Friday, September 18, 2009

Road to Recovery

Post-Op Day 1

Day 1 post-op was another very long day. Jacob spent most of the day in the PICU. I returned to the hospital around 8:00 am to find a very hungry, grumpy Jacob and a tired TD. Jacob was unable to eat the breakfast that dietary brought him because his jaw, teeth and head were causing him so much pain. The left side of Jacob's face was starting to swell and he was unable to see. The nurse started him on Motrin and Tylenol and was only giving him Morphine and Zofran if he complained. Finally after hours of waiting the nurse brought in packets of seasoning to make broth and red and yellow jello (I called Jacob's dad at 7 am, on my way to the hospital and asked him to bring Jacob soup and jello. He said he would, but didn't show up until 3:30 pm because his wife was sick.). Jacob was so happy to finally put something in his tummy and I sat and fed him several bowls of broth and many cups of jello. Not being able to eat was a huge deal for Jacob. He loves to eat and gets excited about what he is having for lunch and dinner, not to mention the hospital nursing staff was constantly asking us how much has he had to drink, how much has he eaten and measuring his pee. Which brings us to another subject. Jacob was unable to get out of bed the night of surgery and he wasn't catheterized. They provided Jacob with a lovely bed jug. It became quite funny by the end of the day... even Jacob was laughing, and crying because it hurt so bad to laugh.

My Mom and Dad visited, Nana and Papa Ken. Their visit was very nice. Papa Ken fed Jacob mashed potatoes while I tended to Gavin and TD took Brie to eat lunch. Thank you for coming to visit us on Friday!

Jacob was moved to the regular recovery floor, which surprised me b/c his pain wasn't under control and he was still throwing up.

Jacob's dad showed up at 3:30 pm and stayed until 7 pm. During part of this time TD, Brie, Gavin and I went and checked into the Ronald McDonald and went to Target to get the things Jacob asked for to play with while he is in the hospital.

Jacob got a roommate that night and TD spent night with Jacob because Gavin was so grumpy.

Brie, Gavin and I stayed at The Ronald McDonald House. It was nice. I was even able to wash clothes!

Post-Op Day 2

It was a long night for TD. Evidently, Jacob's roommate's mom snored louder than TD, and between her snoring and the nurses checking on Jacob every few hours, TD got very little sleep. Jacob received his last dose of Morphine at 4 am because both of his IVs were "bad" and not working. Jacob's dad was supposed to come relieve TD (or me) at 4 am, but he didn't show up until 6:45 am, so TD just stayed until I got there at 8:30 am. Jacob did not want another IV put in, so he started receiving Oxycodone, Motrin and Tylenol orally.

When I got to hospital, I told Jacob that the doctors had told TD that he looked great and could get out of bed. We explained to him that getting out of bed would help the swelling in his face and head go down and hopefully make him feel better. Jacob got out of bed and used the bathroom. It was a slow process, but after the first few trips, it got easier.

Jacob's dad left at 10:00 am and didn't return because his wife had a fever. This was very upsetting to Jacob, but Saturday afternoon turned out to be a great day for recovery.

TD and I talked Jacob into taking a shower and TD did a great job washing Jacob's hair. It was really scary for both of them, but they got it done and Jacob said the shower felt sooooo good!

Jacob had a lot of wonderful visitors.

Part of our St. Pete family visited Jacob. Julie, Randy, BJ, Tim, Erin and Darbi drove up for the afternoon and evening. They brought candy and cookies, magazines and music, but most importantly, themselves. Julie, Randy and BJ were a huge help with Gavin, giving me a break. The girls played games and Tim and BJ took Brie to dinner so she could have nice outing. (Thanks for bringing TD and I back Outback too!)

Chason, Aunt Becky and Uncle Todd drove from Tallahassee to spend the day with Jacob too. Chason wrapped his arms around Jacob and walked him around the hospital floor. Jacob made room next to him in his bed for Chason to sit with him and Jacob listened to Chason tell stories. It was amazing to see Jacob smiling again and to watch the swelling go down on the left side of Jacob's face. He was even able to crack open his eye a bit and see again. The boys watched tv and talked about duck hunting and football.

