Thursday, May 23, 2013

Recovery

Justin was moved out of ICU today. He had a fever so they took some blood but the preliminary results came back looking good so we aren't too worried at this point. Justin had a blood transfusion so u was worried when he got the fever. His fever is under control and he hasn't taken IV pain meds for 6-7 hours. He is amazing. He has been up a lot today. He was just setting next to the window looking outside at the view. He took a shower today and took off his own bandage while he was crying. He is so brave. 

Dr Lemole showed us the scan results and there is a lesion of the tumor is Justin's sinus and possibly more tumor in skull base bone. Dr Lemole said is wasn't positive if there was tumor in the skull base and he had discussed the images with the tumor board and no one knew what it was so it could be tumor and it could be a side effect of the tumor he took out so we will have some scans in a few months to see if there is a change with the skull base. Dr Lemole says the tumors are treatable with radiation. I worry about radiation because NF tumors have a different genetic make-up and are precursors for cancer. So if they use radiation the tumors could come back malignant. A few doctors say we have spoken with say it's okay to use radiation on meningiomas but not on a schwannomas and other doctors have said dont do radiation on either. Schwannomas are the tumors on Justin's accoustic nerves and the meningioma is the tumor dr Lemole removed most of Tuesday. Just another battle we will face down the road. 

Justin is doing very well and we are hoping to be headed home this weekend. I can't get my phone to upload photos so hopefully I will have a pic tomorrow. Thanks for all the support. We feel very blessed to have such a great support system. 

Tuesday, May 21, 2013

Post-Op Relief

Today seriously flew by for me. I know it was a tender mercy that hours seemed like minutes for me. The surgery went accordingly and Dr. Lemole said he thought he got everything out and if he didn't get out everything it was dead because he "burned the hell out of it". Dr. Lemole worked on him for 6 hours but Justin was in surgery for close to 9 hours. 

We received phone calls almost hourly with updates on Justin's status and Ryan Workman who is a member of our Ward who is also an anesthesiologist here was giving us updates (and food) throughout the day. 

Justin lost a smelling nerve. We have two smelling nerves so he still has one left so we can work with just one. Justin's blood pressure dropped a little during surgery and he had an infusion but his body didn't react negatively in any way to the transfusion. 

Ryan was able to get us into recovery with Justin where he was coming out of the anesthesia and feeling pain. This was very hard for me and I was surprised that I had to sit down and almost passed out. Seeing Justin go through pain crushed me. He had to feel some pain in order to come out of the anesthesia and then they started monitoring his pain medication slowly. They don't want him to overdose, but it was very hard to watch. I wanted to be there with him to comfort him so I wouldn't of had it any other way. Jason would sooth him by putting a hand on his shoulder and running his hand along his neck. This comforted Justin and he was able to relax and fall asleep. 

Once Justin's pain was under control we headed to get a CT scan and then to Pediatric ICU. He started crying when we got to PICU but the nurses asked if anything hurt and he said no. He was crying because he was still coming out of anesthesia. I was relieved he wasn't in pain and I have made sure to know the protocol for getting a nurse in here to give him pain meds when they are needed. 

I am very proud of Justin. He is a strong boy. Even in recovery he was watching every move the doctors were making and monitoring everything they were doing to him and even asking them questions about what they were doing. I was very impressed he was so conscious of those things while he was in so much pain.

A dear friend reminded me that because of Justin's age he probably wont remember today or tomorrow and all this pain. This is comforting. Dr. Lemole saved Justin's life today and we are greatly appreciative of everything he did for Justin.


This is Justin about an hour and a half ago. The swelling has started and will get worse tomorrow and Thursday with bruising but as he is able to get up walk around the swelling and bruising will go away. These next 24 hours will be tough but every minute that goes by is a minute closer to complete recovery. 

Monday, May 20, 2013

A Pre-Visit to Children's Diamond Center

Today we had the opportunity to meet with the Child Life Specialist (Lauren) that will be with us for Justin's surgery. She took us on a tour of the Children's Diamond Center and while we were in the Pediatric Intensive Care Unit (PICU) a small horse walked in.


Justin was a little apprehensive at first (as was everyone else...a horse in ICU?!?!?!) but he warmed up and was able to pet the horse and walk it up and down the hall. They call this pet therapy. They also bring in small dogs.

