Our CCHS Home...

Here are some updates from the past week. We (Sam and I at night and Jeff in the evenings after work) are currently living in the Fisher-Coon Unit at Children's Care Hospital and School. It is the medically complex part of CCHS. Sam is on IV antibiotics 6 times per day and has had new ones added and changed daily. I believe that his doctor together with the infectious disease doctor have found the two they need to get rid of the junk that grew out from the cultures taken last week. However, that means that Sam is hooked up to IV meds for at least 13 more days. He is being a good boy despite all of the poking and prodding! It looks like he will be transfering back to the hospital after our stay here for surgery and a g-tube placement. This is a heart wrenching decision for us! We are confident in our doctors recommendations, however, we do not want to make the wrong choice for our Sammy! He will have a very difficult recovery for about 8 weeks after the surgery. We will probably return to CCHS during the recovery time and not be home for quite awhile. We are so thankful for all of the prayers and encouragement that we have received over the past few weeks. Please continue to pray for Sam's health, guidance for our difficult decisions, patience for Sam's recovery and for Jeff and myself. We are used to not spending much time together, but at least we are usually in the same house at night. Being in different zip codes is a bit of an adjustment! I have added a few pictures of Sam's room at CCHS and one of him playing with his piggies. We are anxiously awaiting bringing him home again.

Thursday Update

Roberta again---Sam didn't stay asleep too long after I left last night and was awake by 11pm. Erin was home long enough to turn around and head back to the hospital. He was awake on and off every hour or so and then the three of them slept in the tiny hospital bed! Cozy lil' family.
The Care Conference happened at 10am this morning. Erin, Jeff, and John were involved with Sam's doctors, RN's and Social Workers from Children's Care Hospital. They were supposed to come and get Sam for surgery to put tubes in his ears at 10:45ish and while waiting Sam was back to his old self at times with Grandmas Joyce and Donna and I. We read stories and walked the halls with the iPod. He wasn't able to eat or drink this morning and so when the surgery got pushed back, we were worried. He was a trooper and went to surgery about 1pm.
During the conference it was decided they would put in a PIC(sp?) line for the antibiotic and he would be transferred to Children's Care Hospital and be in their medically complex unit for a couple of weeks while he kicks the sinus and ear problems. Long term plans are yet to be determined for sure. They will also put in a feeding tube, but that will be a couple of weeks yet.
John, Donna, Jeff, Joyce and I toured CCHS this afternoon to see where he'll be for a while.
Again, I am sure I have forgotten details, and I haven't seen him since he's been out of surgery. I am on my way back to the hospital shortly.
thanks again for the support and prayers, keep them coming...change is difficult and we will continue to lean on our faith, family and friends.

Update

Roberta is writing this update, so I am sure some details have been forgotten.
Sam slept pretty well last night and had to be woken up this morning. Erin went home last night about midnight and got some rest and Jeff stayed with Sam overnight. Sounds like that is the plan tonight too. He had a better morning, though still clearly uncomfortable and just not content. Sam had a swallow study and esophagram this morning and it showed he had significant reflux, which Erin thinks could be seeping into his sinuses and causing pain. Erin is practically a doctor, she doesn't have the letters behind her name, but dang she knows her son.
This evening Grandpa John and Grandma Joyce walked him and tried to calm him down to fall asleep and eventually he did fall asleep in his mommy's arms and was asleep when I left the hospital about 9:45pm
Tomorrow is a big day, Erin and Jeff will have a care conference with many of Sam's doctors and other representatives from support services. Sam will also have tubes put in his ears at 11:30am.
Erin and Jeff are truly amazing parents...Joyce, John, Donna, Kelsey, Brenda, myself and others are also taking their turns with Sam. It does take a village to care for our precious boy.
PLEASE keep us all in your prayers, we need them!
More to come after tomorrow or if Erin reads this and adds what I have forgotten!

Sam's at Avera Mckennan

We admitted Sam this afternoon because we were no longer able to control his pain at home. His blood tests are normal, so tomorrow he will have a head and stomach CT to try and find the source of his discomfort. He is on Morphine and that seems to be helping. More to come...

Please pray for our boy!

We are in need of prayers for our Sammy! He has not been feeling well for the last 10 days. His neurologist, GI and pediatrician have not been able to figure out the source of his discomfort. As a result, he is on a lot of pain meds and Valium all day to try and control his pain. The doctors are planning on admitting Sam on Monday to the hospital. Please pray that they figure this out for our boy!