I want to  start by shouting a huge thank you to everyone who has helped us through this journey!  Your prayers and thoughts for all of us are very comforting.  

August 25th was Trey’s 1st day of preschool, 2nd year, & he had fun!  He had labs that morning & didn’t flinch at all.  The blood clotted & he had to go back after school to give more blood & he sat in the chair by himself without me helping hold his arm.  The lab here was concerned about his low platelet number.  They had me all worried thinking we might be on our way to Omaha.  I spent all afternoon cleaning, doing laundry and getting bills lined up.  When I got the results, 65, I wasn’t concerned.  They only dropped 3.  The number is low but it needs to be a lot lower before Omaha will do anything.   His platelets have been as low as 30 before.  I should’ve known if I prepare for a trip to Omaha it won’t happen.  They like to surprise us with a phone call saying be here in an hour. 

The weekend of the 21st we went camping with grandpa and grandma Buettner.  We had special visitors Jim & Bonnie.  The heat was miserable but we still had fun.  While camping we celebrated Anna’s 8th birthday.   She got to invite 3 school friends & had a horse riding birthday party in Omaha and then we went  back to the campsite.  Trey got to ride a horse several times and loved it.  As always Trey loved camping.  He complained a lot today about his tummy but he is still doing great.  The other day he told me “mom I love you more than ice cream, chocolate cake and m&m’s”.

Omaha called saying that on next draws, the end of October, they are going to have a lot of extra blood drawn.  They want to do iron studies again and they want to test for underlying causes of why Trey may have developed this blood clot.  The nurse and I also visited on the phone.  We talked about everything I already know but I wanted to be assured of things.  She told me to remember that Trey will not be treated as another patient that shows up with portal vein thrombosis.  Again, I was told everything will depend on HIS body.  She said that it may be that his body will continue to make collateral veins allowing blood flow and it may be a few years before anythig major happens. 

School is going great and I love getting back into a routine.  The girls love their teachers!  Emma is in 5th grade and Anna 3rd grade.  The house stays much cleaner without kids here all day.  Anna has started her horse back riding lessons and the instructor calls her a natural on horses.  She is amazed at the coordination and grace she has.  This week the girls start cheeerleading and tumbling and Trey starts swim and gym. 

Speech started last week for Trey and his teacher Tracey thinks he is doing great.  She says the sounds he is missing now might be age development.  She is going to continue with bieweekly meetings to keep evaluating him. 

Grandma Gulzow has been staying with us as she is training for her new job.  The kids like getting to see her more often and she is a big help to us.

God has blessed us and we thank him! 

We hope everyone enjoyed their labor day weekend!

Someday I might get back to finishing the last post.  In a nutshell Trey has serveral large varices and the team has decided to wait for a bleed.  Things will not get better and he we will have a bleed and will vomit or stool blood.  We don’t know when that bleed will happen.  The doc wanted to band a larger varice but was afraid of what it would to to the next one that is on the opening of his stomach.  The varice on his stomach is a difficult one for the docs to work with.  If there is no bleed before December he will have an ultrasound to check for ascites which would be a sign the liver is being affected by the blood clot.  Most likely Trey will have to have another transplant.  When that will happen we don’t know.  It all depends on his body.  Am I scared?  YES!  They tell me it is a lot of blood when the bleed does happen.  They also tell me kids usually stop bleeding on their own.  We will get him to the ER to stop the bleeding and go from there.  Will they band or try a shunt?  He has labs next week and I am nervous of what the numbers are going to be.  His iron, ferritin and tests related are low so they’ve again added iron tablets to his list of daily meds.  Thank goodness he can now take pill form.  The old stuff was syringed in his mouth and was awful tasting plus stained his teeth.  For now Trey appears healthy on the outside and you wouldn’t know he is sick inside.  He starts his 2nd year of preschool next week.  He can’t wait!  His best friend Zach is going to be in his class again.  Trey has had fun getting together with Zach this summer swimming, playing and a evening at the campsite.  I’ll update next week with lab results.  I can’t thank everyone enough for caring for Trey and our family.

Hard to believe four years ago today we were all heading to Omaha for day before check ups and blood work.

In May we celebrated one year of Trey not having any overnight hospital stays! This past year did come with a lot of ER visits, doctor visits, Xrays, labs, phone calls to Omaha and a handful of visits to see the docs in Omaha. Over the past year and even more this year Trey has complained of his tummy hurting especially by his spleen. Every month this year he has had it where it would last 7-10 days. When it is at its worst he can hardly move, can’t sit up, walks bent over, can’t sleep and is in pain! He also has had a lot of fevers. Every month we call Omaha, see the doc here, do xrays and it is always just a virus. Having had enough of seeing him in pain, us and Trey’s doctor here called Omaha and said something is not right it is time to find answers.

