Hives Are Horrible!!!

Photos of Gavin's Hives. 

I took so many pictures, because I wanted to show our doctor.

If this were a multiple choice question, the answer would be “All of the above.’ Hives are miserable, awful, heart-breaking and cruel. It was a terrible experience, made even worse by the fact that there are no answers. Were they from a drug allergy? Was it a food that caused them? Could it have been something in our environment? Maybe the hives were from an illness or a virus? At this point, we may never know, especially given the doctor’s “solution” to finding the cause… but we’ll get into that later.


It all started several weeks ago on Thursday, January 27th. Gavin woke up with a very snotty nose and some congestion. We dealt with it in the normal manor - bulb syringe, Vick's and steam showers. Gavin’s cold seemed to be lingering on and on over the next few weeks, but he didn't have any other symptoms of illness and the drainage was clear.

Thursday, February 17, Jacob had a 24 hour bug and came home from school sick and throwing up with a low grade fever. The next day, TD seemed to have come down with something similar to what Jacob had the day before. He was suffering from body aches and vomited once. Brie was coughing and didn't feel great either. That Friday night, the 18th, Gavin had a low grade fever. His “little cold” was going on for three weeks at this point, but he was cutting all four of his two-year molars and we thought that it was mostly attributable to the teeth. I assumed the fever was from the cold, molars or maybe the virus Jacob brought home. Gavin started coughing that Saturday, and on Sunday afternoon woke up from his nap complaining that his ears hurt. I took him to CHP's Urgent Care and saw a doctor there. The urgent care doctor informed us that Gavin had an ear infection in both ears, but it was mild. The doctor said even though Gavin was coughing, his lungs sounded clear. He prescribed amoxicillion, 7 ml, twice a day for the next ten days, and Motrin for the pain. Over the next few days, Gavin's cough seemed to clear up some, but he remained very grumpy and wasn't sleeping well. The weekend was here again and we had a quiet Saturday and Sunday. TD and I still felt like Gavin must be having a hard time cutting of his two year molars and that was why he wasn't himself. On Sunday night, February 27th Gavin had a 100.6 fever. Again, I blamed the teething. He had been on amoxicillin for seven days, so there was no way he was still reacting to an illness. It was a terrible night. Gavin got up every hour crying and trying to get comfortable. I gave him some Motrin around 4:30 am so he and I could both get some rest. The next day was going to be a big day for all of us.

Our family got up that Monday morning, February 28th, and headed to Shands for Jacob's port placement surgery. Gavin felt a little warm, but slept most of the way to Gainesville. I was thinking the entire time, "Why does teething have to be so painful?" Gavin ate his breakfast, had some trail mix, drank his juice and we gave him his amoxicillin and Motrin (for teething pain) around 11:00 am. By 1:45 pm that afternoon he had a rash starting on his elbows and knees. TD and I were baffled at what it was from. After talking to Gavin's doctor in Tallahassee, we took Gavin to the urgent care in the same building as the surgical center Jacob was having his surgery in. By the time we got Gavin into a room to see a doctor at the walk in ER (our wait wasn't very long) the rash was looking more like hives and had spread to his legs and feet. It was extremely upsetting. Not only was my little two year old in the ER two hours away from home with an unknown rash, but my precious fourteen year old was in surgery! The nurse and doctor were very nice and said the hives were either from a food allergy, an allergic reaction to something he touched or to the amoxicillin. I thought, "Really? Thanks for clearing that up for us!" The ER doctor also looked at Gavin's ears and said his ear infections were still very bad, that they had obviously gotten worse since the “mild” verdict from the urgent care doc. She also said to stop the amoxicillin immediately. Gavin was prescribed Benadryl, Zithromax and a steroid if needed. I went to bed Monday night exhausted from traveling, worrying and doing my best to take care of my boys. (Thank you Brie for being (mostly) well at this time!! Brie had tested positive for flu the weekend before, had been miserable, but was getting better.)

Gavin was up and down all Monday night and woke up at 5:30 am Tuesday morning shaking, crying in pain with full blown hives on most of his body and a fever of 99.7. He was still congested. TD called into work to make sure Brie got to school and Jacob was well taken care of while I took Gavin to see our family doctor here in Tallahassee. I needed to find out what she thought was going on and what was the best plan of attack with all of this medicine. Even though I had given Gavin Motrin, his fever had still gone up a bit to 100.8 by 7:45 am. I called Dr. Kelch's office as soon as they opened at 8:00 am and had Gavin there by 8:30 am. Gavin was crying, screaming "Ow" over and over and wouldn't walk. He didn't want to be touched or moved. It was scary and heart-breaking all at the same time.

Dr. Kelch said she couldn't be positive what was causing the hives. She said, as of that morning, the breakout didn't look like an amoxicillin reaction, but because he was taking it when he broke out, it was definitely a maybe. She said it could be food, but that food-borne reactions usually get better within the first 24 hours. And Gavin was getting worse. She said she thought it was probably hives brought on from a reaction to an illness, like a virus or the flu. She did have the nurses prick his toe to get a sample of blood to check to see if his white blood count was elevated. Dr. Kelch said his lungs didn't sound great and if his white blood count was up he would need to go for an x ray to rule out pneumonia. She did find that his ears didn't look too bad, a difference in opinion from the other doctor the day before. She said she could see the fluid build-up, but overall she thought they were healing. Gavin's white blood count came back normal so we were sent home to wait it out. So I left our doctors with a schedule for Prednisone, Benadryl, Zithromax and the ok to give Motrin and or Tylenol with them. And a helpless feeling. And a notepad to track the madness. We still had no idea what was causing the horrible hives.

