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!