He had a ultrasound done here and one in Omaha. He also had a MRI done here. We did get a scare….after his MRI we were sent to Omaha. There they told us he had several swollen lymph nodes around his spleen, stomach and they could see a couple on his back. Of course the worry was PTLD (cancer). The days of waiting were long and stressful. His EBV came back negative so they didn’t think a biopsy was needed.

At the beginning of June they did a MRI of his veins to watch blood flow.

We took a couple days off and enjoyed some time in KC. Trey and all of us were given some free tickets to Worlds of Fun through Make A Wish. We also visited Great Wolf Lodge and really had a great time. While in KC Omaha called with results from the MRI. From watching the blood flow, his still growing spleen and collateral veins that have developed around his spleen they suspect he has a blood clot in his portal vein that was sewn into his new liver.

On June 25th he had a upper and lower scopes to check for bleeding in his stomach, esophagus and rectum. They were also looking for enlarged veins and if so how big and how many. I was encouraged by the fact that he wasn’t vomitting or stooling blood. Trey could only eat clear liquids the day before the test plus he had to drink a ton of Miralx to clean him out. This was very hard on him and us. Thankfully the test got moved up to 8 am. The doctor asked if I wanted to go back when he was put to sleep. I said sure I’ve done this before and he wasn’t happy about leaving me. As soon as Trey saw the gas mask he started freaking out. It was hard watching him. Even though he has been put out so many times it just doesn’t get any easier and I always have a few tears. The GI doc visited with me for a long time afterwards and he did a great job of explaining all of the pictures. Trey has a large varix

It is hard to believe 2009 is coming to an end.

Merry Christmas and Happy 2010 to everyone!

School is going really good for Trey and he loves it. He has made some new friends and it has improved his speech. He does continue to see Tracey his speech teacher 2 times a month. He is behind on some of his beginning sounds but he is getting better everyday. The school year started out with several days of being sick and fevers. One day we got a call from Omaha around noon that he needed to be in Omaha because his CO2 was really low. The usual frantic running around and packing. They called back and said Dr. Botha says he needs to have labs there before leaving town incase the level dropped lower causing him to have seizures. We headed to Bryan ER where we learned his CO2 actually went up. I believe this may be because I saw the results the evening before and knew it was low and I filled him full of water the night before. At Bryan they gave him a bolus of CO2 through IV and after contact with Omaha we were on our way home. Running out of time will update in 2010.

In Sept Trey started Gym and swim and has made new friends. He loves to swim!

We didn’t camp as much as we wanted to this summer. While I was off work for my knee surgery we made a trip to Indian Cave and everyone had a great time! We also made it to Calamus for our yearly trip with family. We were busy packing and getting ready for Trey’s Make A Wish trip the first week of October. His wish was to go to Disney World and ride on an airplane. Not only did Trey get to go but so did his whole family. We were all super excited to get away! The limo picked us and grandma Buettner up at 4 am. The kids’ 1st airplane ride was at 6:00 am. We landed in St. Louis and still nobody has slept.

I know I’ve made posts but where have they gone?

A little over three and half years ago we didn’t know if you would be here with us today. I may complain that I need some quiet time and I know I shouldn’t because I am so thankful that you are here with us. You make me jump by sneaking up on me, you make my heart melt when you say mom I love you, or I missed you, you make me smile when I see you learning new things or sharing with your sisters.

I am so proud of you today on your frist day of Preschool. I wasn’t sure you were going to make it. The day before you were running a 102.6 temp and by this morning it was gone. The doc said you could go to school. The girls were excited to see you after school and ask you if you had fun. They kept saying how quite it was in the car without you. You said at school you went on a bear hunt, had recess outside, made a craft, and had snack. You were tired when you got home and I took your temp and your fever was back to 99.9.

We’ve had a great summer which included a lot of camping and swimming. A trip to Calamus, the Stuhr Museum, Indian Cave State Park, transplant reunion, and Spalding. You went to camp at the Racquet Club and had a blast.

You love jumping into the water on your own and love taking baths and putting your whole head under.

You talk about Christa’s baby a lot. Your dad made a comment the other day that made us all think. You and the baby will share some DNA. You have a lot of questions about God, your cat Grizzy dying and babies and where do they come from.

Last week we put a family computer in your bedroom and you are still excited about it. You like playing games on it. You love to play swordfighting on the WII resort and other games.

