Saturday, April 24, 2010

How's He Doing?

Well, it's been a while since I updated this. In fact, I kind of forgot about it until my friend Jodi reminded me. Goodness!!

So, life is back to normal in the DeFore household. Tim recovered well, except for the bout of vomit and other end that put him back in the hospital 2 weeks post opt, from transplant surgery, and after being laid up in the house away from people for 6 weeks, was itching to get back to life!

Tim is back at Holy Cross, taking care of the boys in the morning, and participating in everything he possibly can. He is able to help out at night with the boys (he hasn't really been able to since he started dialysis 2 1/2 yrs. before transplant), he's able to be around people (though he still has to be cautious that none of their nastiness gets on him:)), and he is able to go out to eat on a moments notice without having to come home to get his meds!!!

His creatnine (how they measure the effectiveness of kidneys) has never gotten down to normal levels (.8-1.3 for men), but has come down significantly from when he was at KU Med (18 down to 1.6), so things are going well. He has to get his bloodwork checked every week for the first year as that is the time period that most people will go into rejection. In fact, they say that almost EVERYONE will go into rejection during that first year, and so that is something we have to be aware of. He sees the doctor once a month and was released back to his Wichita nephrologist at the beginning of March.

We can only give praise to God. He knew that this was the perfect time for a transplant. The man who donated was actually from Wichita, and he saved at least 3 peoples' lives with his donation. We are blessed.

Sunday, February 21, 2010

Gus Right Now

Gussy, Gussy, Gussy, what to say about my youngest? Well, he is still quite hefty but is losing grounds on height according to our recent doctors appointment. He speaks very little but makes lots of noise. He is a tonal talker. He mimics the tones and so therefor, speaks many words, according to his doting grandmas!!

Our recent difficulty with Gus is that he has decided that going to bed is NOT what he wants to do, at any time of night!! He cries and is angry if we lay him down. He vomits when he starts crying. I used to think it was just if he had a runny nose, then crying would cause problems and he would upchuck. The doctor says that it sounds like a learned trait! What?! How does one LEARN to vomit when he doesn't want to go to bed? So, it was suggested that when we lay him down we say very sternly, "You go to bed, you don't throw up!" It is very strange to get mad in tone when your child pukes because, normally, puking is a result of being sick and not being able to help it. Anywho, that is where we are with him!!

Gus absolutely LOVES his big brother, except when he doesn't. HaHa! He loves doing EVERYTHING that Elijah does, sometimes to Elijah's dismay! He loves anything he can bang on or that makes noise. He also loves being near people and HATES being alone (maybe that's the sleep issue, huh?). He is a very lovable boy and enjoys cuddles and hugs. He also enjoys getting the Wii remote and "playing" Wii! He is so fun to watch. What a blessing!!

Elijah Right Now

So my big boy Elijah is very interested in how big he will be when he "frows" up. He is certain he will be bigger than Daddy even though Daddy is bigger than EVERYONE else. It's fun the view he has of his Dad!! We celebrated Elijah's cousin Derrick's 23rd birthday yesterday. Derrick is over 6 feet tall but Elijah was certain that Daddy, at 5 foot 8, is bigger than Derrick as Daddy is older than Derrick. It's fun to see life from a 3 year olds view:)

The other thing we have been working on is Elijah's speech. Frows (grows), shuice (shoes or juice?), and Lisha (Elijah) are just some of the issues he has. The "j" sounds like an "sh" as does the "g." He is still says berryfoot for barefoot. You kind of don't want to correct him because it's just soooo cute, except for when he gets mad at you because you have no clue what he is saying.

He has the best imagination ever. He can play with his dinosaurs for literally 2 hours with no break. They do all sorts of things, but they especially love to eat each other and shoot one another. It is a lot of fun to listen to him pretend play. Elijah also does a great job of playing with his brother. They like to wrestle, play tiger (crawling around after each other growling), and chase each other. They are great friends and great enemies:) But, what do we expect of brothers right!!

Wednesday, February 3, 2010

We Got It!

Well, we finally got the call! On Wednesday, Jan. 27 around 6:15 PM, Gus and I were sitting down to eat dinner when the phone rang. Tim answered it and began smiling and saying yes and nodding. I started wondering what it was, so I asked if this was it. He nodded. And so it began.

While trying to feed Gus and keep him happy, I went into super mode getting our suitcase ready and our moms called. When Tim got off the phone, he just kind of wandered around. I suggested he take a shower as it probably would be a while since that happened (and I love being clean). He did that while I took a whiny Gus and tried to tote him around while I gathered everything.

We said our goodbyes to our boys and drove to Kansas City to KU Med Center. We arrived around 10:15 and got checked in around 11:30. From there Tim was poked and prodded until around 1:30 am when we finally went to sleep in the Transplant ICU.

