No Words Necessary

Tired But Still Kicking

It's Sunday night and I promised you all that I would send out an update on my favorite preschooler before the weekend was over. You guys know I keep my promises so here goes. Kai is feeling much, much better. He is riding his bike, playing with cars, and "performing surgery" on JD several times a day. His smile is back and he is eating enough to stay alive. David and I, on the other hand, are tired. Very, very tired. Giving IV antibiotics every 6 hours will do that to a person. The antibiotics infuse over a 30 minute period. If we don't mess it up, the prep and clean up time is around 15 more minutes. When you add that up, we are working with Kai's medicines every 5 hours and 15 minutes (and he's on more than one medicine that infuses over 30 minutes so it's really less time than that.) 5 hours of sleep is fine every now and then but it stinks night after night. Of course, we'll make it. We always do. But this is not the most enjoyable time of my life (or Kai's life, for that matter.)

David must go out of town tomorrow. My blood pressure rises just thinking about him leaving. Thankfully, my mother is going to help out a lot. She's even going to spend the night tomorrow night and help with Kai's midnight and 6am meds. God bless her.

I know I've said this before, but I thank God for each and every person who prayed for Kai over the last 2 weeks. Knowing that you were out there, praying for us, kept me going when I wanted to run out the door in tears. I have learned many lessons throughout this ordeal. Number one is that I will never again tell someone that I am praying for them in a flippant way. If I say that I am praying for you, you can count on it. No matter what is going on in my life and regardless of how busy I am, I will make time to pray for you. It's a powerful thing and I've taken it for granted for much too long.

Oh, I know, still no pictures! What's up with me? Did I mention that I was tired - really, really tired?

Snoopy Dance

This is going to be short and sweet because I have to get some sleep. Why do I need to sleep you ask?

BECAUSE I HAVE TO DRIVE HOME TOMORROW MORNING!!!

I wish you could see me doing the Snoopy dance! Yes, we are officially out of this place after Kai's 6am iv meds. I can not even begin to explain how good it feels to know I will be home, in my own bed, with my husband and kids, tomorrow night. It seems like I am beginning to wake up from a long nightmare.

I'll update on Kai's health sometime this weekend. I'm tired of medical jargon right now and I hope to never see the inside of a hospital again (yea, I know, fat chance.)

Just a Quick Update on Kai

Like I mentioned in my previous post, Kai had several tests today to determine the health of (and possible damage to) his kidneys. We will learn the results tomorrow. I did not cry today (yes, I do want a cookie) but I did call my mother and talk pitifully to her on the phone. I also had it out with a new doctor this evening when he skipped Kai during rounds because he "had to see a sick kid with a really bad infection." Uh, duh. He's right here buddy - room 438! Come on in. He did not appreciate my humor at all and explained that the other child was extremely sick and in isolation. I completely understand that the doc needs to see the critically ill child first, but that is no reason to completely skip Kai. And in addition to the "I had to see a really sick kid" line, the doc also said (and I promise this is a direct quote), "My job is to make sure nothing terrible happens (while your surgeon is out of town.) Nothing terrible happened today, did it?" I honestly can not believe the man said that. I wanted to smack him across the face. I guess the fact that Kai is conscious is a victory to this moron. And I must note here that this doc was neither my surgeon or his partner, who are both at a conference in Arizona. This guy is the third string quarterback and he obviously has a chip on his shoulder.

As for Kai, he is feeling better. He still looks like the walking dead, but he is eating some and drinking enough that they discontinued his iv fluids. The plan (which is subject to change at any moment) is for us to be discharged early Friday morning, right after his 6am antibiotics. We are then to drive home quickly (as quickly as you can drive from Ohio to Alabama) and meet our home health care nurse. The goal is for the nurse to immediately give Kai another dose of his antibiotics (which would put him missing only 1 dose.) We are coming home with both a PICC line and the suprapubic tube. I believe I wrote somewhere on my blog that we would come home with the tube "over my dead body." Well, I lost the battle of the suprapubic tube and it is remaining in place for another 2 weeks. Today I learned how to infuse antibiotics directly into Kai's bladder via the tube. Oh yes, it was a day of fun and laughter in A4 South (insert evil laugh here.)