Wednesday morning came and Gavin was still covered in hives. And much more miserable than the previous day. By that afternoon he hadn't walked in almost 48 hours. After a Benadryl and Motrin cocktail, we made him get out of bed and walk around. It was heart-breaking. He looked like he was learning to walk all over again. With every slow step he cried and shook. We held his hands and cheered him on. Jacob and I took him outside and encourage him to move around. Holding Jacob's hand, Gavin crossed the yard and stopped and picked a flower. His little field trip lasted about 30 minutes and Gavin was crying to go back inside to lay down. The hives had spread to his face.

Another night of crying, 4:00 am oatmeal baths, tossing and turning passed. I was exhausted and emotionally sick over what Gavin was going through. He was on day four of hives, pain and congestion, with no signs of getting better. His hives had left horrible bruising and the hives that had moved to his face were swelling up his eyes. That night, before bed, his eyes looked like they could have swelled shut and were matting a bit. The only thing that relieved the itching for a few minutes was covering Gavin from head to toe in calamine lotion. That morning I called Dr. Kelch's office in tears and insisted on them seeing Gavin again. My laptop loaded with multiple photos of Gavin's hives from the previous days, I took Gavin back to the doctor. It was the third trip that week. Dr. Kelch looked very disappointed that Gavin was still so sick. She viewed all the photos I had on my laptop and said that some of the hives in the pictures did look like a penicillin allergic reaction, but she said Gavin's fever didn't make sense. His temperature Thursday morning was 102.5, and that was after his morning dose of Tylenol. (We stopped the Motrin and switched to Tylenol that day in case it was an allergic reaction to the Motrin. At this point, I would’ve tried anything, and I was thinking that he was allergic to EVERYTHING). She looked at Gavin and did a flu swab. She said the results would be back in a few days. She also added Claritin to the list of drugs Gavin was taking. Evidently, up to five antihistamines can be taken at once. I prayed it wasn't going to come to that. Dr. Kelch, still puzzled with what was causing Gavin's hives and still believing they were from an illness, sent Gavin to the lab have blood drawn.

I took Gavin to the Lab Corp on Tim Gamble first and they were slammed packed as usual. After signing in and sitting for a brief time with Gavin crying and about to burst into tears myself, I asked the attendant at the window how long the wait was going to be. She said a long time. She said there were six people in front of us just to have their paper work done, not counting all the people who were waiting that were already checked in. Gavin had been madly itching since the dose of Prednisone I had given him when we left the doctors office and was covered head to toe with glowing red, huge and horrible hives. You would of thought the lab techs would have made an exception and taken Gavin right back. This situation reminded me of one of my daily devotions I had read this year. It is about finding your joy. One way to feel true joy is to give something away each day, not talking about material things. A few examples are giving encouragement, an extra pair of hands, your seat, forgiveness, and giving a sick baby your place at the blood lab!! I will remember what a difference this could have made for us at the time. Unable to hold back my tears any longer, I asked her, crying, if there was another lab I could take him to. She said our HMO had their own Lab Corp at it's urgent care facility. This was good news. CHP Urgent Care was very close by and I had been to their lab once before. I sure wish I had known you could go there for simple blood work. I thought it was a speciality lab. Turns out it isn’t, so we went there. The attendant was very nice, but she made me take Gavin across the hall to have him weighed. With young children, there are rules based on their weight as to how much blood can be taken at once. Dr. Kelch had ordered a parvo (Fifths disease) test, mono, white blood count, cbc, and a blood culture.Getting Gavin's weight was a pain because Gavin was screaming, itching and crying. The doctor who had prescribed Gavin the amoxicillin almost two weeks before let me back into the clinic, watched me weigh Gavin and then held the door for us to leave. He didn't say a word and I wondered if he even recognized us. Even though Gavin wasn't next in line they took Gavin right back. This is how it should have been and I was very grateful. Sitting in the chair was horrible. I tried holding Gavin still, but he is so strong and determined. The tech was able to get one vile of blood drawn and because Gavin moved too much she "blew" his vein and had to tape that arm up. I was so happy to see TD come in. As happy as I could be at that moment. I could see his heart breaking looking at Gavin and me. What totals wrecks we were at that point. The first tech got another tech and TD and I recognized him from the Lab Corp right next to our house that had closed. We knew he was good at his job. I'm sure that is why she went and got him. TD sat in the chair and held Gavin for the second blood draw, from Gavin's hand. They took five tubes of blood. I was very relieved our trip to the blood lab was over and we could go home. TD had brought the Claritin I asked for and I gave it to Gavin. We went home and Gavin took a good nap. The Claritin seemed to help some.

Friday we continued the Benadryl every four hours, Prednisone in the morning and Claritin once in the morning and once at night. Tylenol for pain and fever and Friday was Gavin's last does of Zithromax. This is entirely too much medicine to have to give a little one.

