Thursday, December 10, 2009

Jacob's 1st trip to NIH Day 4

Jacob's 1st trip to National Institute of Health

Day 4

Wednesday, December 2, 2009

Morning came very quickly. I woke up not feeling very rested at all. Our room was very nice, very quiet, and the beds, for the most part, comfortable. There’s just no place like home.

Jacob’s 1st appointment of the day was at the Eye Clinic, with Ekaterini Tsilou, MD. We checked in on the 11th floor and then were sent down to the 10th floor for an eye exam and vision screening. It was the same song and dance Jacob has done 100 times before, but the results this time left me pleasantly surprised and extremely happy. During the 1st round of tests the tech turned on a lighted box, which looked a lot like an x-ray viewer, except it had rows of letters and numbers on it. It was bright white with bold black letters. He asked Jacob to read the smallest line possible. Jacob looked at it for a minute and started to read. I wish I could have seen my own reaction. Not only was I shocked that Jacob could read any of it at all, but blown away at how small the line was that he did read. Jacob and I exchanged looks. I asked Jacob, “Seriously? Are you guessing?” He was like “What?” He hadn’t even realized his peripheral vision had improved so much. A month after surgery his vision had only improved from 20/400 to 20/200. Now, WOW! What a difference. I had prayed for Jacob to not loose any more vision and for the surgery to at least help him keep what he had left. My mom on the other hand has told me many times she is praying for Jacob’s sight to return to him completely in his left eye. God was meeting us in the middle. Jacob’s vision is now at 20/63. Answered prayers! Thank you Lord! Thank you, Dr. Pincus and Dr. Lewis. Jacob still has to take a minute to look at whatever he is trying to see and the black on white contrast makes a huge difference, but the improvement is clearly there. The meningioma is still on the optic nerve, but obviously Jacob’s optic nerve is truly more “happy,” as Dr. Pincus worded it, and it is sending much better signals. This news made my day!

After the eye exam, the tech took Jacob to do an automatic fielding test and sent us back upstairs. We met with Dr. Tsilou and went over Jacob’s eye medical history. It is the longest and most detailed of all his medical information. Jacob then had his eye numbed, pressure checked, pupil dilated and photos of his optic nerve taken. Jacob’s pressure was good, but his optic nerve is still showing a little paleness. The rest of his eye looks healthy and the drusen was not seen. The doctor also measured how far Jacob’s left eye ball was sticking out from its socket. She said that meningiomas on the optic nerve have been known to cause the eye to protrude. She said they would watch it and Jacob’s measured pretty normal. We were done with the Eye Clinic and it was time to go to the Ear, Nose and Throat Clinic and see Jeff Kim, MD.

Once again we didn’t wait long. Jacob was put right into a room. Dr. Kim came in and asked us the same questions we had been answering the past few days. He looked at Jacob, his skin, his tongue, Jacob’s nose and his ears and with Jacob’s permission took pictures of Jacob’s visible fibromas and cafĂ© au lait spots. He informed us that the once thought cyst on Jacob’s tongue is not a cyst, but a fibroma. Dr. Kim went over Jacob’s scan and confirmed that Jacob’s vestibular schwannomas (VS) or as I usually call them, acoustic neuromas (ANs, or simply the ear nerve tumors) are growing. The right side is around 9 mm and the left around 7 mm. Dr. Kim believes that there is another tumor, along with the ones already seen, on the right side inside the inner ear. This was not good news. He went on to explain to me that the balance nerve, the facial nerve and the hearing nerve are all in the same area. They believe the VS start on the balance nerve and then take over the other nerves when they start growing. He discussed why they do surgery and some of the different results. Most patients lose hearing after a VS removal surgery is done on that side. If the hearing nerve can be saved during a VS removal then a cochlear implant (CI) can be placed. A CI is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. The cochlear implant is often referred to as a bionic ear. We also talked about an Auditory Brainstem Implant (ABI). The ABI, like the CI, replaces part of the hearing mechanism that is not working properly. Whereas the CI is implanted in the cochlea and replaces the function of defective cells, the ABI is implanted in the brainstem, and replaces the function of a defective auditory nerve. It is used most often in patients who become deaf due to NF2, because NF2 causes tumors on the cranial and spinal nerves. Removing those tumors often requires severing the auditory nerve, which destroys the hearing in the affected ear. Bilateral surgeries can destroy the hearing in both ears. Traditional CIs are ineffective in these cases, because they rely on the auditory nerve to transmit signals from the cochlea to the brain. But the ABI bypasses the auditory nerve to inject acoustic information directly into the brain.
Jacob’s case is complicated because of the schwannoma growing at the bottom of Jacob’s brainstem/top of his spinal cord and because of his visual loss. They are not recommending any surgery at this time, but will be watching them closely. The tumor on the right side in Jacob’s inner ear can not be removed or debulked with out taking his hearing. More bad news.

