Update and Thank You

I just wanted to give a quick update to let everyone know where things are.  Stef is still holding his own.  He continues to amaze me.  What an amazing will he is showing.  Our hospice staff has been phenomenal.  They have dropped in every day except for Saturday to check on Stef as well as the rest of us.  I will try to update with any changes in Stef.   It has been a little stressful for me in the home the past few days as he has been confused.  I tend to get somewhat anxious when he is trying to get out of his bed or chair.  I’ve quickly learned that this does not help him settle down.   I’ve also learned that my control-freak personality doesn’t alway work for everyone.  Stef didn’t ever mention that he minded it before, but it really seems to bother him now.   So, we continue to operate from day to day.  Thanks for the continued support and concern.

I also want to say THANK YOU to so many friends who took time to make my birthday today so special.  I got so many emails, facebook messages, text messages, cards,  and phone calls.  It was overwhelming.  It really made this day special.  Also, thanks to all the girls who all met out for lunch.  You girls  are truly wonderful.  It was nice to get out of the house for a little while.  And thank you to Aaron for sitting with Stef so I could get out.  Considering the circumstances, this was a great birthday.  So, while it bothered me to turn yet another year older, it was great to know so many wonderful friends cared.

Also, I want to thank all of those who continue to sit with Stef through the night.  It is nice to be able to get some rest.  And finally, thank you to the amazing cooks who have brought so many meals to our family.  We are so grateful.  The last couple days, I have pretty much had to sit right beside Stef, so it has been nice not having to worry about trying to fix a meal as well.

Sorry for the rambling.  I just want everyone to know that nothing goes unnoticed or unappreciated.

First Days at Home

Just a quick post because I know so many of you are wondering how things are going now that we are home.  We got home yesterday shortly after 2pm.  Hospice arrived at our home around 1130am to start getting everything organized for Stefan’s arrival.  They didn’t leave our home until 8pm.  It was a very long day, but the ladies who were with us yesterday were amazing.  We met two nurses and a social worker, and I was so impressed.  Thankfully, we had dinner provided because it was pretty much a circus at the house.  So, thank you to our church for organizing that, and thank you to the friend who provided it.

The overnight was pretty rough.  Stef was extremely agitated and anxious.  Our church has also provided us with people to sit with him overnight.  We decided to not use that last night because Stef was so worked up and not feeling well.  Not our best decision.   Anyway, he also got sick and started vomiting and also developed a fever of 102.  Thankfully, hospice called first thing this morning and the nurse who has our case came out and met with us this morning. Hospice is trying their best to manage everything.  Dr. Martin also called the house to see how the night had gone.  He continues to amaze me.  So, hopefully, tonight will be quieter and more restful.  And we are having people come in and sit with Stef tonight.

I also wanted to thank a special friend of mine-Melanie.  She has done so many little things to help out.  She has scheduled meetings, made phone calls, picked my kids up from school, taken them to get haircuts, and much more.  Thanks, Mel.  You’re the best!!

There are many others who have helped out as well.  I so appreciate it all.

Heading Home

Well…… after 6 weeks and 6 days, we’re heading home.  Stef has really wanted to make it home and once again insurance has gotten in the way; so, after talking with Dr. Martin’s nurse, Shelly, for quite some time, meeting with a social worker, and meeting a different hospice team, we have made the decision to go home sometime tomorrow.  I have to be honest that this makes me a little nervous just thinking of everything that will need to be done at home.  However, even though I am worrying, already things are getting taken care of.  Our church is providing meals 4 times per week and they are going to continue to have people sit with him in the evening so I can try to rest.  So, while today was extremely stressful, I am still amazed by and so thankful for such a wonderful support system.  I know we can’t see what’s ahead in the near future, but it is so comforting to know that people continue to pray for us for whatever may come.  

I also wanted to send a big thank you to a special group of girls who took me to dinner for an early birthday dinner.  It was so nice to get out and participate in life.  So, thank you, girls!!  

Once again, I would ask that you continue to pray for our kids and us as we make this next transition.  There are many things that concern me in connection with him coming home.  He needs quite a bit of care still.  Also, I have tried very hard to keep the kids protected.  Hopefully, their home will continue to be a place of comfort and wonderful moments for them.  I will post again in a few days to let you know how our transition goes.  Have a good evening.