Your prayers are still coveted. Thank you for your blog comments, your emails, and your love. I can feel that people are rooting for us and it makes all the difference in the world.

Gamut of Emotions

I just had a very scary talk with the urologist. Kai is going downstairs for a few tests at 2:30pm and the results will show if the infections have damaged Kai's kidneys. Kidney damage is bad and is often irreversible. There's a lot more I could say but it's difficult to do in my current emotional state. My emotions have been running the gamut from hopefulness to despair to exhaustion to peacefulness. I guess it depends what minute you catch me. Please keep praying. It's all we can do right now.

Suicide Watch Discontinued

Good evening, friends. It's 10pm in Cincinnati and Kai had just turned off Yo Gabba Gabba and fallen asleep. Unfortunately, that's usually the cue for one of his nurses to find a reason to come into our room and wake him up!

Today has been a much better day for Kai and the future is beginning to look promising. I'm not going to share all of the details just yet, but I will say that Kai's surgeon and I had a long conversation today and we are now in agreement regarding his plan of treatment.

I did not break down today and although I am very tired, I feel much stronger. For those of you who were worried about my sanity, I have decided against throwing myself in front of a Mac truck for the time being (sorry for the mention on Facebook. Many of you seemed deeply concerned for my well-being.)

And to those of you who have been in fervent prayer for Kai, I will never be able to adequately express my gratitude to you. Please continue to pray for Kai as he is not completely out of the woods yet. Tomorrow will be a critical time for my little man as he tries to prove he is well enough to be transported home and continue treatment there.

Planes, Trains & Automobiles

I'm really too tired to say much. This has been an extremely difficult day for both Kai and me. We have cried many tears and have red, puffy faces at the moment. I'm tired of watching my child writhe in pain, tired of holding him down for excruciating procedures, and tired of setbacks. I am praying (deep, long, heartfelt prayers) that tomorrow will be Kai's day for healing.

Linda (David's mom) was due to arrive at 4:15 this afternoon. She called around that time to say that her airplane had lost compression and had made an emergency landing in Lexington, Kentucky. The airline put her on a bus to Cincinnati and she just called to say that the bus had broken down 30 miles outside of Cincinnati. Have you ever seen the movie Planes, Trains & Automobiles? I think she's living it out right now.

Please continue to pray for our son. I will update soon.

Knock on Wood (Updates X2)

Knock on wood...Kai has been fever-free for 10 hours.

Knock on wood...He has kept 2 very small meals down.

Knock on wood...He has been responsive for over 20 hours.

As you can see, I'm terrified of jinxing the progress my little angel is making. And no, I'm not really a superstitious person. I know who's healing sweet Kai and He couldn't care less if I knock on wood.

Update: Kai's fever is back up. We just got news that the doctor is on his way to see us. I would cry if I had the energy.

Update: I DID cry. As soon as the doctor walked in, one of the nurses gave me a hug. That was all it took. I completely lost it. Since our doctor is out of town, Kai is seeing the world-renown Dr. Pena. I felt bad for the man. The minute he meets me, I fall apart. It did get him moving, though. He ordered several tests and told me that he would get to the bottom of this. He is making sure that Kai is not suffering from other infections in addition to his UTI. He also didn't like the way Kai was breathing either (fast and shallow) so I think we're in for some respiratory tests. I'm no big fan of tests, but if it will help Kai, I'm up for almost anything.

Room Service

After a short nap this afternoon, Kai raised up off his bed and said, "I'm hungry!" He went on to explain that he needed some grapes and a helping of mac and cheese. I called room service (yes, this hospital actually has free 24 hour room service for patients) and placed the boy's order. When it arrived he requested to sit in a chair to eat his food (this from the kid whose eyes were rolling back in his head 2 hours earlier.) That was several hours ago and Kai has kept the food down. Hallelujah! He still has a fever but it is lower than it has been. Maybe the antibiotics are working just a little bit? I don't know. What I do know is that Kai sat up, ate food and played with cars this afternoon. It's so good to have a piece of my little man back.