It meant so much to Jacob (and to TD, Brie and myself) to have our family visit and be there for us during such a hard time in our lives. Thank you for helping Jacob feel better.

Saturday night was very calming for me. Jacob's roommate was discharged and TD, Brie, Gavin and me were all able to stay with Jacob in the hospital. The nurses still came in every two hours and the bed Gavin and I slept in wasn't very comfortable, but having all of my family together and safe gave me peace. I found myself able to breath again and I felt like the NF2 storm had passed for a bit.

Post-Op Day 3

Jacob's doctors came in early and said Jacob could be released. Being in the hospital gives you a sense of security and a feeling of safety. When you are there it feels like something could go wrong and help isn't far away. With that said, we were all very ready to go home....especially Gavin and TD.

TD left early to get all of our things from the RMH, do our daily chore, pay and check out. Brie and I cleaned up the hospital room and packed all of Jacob's things away. Mr. Dana and Mrs. Gina drove up from St. Pete to help us on our way. They brought our doggies and lunch! Thank you two for all of your help too. We couldnt have had our minds as focused as we were without you. You gave us peace of mind, which was a great gift.

Jacob was doing good for the most part. He was still very sore and swollen and achy from all of the activity the day before. His pain was mostly under control, but he was feeling very nauseous. As we were getting ready to go, Jacob became very sick and threw up a lot. I wondered how our ride home to Tallahassee would go....

Around 3:30 pm on Post Op day 3 we made our way home.

Jacob chose to ride with TD in little Sally Saturn. Jacob said he didn't want to ride 2 hours with the crazy dogs and crazy baby, lol. Jacob slept the whole way home and didn't get sick.

Once we got back to Tally I had a hard time getting Jacob's liquid perchocet filled. Our Walgreen's had to call 4 other Walgreen's and finally got it filled at the one on Tennessee Street West. Needless to say, it took another hour to get it home and to Jacob.

Jacob got settled in, took his pain meds and decided he was "starving!" Per Jacob's request we ate Firehouse Subs for dinner. Jacob pounded a steak and cheese sub and went to bed. We put Gavin's baby monitor in Jacob's room with an intercom in my room and in the living room. TD got up and checked on Jacob every 2 hours and asked him if he was ready for pain meds. Jacob slept all night and didn't take any meds until 8 am Monday...

Post-Op Day 4

Brie went back to school and we rested. Jacob woke up and realized that he shouldve been taking his pain medication as prescribed. He was in a lot of pain. We got him his medicine over the next few hours and Jacob decided that he would take the meds like he was supposed to for at least another day. Jacob was still in pain, but the swelling in his upper part of his face was moving down around his cheek and jaw and even to the right side of his face. Jacob also became very moody.

Post-Op Day 5

Jacob took his last dose of of Oxycondone at 8:00 am. We continued giving Motrin and Tylenol for pain every 4 and 6 hours.

Maks came and visited Jacob for the afternoon and had dinner with us. Maks' family put together an awesome basket of toys, candy and cookies for Jacob. Maks and Jacob took apart and put back together all of Jacob's Flick Trix bicycles. Thank you, Bob and Martha, for lending us your son!

Post-Op Day 6

TD returned to work - Thank you, Becky, for being so supportive and understanding. We also want to thank Becky and Jim for helping make our lives a little easier. We really appreciate your effort, support and prayers. It means so much to our family to have great people surrounding us!

Gavin learned to wait today, he didn't wait very patiently, but he did have to wait. I tried to explained to him that his big brother was recovering from a really big surgery and needed Mommy more than him right now, but I don't think he understood. We made it through the day though, with only a few tears.

I was a little concerned that Jacob's emotions were so up and down - resembling a roller coaster.

Jacob was thrilled to have Lani and Neal visit him. They brought him the biggest chocolate milkshake I have ever seen. Jacob drank the whole thing.