Gavin looked a bit better on Friday. He seemed to be feeling a bit better too. He was still red and itching, but his fever was gone. Gavin's legs and hands looked better and the swelling had gone down some. His face was still broken out, but not as swollen. I talked to Anna at Dr. Kelch's office and she said Gavin's white blood count came back slightly elevated and he was negative for mono. She said the other blood tests would be back the following week. I told her that Gavin was feeling a bit better, moving around and eating some. We talked about the fact that it usually takes five to seven days for penicillin to leave the body after the last dose. Gavin was almost on day five since his last dose and he was getting better. I say getting better lightly. He was moving and his attitude and demeanor were returning. He looked better to us, but anyone who hadn’t seen him probably wouldn’t have said, “He looks great!” At that point, anything would’ve been better than the past days.

Saturday was another good day of healing.

Sunday was a very good day. Our baby was coming back! Gavin had been fever-free since Thursday night and the hives were now red blotches. He played outside and ate well. We cut back on all the medicines and only gave him one dose of Benadryl and Claritin.

Monday I spoke with Anna and gave her the good news. Gavin was getting better and better a little each day! She informed me that Gavin was negative for parvo (Fifths disease), flu, mono and his blood culture had grown normal. With these results, it was appearing like penicillin very well could have been the culprit. “The “solution” to determining whether or not Gavin is allergic to penicillin is simple: The next time we give him amoxicillin for an infection, if he breaks out in hives, penicillin is the allergen.” A laughable remark, but apparently, the only way we will know for sure is to give it to him again. I learned that allergies can take several exposures to present themselves, but once they do come out they always come out. Gavin has had amoxicillin once before in October of last year with no reaction. TD and I talked about what we will do in the future and we decided that we will ask for the alternative to penicillin and until Gavin is older we will assume he is extremely allergic to penicillin. We don't want him to ever go through another reaction like he had just experienced.

What else I learned:

Allergies to egg, milk, soy, wheat, peanuts and tree nuts represent 90% of all food allergies in children.

Penicillin allergy is one of the most common drug allergies.

I also learned there is a difference between peanuts and tree nuts. Nuts in the tree nut family are almonds, Brazil nuts, cashews, chestnuts, filbert/hazelnut, macadamia nuts, pecans, pine nuts, pistachios and walnuts. It makes sense, but I had just not thought about it before. We researched it because Gavin had cashews and almonds for the first time on the day his hives started. Also, persons with tree nut allergies are known to have coconut allergies.

An allergy is an overreaction of the immune system. The body's immune system treats the substance (called an allergen) as an invader and reacts inappropriately, resulting in symptoms that can be anywhere from annoying to possibly harmful to the person. In an attempt to protect the body, the immune system of the allergic person produces antibodies called immunoglobulin E (IgE). Those antibodies then cause mast cells and basophils (allergy cells in the body) to release chemicals, including histamine, into the bloodstream to defend against the allergen "invader." It's the release of these chemicals that causes allergic reactions, affecting a person's eyes, nose, throat, lungs, skin, or gastrointestinal tract as the body attempts to rid itself of the invading allergen. Future exposure to that same allergen (things like nuts or pollen that you can be allergic to) will trigger this allergic response again. This means every time the person eats that particular food or is exposed to that particular allergen, he or she will have an allergic reaction.

I learned that Gavin's great grandfather is allergic to penicillin, but TD and his dad are not. The tendency to develop allergies is often hereditary. However, just because a parent or one of your children might have allergies doesn't mean that all of your kids will definitely get them, too. And someone usually doesn't inherit a particular allergy, just the likelihood of having allergies.

I hope to never see a case of hives again!!!

I want to be like my big bro!!

I hope Jacob will teach Gavin how to play basketball when he gets older because TD and I are all about baseball and football and sister plays soccer and does dance (all of which are just excuses for us being TERRIBLE at basketball!).


How cute is G?



What's in our Neighborhood?

One of Gavin's favorite things to do is to go on walks around the neighborhood (which is also one of his new words!). He loves to push his Build-A-Bear stroller with either Whitey, his camo Small Fry bear, or Charlie, his Portuguese water dog. Gavin also likes to pack his juice cup and a snack in his stroller (along with some miscellaneous items that change each trip like a ball or his bible) and make pit stops along the way. We count tires on cars (thanks to Gramma and Pop!), flowers and trees, birds, etc.


Gavin and I thought it would be fun to take photos of a few things that we love in our neighborhood.


Just sharing........

What's up, Brie?

If you ask Brie this question, she would reply, "Nothing."  Her answer, however, would be very far from the truth.  Brie has a ton of really cool things going on and I wanted to take a few minutes to write about them.

It's really hard for me to believe that my baby for eleven years (prior to this crazy child named Gavin) is about to turn thirteen.  She's changing so much every day and keeping busy with school, art, dance and Facebook.

Brie is still in the Math and Science Magnet Program at Cobb Middle School.  She successfully made a B in her high school credit Spanish I class (Brie is in 7th grade) last semester and was on the honor roll.  I am extremely proud of her for making 295 points out of 300 on her Bibliography and Monologue project in Language Arts.  Brie chose to do Gabrielle "Coco" Chanel.  She designed her presentation board in the shape of a Chanel No. 5 perfume bottle, sported a Chanel handbag, earrings and dressed in a "little black dress" for her monologue.  Brie is so creative.  I hope that she will go on to become a fashion designer or do something she loves in the fashion world. 

Or maybe she'll be an artist.  Her latest pieces are fantastic!  I told you about her apple that was put on display at our local fairgrounds in the fall.  Since then, she's painted a Santa for a Christmas present for her Gramma Gina, a beautiful toucan for her GG as a birthday gift, a funky heart for me for my birthday, and a unique tree for her dad.  I can't wait to see what she'll start on next. We got the 5x7 canvas she requested, so it'll be little whatever it is!  Good things come in small packages...  Brie's tree was put on Brush and Palette's (her art studio) Facebook page this past week.  I guess her teacher, Pam, loved it as much as I did.  Whenever I see her painting I just want to scream, "WOW!"  They are so impressive and she hasn't even been painting a year!