You like to play board games, paint, play-doh and ride your scooter and bike.

You love it when you get to go out and see if the tomatos are done in the garden.

You bring so much joy to our family!

As much as I don’t want to see my baby grow up I am happy for you. I am thankful for the many years of fun we’ve had and will have together. I love you bunches my little love bug!

The month of April always reminds me of the day Trey was activily placed on the transplant organ donation waiting list. That day brought tears knowing he was that sick. It was also a happy day knowing he was now activily on the list and had a chance for surviving but what if an organ did not become available.

Please consider being or organ donor if you already are not. Please share with others your intentions. Spread the word that organs are needed and that almost 18 people die a day waiting for a donated organ. Did you know that almost 6,700 people in the US alone die a day.

Thank you to all who are registered as organ donors and thank you to all families that have lost a loved one and whose organs were donated.

It looks as if we are moving right into summer. Truthfully I am ready for warm weather.

I missed a few months of posting. Just not enough time. Being a Girl Scout leader this year is taking a lot more time then I thought. I do enjoy it and I think the girls are having fun.

The 3rd week in February Trey was back in the hospital in Omaha. Since the Saturday before his Tuesday admit he had been complaining of tummy pain and he could hardly move. We ended up in the ER as Omaha suggested. They gave him an enema and xrays didn’t show anything. The enema moved very little. As instructed on Monday I took him to the museum to try to get him active. I knew it was serious when he would just cry and could not even bend over. His pediatrian didn’t like the feel of his tummy and decided incase there were blockage he should be sent to Omaha. Labs were good and they tried laxatives and everything. Nothing was working and he was in some serious pain that he couldn’t even sit up in bed. On late Wednesday he had a barium enema to help loosen things up. It worked and there were no signs of blockage. Why he was constipated is a mystery? He has never has constipation, in fact we have always fought the loose stools. We were happy to go home on Thursday. They took him off his iron medicine to see how he would do. When we got home he had a 102 fever. The fever went away the following Wednesday he had his teeth surgery.
The iron and all of his meds had ruined his teeth and they looked gray. The surgery went good and his teeth look great. We had some extra time post op because he was running a 102 fever. They got it come down some and were able to discharge us. As the fever continued a cough started. That Saturday he was diagnosed with bronchitis. That lasted about a week. We were ready to move into the month of March. Except the 1st week in March I ended up with bronchitis. I felt awful!

He a check up in Omaha the last part of March. He kept saying no Omaha, I don’t like Omaha. The appt went great. In fact so good that they decided to leave him off the iron and do iron studies in a couple of months. They also decided to take him off another med he has been on shortly after transplant. Labs will tell us if needs go back on that one. If he would have some good labs they would like to go to every other month. Something he has never gotten to do. Latest labs weren’t bad but his platelets are back down to 81. We will see where numbers are next time.

We had a great Easter. We spent some time in Columbus. We went saw great grandma Buettner and great grandpa and grandma Sackett. It was nice visiting with them.

Trey is loving the warm weather. His currently still likes Batman. When I tell him him he is going to get hurt he says I am Batman.

We attened the Nebraska Spring game and we all enjoyed it. With three kids half time was enough.

We are all looking forward to camping. Maybe this weekend depending on the wind.

I feel like we lost the month of February. It went by quickly but not without a few hospital stays and several doctor visits. Trey’s site was down for awhile so we were unable to do updates.

The first week in February Trey had been running a high fever. On Sunday night his fever was getting high and Omaha wanted a chest xray. Off to the ER we went. The xrays were clear. He went to the DR on Monday and Tuesday he had labs. With the fever his liver enzymes remained good. On Wednesday his fever remained high even with Tylenol and you could tell he just didn’t feel good. Several times over the past few days he complained of feet pain pain in his legs. When it was time to get the girls I looked over at him and he said mommy I can’t walk, and he was shaking, teeth chattering, a really different cry and his skin was turning purple. I didn’t know what was happening and I was scared. I was always taught don’t make him too warm with a fever. I called his DR and they said come over immediately. The doctor said keep him wrapped in the blanket and hold him and warm him up. They did the usual vitals and made a call to Omaha. After a total of around 35 minutes his body finally warmed up and stopped shaking. The doctor thought it was related to his fever and he thought Trey should be hospitalized. We got to Omaha around 6:00 pm. Labs were done and another chest xray. Xray showed some bronchial junk in his lungs. That night he had 3 more episodes of the shaking, teeth chattering and turning purple but they only lasted 5 minutes. This time I knew to hug him and warm him with a blanket. The Resident was concerned it was a type of seizure but the test they tested for was negative. He continued to run a fever Thursday and Friday. We pushed fluids and he didn’t feel good. Nothing was showing up on labs and his liver numbers continued to be normal. On Friday morning the nurse thought he was getting dehydrated and he started getting purple again. She thought he should have an IV. It actually went in smoothly thanks from the help of Child Life distracting him. Jeff and the girls came up Friday night. Jeff decided to give me a break and send me back to Lincoln with Emma and Anna. (some break) On Saturday morning he tested positive for C-diff. The big question is did he go in the hospital with this or did he leave with it?? Fevers were less frequent, he was feeling better and the doctors discharged him late Saturday afternoon. He went home with a new medicine for 14 days. Their final diagnosis is a viral infection and that was the way his body responded to the infection.

