Avera Happy New Year to you!

Happy New Year to you. We are spending yet another holiday in the hospital. Sam had a colonoscopy, endoscopy, a PH probe and a pill cam placed on Tuesday morning. The Prep work for the colonoscopy was a lot of work, but it went better than expected. The chair did get a work out though!

Jeff and I went back with Sam to prep him for his procedures and Jeff actually went in with Sammy while they put him to sleep. We were able to get the information we needed from these tests and that was a huge answer to our prayers! We did find out that Sam has significant reflux which means that we will need to proceed with surgery and a g-tube placement to help him feel better. We certainly did not expect this outcome when we admitted Sam 12 days ago. However, with the results of the tests and Sam's continued discomfort, we feel comfortable with what needs to be done. Surviving after the surgery is another story! Sam will have to be vented for six weeks and that means he will have an open tube attached to his tummy. As you know, our little guy likes to move around so this will provide quite a challenge for us. We also hope that this is the answer to the chronic sinus problems that he is having. His reflux can go all the way up to his sinuses and is also the cause of his eating problems the last few weeks. We expect that Sam will have surgery on Tuesday and we will remain in the hospital until then. He will most likely have another NG tube placed so that he can get the nutrition he needs to be strong enough for surgery and recovery. After the surgery, we will be in the hospital for another 5-7 days. Keep the prayers coming please! We are so thankful for the wonderful support system that we have with our family and friends! The prayers and support are keeping us strong through all of the difficult days. God Bless you all!

Still here...

we are on day number 8 with Sammy in the hospital. When one thing seems to get better, another thing starts to get worse. He has had three IVs put in during the last 8 days and unfortunately, his third one quit working yesterday morning. We gave him a chance to drink on his own, but he only took 15oz all day. So, we are back to having to place another IV. He has lost close to 3 lbs in the last 8 days and will have a NG tube placed in his nose for nourishment and prep for his up coming colonoscopy, endoscopy and PH probe. We are now looking to the GI issues as a source for his continued discomfort and sinus irritation. We will be here for awhile...

Hanging out at the hospital

Avera Merry Christmas to you!

Christmas in the toy room at Avera Mckennan



Well...we are still in the hospital! We were hoping to be home for Christmas, but now we are just hoping to go home early next week. Sam's sinus surgery went very well and his Dr. was convinced that he got everything cleaned out! Sam had a pocket of fluid behind his right ear tube again and "rubber cement like" snotty junk sitting in the left side of his sinuses. The pressure in there was most likely causing the redness in his left eye too. Our biggest obstacle now is waiting for him to start eating, drinking and going to the bathroom on his own. He continues to need IV fluids and a catheter. We are thankful for a better day today! The picture above shows Sammy with a smile, his first one for the past week! My parents and sister were able to venture through the 15+ inches of snow today to bring us a bit of Christmas cheer. We definitely do not plan to make a tradition out of celebrating Christmas in the toy room at the hospital! We are in the best place for Sam this Christmas and we are thankful to be together with a wonderful team of doctors caring for him. Merry Christmas to you from the Horstmeyers

Back in the hospital again...

After Sam finished his second round of IV meds, he seemed to feel better for about four days. We were able to enjoy watching him in his Christmas program at CCHS. He was a perfect little donkey and even "hee hawed" by hitting his switch. We have lots of fun pictures that I will post when we get home.

Sam was admitted to the hospital again on Monday December 21st. He continued to get worse throughout the weekend and we ended up needing pain control for him again. He will be having sinus surgery on Wednesday morning (12/23) which will be a similar surgery to the one he had on October 1st 2009. He is also on yet another antibiotic to try and get rid of the infection in his sinuses. We are praying that this finally clears up the problem that we have been dealing with for the past two months. Sam will also have an upper GI to determine if his reflux is causing the problems with his sinuses. He has severe reflux and we treat it with a lot of Prevacid, but that does not stop all of the issues associated with it. On a good note, his seizures have been much less frequent than earlier this fall. The new medication we added after our trip to St. Paul has been a good choice for Sam.

We would love to say that we will be home for Christmas, but it is looking less like a possiblity right now. We are taking things one day at a time and will see how things progress for our little guy! He is a trooper and so resiliant. I'm so proud of him every day and so thankful for the wonderful team of doctors that we have working with us! Merry Christmas to you and may God bless you with much joy and happiness in 2010.

Home with a PICC line

This post is a bit late, but we did go home from the hospital on 11/20 with a PICC line in Sam's arm. We continued IV medications at home for 10 days. Two days after we stopped the meds, Sam was sick again! We then started a different IV med three times a day. Jeff and I became very good nurses and can now whiz through changing PICC line dressings and giving IV antibiotics. This is something neither of us ever wanted to know how to do, but we were thankful to be able to have him home during this time. Sam had several tests during this hospitalization. He had a head CT, sinus CT, kidney ultrasound, hip CT, two days with a catheter and several other tests! We do know that he will need to have surgery on his hips sometime this spring. The recovery from the hip surgery will be six weeks in a cast. We are taking things one day at a time right now, and trying to keep him as healthy as possible during the winter months.