Post-Op Day 7

TD was still getting up every few hours to check on Jacob and listening to the monitor all night. Jacob was still taking Motrin and Tylenol for his pain. We were still washing his hair for him every night, and keeping his head elevated. The swelling was completely gone with only a little bruising under his left eye. It was hard to tell he even had surgery.

Things were getting back to normal.

Jacob was still cranky, and now he was getting bored. I was wondering when this moody post- surgery child was going to morph back into my Jacob (or when I could send him back to school!).

Thursday evening, Mrs. Melanie from our church brought us dinner and brought Jacob an itunes gift card so Jacob could get some new music for his ipod. We haven't been to church since Gavin was born so Jacob and I were really happy to see her and to visit.

We had made it through the week and hopefully through the hardest part.

I am so proud of Jacob for being so strong. I am, as always, amazed and in awe with Jacob. I am so thankful for all the people who love Jacob and our family so dearly. I am thankful for the prayers and God's love that have covered us in this time of need. It is hard to find the words...

Jacob will return to school in a few weeks, go back to Shands to see the Neuro Ophthalmologist on October 2, and have his post-op appointment with Dr. Pincus on October 21.

I will do my best to find the time to keep you posted!!

Friday, September 11, 2009

Craniotomy for Optic Nerve Decompression

Craniotomy for Optic Nerve Decompression

The night before surgery TD and Brie joined us in Gainesville around 6:30 pm. We all went to eat at Cracker Barrel and had dessert at Ben and Jerry's Ice Cream per Jacob's request. We got back to the hotel and each started to prepare for the next day, the big day. Jacob's surgery was almost here.

Jacob was really nervous most of the evening and night. (We were all nervous) I washed his hair with the special shampoo we were given and we watched baseball as late as we could. Jacob cried because he was scared and I tried to comfort him with hugs, kisses and reassurance that everything would be fine. It seemed like Jacob got up 15 times during the night to use the restroom. He complained about stomach cramps and jitters in his tummy. Finally around 2:00 am Jacob fell asleep. Gavin slept most of the night in his pack n play, only waking up once - I felt like I didn't sleep at all.

TD, Jacob, Brie, Gavin and I got to the hospital at 9:00 am.

The rest of Jacob's family started getting to the hospital around 10:15 am.

Thank you to Granma Gina, Pops Dana, Heather, Josh and Presley for being there for us on surgery day.

Jacob's dad, his wife and GG and Papa Billy were also at the hospital for the day.

The "surgery phone line" informed us that we needed to be at the hospital at 9:00 am and that Jacob's surgery would be around an hour and a half later. I knew after meeting with Dr. Pincus the day before that Jacob was Dr. Pincus' 2nd case and he didn't expect to start with Jacob until around noon.

They called Jacob at 1:00 pm to go upstairs to be prepped for surgery.

Jacob headed to pre-op. Jacob held my hand as we walked. I just kept thinking how brave Jacob is and how unfair this all seems. I prayed over and over in my head for God to be with Jacob and his surgeons. In pre-op we met several anesthesiologists and one of the nurses who would be in the room with Jacob during surgery. Jacob explained to the doctors that he wanted his IV placed first and did not want to be put to sleep with the anesthesia mask. He also requested that the instruments in the OR be covered up before he entered. He remembered seeing the tools last surgery and they frightened him. The anesthesia doctor who tried to place the IV the 1st time failed miserably. Jacob was mad and ready to go home. After the way he dug around in Jacob's arm...I would of been ready to go home too, but what's the big deal of getting an IV compared to a craniotomy? Another doctor came in and put Jacob's IV in very easily. Thank goodness. Jacob was given Verset and started to fall asleep. I told him how much I love him and walked away before he could see my melt down. Jacob went to the OR at 2:10 pm and I went to the chapel to pray.

We waited.

At 4:30 pm the nurse called and spoke with Jacob's dad and said Jacob was doing very well. She said she would call again with another update around 6:30 pm. We didn't hear from the nurse again, but Dr. Pincus came down about 7:15 pm. He said Jacob did very well. He said the surgery went just as it was supposed to go. Dr. Pincus said the appearance of the optic nerve changed immediately after they did the decompression. The nerve went from "a very unhappy nerve to a happy nerve." Dr. Pincus said that him and Dr. Lewis were both very happy with the surgery. He said Jacob was being stitched up and that we wouldn't know about Jacob's vision until he woke up and went to PICU.

