September 26, 2011

We had a little bit of a bumpy road this weekend. Jon was very tired and started to get sick from the antibiotic he was on. We were able to talk to the doctor and she recommended we stop the antibiotic to see if it was making him sick. Sure enough, he hasn't been sick since he stopped it. :)

Sunday was a really good day, he slept for most of the morning only waking up to take his meds. Once it was football time he started to wake up and stayed awake the rest of the day. He watched football the whole afternoon with Seth and Ben. He was able to eat a scrambled egg and kept it down! He really enjoyed watching the Raven's win. Yesterday was the first time he was commenting each play! It made me really happy to hear this and watch him enjoying football. :)

This morning he was very tired again and his urinary tract infection symptoms seem to be coming back. We immediately called the nurse who told us to call Dr. Miller to find out how to get the antibiotics back in him. We are still waiting to hear from Dr. Miller to find out what to do. I think we might be visiting St. Agnes this week to try and get this straightened out. I will keep everyone posted on Jon's status through the week.

We have a baby Bruce appointment today and will hopefully get lot of pictures for Jon to see. He has decided to stay home and rest. 

September 22, 2011

Good evening everyone, I wanted to give you all a quick update on Jon (with Anne's help). He had an appointment at St. Agnes today with Dr. Miller. Jon's weight and oxygen levels are up, which is good. Dr. Miller was happy with the air flow in his lungs. He does have a urinary tract infection which will be treated with antibiotics, but she was generally pleased with how good he looked. She was also glad that Jon had put himself back on a liquid diet to reduce the vomiting, and didn't' seem overly concerned about how tired he has been. Unfortunately, as soon as they got home Jon was sick to his stomach. Jon seemed to think that he had eaten too much ice (he loves the hospital's crushed ice). Anne says that he's been sleeping most of the evening. Anne continues to take wonderful care of Jon and she now has a little baby bump. Thanks again to you all for your continued support. I don't know what our family would do without you. Prayer requests: Tumors will shrink Jon will gain strength That the antibiotic will not upset his already tender stomach Continued strength and good health for Anne and the baby Lots of love, Susan, Sue, Susie, Mom and Grandmom :)

September 20, 2011

I am really slacking when it comes to posting! I write them, and then have my awesome sister in law look over them (she is an english teacher) and then I forget to post. I should be caught up now.

We are continuing to take each day as it comes, everyday is something different. Jon was doing really well at the end of last week he was starting to eat a little more. He was able to keep a piece of toast with jelly down one day, and then a poached egg another day, and some scrambled eggs over the weekend. He really enjoyed the scrambled eggs and you could tell after he took that first bite. Then towards the end of the weekend he trowing up. Jon has decided to try and stick to mostly a clear liquid diet to try and keep things down. He has been napping quite often and doesn't have a lot of energy but seems to be more comfortable. He is in less pain which is a good thing but it is still hard to tell if the Zelboraf is working. He was scheduled to have a CT scan on Thursday but Dr. Miller has decided to give it more time before they put Jon through the process of a CT scan (even healthy people don't enjoy the contrast liquid). Jon has 2 physical therapy appointments this week. Jon told the physical therapist he wants to be pushed. He would like to get active as quickly as possible. He did mention that the pain in his legs seemed to be a little better yesterday which was good to hear.

I started typing this before the physical therapist came, I am now finishing it after he left and Jon walked outside today for about 15 minutes! I went to the dentist this afternoon so I was not here for his walk but Jon said it felt good to walk outside. Jon said Landy, his physical therapist was very pleased with how good he did! Jon seemed to be in a good mood when I got home and seemed excited to tell me about his walk :)

Now it's 8:45 and it's time for Jon to be unhooked from his TPN gotta go :)

Tuesday 8/13/11

We woke up early to get Jon unhooked, so I thought...I opened the TPN bag and realized it was still full! I messed up and for got to unclamp the TPN, was nervous to tell Jon. I told him and he was very calm and said we should call them and see what we should do. So I did like he said and called the TPN company and our nurse, good news was the TPN was good for 24 hours! Jon wanted to switch the TPN to daytime so it worked out well. I started TPN pump and then we started the day. I got Jon in the car with the help of my mom, and we were on our way to the hospital.

