop. As His creatures, God uses our trials to develop us and help us to become better, stronger people.

Friday night, John sat beside William while I claimed a recliner in the waiting room and fell sound asleep. It was the first rest I’d had that lasted longer than a few hours, and I woke up much refreshed, in spite of the chair itself and the other ICU dad snoring loudly in a much less comfortable chair a few feet away.

Saturday seemed like a really good day for Operation:William. John went home for a shower and a nap. At noon, Anita brought me some Chik fil A, and when the nurses heard about it, they offered to let William eat some. We handed him a nugget, and he smiled, stuffed the whole thing in his mouth, chewed and swallowed. He held out his hand for another, and dipped it in my sauce before taking a bite. It was a great moment for me, to see him eat. The ennui he’d woken up with from his morning snooze fell away, his eyes perked up, and he eagerly ate several fries and more chicken. I started breaking them in half, because he kept trying to devour them whole.

I think lunch was a turning point for William. He stopped fighting his tubes altogether. We gave him a peanut butter and jelly sandwich at dinner time, and he ate it like a starving man. I offered him chocolate milk, and he smiled again, showing his pearly whites. After supper, he reached over and slid back into the arm brace they’d given him to protect the tubing in his arm. The nurse laughed. Usually, the little ones want to escape from those, but I guess William decided he was going to cooperate.

The upside to getting more than a few hours’ sleep was that I got some of my “normal” brain function back. All the external decisions and phone calls I’d been avoiding became something I could consider and contemplate. I called Pastor Gaines back, and Mr. Coombs. I sent out my first email in days, thanking Julie for arranging the details of my mom’s flight on Wednesday. I thought forward a few weeks and was finally able to give somebody an answer about the length of my little sister’s stay to help me in May. I also started to remember my other children.

Anna Kathryn has been praying for William. Her prayers have always been creative and long, and aimed at those she loves, “Dear Jesus, please take care of Uncle Matt catching the bad guys in Afghanistan, and please help me obey, and thank you for Daddy going to work so we can buy food, in Jesus name…” She told her daddy that she’d been praying for William to get all better. She told him that she saw William on television, and asked, “why did he have a tube in his nose?” John told her it was to put food in his tummy. “That’s gross,” she replied. Then, “Daddy, why do you have that blue bracelet?” To let him see William. “Why can’t I see William? I miss him.”

Saturday night, John brought the kids downtown. Crystal, the child life specialist, said she could let them see William for a few minutes, as long as she accompanied them into ICU. The age limit is normally 12 and up. She sat them down on the marble floor in the hallway and showed them a doll with a tracheostomy. She showed them pictures of the ICU, and where they would wash their hands, and the curtain William was behind. They saw pictures of the computers and cords attached to him, and pictures of William himself. Crystal answered Anna Kathryn’s questions. Stephen pointed to every picture with great interest.

I sat with them in the hall while John waited with William. The day before, I had showed William a picture of Stephen that Mr. Ken and Mrs. Nebra brought him. He had taken it in both hands and pressed it to his face. Much later, he let us tape it back up, and proudly pointed it out to visitors who came by. John said, “William, do you want to see Anna Kathryn and Stephen?” William broke into a huge smile. Then his face scrunched up and, overwhelmed, he began to cry. He didn’t stop crying until they walked up to his bed. I picked up Stephen and set him in the crib with his brother. Stephen picked up each car and train he found in the bed, and placed it on William’s lap, “Here you go!” He patted William’s head several times. Twice, he leaned over to kiss him. William was beside himself. He showed Stephen the picture he had of his brother taped to his bed. Anna Kathryn asked a lot of questions. Crystal took a picture of all of us and printed it right there. Each of my children wanted it for themselves, so she printed off four of them—one for John and I.

I went back to Omie and Papa Bill’s house with the kids to kiss them goodnight for the first time since Tuesday. Stephen sat in my lap with his head on my shoulder, as though he had just released the weight of the world. It was the first time anyone had seen any form of stress on him from the week’s events. Anna Kathryn cried for her brother, and worried over her daddy. I promised her that she would see Daddy when she woke up, and he would take her to church. She wasn’t so sure; maybe he would get up too early and eat his breakfast and go before she woke up. I assured her I that would tell Daddy to wait.