We are wishing everyone a Happy New Year!

We hope you had a wonderful Christmas and that the new year is off to a great start for you!

We had a nice Christmas. The kids visited Santa at the mall and asked him if could stop by our house early since we would be gone on Christmas. On Monday, the 22, there was a knock on the door but the only thing outside the door was 3 large red and green bags and 1 envelope. Santa had left presents and a letter telling us each what we could work harder on and what we had done good throughout the year. Everyone had a great night.

to be continued…..

My baby, I mean big boy, turned 3 on the 12th. Just seems like yesterday when my water broke, 2 days earlier then the planned c-section date. I called Jeff and off to the hospital we went, forgetting our camcorder, and to find out they had no rooms available for the surgery. We frantically called Kelli asking her to pick up Anna from preschool and Christa to pick up Emma from Kindergarten. We were sent to the first floor operating room where the nurse informed me if we seem like we don’t know what we are doing it is becasue we don’t usually have babies down here. Everything went great and that Christmas was a blur. I remember on Christmas Eve being worried and sharing my concerns with family that there was something more wrong with Trey and that I felt by 12 days later he should be over his newborn jaundiced. And here we are 3 years later.

When looking back at all the outcomes that could’ve been we feel truly blessed.

Trey had labs almost a month ago. Most numbers were good, the numbers most out of range being his white blood count and those darn platlets which has dropped to 80. I know it is not a huge concern yet but I can’t help but wonder is there something else going on causing them to drop that everyone is missing. I also know that his enlarged spleen can be eating up his platlets and the doctors once mentioned removing the spleen. I try not to worry. Overall I recently have felt a sense of relief and it looks as if we are moving on from the hospital stays and sickness. But in the back of our minds we know that there is always a chance of rejection, and kidney failure and other side effects that can come from the medicine. It was UNMC that told us our goal is for Trey to live a normal life and we will continue to pray that God will let that happen.

We celebrated Thanksgiving with the Gulzows in Grand Island and had a great day. The next day mom did a little shopping and we spent the day with some of the Buettners eating Jeff’s delicious smoked ribs and watching the football game.

The following weekend it was grandpa Buettners families turn to host the Buettner Christmas for his 10 brother and sisters and their families. Trey and the girls enjoyed running wild with the other children. Aiden was kind enough to share his gift of big feet slippers with Trey and he had so much fun with them. We shared with everyone a calendar of the Buettners, with pictures and birthdays marked for 170 relatives. It was a lot of fun.

While in Columbus we celebrated Trey and Christas birthdays. Trey liked his step stool and race track he received.

And the following weekend we celebrated with grandpa and grandma Gulzow, great grandpa, Shane, Rob, Kelli, Mya and Carter. We had a feast and enjoyed Trey’s wish of a Scooby cake and Trey loved his gifts of Hulk Hands, basketball hoop, Geo airplane, and viewmaster.

Trey is asking Santa for a tool bench and another flashlight. Anna’s top wish is horse riding lessons, pixos, bendaroos and more. Emma would like a laptop computer and Little House on the Prairie movies. We might go to the mall tomorrow to visit Santa.

He can’t wait to get out and play in all the snow. We keep telling him it has to warm up some first, but every chance he can get he will run over into the snow and stomp through it.

We’ve been busy, we enjoyed Emma’s Christmas concert and attended Anna’s concert also. Anna was chosen to be one of 6 stars having ligns to say in her Christmas concert, which made her happy. She did a great job and we were very proud of her. We also attended the Christmas Program at Capital City Christian Church which was fantastic.

Trey has improved a lot with his speech. The teacher is pleased with his progress and it appears soon he will be caught up.

If we don’t update before we hope everyone has a blessed Christmas and New Year.