Brie is super smart, but, being born left-handed, I truly believe she is genetically meant to dance, to do art, and to be driven by her emotions.  After dancing from the ages three to nine, Brie wanted to try something different and went on to play soccer for three years.  I worried about letting her quit dance, but I let her because I wanted her to be happy with whatever activity she was doing.  I ended up really loving to watch her play soccer and it was something for our entire family to do together.  I have very fond memories of walking the track around the soccer field extremely pregnant with Gavin and later taking Gavin to see his big sister play when he was only a few days old.  I can remember her first goal and being proud that she was such a great defender.  I loved being able to watch her play soccer and watch Jacob and TD throw the football at the same time.  Even though I loved Brie playing soccer I was super excited when she asked to go back to dance.  We found a new studio, closer to our house, a new environment, and checked out the classes.  Brie wanted to do hip hop and I wanted her to do ballet.  We compromised with jazz.  Her first recital with her new studio, new teacher and new classmates is only a few months away and I am so excited at the thought of sitting in the audience and watching my beautiful ballerina dance.  It has been way too long. 

Speaking of too long...  It had been too long since Brie and I had spent any time together, just the two of us.  Last weekend, Brie and I got pedicures, ate dessert at The Melting Pot and saw a movie.  It was a lot of fun.  Brie and I laughed at the new massage chairs at the nail salon.   Did you know the massage chairs now have butt massagers?  It was hilarious to be in the middle of talking about something and watch Brie being lifted up a foot off the chair.  She was laughing at me too.  She picked a red glitter nail color and I chose a cherry red.  Brie is always unpredictable.  The Melting Pot was delicious as always.  We picked the smores chocolate and Brie's favorite thing was to dip was the bananas.  It was hard to pick a movie that we both wanted to see.  Brie was pushing for a scary thriller and I was hoping for a comedy or a mild thriller.  I do not like scary movies at all and do not think being scared is fun in any way, shape or form.  I am Number Four was a compromise until TD told us how much Jacob wanted to see it.  We ended up going to the new Adam Sandler movie, Just Go with It.  While watching it, I thought how PG-13 perverted it was, but how very hysterical!  During a very adult funny moment I looked over at Brie and she was laughing too.  She got the joke and I realized how big she has gotten.  It seems like yesterday we were watching Toy Story and Bugs Life.  We ate popcorn and drank coke.  It was a wonderful evening for me.  I'm not sure how cool Brie thinks I am anymore, but I love spending time with her no matter what we're doing and I was very thankful for these few precious hours of just her and I.

Below are a few recent photos of Brie and her art work.

Brie,
I love you, baby!
I'm a proud mama!!

                      Brie's Apple Painting is the colorful one at the bottom, November 2010

Santa, December 2010

Valentine's Heart, February 2011

 Tree, March 2011

                                                            Toucan, January 2011

Jacob gets his port!

Monday, February 28, 2011

Shands Children's Surgical Center at the Ayers Medical Center for Jacob's port placement surgery (what a mouthful!)

After being up with a feverish Gavin coping with what I thought was molar teething pain every hour until 4:30 am, getting up at 6:50 am was brutal on Gavin and me.  We had planned to get up an hour earlier but that just didn't happen.  Jacob wasn't scheduled to go to pre-op until 11:00 am, but the nurse said we could bring Jacob early and that he may be able to get started early.  I had really hoped this was possible because Jacob couldn't eat or drink anything, but I knew it was unlikely.  Regardless, TD, Jacob, Brie, Gavin and me left our house at 7:40 am.  Everyone was grumpy.  After glancing at Facebook  and listening to the kid's conversation it wasn't hard to guess that they both had stayed up way too late playing on their iPods and phones and probably watching TV at the same time.  We weren't even all the way to I-10 before all three kids were back asleep.  I wished I was sleeping too, but for some reason I have a hard time sleeping in the car.  Half way to Gainesville beautiful Mr. Sun poked his head through the clouds and woke up Gavin.  I tried to hang a shade, but Gavin insisted on pulling it down.  I knew he would fall back asleep once we changed directions and were on I-75.

Did you know that Customs and Border Patrol has a workforce of over 61,350 employees, including officers and agents, agriculture specialists, aircraft pilots, trade specialists, mission support staff, and canine enforcement officers and agents?  Did you also know that their officers screen passengers and cargo at over 300 ports of entry? I didn't.  TD and I were really surprised to see one Border Patrol SUV sitting on I-10 right before the I-75 S ramp and then even more surprised to see two others on I-75 when we merged off the ramp.  They were a long way from Miami and even further away from the Mexican and Canadian borders.  Coming up with theories of why they were in Lake City, FL became an interesting conversation for the next several miles.