Staying Here

Sorry, that I have not posted in quite some time.  We have had some ups and downs for the past two weeks.  The past few days, our insurance company has really been trying to move us out of here, so that has been incredibly stressful.  But thanks to some good friends and people here at The James, we don’t have to leave.  The insurance company will evaluate again in a week if we are still here then.  I was so stressed about this, so it is so nice to be able to breathe a little bit.  Stef is not doing very well today.  He has been sleeping most of the day.  I am so thankful for the last couple weeks when he was able to communicate more.  Even though emotionally it was a roller coaster, I really treasure those moments. Thanks to everyone who has been so supportive.  And a big thank you to Shelley, Mary and Tiffany.  I really appreciate the work you guys did in keeping us here.

Much To Be Thankful For…

I know I said it might be awhile until I posted again, but I wanted to give a quick little update.  Stefan has been much more alert the last couple of days.  It has been so nice to sit and visit with him even briefly.  The kids have also enjoyed being able to talk with him.  We are so thankful for these times.  And once again, we are so thankful for such a wonderful doctor.  Dr. Martin actually had his son drop him off at the hospital while he ran some errands so he could visit with us for a short time.  It was so touching to have him stop in on Thanksgiving morning.  He was very encouraged to see Stef more alert.  We’re still going from day to day, but it is so nice to have these moments.  So, even though we are here at the hospital today, we are so thankful for so many things—Stef’s moments of being awake, our amazing doctor, our incredible friends, and our church family who has truly gathered around us by sitting with Stefan overnight, providing meals, and encouraging us in so many ways.  Please know how thankful we are and that we don’t take any of these things for granted.  I hope everyone has a wonderful Thanksgiving.

Update

I just wanted to give everyone an update for right now.  I know everyone who reads this blog has been praying for Stefan and our family and has shown such amazing care and concern.  On Thursday, Dr. Martin and his team of nurses and I met to discuss Stefan’s condition.  We decided then that we would remove the TPN that Stef was getting for nutrition and we would stop treating his pneumonia.  Without going into all the details, I will just say that as a group, we decided that this was the next best step.  They are continuing to keep Stefan hydrated and comfortable with pain medications.  Right now he is resting comfortably and that is so nice to see as I have seen him deal with amazing amounts of pain. 

I want to ask everyone to continue to pray for our children.  They had such a wonderful visit with their dad on Wednesday evening.  He was able to sit up and talk with each one of them.  I brought them back on Friday evening and it was a much different story.  I think the reality of his situation settled in with them.  This ended up being pretty traumatic for them as they were not able to communicate with him.  Please pray for comfort for them right now as they so desperately need that.

I also wanted to thank our church family.  Since Thursday evening, different people have been sitting with him through the night.  It is so comforting to know that there are people who care so deeply to sit with him so he does not have to be alone at all.  So, thanks to all of you who have sat with him so far.  I know it helps him stay more comfortable knowing someone is right beside him.  So, while it may seem like a small thing to you, please know that I am forever grateful for that.

Finally, I may not be posting for a little while.  Stefan’s condition is not looking good at this point.  I will only post if there is any change in that in either direction. Thank you so much for the overwhelming support from all of our friends, family, and co-workers who have stopped by to see us.  I have loved seeing each one of you.

Staying Put

Well, we are staying here at The James.  After meeting with Dr. Martin yesterday morning, we have made the decision to stay here.  He felt most comfortable keeping him here instead of transitioning to our home.  Stef had a bad night on Tuesday night. He had some trouble breathing and felt as though the room was spinning.  He felt hot as well and his oxygen levels were not where the nurses wanted them to be.  They have hooked him up to oxygen so that he can breathe a little easier.  It was also discovered yesterday that he has pneumonia.  They are treating him for this, but it is not uncommon since he is not really moving around that much.  The past few days have been pretty rough with many things we have had to deal with.  I would once ask again for prayer for the days ahead as we don’t know what they may hold.  I brought the kids up last night to see Stef and we had such a great visit.  I am going to bring them up again on Friday night from about 5pm – 7pm and would ask that we be able to spend that time together as a family.  Anytime before or after that we would definitely welcome visitors.  I really appreciate those of you who have contacted me over the last few days either by email, phone, or on the blog.  Although I haven’t been able to answer all calls, please know that I appreciate the concern.  I have so appreciated all the support I have gotten.  Please remember to pray for our 3 sweet children.  They have so much going on in their little lives.  Have a good evening and thanks for checking in with us.