Later, Jacob had vestibular balance testing – which was really cool. We also had a very nice dinner at the Double Tree Hotel this night. I will write about both of these later. I have to run for now, but I didn’t want to wait any longer to post the good news about Jacob’s vision.

Day 4….to be continued!

Wednesday, December 9, 2009

1st trip to National Institute of Health DAY 3

Jacob's 1st trip to National Institute of Health

Day 3

Tuesday, December 1, 2009

I was so tired from not sleeping the night before and I had a very hard time waking up.

Today Jacob was to have a MRI of the brain, spine, and brachial plexus under anesthesia with and without contrast.

We were supposed to be at the Children’s Day Hospital at 7:00 am to get ready for Jacob’s 3 hour MRI under anesthesia, but we didn’t get there until 7:20 am. I’m not sure why I thought I would be able to get us all up and ready in only 20 minutes. Jacob couldn’t eat or drink so it only took 40 minutes, but regardless we were still late. The nurses didn’t seem phased at all that we were running behind and welcomed us right into our room. Jacob was a nervous wreck about having an IV placed and wondered how many times it would take them to get it right. (Sometimes at Shands it can take 3 or 4 times for them to get it in.) Jacob’s nurse got the IV in on the very 1st stick, on the very 1st try, quickly with very little pain!! They didn’t even use any numbing agents. Jacob and I were so happy that was over and went so well. Jacob changed into some very fabulous paper hospital pants and we walked from the Day Hospital to MRI Imaging. We only sat for a few minutes waiting for them to take him back to the MRI room he would be in for the next few hours. I met with the Anesthesiologists doctor and completed paperwork and a long questionnaire. Since Jacob’s craniotomy, he now has a small amount of titanium hardware in his skull and they have to ask you a thousand more questions than usual. They put Jacob on the table awake and G and I stayed with him until he fell asleep. Jacob was only given an IV anesthesia called Propofol anesthesia and no breathing anesthesia. It only took a minute for Jacob to fall asleep after I kissed him and wished him sweet dreams. It is always hard to watch them put Jacob under anesthesia and walk away. I am left at that point to be alone, without Jacob and think about his NF2 and why he is having a MRI. It breaks my heart to see him lying helpless on the table bed with the huge machine surrounding him and monitors and such attached to him. It’s hard to explain, but is not a sight I wish for any mother or parent to have to see.