We made it to Gainesville around 9:50 am and easily found the surgical center.  It wasn't as I envisioned it.  I think I had pictured it to look like Miami Children's  Hospital for some reason and it didn't at all. It was a long and skinny building and the Children's Surgical Center didn't take up much of it.  There was also a walk-in urgent care clinic in the building, called Solantic, which came in handy later in the day. I left the family in the van because all the little ones were still sleeping and went inside to check Jacob in for his surgery.  The receptionist was very nice.  I had many papers to fill out and information to confirm and when I was done she gave me a buzzer.  Very similar to a restaurant light up, vibrating buzzer. She informed me that Jacob was the last case because he was the oldest, that he was scheduled still to go to pre-op at 11:00 and his operation was blocked out for 80 mins, which included prep time.  When I got back to the van, Gavin was awake and I got him dressed, woke up the big kids, TD packed the stroller and we were ready to move on to the next step of our day.  Our circus set up camp in the outside lobby.  The surgical center waiting room was very cute, but very tiny.  It had a beautiful fish tank and a big wall-mounted tv playing Disney channel with some post-like, kid-friendly seats in front of it.  Most of the seats were taken so we chose to sit in the waiting room outside the waiting room.  As usual, our iPods came in handy.  The pre-op nurse called Jacob back right at 11:00 am.  She did an intake on him and then an anesthesia doctor came in and asked us a million questions and put in Jacob's IV.  I was so thankful she got the IV in on the first try!  I'm pretty sure Jacob was thankful too.  This will be the last IV Jacob has to get for a very long time.  Jacob changed into his fashionable surgery gown and posted up in his bed to play the PS3 attached to his cubby's wall.  Jacob's dad arrived around noon and came back and played football with Jacob. At that time we were informed that it would be at least another hour before Jacob would go to surgery so everyone took turns visiting Jacob.  Jacob's dad, his Grandma Gayle (GG), Brie, TD and even Gavin went into pre-op and wished Jacob well on getting his port.  Jacob was nervous before he got his IV and I asked for some medicine (Verset) to calm him, but by the time they brought it Jacob wasn't worried that much any more and declined it.  Finally at 1:20 pm the surgical nurse and the anesthesiologist came to take Jacob to the OR.  I reminded the doctor to please hide the instruments before Jacob goes into the room to try and spare him some fear he has suffered in the past (but according to Jacob they did not hide them very well). The nurse said the surgery could take anywhere from 30 minutes to 3 hours.  We decided to take Gavin for a walk outside.  It was a beautiful day.  When I was putting Gavin in the jogger I noticed his left elbow was a bit red and had a bump or two on it.  I thought that maybe he had fallen or bumped it when I was in the back with Jacob.  We went for a walk and about 20 mins later Gavin fell asleep.  We went back inside to relax and let Gavin take a nap.  I went to adjust Gavin in the stroller and I noticed that the bumps looked more like a rash and were on both elbows and on his knees and ankles.  I had no idea what it could be from.  I called our primary doctor in Tallahassee and asked them what they thought we should do and they suggested taking Gavin to the ER.  So we did, at which point I became a nervous wreck.  I had sent one son to the OR and was at the ER with my other son.  What a mess.  My nerves were shot and I felt like I could throw up at any moment.  I was very thankful that Brie was mostly better from her flu and I gave her strict orders to call me if Jacob's buzzer went off.  It didn't.  The nurses at Solantic were very nice and compassionate to our situation.  Gavin was still asleep in the jogger and they took us right back and put us in a room.  The nurse asked us questions and Gavin's intake was very simple since he is only 22 months and hasn't really been sick in his short little life time.  The doctor came in and woke Gavin up to look at him.  She informed us that Gavin was suffering from an allergic reaction to a food or something he came in contact with or from the Amoxicillion Gavin had been on for his ear infections.  I said a little prayer at that moment thanking God that it wasn't mumps or measles.  She looked at his ears and said they were still very infected and she prescribed Zithromax for the ear infection and prednisone for the break out if it got worse. She said we needed to give Gavin Benadryl every six hours until the rash was gone.  I went to the pharmacy while TD checked out at the urgent care clinic and I left the Benadryl with Brie.  It had been two hours since Jacob had gone to the ER so I was needing an update.  When I went back the recovery nurse had me sit and wait for Jacob and went over his release and care instructions.  She said Jacob was still in phase I recovery and doing very well, snoring away.  I went back out to the waiting room to relay the good news to our family and went back to the recovery chair to wait for Jacob.  Jacob's nurse brought out a port just like the one Jacob is now a proud owner of and showed me how it works.  I was very impressed.  Jacob was wheeled in still asleep and we all worked on waking him up. He had to leave his comfortable bed and move into a recovery recliner.  He tried to go right back to sleep but his dad and I kept talking to him and finally he woke up enough to drink some Gatorade and eat some sherbet.  Jacob said he was in a lot of pain so I left Jacob to have his pain meds filled and his GG fed him his orange dessert and his dad got him dressed.  At this point it was 5:00 pm and Jacob was being encouraged to head home.  TD packed the family up and our plethora of stuff in the van and pulled up to the building to pick up Jacob.  Jacob was wheeled out and transplanted into the van and we were on our way back to Tallahassee.  There's no telling how many bags of fluid Jacob was given so he was about to burst by the time we made it to I-10 and we stopped at the rest area when we changed interstates.  I bet it was a pitiful sight to watch me walk Jacob to the family restrooms, but we survived and I didn't drop Jacob.  Jacob was in great spirits on the way home and played his iPod.  Gavin was not in a good mood and fussed the last hour home.   Miserable.  Jacob's dinner request was a triple bacon cheese burger, fries, frosty and a coke.  He pounded it like Joey Chestnut (the #1 ranked professional eater for those of you not in the loop!). Jacob made himself comfortable in the rocker in our living room and we all did our best to relax.  A little over an hour later TD got Jacob his pain medicine and got him comfortable and ready for bed.  They sat and watched some kind of antique seek and rescue show and talked until Jacob feel asleep around midnight.  I was so very thankful February 28th was over and Jacob's surgery had went so well and we were one step closer to getting him on the Avastin.