He was scheduled for surgery at 10 am, then noon, then 3 pm and then finally actual surgery on Thursday, Jan. 28, 2010 at around 5:15 pm. There had been a few snags in actually getting the kidney to KC, but it had finally arrived and the surgeons were ready. They took Tim away and I went to wait.

Around 7:30, the nurse came out and told me the new kidney was in and it was already working!! Around 9:15 he was done. Dr. Forster is the transplant surgeon who worked on Tim. He said the kidney was big, oozing more than he would have liked, took the PD catheter out, but was too tired to fix the ambilical hernia. I went up to the ICU waiting room and finally got to see Tim around 10:30.

Dr. Winklehofer, the best nephrologist around because of his positive outlook and great bedside manner, sat down and talked with me prior to seeing Tim post-op. Everything looked great, he said. Big was better. Oozing, no problem. When I finally got to go in and see Tim he was quite doped up. He was so polite and said he loved me, with just a slight slur and slowed words:) Within minutes of me seeing him, the nurses started their secret talk of, "Listen to his lungs . . .what do you hear . . . call the team . . . get ready . . . " A little freaky for a devoted wife who just got her husband out of surgery.

I was informed that Tim's lung had collapsed, a surgical team was on their way up, told all of the horrific things that could go wrong with putting a chest tube in, and then was required to sign a paper that said I was great with that. As I held back tears, one young surgeon assured me that the lady placing the tube was the best around, did it all the time, and it would be okay.

In the waiting room, I broke down, prayed, and talked with Ashton, my niece, on Facebook. Boy am I glad she stayed up late that night. I was prepared for the surgery, but not for the complications. I am so grateful for the number of prayers that were being sent up for Tim. It is still amazing to me to hear of all of the places around the United States where church members of extended relatives and friends were praying. Around 11:30 pm, I saw Tim again. He was snoring away.

Dr. Winklehofer had told me earlier to talk to him for 5-10 minutes and then go to a hotel because he would be out all night long. So I left. Later, I realized that he told me that PRIOR to knowing of Tim's collapsed lung.

I got a call at 1:50 am from the nurse saying that Tim was ADAMENT that he speak to me. He apparently had been strapped down because he was trying to pull out his tubes and had no idea why he had a tube in his chest. He didn't remember me talking to him post-op and was worried that I would be worried. When I got to the ICU the next morning, he about broke my heart. He said he had the worst night and had been counting the minutes until I got there. Talk about guilt.

Once I got there, things seemed to start looking up for him. He was in horrendous pain, not from the kidney, but from the chest tube. We can definitely say it was the thorn in Tim's side:) He slept a lot that day as he had access to morphine every 6 minutes to ease the pain.

Good ole Derrick, our nephew, had Friday off because of the snow and so drove Tim's sisters Corina and Denah up to visit. Prior to them visiting, Corina's cousin Marsha and her husband Ed, made a surprise visit which really lifted Tim's spirits. I am so thankful for the snow God sent so that Tim's family could come up. On Saturday, Tim's mom Joyce and Denah again came up to visit as a surprise. Joey Weikal, who lives in KC, came to visit bringing us magazines and puzzle books, Stan Longhoffer from our church came to visit following a presentation he had in KC, and Marsha's sister Lori and parents came to visit. Tim was very thrilled to have all of these visitors as he was getting pretty bored of me! HaHa! He was also blessed with cards and e-cards sent from a number of friends!

Following surgery, Tim's creatnin levels began dropping 2-3 points everyday! IV's got taken out 3 days post-op, catheter 4 days post-op, chest tube and JP drain (kidney drain) 5 days post-op, and we get to go home 7 days post-op (thanks Dr. Wong). His recovery has gone very well. We will be back every 3-4 days for the first couple of weeks, then once a week, then once every other week, until we are released back to Wichita care.

We have been so blessed by a wonderful group of doctors, nurses, and aides who truly cared for Tim and knew what they were doing. Aside from the unfortunate event of poking Tim's lung, everything has gone like clock work.

We are thrilled to get back to "real life" and see how that goes. My nerves are overwhelmed thinking about taking care of everything, but I am so blessed to have family support and my church family to help us through this. We have meals ready to be delivered, offers to drive Tim up to clinic (as he can't drive for 4-6 weeks), people willing to mow, clean, and babysit. I already have lined up a babysitter for Tim and the boys so that I can go play Bunco on Saturday, because, you know, that is top priority:)

God is a good God. He is faithful and His timing is perfect. Did I mention that Tim was set to have surgery on Feb. 1 to switch to Hemodialysis because his Peritoneal Dialysis was no longer effective? Only God can time that.

We pray for the family of the 42 year old Hispanic man who lost his life to a stroke for being willing to provide life to my husband. We can never repay that. Isn't it interesting to think, though, that 42 years ago, before Tim was even born, God knew the plans he had for this gentleman. For him to live his life, and then to save not only one but two people's lives with his healthy kidneys? I am amazed and honored that God knew, that God's plans are perfect, and that when I get overwhelmed and angry with God for not doing it my way, that HIS way is perfect!