Hospital again...

We arrived home from our trip to St. Paul in time to take Sam in for a double ear infection. After trying three different antibiotics, Sam continued to get worse and experience more and more discomfort. We took him into the ER on Monday (his 8th birthday) and he was admitted. Sam has been sedated three times since we came in for a bunch of tests and procedures to try and determine the source of his discomfort. He had a PICC line put in on Tuesday and is receiving two different IV antibiotics. He is also experiencing a great deal of pain and has been on Morphine continuously. We do know that his hips are dislocated and have been for some time. Treatment for this will be determined after the pediatric ortho doctor examines him. Also, his ears are looking better after two days of IV antibiotics. The grandparents are starting to wonder where they live! Between 9 days in St. Paul and 3+ days in the hospital this week, they have logged numerous hours supporting us during our time in various hospitals. We are so thankful for the wonderful prayers and support from our family and friends!

Helmet Scan

We had Sam fitted for a helmet in St. Paul because he sometimes hits himself in the head when he is in pain or discomfort.

EEG leads are off and its bath time!

Sammy was such a star and left his EEG leads on for three days! The doctors were able to get some good information from the EEG and we found out that he is also having seizures during the night. We were all very excited for Sam to have a bath and be free of his attachment to the computer!!!

St. Paul Children's Epilepsy Unit Update

Hello, I finally got a minute to update the blog! We have been in St. Paul since Monday and plan to be here through the weekend. Sam got hooked up to the EEG on Tuesday afternoon and has been absolutely amazing! We are so proud of him. He will remain hooked up to the EEG as long as possible so the Doctors can continue to monitor his seizures while medication changes are made. He had over 100 seizures during the first 24 hours he was in the hospital. We are definitely glad that we made the trip!

Sam had a tougher day yesterday. He has a bit of "cabin fever" and the EEG leads are getting itchy since they are super glued to his head! Sam often bangs at his head when he is in discomfort, so he will be fitted for a soft sided helmet while we are here. A new medication was started yesterday too, so we will see how he does today. We are less than thrilled with the side effects of this med, but the doctor feels that it is the best choice for Sam.

My parents and Jeff's mom are here with us and we are so blessed to have their help! We appreciate all of your prayers during this challenging time and we also know that they are working because Sam has been such a good boy!

Seizure Update

I thought I would share the latest info on our next step for Sam. We will be traveling to St. Paul for an inpatient visit on Oct. 27th. Sam is scheduled to check in at St. Paul Children's Hospital at 10am on Tuesday the 27th. I have attached a link that tells a bit about the epilepsy center at Children's. We will plan to stay a minimum of 2 days with the possibility of up to a week. Sam will have a 24hr EEG and see a pediatric neurologist during his stay in the hospital. It will be quite a challenge for us to be away from home, but hopefully we will get some good information to help treat Sam's seizures.
http://www.childrensmn.org/web/services/035705.asp

Sam has ear and sinus surgery at Avera Mckennan

After a tough summer and fall, we finally got Sam in to have surgery on his ears and sinuses! He struggled with infections all summer and after four different antibiotics and countless trips to see his doctors, we decided it was time! He had surgery to replace his ear tubes, clean out fluid found in the middle ear, cut out adenoid tissue that had regrown, and he also had a sinuplasty http://www.youtube.com/watch?v=x7WlyWTFWrc(balloon procedure to inflate the sinuses.) His seizure activity has also dramatically increased since June. He has averaged up to 60 seizures daily. We are hoping this will decline once he is healthy again. We are planning a trip to Minneapolis in the near future to once again try to find a doctor that can help control his seizures. Also, we did some more genetic testing in September which resulted in no new information. We were discouraged by the results, but will continue to search for a diagnosis for Sam in hopes that we will be able to better treat his complex seizure disorder. As a result of the chronic infections and seizures, we have seen a big decline in his motor skills and ability to bear weight on his legs. I will try to keep the updates coming. Thanks for continuing to keep Sam and our family in your prayers.

Augie Football Fun!

We have been having fun watching Augie football this fall! Go Vikes!

Sam's new bike!

First Day of 2nd Grade at CCHS!

Time for a new buzz!

Sam's Education Assistant Kathie graciously comes over to cut Sam's hair at our house! As you might imagine, he is a bit challenging when it comes to hair cuts!

Weekend in Watertown

We traveled to Watertown for the first time in a year! Sam did very well and we had a great time with Grammy and Grandpa Horstmeyer, Auntie Lori, Uncle Patrick and cousins Maggie and Molly!

Astronaut Curt Brown visits CCHS!

Sertoma Butterfly House Field Trip