Jacob had a good night and slept almost the whole way through.  I set my alarm to give him his pain meds at 1:00 am and he didn't want to wake up.  I went in to check on him and offer him pain relief at 2 am, 3 am and finally at 5 am we woke Jacob up and made him take the percocet so he wouldn't wake up later in terrible pain.  He took it and went back to sleep.

A new day had started with a whole new set of challenges. 


                                       This is a photo of a port and catheter like Jacob received.

Meeting the Pediatric Surgeon

Tuesday, February 22, 2011

I'm sorry that it has taken me a few days to get this posted.  I'm trying to keep up with all of the kids' activities and working on my consignments for the One Week Boutique coming up.  Who knew getting ready to sell baby items would be so much work!?!

Tuesday was a typical, interesting day at Shands.  We were out of the house and on the road by 6:40 am.  Both boys slept the entire way there.  It was an uneventful drive, which is always a good thing.  I did see several FHP.  One was driving with a headlight out and another passed me cruising at 82 mph in my trusty dusty van (Sally is running great, just didn't get the carseat and stroller moved the night before).  They need to practice what they preach!  Not that I don't appreciate FHP and their difficult and dangerous jobs, I'm just saying.  So I was thankful for not getting a speeding ticket and happy to get to Gainesville safely.  Jacob was much harder to wake up than Gavin when we arrived at the Medical Plaza at 8:45.  After changing Gavin out of his wet diaper and pajamas I realized I left his shoes at home.  I couldn't believe I had forgotten something that important, but I decided it wasn't that big of a deal and we would just go with it.  After all, I did have his socks he slept in the night before and his fresh socks to match his outfit for the day.  Double layering was going to do just fine.
I was very proud walking into the clinic that we had arrived so early.  It was barely 9:00 am and our appointment wasn't scheduled until 10:30.  When I spoke with the scheduling nurse the week before she had informed me that Dr. David Kays' clinic was completely full, but they were going to work Jacob in because they know Jacob needs his port.  She said even though she put Jacob down for the 10:30 appointment, I could bring him earlier and they would see him at that time.  I thought this was a great idea because I was able to schedule Jacob's eye appointment with Dr. Hazem Samy at 11:30, but life obviously had different plans.  The receptionist checked us in, Jacob was weighed and went through the same ol' song and dance and Gavin and I got settled in the waiting room.  The pediatric floor is very nice with movies playing, things to play with and crayons and coloring pages.  They even have volunteers in the waiting area to interact with the children.  Jacob thought he was going to get to watch Finding Nemo, but a few minutes later the nurse informed us that Dr. Kays was at the hospital performing an emergency surgery and wouldn't be in until after lunch.  I thought, "Ok, things happen and I understand it was out of anyone's control." I put my happy face on and tried to make the best of it.  Jacob wasn't upset and we went on to the eye clinic to see if Jacob could be seen early there so we would be free to return to the surgical clinic that afternoon.  Upon checking in at the eye clinic I was informed that Jacob's appointment was made for the 25th of February, not the 22nd.  Deep breath. At that moment I was so happy that I had listened to not one, but three sermon podcasts from our pastor at KUMC on my way to Gainesville that morning.  I was feeling very Christian-like at the time and I just smiled and said ok.  There must of been some miscommunication during my phone call with the scheduling eye clinic nurse the week before. Dr. Samy wasn't even in clinic for us to be worked in, but I did ask if Jacob could still have some of his testing done.  She checked with Amy, but she was too busy at the time with other doctor's patients.  Jacob, Gavin and I left the Medical Plaza.  After cruising the Archer strip we decided to go to Target.  Gavin got a new pair of shoes and bubbles.  We blew bubbles in the parking lot under a tree and threw acorns.  Jacob stirred up some ants so we relocated to the van for lunch.  I had packed our lunches.  The eye clinic called and said they could do Jacob's Goldman Fielding vision screening at 11:30, but we declined.  It was time to eat and Jacob didn't want to go back right then.  I wasn't terribly concerned because of the extensive testing NIH had just done on Jacob's eyes in January.  Because Shands is so close to our home and NIH is so far away I definitely want them to keep up with Jacob's eyes and vision, but we will just do it on another trip.  I also tried to make Jacob's EEG for this trip, but they weren't able to get him in at all.  His EEG is scheduled for April 6.  There will be a lot of trips to the Swamp coming up in Jacob's near future.  We were back at the pediatric surgical clinic by noon and we waited.  Jacob was thrilled to watch 101 Dalmations, which I didn't know was one of his favorite Disney films.  It was the one that wasn't animated.  Learned something new about my 14 year old!  Finally we went to a room and met with Dr. Kays' ARNP and she was really nice.  I wish I could remember her name.  I liked her very much.  About 30 minutes later, Dr. Kays came in and met with us.  He looked Jacob over and asked a few questions.  He explained how the port would be placed and he asked Jacob if he had a preference to which side he wanted it in.  Jacob said he wanted to be able to go hunting and fire his gun without fear of damaging the port.  Dr. Kays will try and place it in the right side first, but can't guarantee it.  He also asked us about Jacob's MRI and CT scans.  The metal in the port will be titanium so it will not interfere with the MRI.  Jacob will be receiving the smaller port because when he has his CTs he does not receive contrast.  I guess CT contrast is delivered at a very high rate and only a special port can handle that, but it is more visible and sticks out.  We decided on the smaller of the two that will work well for the infusions of chemo, blood draws and MRI contrast. Dr. Kays was pleasent.  He interacted well with Jacob.  I was hoping Dr. Kays would be able to do the surgery this week, but they are slammed with pediatric surgeries everyday.  Another one of those sad moments for me thinking about how many kids need surgeries.  Jacob's surgery will be at Shands Children's Surgical Center in Gainesville, FL on Monday February 28, 2011.  I don't know the time, but they will call us the night before and let us know.  Because Jacob is older he will be a later case because he is more capable of waiting to eat than younger children.  (Obviously they don't know Jacob!) The surgery is considered minor and he will go home that afternoon.  Dr. Smith said he will be sore for a few days.  I am going to have to reschedule his physical with Dr. Kelch for Camp Daniel Boone and contact his school about postponing FCAT Writing next week to later in the week.  According to Dr. Smith, Jacob will start infusions roughly two weeks from Monday.  She likes for the port to heal for about two weeks.
Our drive home was peaceful.  Gavin slept the entire way and Jacob sat quietly and played his iPod.  I missed our normal "on the way home" two hour conversation, but I just thought it best to let him do his thing.  We were home in Tally by 5:00 pm.  Jacob's treat for the night was ice cream at Lofty Pursuits.  I wish he had gotten a sundae, but he kept it simple with ice cream and sprinkles which surprised me because Jacob is always excited about what he is eating.  I thought he would've ordered something really cool.  Have you seen their crazy menu?  And tonight I thought it was adorable that he called his GG and put in a request for her fried chicken, butter beans, mac n cheese and corn bread for when he visits her on Friday. Too cute. 