Justin asked the head nurse in the PICU how long he would be in the hospital and she wasn't sure. He wasn't too excited about having to sleep there but I reassured him Jason or I would be there with him the entire time he was in the hospital. He said he was scared and Lauren said it's okay to be scared, but remember your mom, dad, grandmas and all the nurses and doctors are here to help you get well. He kind-of took in her response with a deep breathe and smiled (I think he got embarrassed).

Justin had to have another CT and MRI about a week ago at the hospital where they are performing the surgery. We got the results Saturday and it listed an additional tumor on his right temporal lobe. It is a small tumor which is probably why it wasn't caught by the previous scans. As frightening as this is I am beginning to understand that this is what life will be like, each time Justin has a scan there may be new tumor growth. We will just deal with it when it becomes an issue. As much as it makes my hurt ache for Justin, these are facts we have to live with.

Our Home Teacher came by tonight and assisted Jason in giving Justin a beautiful blessing. He shared a scripture, 2 Nephi 2:24 which reads: "But behold, all things have been done in the wisdom of him who knowest all things."

So although we don't understand the entire plan the Lord has planned out for Justin and our family we do have faith that there is a reason. We have many choices everyday. It's my choice how I will deal with this and I am determined to choose joy.

We need to be at the hospital tomorrow morning at 6 a.m. Surgery is at 7:30 and is scheduled for 8 hours. We should receive progress updates throughout the day. I felt the easiest way to relay the updates besides this blog was via a Facebook page, so I will be setting that up later tonight and I'll send out invites to everyone. If you don't receive a facebook friend request to join the "Get Well Justin" page, please message the page or my facebook page (Emily Tressler Anderson) and I will get an invite sent to you.

Thank you to everyone for everything from the meals to the stuffed animals, cards, emails and prayers. There have been so many people that have touched our lives these last fews months, we are so grateful to all of you. We are mindful of you and your concern for Justin and we are grateful we have such a strong support system.

Friday, May 3, 2013

Surgery Date Changed

Justin's surgery has been pushed back to May 21. When Dr. Lemole found out Justin's surgery was scheduled a day before he went out of town he had his scheduled change it so he could do the follow-up. I will admit I was alittle apprehensive when the scheduler told me Dr. Lemole wouldn't be doing the follow-up, so I am relieved he will be doing the follow-up but annoyed the surgery is pushed back giving me more time to agonize over the situation. I guess there is a reason for everything.

Logan learned how to ride a bike without training wheels in about 2 seconds. He had been riding a balance bike for the last year and when Justin got his new bike Logan took over his and was a pro within moments.

video

The boys just want to ride bikes all day long which is a nice change from them wanting to play video games and play with electronic devices.

Justin had a soccer game tonight. He was goalie the first quarter. As the team started warming up Justin started to get scared. He calmed down and played a really good game. He is very fast.



Justin kept dancing around so it was hard to get a good pic.

This week was full of excitement starting with Logan throwing up all Sunday night, Monday and again Tuesday. Our washer finally broke on Tuesday making it impossible to clean any towels or bedding which was just a little bit of an issue since all our towels were drentched in throw-up. Wednesday I had an unexpected root canal which had me in a fowl mood most of the week then Thursday Justin's surgery was pushed back. By the end of the day Thursday I was DONE...to say the least. I felt like I have been handling things pretty well, trying to stay busy and upbeat and I felt like if anything else were to go south I may not be able to keep my game face on...if ya know what I mean. I've heard that we choose our trials...if that's true I need to be slapped...a lot. I prayed Thursday night that we would have a calm day today...that nothing major would happen or at least no damage that would result in costs over $400. Today was a good day and not that it was the perfect day but it was calm comparitively speaking.

Although we have had a bit of a stormy week I am very aware of the spirit that has engulfed our home and our lives. We have had countless blessings that have been keeping our spirits up. We greatly appreciate the packages from family that can't be here with us, the dinners from dear sweet friends, the visits from nearby family, Justin's wonderful teacher and classmates, understanding employers, dedicated running buddies, friends that allow me to unwind/vent, prayers, phone calls, cards, emails, thoughts, texts, etc. We are so very blessed.

This afternoon Jason, Justin, Logan and I all snuggled up on Jason & I's bed and took a nap together. It was a sweet tender mercy to have such a peaceful moment with them. When we awoke we were able to take part in hearing Ali announce her mission call to Reno, NV. How awesome is that? She will be the best missionary. What a perfect ending to a great day.