The MRI started at 8:10 am. The doctor taking care of Jacob told me to come back at 11:00 am and if anything changed he would call me. Gavin and I went back to the Inn. I ate breakfast. Then I took G outside to play on the outside playground. He loved the baby swing, but because everything else was so wet from the rain the day before he wasn’t able to get down and crawl around. We sat by the huge Holly tree and watched all the birds flying in and out of it. They were singing and making a lot of noise. G and I found it very entertaining. We went back to our room so I could fold laundry from washing the night before and put G down for a nap. I ended up falling asleep too, but for only 25 minutes. I was very upset when I got back to MRI at 11:00 and the doctor told me they would be taking 45 more minutes of scans. G and I could have been sleeping all that time!! The doctor apologized for not calling me. He also informed me Jacob would not be coming back that evening. Jacob was originally scheduled for a second brain MRI that evening without sedation and without contrast. They usually do this for comparison. The head Radiologists decided during Jacob’s scan that they would go ahead and do all the scans at the same time and didn’t need ones later. I was happy it could be done this way. I was thinking about our afternoon and what we would be able to go and do..Maybe the Washington, D.C Smithsonian Zoo!! Gavin and I waited and when Jacob was done having the MRI we followed him up to Anesthesia recovery. He was sleeping so peacefully. I kissed him again and told him I would be waiting for him to wake up. G and I sat in the waiting room for a very long time it seemed and we were finally called back. Jacob was still sleeping. He continued to sleep for over an hour, even with G and me messing with him. He finally woke up and decided he was very hungry and super grumpy. After he ate some crackers and juice he was sent back down to the Pediatric Day Hospital where we had started that morning. A very nice nurse had reordered Jacob’s food request from that morning: Cheese burger, French fries, and a milkshake. It was very late in the afternoon at this point and the original order from 11:00 am had gotten cold. The nurse ordered 2 of everything (3 cheese burgers) so Jacob and I sat and ate together. Jacob said very little and was more irratated than usual after anesthesia. I knew at that point there would be no trip to the Zoo that afternoon and that Jacob had been given a little too much medicine. Jacob insisted to his nurse that he was ready to go, so she made him walk around, use the bathroom and put on his pants alone to prove he was fit to be released. At 3:30 pm we made our way back to the Inn. I had to make Jacob lay down for a bit. He still felt like he was 10 feet tall, but was mouthy and unsteady. We all took a nap.

Tuesday evening turned out to be a nice night. A nearby Cancer center came and made Tacos for the families and once again there was fruit and yummy dessert. We sat and ate with a nice family from Tennessee. Their 3-year-old son’s name is Corbin and Gavin enjoyed watching him. Jacob played video games with David and Corbin’s dad until late and Gavin and I went down stairs to play in the under the stairs soft block room. We also met Viola, the Inn’s beautiful Golden Retriever Tuesday night. We sat and pet her for a long time. She enjoyed licking Gavin’s left over dinner from his face.

I can assure you that I had no trouble falling asleep Tuesday night, Gavin stayed in the bed with me and we didn’t wake up until early morning.

Another day down and one more day closer to getting home to Tallahassee. I was ready for Gavin, Jacob and I to be back with Brie, Thomas and Grissom.

Wednesday we would have an appointment at the Eye Clinic, an appt with the Ear, Nose, and Throat doctor and Balance Vestibular testing. 

Tuesday, December 8, 2009

1st Trip to NIH (Day 1 and 2)

Jacob's 1st trip to National Institute of Health

Day 1 and 2

Sunday, November 29, 2009

Up at 6:20 am....TD, Jacob, Brie, Gavin and I were off to the Tallahassee Airport, arriving at 8:05 am.

Mom and Dad met us at the airport to wish us well and watch us take off.

The Delta representatives were very nice. They helped me check in our baggage and get our boarding passes. I was very worried about getting on the plane with my precious boys and felt sick to my stomach. (Even though I have flown many times before) I was sad about leaving the other half of my family for a week, but I kept reminding myself it was for a great reason - the beginning of a new journey - a new phase in our war against NF2.