When we got to the hospital I got Jon checked in (just by walking by and waving, he is like a celebrity there!) The nurse Linda had his fan, and bed all set up and was waiting for him. She immediately started working on unclogging his picc line. it took a little time but eventually she got it! While we were there we were able to have Jon's labs done while we were there, as well as see Dr. Miller which was a bonus! She listened to Jon's lungs because the home nurse was concerned when she heard some crackling. Dr. Miller listened because Jon was concerned as well. However Dr. Miller was pleased because Jon had not had crackling before and now he is, she said this means the crackling that sounds like rice krispies is from his lung, its the sound of it expanding and she was pleased at the improved air flow. We waited for the lab results to come back before we left.

The results came back and some of the levels were borderline low. Dr. Miller came by and said she didn't think he needed one because the levels were borderline. But after talking to Jon and hearing that he was pretty tired she decided against her first decision and wanted Jon to get a blood transfusion. She said it can only help and make him feel better. She scheduled it for Wednesday.

After we made the appointment for wednesday we headed home. Jon was happy to be home and not looking forward to tomorrow but knew it would help him. We had a few visitors throughout the evening and then we did our usual nightly routine with unhooking the TPN and taking care of all Jon's meds.

Jon's home! Sunday September 11, 2011 I wrote this and never posted it :(

Hello Everyone,

First off all, I apologize for not posting for the past few weeks.  We did not have internet in the hospital, and by the time I got home in the evening it was usually pretty late, so I would go strait to bed to do it all over again the next day. So this post may be quite long...  It has taken me 3 days just to type it!

Jon ended his 16 day hospital stay when he came home from the hospital on Sunday afternoon during the Raven's game. He started his Sunday watching all the game day pre-shows. He was able to see the beginning of the game while waiting to be discharged. We were ready to leave around the 3rd quarter. We got all of Jon's stuff loaded up in the car, and then he was brought down. Thank goodness 98 rock plays the game, and we were able to listen to it the whole ride home. We arrived safely, and Jon got reacquainted with his recliner and then checked out his new bed in the living room. He saw last few plays of the game once he got settled. Once we got everything situated, Jon rested while I put things away and tried to get a little organized.

The rest of the evening was pretty hectic. We had to figure out medicines, as well as meet with a nurse. On top of all this, we had to make sure Jon was comfortable. His mom stayed for a while to help me with everything, and it was very nice to have a helping hand. After a while, we heard from Jon's home nurse when she let us know she was on her way. I was pretty nervous because she was going to show me how to hook Jon up to his TPN (Total Parenteral Nutrition) through his Picc line. She arrived with quite a few boxes and got right to business, walking me through mixing up his "steak and eggs in a bag." There were a lot of different steps to remember. I felt okay doing it with a nurse but was even more nervous once she left and I realized I was on my own to unhook him in the morning. I tried not to freak myself out and focus on the steps in my head.

Once the TPN was all hooked up I went back to the kitchen started walking myself through it in my head to calm my nerves. I sat down for a few minutes until it was time for Jon's premeds. These are the meds that Jon takes an hour before the Zelboraf medication. These include anti nausea meds and Aleve to help him stay comfortable. We were able to get through the first evening and night. I slept on the couch so I could be near him in case he needed me during the night. The night went well, and we woke up early to unhook the TPN. I started to unhook the TPN and realized the one line was clogged, so we called the nurse. I continued to unhook the line with the TPN and accidentally squirted Jon a little in the face when I unhooked it! I tried not to laugh but couldn't help it. The clog was the only issue I had that morning and the nurse that was coming in the afternoon was going to try to fix it. We continued the daily routine of TPN, Premeds, and Zelboraf and hoped we could get the line figured out later. Then I took a much needed nap (any one who knows me knows I hate naps!). I was so worried about Jon the night before I woke up anytime he moved. I think my body need a little more sleep.

We received many different phone calls that day from all the different people that were making appointments to see Jon this week. It was extremely confusing to figure out who everyone was and what they were planning on doing. We had different nurses, as well as a physical therapist and an occupational therapist. As the day went on, I continued to help Jon do whatever he needed and get him whatever he needed.