At 8:30 pm I finally was able to see my baby in PICU. He looked beautiful and precious. He was peacefully sleeping. Jacob's nurse was hooking up wires and attaching his monitors. I asked her if he had woken up or said anything since he was brought in from the OR. She said that Jacob's doctors had been there and talked to him - she said they had done a vision field test using their fingers......she said Jacob had passed the test. I looked at her and said, "So Jacob can see? He can see? He passed the vision test?" She said, "Yes!!" I can not describe the feelings of joy that came over me, the relief. Answered Prayers! Just to be able to kiss Jacob's hand and to see him breathing steady was priceless, much less to know he could/can see. That was a moment I will remember forever. TD and Brie came in to see Jacob with the same reaction. Tears of joy. Tears of relief. Tears of happiness.

Heather and Josh came in and saw Jacob briefly before they went back home to St. Pete. Jacob woke up for a few minutes to tell them goodbye and asked Heather how Presley, her 4 month old daughter was doing. Even after waking up from major surgery Jacob was thinking of others before himself.

Jacob's dad came in and saw him briefly.

I was able to bring Gavin in for about an hour before TD and Brie took him back to the hotel. It was so comforting to have all of my family together and to surround each other and Jacob with our combined love.

Surgery night was rough. Jacob was very sick to his stomach and in a lot of pain. Jacob had a hard time opening his eye so he was also scared. He dry heaved in the beginning which made his head hurt and his incision bleed. Later after drinking water he threw that up several times. I'm not sure if it was the Morphine or the anesthesia that made him sick, but the Zofran controlled his nausea later. Jacob slept a lot and when he was awake we listened to football on ESPN and talked about the games from that night. Most of the night and early morning I sat and held Jacob's hand because he was very scared. Around 5 am TD (thank you for being an awesome husband and step father!!!) came and sat with Jacob and I went to the hotel to be with Gavin and Brie and to sleep a bit.

Surgery day was over and Jacob was doing as best as could be expected.

Strong and Brave.

Wednesday, September 9, 2009

Getting ready for Surgery...

Monday afternoon Granma Gina took Grissom and Connor home with her to stay for the week. (our Yorkie and Poodle) I am happy they are staying with someone who loves them and will take good care of them, but I miss my Grissom dearly! Thank you also to Mom and Dad for feeding our cats, Miller and Booger.

Monday evening I was worried we were going to have to reschedule Jacob's surgery.

When Jacob came home from his Dad's on Monday he told me he had come down with a headache and a fever of 100.2 late Sunday night. Jacob said he was feeling fine, but I was still worried. Monday afternoon I took his temperature again and it was 100.9 and he was coughing randomly. I started pushing Gatorade and water and giving him Robitussin expectorant. Monday night Jacob went to bed with only a 99.0 temp. Tuesday morning after craniosacral therapy for Jacob and a chiropractor appointment for me we headed to Dr. Julie Kelch's (our primary doctor) for Gavin's shots and a flu swab for Jacob. Gavin got his shots and Dr. Kelch looked over Jacob. Good news! Jacob was negative for flu, no fever and his chest sounded clear. We were on for our trip to Shands on Wednesday.

Wednesday morning (this morning) Thomas loaded the van for us, Jacob, Gavin and I dropped Brie off at school and got on the road for Gainesville. We got here early around 10:45 and stopped at Starbucks. After coffee, changing and feeding Gavin, and going potty Jacob and I had a nice conversation about how the rest of the day would go and who was going to visit him while we are here at Shands. I told him about all the wonderful calls and emails I have gotten and how many people were praying for him. We talked about the 10,000 angels watching over him and how Jesus and God are by our side.

At 11:45 we went to pre-op anesthesia / pre-surgery and saw the anesthesia doctor and did all of Jacob vitals. Once again - no fever and clear chest. Yea!