Getting through security was a pain. They checked Gavin's baby food and my water bottle, had to look through my backpack and Gavin's diaper bag and they made us take off our shoes. They don't even bother to let you go through with your shoes on anymore, they have you place them through the X-ray machine. The security officers had to look at all of our electronics and Jacob and I had to take off our jackets. I also had to fold up the stroller for x-ray. After all that we made it to the gate by 9:00 am. We boarded 1st at 9:10 am. Jacob and I were given the very 1st seats on at very small jet and we learned very quickly that our carryon bags were not going to fit under or over our seats. I thought that they could just sit at our feet, but I was wrong and almost lost it when confronted by the stewardess. I was very frustrated because Jacob was holding Gavin while I was trying to figure out where to put our things and Gavin was screaming. After the help of a very patient flight attendant and some rearranging of our stuff, our bags found places on the plane and we were on our way to Atlanta.

Gavin and Jacob were awesome. Jacob was nervous, but as soon as the plane took off and we were in the air Jacob was fine and even told me he thought take off was pretty cool. Gavin sat like a big boy in my lap, chewed on his toys, nursed and fell asleep. I couldn't of asked for better behaved boys. After being in the air for only 30 mins we landed in Atlanta....smooth flight and smooth landing. There was even a nice man (and his wife) who helped me by carrying G's stroller up the stairs into the airport. (Yes, that is how small our 1st plane didn't even have a walk through.)

Atlanta airport was packed. We made our way from the D terminal to the A terminal. Jacob and G both liked riding the underground train. Jacob ate burnt pizza and I had bad coffee, only later to find that there was a Starbucks right by our next gate. Our walked from the train to the gate seemed long because we had so much crap, but we made it and found a nice spot to sit in front of the window. I fed Gavin his cereal and pears and let him get down, stretch his little legs and crawl around. Before I could even relax it was time to get back on a plane and be on our way to Ronald Regan Airport in Washington, DC.

The plane to DC was huge and completely full. We had more room to put our stuff, but were still squeezed in like sardines. The take off was much easier to swallow this time and the flight went by pretty fast. Gavin wasn't happy at 1st being restricted again, but gave in and repeated his same routine from the 1st flight. Jacob and I listened to music TD downloaded for us the night before and G slept. My arm felt like it would fall off from holding G by the time we were getting ready to land in DC and G woke up about 30 mins before we landed and graced us with a dirty stinky diaper. I figured if that was the worse thing I had to complain about regarding our flights I was very lucky.

Another smooth flight and landing was behind us. We had arrived at Ronald Regan National Airport in one piece. I hurried to the bathroom to change the dirty doody and then rushed to the baggage claim. I was determined to make the 3:00 pm shuttle. I was starving and pushing through with a horrible headache. The pressure from flying is rough on my head and ears. I was so relieved that we got everything done and were able to make the early shuttle.

The ride on the shuttle to NIH in Bethesda, MD was very nice after G stopped crying about being in his car seat again. Jacob and I tore into the bag of goodies Nana and Papa had given him. We ate all of the cheese, crackers, and summer sausage...also the brownie, and m & ms, only noticing the no food or drink sign after we were done. Looking out the window at the slate rocks on the edge of the rivers and the bare trees, the view looked just like winter should look. The houses were huge and beautiful. It was getting late in the afternoon and was very gloomy outside. I was ready for dinner, a hot shower and bed.

The Children's Inn was awesome! Our room was very nice with lots of space. It had two double beds, a desk, dressers, a Pack N Play for Gavin, TV and Wifi. There was even a sitting chair with an ottoman in front of a huge window. We had plenty of room for Gavin to play and a place to put the stroller and all of our stuff.

That night a church came and served dinner for all the families at the Inn. We ate hot dogs, hamburgers, salad and fruit. Jacob quickly made a friend, David, from Georgia and spent most of the evening playing games in the Teen Room with him. Gavin and I explored the Inn, stopping to play in the common areas built just for little ones. I did my nightly prep, getting Gavin's bag ready for the next day, lunch, diapers, wipes, toys, etc. I looked up all of Jacob's appointments, laid out our clothes, took baths, etc. I had to round Jacob up and make him come in at 11:00 pm - he was having so much fun, but our Monday was going to be busy.