Please pray for Jacob and keep him in your thoughts.  Although this surgery will be peanuts compared to him having a craniotomy, Jacob is still scared and anytime your child is put under anesthesia it is concerning.

I will post a post-surgery update as soon as I am able to.

Another mom with a child with NF2 created a web page on Caring Bridge for her daughter and shared it with me and the NF2 crew.  I was inspired to make one for Jacob. I'm not sure if any of you remember, but I tried to do this years ago with Care Pages, but never finished it.  Jacob's Caring Bridge page is active and I will update it as medical things happen.

Visit on the web by clicking the link below.
        http://www.caringbridge.org/visit/JacobWGrimes

Jacob's Caring Bridge journal has the previous posts from this blog about his medical information and it will continue to only be about Jacob and will not have any posts about the rest of our bunch.  You can also leave Jacob notes there if you want.  I think Jacob would enjoy reading any words of encouragement or funny stories or just someone saying hi.  Check it out if you have time. 


Below is Port information if you're interested:

In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".


Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.

The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly. To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a winged needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline. The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position.

The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort after the procedure, and can be managed with a narcotic, such as demerol for 24–48 hours.

A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under conscious sedation. When no longer needed, the port can be removed in the operating room.

Feburary 9, 2011 Trip to Shands at UF

Trip to Shands Healthcare at the University of Florida


02-09-11

Waking up at 5:00 am is never pleasant for me. Especially after only sleeping two and a half hours due to a precious little one who hates to go to bed and a twenty year old cat who cries to come in and out of the house all night.

Jacob had a hard time waking up, as usual. He went to bed with another headache Tuesday night and woke up with it still this morning. He also woke up complaining of neck and arm pain and again had the shakes. I was thinking this was not a good way to start our morning. I get so worried every time Jacob says anything hurts or tells me he doesn't feel good. It is impossible for me to just think it's a typical headache, just a virus, muscle fatigue or something simple and normal. I am always on edge, waiting for new symptoms of one of Jacob's many tumors to show out.

We made it out of the house on time at 6:10 am. I forgot my sunglasses and I was dreading the sun rising and blinding me before we made it to I-75 South. To my surprise we were at the end of our drive on I-10 East when the sun started to come up reveling the most beautiful sunrise I have seen in years. The stunning shades of reds, pinks and yellows changed my mood and I felt like God was showing me a "light at the end of the tunnel," or the light of a new beginning. I felt like today was going to bring us hope. I had prayed for peace today for many different reasons and I felt like this was God's sign to me that he was going to carry me through the upcoming hours.

Without any doctors notes to look at, I will do my best to recall the things Jacob's doctors went over with us today.

Our first appointment was with David Pincus, MD, Jacob's neurosurgeon. We arrived on time for Jacob's appointment at 8:30 am. Jacob was happy to see his dad and stepmom, down from Georgia to support him for the day. The nurse called us right back and she weighed Jacob, measured his height and took his blood pressure. Jacob weighed 109 lbs and is now 5'7"!! Wow. Tall and Skinny! Dr. Pincus came in around 9:15 and he went over Jacob's recent scans from NIH with us and he discussed with us the areas of concern. I was relieved to hear that Dr. Pincus met with their head radiologist and they are not concerned about the “unknown” right frontal lobe tumor. Dr. Pincus even made the comment that out of all of Jacob's tumors and lesions, the one in the right frontal lobe remains the most stable. They are sticking to their past belief that it is a meningioangiomatosis. Dr. Pincus definitely does not believe it needs to be removed just because we aren't positive what type of tumor it is. The right side Vestibular Schwannoma (VS) was discussed. Since Jacob isn't having any hearing loss Dr. Pincus thinks it is best to wait to have it removed. He also said radio surgery (gamma knife) is an option to treat the right VS. Even though I have read about many other people with NF2 having their VSs treated with gamma knife, no one has ever recommended this for Jacob. I will have to read and research this new idea.