Prayer Warriors

I know I sound like a broken record, but Kai is having another tough day. His fevers have continued and he is extremely nauseous. He hasn't really eaten anything in 3 days now. Dave fed him 2 crackers this morning but that was all he could tolerate. He is truly pitiful. This is one of the most difficult things I have ever gone through as a mother. My child is hurting and there is nothing I can do to comfort him. I sing to him, wipe his tears and hold a cool cloth on his forehead, but nothing helps. At times he sits up and asks for a sip of Sprite, but many times he is what I call semi-comatose (awake but non-responsive.) I had such high hopes that the new antibiotics would work and right now I am heartbroken that nothing seems to be curing my baby.

David left to go back home a few hours ago. I miss him already. We're a good team and we work well together in times of stress. I've never been a person who enjoyed being alone. David laughs that I could be happy digging ditches as long as my friends were digging ditches with me. It doesn't matter what I'm doing, it matters who I'm doing it with (I'm not sure that came out right, but you get the gist of it.) Right now, I don't have anyone to share this experience with. And that's what I need, someone to share the load with me. Thankfully, Linda (David's mom) is flying up tomorrow. In addition to being extremely capable of taking care of Kai and keeping me company, she is also a retired nurse who specialized in pediatric care. I'm sure she'll keep the RN's on A4 South on their toes.

I talked to JD and Piper a little while ago and had to break the news that although David would be home tonight, Kai and I had to stay in Cincinnati. JD came as close to crying as he could while still playing the stoic, big brother role, and Piper flat out bawled (and with Piper, I would expect no less.) She is my super sensitive kid who wears her heart on her sleeve. Talking to them made me want to cry, but I was too busy explaining how this was just a "tiny" setback and how we would surely be home soon. Yes my friends, I lied through my teeth for the sake of my little ones back at home.

As I sat and watched Kai fitfully sleep last night, it occurred to me that he needed prayers - badly. Of course, our entire family has been praying for him, but we needed to break out the big guns. Which brings me to an interesting call I received 2 weeks ago. My best friend from college called me at home completely out of the blue. We haven't talked in several years, so it was a huge (and wonderful) surprise. She said that our college Christian ministry group (UCM) was having a reunion and she wanted me to join Facebook so I could get updates on the event. I have shot down quite a few people who begged me to join Facebook over the years. For some reason, I envisioned it as a place where teenagers sent half-naked pictures of themselves to strangers and where lonely twenty-something's went to find a mate. If anyone could ever get me to join, it would be Stephanie, my college partner in crime. I signed up and within one week, forty college friends had contacted me. These are people who I spent some of the best years of my life with. I loved these people and then I left (with David) and lost contact with them all. But back to last night. It hit me like a ton of bricks that I was now in contact with so many wonderful Christian friends. Yes, friends I had not seen in 15 years, but awesome, Christian friends no less. Sitting in the dark at the little desk in Kai's hospital room, I wrote a blurb on Facebook asking for their prayers. It went something like this, "My youngest son is very sick in the hospital. He needs your prayers. Please be his prayer warriors." I woke up this morning to a slew of emails from my friends. Many of the messages said that not only would they pray for Kai but that they would have their entire church pray for him too. It's the love of Christ in action and I feel so blessed to be a part of it.