After stopping by the house to set out the kids’ clothes for church and to grab a quick shower, I went back downtown to trade places with John. William was still awake. He had cried again when his siblings left. It was nearly 1 AM. I stayed by his side until he fell asleep. When he cracked his eyes open from time to time and saw me, he closed them again and slept some more. It was probably the most sleep he’s gotten since he arrived in ICU. They sent me out of the unit at shift change, and when I staggered back in at 8 AM, bleary eyed and waiting for the cold coffee I found in the pot to kick in, he saw me and smiled. I climbed up in his bed the way Stephen had the night before, and sat with my arms tucked around my shins. He was delighted with me, and showed me his family picture, ate the two crackers he’d clutched all night, and devoured a banana. We played with his trains, read some books, and watched a nursery hymns music video together. He was animated. The nurses stopped in groups of two when they passed our station, just to watch his delighted face. If he caught them watching him, he blinked his eyes and stuck his lip out. Oh, yes. My boy is back.

Dr. MacDonald came to see him this morning. He’s ready to give William his own room, and tomorrow he will start to train us on how to care for the trache. He told me to make sure I get plenty of people trained, so that the burden is not on just John and me to care for William. I feel like I’m at the end of a long tunnel. I don’t care what happens when I come out the other end; it can only get better from here.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me. Psalm 23:4a

Tuesday, May 19, 2009

Family Missions Day at the Zoo

Saturday was Family Missions Day at the Little Rock Zoo. What does that mean? Well, different missions organizations, both local and international, set up booths at the zoo to talk about what they do. We'd been praying for several weeks for pretty weather, and God gave us the perfect day! We had solid cloud cover until close to the end of our trip, but it only started sprinkling once - right about the time we were headed under the pavilion to visit all the booths. It was also a perfect temperature, even a bit chilly at times! The perfect weather for a fun, full day.

As we were getting ready to head in we were handed bags with "passports" in them for the kids to have stamped at each booth they visited. That way they had a written reminder of what they learned.
They learned about Hungary. When the lady who was talking about Hungary asked if they knew where it was, they piped up and said, "It's in Southern Europe!" (Yay for geography songs!)
Steven was pretty excited about getting his passport stamped, and very boldly went by himself to ask for his stamp. I am very proud of the way he's coming out of his anti-social shell...but more on that in the next post.
They also learned a bit about Thailand.
Each family was asked to bring a stuffed animal to the zoo to donate for a child at one of Arkansas' several children's homes or emergency receiving shelters. Most of you who know Olivia know that Bunny has been a mainstay in our family since before she was a year old. What she doesn't know is that she has actually loved on three bunnies! We had a fourth bunny that was still brand new. So, we pulled it out and asked the girls if they wanted to donate "Bunny's brother." Of course, they were exceedingly thrilled about that idea and were very excited about the thought of someone else being able to love on a bunny as much as our Bunny had been loved on!
They had the chance to make a craft as they learned about Brazil.
And they enjoyed visiting with a couple who ministers to cowboys in Arkansas.


They also had the chance to write a short letter to an MK who they also committed to pray for.

Of course, we also had a lot of animals to see! It was fun to see a few things that the Memphis zoo didn't have. One was a Solomon Islands Skink! That was exciting, knowing that our dear friends the Choates probably have seen a few of these! :-) The skink itself was hiding in a log and wasn't visible enough for a picture (although we were able to see it), but we did get a picture of the label.
Being back in Arkansas is always a pleasure, especially when there are Razorbacks around for a photo shoot! Woo Pig Souieee!
The kids were delighted to see the ENORMOUS turtle! I thought he was pretty neat, too!
And, of course, we loved the alligators. We even got to be there to watch their feeding. We all agreed that we wouldn't hold food out to an alligator and call him to come to us, but that's probably why we don't get jobs working with the alligators at the zoo.
I was fascinated with the bold colors of these poison dart frogs. They were beautiful! There were a couple of other colors that were just as bold.
We ended our visit with the Winged Wonders Bird Show. It was really a treat. Doug participated by demonstrating the recylcing abilities of this raven. Yes, the raven flew to Doug, picked up the can, and took it to a recycling bin. We saw quite a few fascinating and beautiful birds, including a bald eagle!
We were pretty tired after nearly six hours at the zoo, but it was worth it. It was quite an enjoyable outing for the family!