Thank you God! What a huge blessing you have given us!!!

Please continue to lift Tim up. Rejection of the kidney is always a real risk as is Tim getting sick now that his immune system is purposefully down. His blood pressure and blood sugar have remained high, which is normal, but could also lead to other problems such as diabetes. Pray Tim does not develop that. We again are thankful for your prayers and your love! You are amazing!!

Saturday, January 2, 2010




Winter Vacation

It has been a wonderful 2 weeks off with my wonderful family. Elijah, unfortunately, has been sick going on 5 days now with a fever and cough. Poor little guy. He wasn't too devastated though, because he took his own little vacation to Vee and Grandpa's house for 3 days and nights. He wasn't too thrilled to be coming home!!

Gus has learned very well how to communicate without words. When he needs you, he comes over and whacks you in the face, arm, wherever he can reach. He proceeds to grunt and point in the direction he is needed. If, by chance, he cannot whack you, he will scream in the most obnoxious high pitched scream you have ever heard! The one word he is able to say is "ot" which is Hot. EVERYTHING is "ot." The other word he knows is "dada." He says this word any time you ask him to specifically say something. Say mama . . . "dada." Say grammy . . . "dada." Then he claps and is so proud of himself for saying EXACTLY what you asked of him. He is a cute little guy with precious locks. We will have to be careful about him turning into Goldie Locks, as that is unacceptable, but they are so cute!!

Elijah is constantly saying cute things. Just now, he pushed a button on the Alvin toy he got from McDonalds that says, "Hello Gorgeous." He says, "Hello Go Shock!" He once again, at Vee's, wanted to "get naked" (take off his shirt like Grandpa). Grandma Evelyn jokingly said she should do the same and Elijah said, "No, you can't because of those things on your belly!" To Tim, Elijah has told him, "Don't throw that mommy's milk away, we should save it for Gussy's sister who is in Mommy's tummy (wrong)." Daddy asked, "What's her name?" Elijah replied, "Kari, Kari, where are you?" Another time after Daddy had read the story of the 3 trees (the trees were used for the manger Jesus laid in, the boat when Jesus walked on water, and the cross where Jesus was crucified), Elijah asked Tim,"Daddy can you tell me a story about 5 trees now? When they cut one of them down, will it be made into a wooden puppy?" Elijah continues to amuse and is such a great big brother to Gus!! He loves his dinosaurs, animals, and play dough. Did I say loves, I meant obsessed!!

Tim and I are doing well. We are on constant alert for the transplant that will be coming. They have called twice and we have not gotten it. I have begun to feel like the boy that cries wolf, only we are just sharing the info that we are receiving. One of these days, I will share the info, and we will ACTUALLY get the transplant. We also have enjoyed playing our Wii, playing games, and hanging out with our wonderful family!!

Wednesday, November 11, 2009

Don't Forget Gus

Because Elijah is at such a great age, he seems to get all of the press, but we can't forget about our sweet little Gus.

So, Gus is starting to get a little personality of his own. I am beginning to fear for our future and his potential for strongheadedness:) At Toys R Us the other day, I let him get out of the cart and told him he had to stay on the aisle. Gus starts backing slowly up, little steps, looking at me with this devious grin. He backs all the way out of the aisle until he bumps into the next aisle, the whole while I am saying, "Guuus, stay in this aisle."

When Grandpa Kenny comes every morning, Grandpa asks, "Where's Elijah?" Gus immediately runs and points under the table where Elijah is hiding. One day, Elijah had spent the night with someone, Grandpa came, asked his question, and Gus ran over to point under the table and then looked at Grandpa and Daddy with a perplexed look, like, "Well, where IS Elijah?" Nowadays, if Elijah isn't here, Gus will run and hide under the table:)

Gus knows sign language for more and please. There are times when he wants something, and is emphatically saying MORE, and we just have no clue what in the world he wants. I guess maybe I should teach him some more words, huh?

Gus also enjoys babies. Today at Target he had a whole non-verbal conversation (okay maybe it was just a staring contest) with a little kid in a stroller before they had to say bye-bye to each other. It was pretty cute to watch their interactions with each other.

He's a pretty sweet little kid and is a great joy to be around. Gus is also starting to mimic sounds. Elijah has greeted Tim and Grandpa Jerry before with an excited, "Daddy," or "Grandpa," and Gus mimics Elijah. It sure sounds like he's saying something. The other sound he makes, is like a kitten sound. He will look at his books or sit in his carseat and make these little kitten sounds. The other fun thing he does is growl. Sometimes it makes sense with the situation and other times . . . well he just really likes to growl:)

And finally, our little Gus can blow kisses and is great at snuggling. We will take him to his 15 month check up next week where, hopefully, he will be ranked at the top of his class:)