The nurse came that afternoon and went over paperwork but didn't seem too worried about the clogged line, Jon joked with her a little, saying that was all he wanted her to do. He was a little worried that she wouldn't be able to do it. Unfortunately, it was too big of a clot for her to fix without medicine. For the remainder of the evening, we did our best to figure out a way to get the medicine to our house. No such luck. Dr. Miller said to come back to St. Agnes where they would take care of it. Jon was not happy about having to make that trip, but he does whatever needs to be done without complaining. After the news about having to go to the hospital in the morning, I started preparing Jon's TPN and got him hooked up with the supervision of the nurse. After starting the pump, I did the normal night meds, and then we watched TV till we went to bed.

September 14, 2011

Hi Everyone,

I just wanted to give everyone a quick update. Jon was able to come home Sunday late afternoon. It was so good for him to be home but it was exhausting getting everything set up for him to be comfortable. Anne missed her calling and should have been a nurse. She very quickly learned how to set up Jon's IV nutrition. It's a very complicated procedure and she jumped right in. I am her back-up and hope that she's always there because I'm not as nearly as confident as she is.

Since being home, they have had to go back to St Agnes two times. Once to unclog Jon's picc line and the other to get a blood transfusion to give him more energy. Jon is happy to be home and it's nice to see him and Anne able to rest at home and have some time together. We are asking that you contact either Anne or myself if you would like to visit. Jon has very limited energy at this point and really needs to be able to rest to keep up his strength.

Anne and the baby are doing well. Jon's home care nurse made a prediction about the sex of the baby...we'll have to wait and see if she's right...:) God has blessed us with an amazing daughter in law. Anne continually amazes me with her grace, strength, intelligence and love. She is very funny too and I am constantly in awe how she takes each day and it's challenges and finds a way to smile and make it all work. She is going to be such a good mother! She and Jon are a great love story. Even in times such as this, they are fun to be around!

As always you are a blessing in our lives. Thank you for all that you do for our family.

Prayer requests:
Jon will be able to eat and keep down food
Jon's breathing will continue to improve
Anne and the baby Bruce's continued good health
Physical comfort for Jon
Shrinking of tumors

Lots of love,
Susan, Sue, Susie, Mom and Grandmom:)

Sunday 8-29-11 I wrote this and never posted it! It is old but you might be interested in it.

The past few days have been a step in the right direction. Jon is still very weak and doesn't have much energy but he has said because he felt so bad the last few days the slightest improvement has made him feel better. The last time he weighed himself at home he weighed 150, the nurse weighed him this morning and he is already back up to 164! Each day we pray he gets a little stronger and a little more energized. He was able to start introducing clear liquids back into his diet today. He started with jello, and then some orangeish/redish broth that he said "tastes like there is squash in here." He had a little more chicken broth later in the day but wants to take it slow. Jon doesn't need to stress about eating now because he is receiving "food" through a PICC line. The Doctors want him to just start slowly, and get as much as he feels he can handle with out feeling bad. Dr. Miller said because he really hasn't had a full meal in months, his stomach is very small and can only handle a little at a time. Over the next few days he will continue to get "food" through the PICC line but also continue to increase the actual food intake gradually to help get him eating again. Dr. Miller predicts that Jon will be in the hospital a few more days to get him a little more healthier before he comes home. Jon is very happy where he is because he can feel his body getting a little better each day. He will keep his picc line in when he comes home to continue to get his "food." We will get a visit from a home nurse regularly to help us change the dressing and keep it clean.

His stomach pain was controlled for the majority of the day and he was able to stay awake and visit with his many visitors. Ian, Hillary, Justin and Katie came by after lunch. As soon as they left uncle Russ, and aunt Lauren were in the area and wanted to see how he was doing. By the time his dad and Shawna arrived he was pretty worn out, he took a little nap. After his nap for the rest of the evening we shared stories and just talked. It is really nice to see Jon smile and get excited over small things like Scratch-offs. I may have created a monster, or the other way around because I never used to buy them. Jon has always LOVED scratch-offs but has limited his amount so he would not lose money. I had some a few weeks ago in my wallet (I never have cash). I know he likes scratch-offs so I figured I would get a few to give him something to do. When I brought them home you would have thought I had the coolest thing in my hand. His eyes lit up and he was so happy. He proceeded to scratch them over the next few days and they were all winners!! He was very proud of me for getting him winners. He ended up winning like $12! So of course next weekend when I was going back to Martin's he asked me to cash in his winnings and get more. I did, and this week he won $40 he was so excited! It has been just as fun for me watching him scratch them, as it has been for him scratching them. Watching him today scratching away was really nice to watch, he was concentrating and really studying each card and getting excited even when he wins $1. Seeing Jon smile is one of the best things in life right now.

