Moving to CCHS and other news.

We moved to Children's Care Hospital and School on Friday, January 29th. We are happy to be moving there and know that we will receive the help we need to continue to care for Sammy's g-tube issues and feeding complications. We will be back at Avera in a week or so for an eye exam to check out Sammy's eye problems. We are praying that the news will be good an that the eye drops will be the answer to relieving the intense pain and pressure in his left eye. Hopefully, he will begin to tolerate his feedings and begin to eat orally soon too!

Rice Krispies!

Big news on the eating front for Sammy! He ate a bowl of Rice Krispies yesterday and six bites of pudding! Praise the Lord for baby steps! Sam had a very difficult night last night with his g-tube feedings though! He was awake the majority of the night screaming and crying. We have tried four different formulas with him the past few weeks and can't seem to find the right combination of formula and duration of time for his feedings. It was decided that he would have a gastric emptying study done to check out if his stomach is emptying his food at the right speed. This test consisted of giving him formula with radiation mixed in through his g-tube. Next, x-rays are taken every fifteen minutes for two hours. Tomorrow morning, Sam will have another upper GI test and a small bowel follow through to look at how his food is moving through the GI tract. This test will have lots of x-rays involved too. Once Sam is tolerating his formula at full strength, we will be transferred to Children's Care for a few weeks. We need to have help caring for him during the time that his g-tube is vented. It takes two people to move him and we have to monitor the tube carefully to be sure that it is not pulled out of his tummy.


One picture shows his vented tube and the other is a picture of snowman Sam all wrapped up during his x-rays!

Avera Children's Champion of the Month

Avera Children's Champion - Avera Health
Check out the champion of the month at Avera Mckennan!

Here we go again...

Sam was re-admitted to the hospital on Monday night. We had a very difficult five days at home since our discharge last week. Sam has not been tolerating his feedings through the g-tube and not taking much by mouth either. The g-tube had migrated into his tummy too far. We are hoping that by having the tube back in place, that Sam will begin to tolerate his feedings better. He continues to need pain medication for his eye discomfort and is not sleeping well at night. Hopefully, we will be here for a short stay and that Sam will be feeling better once he has food in his belly!

Going Home!

We made it home from the hospital on January 20th with mixed feelings about going home. Of course we were happy to go home, however, Sam was not healthy yet and was not tolerating his feedings very well. Also, we went home to 24/7 nursing care in our home. We are used to having lots of people in and out of our house, but not strangers. We have a pool of 7 different nurses working with Sam. Lots of training is involved and the constant feeling of having no privacy in your own home is definitely something that we have to get used to. Sam was sedated for an eye exam last Wednesday due to a finding on his CT scan last Monday. Unfortunately, the news was not great. Sam has detached retinas in both eyes and glaucoma in his left eye. The pressure in his left eye is 6x that of his right eye. Also, he has a retinal hemorrhage behind his left eye. We are using drops to try and lower the pressure and will have to sedate him again on Feb. 16th for another eye exam. We are praying that the drops are the answer to helping relieve his discomfort.

Day 27 at Avera

Sam started to make gains last weekend, and we were so excited that he was beginning to feel better and tolerate his feedings. However, on Thursday the sinus problems started in again with a vengeance! He is now back on pain medications consistently and very uncomfortable. Sam has a very noticeable pattern with the sinus problems which allows us to know what the problem is, but not how to fix it! He has had three sinus surgeries to clean the junk out which provides him with short-term relief but not a means to preventing the problem. We are now riding out the weekend in hopes that early next week we can put together a care conference with Sam's ENT, allergist and pediatrician. Due to the fact that the sinus cultures do not grow out bacteria, we are leaning toward allergies or an immune deficiency of some kind as the source of the problem. We will try this route before we look at transferring Sam to Omaha or Minneapolis to a pediatric ENT specialist for a second opinion. We are thankful for that fact that Sam has made it for almost a month without an ear infection and that he seems to be recovering well from the g-tube surgery. Oral feeding is definitely of no interest to Sammy right now! This is so tough on us, because we have worked so hard on feeding and eating was something that Sam enjoyed doing. We do know that he is receiving the nutrition that he needs through the tube feedings, but we continue to hope for the day that he regains an interest in eating by mouth.

2 good days!

We are thankful for last Sunday and Monday! Sam had two great days without pain medication!

Time for the grandparents to have a break! Grandpa and Grandma Bennett are off to Las Vegas this week and Grandma Joyce is heading home! Jeff has spent so much time off of work with us, but he needs to get back to his job! I ask for prayers as Sam and I go it alone and eagerly await Jeff to come back to the hospital in the evening!

Surgery Update

Sam is hanging in there and we are so proud of how tough he is! Yesterday was a difficult day filled with lots of prayers and pacing! Sam had fundoplication surgery which is when the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. Sam also had a g-tube put in to assist with feedings and to be used for medications. We are very hopeful that this surgery will help Sammy to feel better and take away the discomfort that he has been experiencing. We are so happy to have the surgery done. Now we are on to the next task which is continuing to control Sam's pain and discomfort and keeping his tube vented and not tugged out of his tummy.

More Sedation

Sam had about a week of relief after the ENT doctor cleaned everything out of his sinuses last Wednesday. Unfortunately, we started to notice sinus problems again on Friday. Today we sedated Sammy again for yet another sinus CT, NG tube placement for nutrition and a PICC line. The PICC line procedure which should have been relatively easy for the doctor, proved to be a big challenge! Sam ended up being sedated for about three hours this morning and had two different PICC line placements before getting the third one to flush correctly. Sam is not fond of the NG tube or the amount of tape on his face holding it in place! We continue to read story after story to do our best at keeping Sammy content, but the more "crap" attached to him the tougher it is! His constant cheering squad of family and friends are a huge blessing for Jeff and myself. Our next procedure will be the stomach surgery on Tuesday at noon. Hopefully, we will also be able to get his sinuses cleaned out for the third time in the last three months too!

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