Please God, Let These Antibiotics Work

Kai is sleeping thanks to a nice dose of Zophran (anti-nausea drug.) During this very difficult hospital stay, I have realized that being an advocate for Kai sometimes means that I must be demanding, persistent, and sometimes, just plain rude. This is incredibly hard for me as I was raised to be a sweet Southern girl (don't laugh.) I stick by everything I have said about Cincinnati Children's Hospital. The nurses on this particular unit (and by that I mean the colorectal floor) are fabulous. But sometimes there is just so much they can do. They have to have orders, or beg for them, before many things can be done. David and I have been requesting anti-nausea drugs for Kai since last night. We kept getting the run around (i.e. "I'll see" or "I'll call the resident on duty".) Well, today I decided that I was no longer going to accept those answers. I rang the nurse and then stood outside our room in the hallway waiting for her to emerge. When she walked up I said, "Kai needs the anti-nausea drugs now. Right now. Dr. Levitt said he would write the order for them. If he forgot, I'll email him. Just let me know ASAP if you're going to go get the drugs or not." She returned about 5 minutes later, of course, with the drugs. And interestingly enough, she said she had to be a witch to get them. The resident told her that he was busy with a trauma (I believe this was the 2nd or 3rd time she had gotten this excuse) and that she would have to wait. She told him that was fine, she would call Dr. Levitt at home. Guess what, he wrote the friggin' orders that minute! It just goes to show that syrupy sweet is not always the way to go.

My mom asked this morning if Kai had been enjoying the playroom. When she came last month to help him through his PSARP surgery, Kai was living in the playroom. We were there every single moment it was open. This visit is so very different. Kai has not graced the doors of the playroom one single time. He has not even played with a toy in his bed. The kid is totally out of it. Completely, undeniably sick. He closes his eyes, moans, thrashes and sweats (unless he is having chills.) Unless he is given fever-reducers around the clock, his temperature rises into the 104's. Thankfully, his antibiotic was changed at noon today. I am extremely hopeful that this new drug will be the cure for his infection. My request is that you will pray for the healing power of Kai's antibiotics. As always, I will keep you updated.

Welcome Back to A4 South

Things are not good. Not good at all my friends. Kai spiked a 104.2 temp last night and we ended up in the Emergency Room for IV fluids and IV antibiotics. We were then admitted to Cincinnati Children's and have been told that we will be here for at least 2 more days. The doctor was clear that discharge on Sunday was a goal but to not count on it. He also believes that the "test from Hell" on Wednesday actually caused this UTI (how ironic.) This is the mother of all infections and it has not been cooperating with modern medicine. Kai is sicker than I have ever seen him. Although he is currently awake and watching Word Girl on PBS , he has been limp and lifeless for the majority of the last 12 hours (and by the way, am I the only person who has never heard of Word Girl?)

In the midst of all this craziness, David had to leave the hospital to pack up all of our things and check out of the hotel. We had been lucky to get a super nice hotel for $58 a night on Hotwire but the rate jumped to somewhere around $170 when we tried to extend our stay (isn't it nice to know that hotel managers can be so sympathetic.) You've got to be kidding if you think I'm going to pay $170 a night for a hotel in Cincinnati that I will barely see.

So here we are, back on A4 South. I hate that Kai is back in the hospital but to be quite honest, I feel very comfortable here. These nurses know their stuff and they're extremely caring. I can focus on simply loving Kai because I know that they are focusing on getting him better. It's a nice give and take that I won't have once we're back at home. Again, we covet your prayers for sweet Kai and this unrelenting infection. I will update soon.

A Day in Hell

Yesterday was one of the most difficult days I have ever endured. I think it ranks second only to the day of JD's tibial osteotomy (a horrible surgery he had back in 1999.) The test Kai had to undergo was extremely painful and mercilessly long. The actual test (not our waiting time or the prep time) took an hour and fifteen minutes. Imagine holding your child down, listening to him scream, and watching him writhe in pain for over an hour. It was awful. I broke down about 30 minutes into the test (which is a first ever for me) and began sobbing uncontrollably along with Kai. I knew the test was going wrong. The radiologist had called in another doctor and a second nurse appeared. Everyone was whispering and I finally demanded that our surgeon be contacted. I had to know how vital this test actually was before I stopped it. Unfortunately, our surgeon said that it was imperative that Kai have the test. I believe that in the end, the results were fine, but we won't get the full results until tomorrow. Right now we are doing another (painless but difficult) test every 3 hours in the hotel room. So far, David and I have botched the test every single time we've tried it (of course, Kai also has some culpability in our failure.) If we screw the test up again this afternoon, I don't know if we will be able to come home on Friday. It never occurred to us that we might be staying longer, so we made no contingency plans for JD and Piper this weekend. I know, we stink as parents sometimes.