Hi Everyone!

Although it's still too early to tell whether the Zelboraf is truly "working," Jon seems to get a little stronger each day. He's very focussed on taking things one day at a time and is content to remain at St. Agnes until his doctors feel that he is physically ready to go home. The wonderful nurses and doctors at St. Agnes take such amazing care of him and watch him closely. They seem to legitimately care about Jon and our family and want to see him healthy just as much as we do--well, almost :)

Jon and Anne (and the rest of our family too) appreciate so, so much all of your prayers, happy thoughts, well wishes, cards, scratch-offs (one of Jon's new favorites), and visits. In spite of how challenging this ordeal has been, Jon and Anne have both maintained the high spirits and happy natures we love them so much for--and your support has had quite a bit to do with this. We can't thank you enough.

If you're thinking about stopping by for a visit, please make sure you give one of us a call or text first. Jon is frequently out of his room for testing or PT--sometimes for long lengths of time--and we'd hate for you to sit around waiting for him to return or to wake up from the nap he needs afterwards.

Thanks again for all of the support you've shown our family. Jon, Anne, and the rest of us are lucky to have people like you in our lives.

Jon's Surprise

Jon's nurse practitioner was able to pull some strings and brought a doppler machine to Jon's room so he would be able to hear his baby's heartbeat. However the baby didn't cooperate and we were unable to hear it, so the wonderful nurses decided to bring a portable sonogram machine up to his room and Jon and I were able to see the baby for the first time together! We received our first pictures of Baby Bruce. We also got to see it move for the first time, it was really exciting and made Jon's day! He told all of his doctors and the nurses about what happened. I think almost every nurse came to Jon's room to see his new picture. He was like a celebrity that all the nurses were talking about. It really lifted his spirits and he has had good day ever since :)

Yesterday he worked with the physical therapist and they showed him how to safely go up and down steps once he comes home. He started with 2 stairs and said "okay now whats next?" they were pretty easy for him. Then he went to a full flight of stairs, he was able to do the whole thing slowly! He was out of breath when he got to the top but he did it! 

For now we are just hanging out in the hospital getting stronger. 

Thanks you for all of your support!

Anne

Last week's update

Dear family and friends,

Jon was admitted to St. Agnes Hospital on friday the 26th for hydration and nutrition. Because of his continued stomach issues, he had been unable to get enough in to sustain him. After a few days of IV's Jon is feeling stronger and getting some color back in his cheeks. In case you missed it, the medicine that you all have been praying for arrived Saturday and he has been taking it twice a day without any noticeable side effects. We are not seeing any positive response at this point either, but it is still early. We have had a couple of bumps in the road this week. Jon asks that you please pray for his emotional strength as well. I can only imagine how exhausting all of this is for him but he continues to smile at his nurses and make jokes. He will be in the hospital for a few more days at least. They are talking about maybe Tuesday, Sept. 6th.

Please keep our family in your prayers, Jon is fighting the good fight. He has continued to be encouraged by your cards, texts and letters. Anne has been there with him every step of the way except for last tuesday morning when she went to hear the baby's heartbeat. She was able to record it on her cell phone for Jon to hear when she got back to the hospital. Please remember this precious baby she is carrying.

Dr. Setya called me yesterday to let me know that Zach's mole definitely needed to come off but he got clear margins so no further surgery is needed. We'll just need to keep an eye on him.

We are so grateful to have all of you in our lives.

Prayer requests:
The Braff drug starts to shrink Jon's tumors
pain management
Anne's health and the baby
a good transition from hospital to home
encouragement and peace

Lots of love,
Susan,Sue,Susie, Mom, Grandmom :)