Figuring It All Out

Well, we are still here at The James.  I’m not sure how much longer we will be here as they seem to be trying to transition us to home.  We were originally thinking about transitioning to Kobacker House here in Columbus.  It is an inpatient hospice facility.  Our original plan was to go there for a few days so that I could be completely educated on how to completely care for Stef.  After touring it yesterday, I just felt more comfortable trying to go home.  I’ve heard many wonderful things about this facility, but just didn’t feel like it was for us.  So, Dr. Martin said we should stay here at The James until I have learned to manage all aspects of Stef’s care.  I would anticipate going home in the next day or so.  I am meeting with Dr. Martin this evening to review the day.  Hopefully, after talking with Stef and myself, he will be able to tell us which day we will be going home.  We are all ready for him at home.  The kids are so excited that it is going to be happening soon.  We are using hospice for the time being.  They have delivered a bed so that he is able to rest more comfortably on our first floor.  It will be so nice to be home.  However, I’m sure it will also be overwhelming in the beginning.  Please pray for us in this regard and also for our kids as they have a lot going on in their young lives right now.  Have a good evening.

PEG Tube is in!!

Well, I wanted to update everyone.  They were able to place a PEG Tube this morning.  Between our surgeon and his fellow, it took only about 1 hour.  This was such good news.  By doing this, it was much less invasive.  He is in some pain back in the room right now, but he also seems to be resting pretty comfortably.  I got here at 545 this morning because they wanted to take him down to pre-op at 6.  By 730, they had all the paperwork done and were ready to start.  Dr. Martin told me to wait up in Stef’s room and he would come speak with me once everything was done.  Shortly after 830, he was walking in the room.  He seemed really pleased with how things had gone.  He gave me a brief hug (which is not really his style) and said everything looked good.  By about 1010, Stef was brought back to the room.  I am so thankful to those of you who have continued to pray for us and check in with us.  That means so much.  We’re hoping that with this PEG Tube, he will be somewhat more comfortable. 

I also want to say THANK YOU to all of you who helped make our anniversary so special.  It was absolutely overwhelming.  The nurses and PCA’s on our unit, Dr. Martin’s nurse, Shelly, our doctors and our wonderful friends all did things to add to the day.  We had flowers delivered, cards sent, little gifts brought up; and thanks to a dear friend, we were able to watch a movie and eat a little dessert.  Three nurse managers had set up a little room with some music, candles, streamers, and cake & ice cream.  We wheeled Stef down there for about 15 minutes, so we were able to get out of his room for a short time and “celebrate” 14 wonderful years.  We actually agreed that even though we wouldn’t choose to celebrate our anniversary in the hospital, if we had to do it, this was the place. 

Finally, I want to thank some amazing friends at my Mom’s group at church and amazing community members of ours.   Between the two groups, we received some cash and an absolutely amazing amount of gift cards.  I was truly speechless.  So, thank you for being so thoughtful and caring.  I was truly floored by the number of people that gave from our community.  Several of the names I didn’t even recognize.  They had either heard about us through the school or through friends and neighbors of ours.  It was truly amazing.  I only hope that everyone reading this is as blessed as we are with such amazing people in their lives. 

Sorry for such a long post, but I just wanted to update and say thanks at the same time.  Take care and have a great day!!

The Latest

Hi, it’s Sandi again.  Well, we are still at the James.  I think I’m going to quit posting when we might get to go home as that keeps changing.  This Thursday, it will be 3 weeks that we have been here.  I am definitely ready to be home.  However, I don’t want Stef to go home too early only to have to return a couple days later.  It is just tiring being here.  I really miss the routine of our family life.  You don’t realize what you will miss until it’s not there.  I know it is also hard for the kids to have both of us gone all day, but thankfully my mom is keeping their schedule running as normally as possible. It was also great to have them come visit Stef on Sunday.  He enjoyed seeing them and they were so happy to see him.  This was their first visit since he was admitted.  Our middle child, Justin, had such a hard time leaving.  That’s what is so hard.  And Carley whimpers at bedtime because she misses her daddy.  We’re all ready for him to come home.   What is holding us here right now is the fact that Stef’s G-tube that was placed 2 weeks ago was accidentally pulled while he was getting back into bed.  The surgeon came in yesterday morning and determined that it was indeed out of the stomach, so he pulled it the rest of the way out.  He wanted to see how Stef would do with the G-tube site just freely draining into a bag.  Last night, however, Stef started vomiting, so we’re thinking that the tube may have to be put back in  in order for his stomach to drain adequately.  With today being a holiday, they are operating on a skeleton crew, so it will  most likely be tomorrow or Thursday before anything is done.  Please continue to pray for our kids as this continues to weigh heavily on their little lives.  Also, please pray that Stef would have increased strength and a desire to eat.  He is getting TPN for nutrition, but I think it would help him mentally to actually eat by mouth.  And now with this matter of his G-tube, please pray that if they do put another one in that it would be easier than the first time and that it would stay in place.  Thank you so much for your concern and your prayers.