In 2009 we took Jacob to explore the benefits & risks of radiation and radio surgery for his left optic nerve meningioma. We decided at the time radiation was not the best option for that situation. Radiation is scary.

We talked about the VSs or the VSs surgical removal causing damage on Jacob's facial nerves, but right now we are most worried about preserving Jacob's hearing and will worry about the facial nerve being damaged later.

Dr. Pincus explained how the two eppys could be removed at C-2 and the brainstem base. He still believes that it is best to watch Jacob for pain or other signs that those tumors are causing problems before going into surgery. Lastly we talked about the C-7 tumor that is compressing the spinal cord. Dr. Pincus did an exam and did find some mild reflex abnormalities, which could suggest spinal compression, but isn't enough reason to do surgery and it isn't positive which tumor could be causing it. The rest of Jacob's exam was normal. His walk and balance were both normal also. Dr. Pincus will look at Jacob's scans as he has them, but he wants to see Jacob back in his clinic in six months to re-evaluate him physically. Dr. Pincus and Leigh Ann, his nurse practitioner, are always a pleasure to see and to talk to, and they explain things well in "English."

Jacob's next appointment was with Amy Smith, MD, Jacob's Pediatric Oncologist. Oncology is always very busy, maxed out with kids and their families. It is very sad if you think about it. We waited for several hours, but Dr. Smith is always worth the wait. It was nice to see Mrs. Hillary, Dr. Smith’s nurse practitioner, and chat with her for a bit. After being greeted with a much needed hug, Dr. Smith asked Jacob how he was feeling, how his hearing is and the typical questions Jacob has grown accustomed to. We talked about Jacob's headaches and tremors. We are wondering if Jacob's blood sugar is getting low. She suggested we try an afternoon snack and she told Jacob that his oreos weren't going to cut it. Dried fruits and nuts, whole-grain crackers, bread with peanut butter, yogurt and fruit are all good foods to help increase blood sugar. We will start paying better attention to this for Jacob and encourage him to remember to eat before he starts to feel bad. If eating more frequently doesn't help, we will let Dr. Smith know and we will try to see what else could be going on. Finally we talked about drug therapies. Dr. Smith thinks that Avastin could help stop the growth of Jacob's tumors and possibly shrink them some. She also said she may prescribe Rapamycin with the Avastin later after she does more research to see how it will do with Jacob's seizure medication. Rapamycin is now being used to treat some patients with Tubersous Sclerosis, which is what Jacob was first diagnosed with in 2000. Dr. Smith talked to Jacob about having a port placed, how the surgery is done and how the chemo is administered after the port heals. Jacob was happy to hear he would still be able to play basketball with the port in his chest. No crazy rough-housing allowed though. So now we wait to have the treatment approved by our insurance and the outpatient surgery to be scheduled for the port. After two weeks of healing Jacob will be able to receive his first infusion of Avastin. It takes about an hour and a half to receive and has to be done at Shands every other week. We talked about side effects and she said the tumors will be monitored by MRI. Jacob will also have blood drawn at each infusion appointment to have his white blood count checks and they will do a UA to check for protein in his urine. It is an extremely odd and almost guilty feeling to be excited that your child is going to receive chemo, but in Jacob's lifetime we have never been given anything to fight against his NF2 other than terrifying surgeries. I feel like we are going to do something and not just sit on our hands waiting for his NF2 to get worse. I pray that this drug therapy will buy Jacob more time with his hearing in both ears and spare him from having to have any surgeries this year. Avastin isn't a cure, but we are hoping it will be a huge bandaid that will help for a long time. Deep breath, exhale. Jacob was excited for lunch and really happy he didn't have to have a complete physical at this appointment, lol!

Our last appointment was with Pediatric Neurology. I won't go into great detail about this appointment because it was with a new doctor and we mostly went over Jacob's medical history. I really like the new neurologist, Dr. Edgard Andrade. He was very attentive and spent a lot of time with us. The main reason we were there was to have an EEG scheduled to see if Jacob could possibly be having some seizure activity. Dr. Andrade talked about the different types of EEGs and said we will start with the 45 minute one with Jacob. We are going to try and schedule that the day we take Jacob to have the port placed. We talked about increasing Jacob's seizure medicine and what the average dose was for a person his size. Jacob's dose is very, very low.

That appointment was over around 3:15 pm and finally we could go home. Jacob was dying for Dairy Queen. I googled their locations and we hit one on the way out of Gainesville. Jacob said it was the best chocolate milkshake he had ever had. It rained on our way home, but Jacob and I had a nice drive and talked and laughed and everything felt normal for a few hours.We drove straight to pick up Brie from art class and headed home. I was thrilled to be home, see my beautiful Brie, my little G-man and get a big, much needed hug from my darling Thomas. Thank you Babe for taking such good care of G while we were gone today. I didn't worry once about him and today was the longest time I have been away from him in his life. (Other than the 2 times I was in the hospital, but those days don't count.) I am so thankful for our family and my friends. I would never get through any of this without your prayers and support. Keep them coming!

I love you all so very much.