In case I made it sound like we're on death's door, I guess I should explain that we're fine now (a good 24 hours post the hellish test.) Kai is happily coloring on the floor and David is working at his computer (so as to not get fired.) I'm finally calm enough to blog about our day yesterday, although just thinking about it makes me feel sick to my stomach. I know this sounds crazy, but major surgery and 11 days in the hospital did not prepare me at all for yesterday. If it's Thursday and you're reading this post, please say a prayer that:
1. David and I are successful with Kai's remaining tests today.
2. We get good results from the test Kai underwent yesterday.
3. The surgeon feels comfortable sending us home tomorrow.

Thanks for your support. I'll update as soon as I can tomorrow.

Easter Fun

We had an incredible, fun-filled Easter weekend. We were super busy but it was worth it because the kids got to spend time with cousins that they rarely get to see. We also took our bi-annual family photo and it turned out pretty well. Not perfect, but what do you expect with 3 kids in the picture?

We're leaving tomorrow to head back to Cincinnati for Kai's post-op appointments. They will not be pleasant, but at least his tube will be removed and we can start back on our potty-training regimen. Maybe I can catch up on my blogging in the hotel room after Kai goes to sleep. I love hotels because there's no bathrooms to clean, no clothes to wash, and no dinner to cook during your whole stay. On second thought, maybe we'll move into a hotel.

Fearless "4"

The family

Birthday Boy Kai

Jackson & Kai
(impossible to get a cute picture of both of them)

Dave with J.D. and Piper

PapPa and Granny

Mom and Kellie (aka Aunt KK)

Blowing out candles on his Spiderman cake

Eating Cake

Beautiful Piper

Round 1 - Pinata Wars

Piper finally busted it here

A 2 year old is no match for a pinata

Kai taking a swing at it

I have a confession to make. We didn't celebrate Kai's 4th birthday until 2 weeks after it had passed. To make matters more embarrassing, we didn't even tell him that it was his birthday on the real day. I do, however, have an excuse if you care to hear it. On Kai's actual birthday, we were in the middle of a 2 week hospital stay and we didn't believe Kai would be able to eat, much less drink anything. As it turns out, the doctor let Kai begin to eat and drink clear liquids on the morning of his birthday. I however, was completely unprepared for this turn of events and had no birthday present for my sweet little man. Thus, the hasty decision was made keep Kai's birthday a secret to everyone, including him.

So this past weekend we declared that Kai was now "4" and we planned a family party. Kai's best friend is his cousin, Jackson, so it was only mandatory that he be there. Kai and Jackson played on the swingset, smacked a pinata around, gorged on Spiderman cake and opened presents. To Kai, it was the perfect day. Sorry to deluge you with pictures, but I stalked the kids like paparazzi and this was all I came up with (and yes I know, I need major help with my camera skills.)

Monster Escape

This morning when I got out of the shower, I couldn't find Kai. I walked through the house, yelling his name, looking in places that 4 year old's like to hide. Finally, I hear his footsteps on the tile and I find the door from the kitchen to the garage open. I didn't think anything of it.

Until...

I pick up Piper from school. As she gets into the car she says, "Mom, what happened to your car?" Uh, I don't know -what are you talking about? She then informs me that the passenger's side of my white minivan is colored orange. Take a look. Yes, the little monster has done it again (little monster, of course, is meant in an endearing way.) I promise the pictures do not do the damage justice. Thank God that crayons come off with a little soap and water.

Motoring

What do you do when your doctor tells you that you can't ride a bicycle (or the Harley you got for Christmas) for 4 weeks? If you're Kai, you get your daddy to fix your brother's 6 year old Jeep (which hasn't worked in ages.) Ah, life is good when you can motor around.

And of course, no post would be complete without a picture of Ash. Yes, the tot has been renamed due to intense pressure from the under 12 crowd. If you're interested, you can read the whole story here: Warning Profanity Ahead. If you were attached to the name Cooper, I'm very sorry (but I don't really want to hear about it.) J.D. assures me that Ash will thank us one day for such a cool name (and I'm told his entire class of 5th graders concurs.)