At 12:30 Jacob had his appointment with Dr. Pincus, the neurosurgeon. I filled out paper work and the nurse did Jacob's vitals. Again, Jacob sounded good. Gavin got changed and fed and was a happy boy, even though his 2nd bottom tooth is poking through. Around 1:00 Leigh Ann, the nurse practitioner came in and saw Jacob. She explained to Jacob how before and after surgery would go and gave us some shampoo for Jacob to wash his hair with tonight and tomorrow morning. Dr. Pincus came in next and went over the surgery with Jacob. We gave Jacob the choice to sit in or out while Dr. Pincus and I talked about Jacob's surgery and Jacob chose to leave the room. Dr. Pincus spent about 30 minutes answering my questions.

Explanation of surgery: ****************

Dr. Pincus will make an incision from the left ear to middle of the forehead, along the hair line. He will remove the skull (forehead area) above the left eye and the brain covering, then slightly retract the brain (very little) and work behind the left eye and optic nerve. Dr. Lewis will then come in and drill off (with a diamond drill bit - crazy right?) the part of the "bony tube" compressing the optic nerve. They will then look at the optic nerve tumor (meningioma) and see if it is in a place to biopsy. Dr. Pincus does not think they will be able to do this, but is keeping the possibility open. After all of this they will put everything back together and send Jacob to PICU for recovery. *****************

Next Jacob did blood work for blood typing - in case he needs a blood transfusion and then we went back to pre-op to see admissions.

At 3:30 we were done and eating at Subway.

I am thankful that we made it through this day. Step one is over.

We are ready for tomorrow, safely tucked into our hotel room, Jacob is healthy, Gavin is healthy and Thomas and Brie are on their way.

Oh, and the allergic reaction to the unknown bug bite all over my left arm and and under my eye is still out of control, but i think I will live :). It really stinks wearing long sleeves in September in Florida!

Friday, September 4, 2009

Jacob is having surgery Sept 10, 2009

Deep breath...

I'm not sure if I am ready to write this post. I know I wasn't ready for the weight of this decision.

Surgery: To do or not to do? The goal: To preserve the little bit of sight Jacob still has and do no harm. To prepare Jacob for radiation therapy.

I won't talk about the dangers. I won't discuss my fears. I am not thinking about them right now. I am forcing myself to think positively. I am trying very hard to see a positive outcome. I am trying very hard to keep faith in God and in Jacob's doctors, that the choice to do surgery will be the best for Jacob and his future.

Jacob, Jacob's dad, Thomas, Jacob's grandparents and my Rebecca all agree with me that this is the best next step to take.

My heart is still breaking for my beautiful, precious Jacob.

I spoke with Jacob's neurosurgeon, Dr. David Pincus this past Wednesday. The CT scan did show that Jacob's optic nerve does have a tumor on it. They are almost sure it is a meningioma. They even believe it has been there for a very long time, but is now big enough to cause problems. They also believe that the optic nerve has become "compressed" and needs more room. Jacob's doctors recommended that Jacob have Optic nerve decompression surgery.

According to Dr. Pincus there is a "bony tube" that surrounds the optic nerve and if they remove it the optic nerve will have more room to relax. He also believes it will give radiation more of a chance of working to Jacob's benefit. The surgery is performed by placing an incision along the hairline from the ear to the eye brow, going in through the skull and brain cover. They push the brain back "a bit" and work between the two frontal lobes. They then remove part of or all of the "bony tube" (I can't remember) and then put everything back together again.

I have a lot more questions and will get a lot more information when I meet with Dr. Pincus next week for pre-op. They did say that Jacob will remain in the hospital for 4 to 5 days and will be out of school for several weeks. We will be leaving for Gainesville Wednesday and hopefully return by Monday or Tuesday.

Once again I am asking for your prayers. Please pray for Jacob. Please pray to give Jacob's doctors steady hands and knowledge to take care of Jacob to the best of their abilities. Please pray for me to have strength, grace, patience, and most of all faith. Please pray for all of us. Jacob is very strong, but he will need each of us to help him through this difficult time.

Thank you and much love,