Monday, November 30, 2009

I woke up at 3:45 am to feed Gavin and couldn't go back to sleep. I laid in bed, thinking, wondering how our first day at the huge National Institutes of Health would go. I woke Jacob up at 6:30 am and got Gavin and myself ready. We bundled up and decided we would walk up the hill to the Clinical Center instead of taking the shuttle. It was supposed to rain, but it was only 7:30 am and hard to tell how the weather would be for the day.

Our morning went very well. We didn't wait long for any of our appointments and everyone was very nice. From 7:30 am to 1:30 pm Jacob did the following: Admissions to NIH, Blood work, Outpatient work up, New Patient work up, Pre anesthesia, Audiogram and ABR testing. I also managed to squeeze in a visit to the Voucher office and we went to the Security Center to get our yearly badges. We did a lot of paper work and answering questions. Jacob was nervous about having blood taken and the many viles of blood they took from him, but the nurse was very good and didn't hurt him at all. As for his hearing appointments, they weren't anything he hasn't done before and Jacob even got to take a nap during the ABR testing. We learned during his hearing testing that he has had a slight drop in hearing on the right side, but at this point it isn't anything to be concerned about. (Jacob’s last normal Audiogram was in July of this year) Gavin was awesome during all of this - riding in his stroller, eating cheerios, walking around the chairs and couches, chewing on his toys and sitting in my lap. The NIH Clinical building is very large -the only thing I can compare it to is Florida State campus. It is very clean and decorated with what I consider to be modern art, but still warm and calming. It appears they put in a lot of thought to the decor. The architecture is also very modern and open. Everyone we came in contact with was polite, educated and appeared to know what they were doing. Our day of appointments went by very fast.

After having lunch in the cafeteria we went back to the Inn to regroup. Jacob and I decided we would take the Metro Subway into Washington, D.C as a trial run for later in the week. It was really cold and started to rain, but we went anyway. It didn't turn out to be a very pleasant trip. Even from the start. I was unable to find an elevator to take us down the 200 ft into the subway system. I had to fold up Gavin's very heavy stroller and hold it and Gavin down the very steep escalator. Trying to figure out how to buy tickets from a machine with a fussy baby was a task too. Once on the Metro I held Gavin until he fell asleep. The closer we got to D.C the more full the train became. We decided we would get off in Chinatown. While approaching the Chinatown stop the conductor came on over the intercom announcing a person had been hit by a train at the Chinatown station and to expect delays. When we exited the train people were running to see the accident, there were firefighters, and police officers all around. We held onto each other and made our way up to ground level. The weather was terrible. It was raining and cold. Jacob and I put our hoodies up and I covered Gavin with his blanket and put his skully on. Jacob had also brought an umbrella that I held over Gavin while pushing the stroller. Gavin decided he was miserable and who could blame him. I ended up carrying him most of the rest of the way so he wouldn’t cry. We tried to walk around, but the weather was too bad. Jacob was very excited to see the busy city, but agreed that it wasn’t good for us to be out in the cold rain. We ended up going into the Smithsonian to warm up and get out of the rain. Too bad it was the Museum of Art and didn't have anything super cool that Jacob wanted to see, other than an amazing covered courtyard. We walked back to the train. The admissions machine ate one of our tickets and I had to jump over the gate with the stroller and hand Gavin to Jacob after he went through.....the station was packed because of rush hour. It was a nightmare. People were pushing and we waited through 3 trains. Finally we made it back to the Inn and Jacob had an interesting story to tell about his 1st time on a subway in the big city.

We ordered take-out and it wasn't very good. I was excited that our groceries Gina had ordered for us would arrive soon (between 7 and 9). We got our groceries and repeated our nightly routine.

I was exhausted but very pleased with Jacob, Gavin and myself. We had survived our 1st day at NIH, the nasty weather and the DC Metro subway!

I was ready for some sleep and whatever Tuesday would bring.

(Will post Day 3 - 6 soon)