Thursday, April 24, 2014

Denver Day 3

What an emotional roller coaster we were on today. We got to the hospital bright and early excited about the progress we are making. We were up a lot last night so that last time we woke up, we went ahead and packed our stuff for the day and headed on over. As soon as we got to our room we went to do all of his vitals and nasal wash for the morning. Our nurse, Bradley, told us that the cultures on Bailey's skin came back positive for MRSA and they were not really surprised with the number of open places he has. They said 1 in 4 kids that come the skin clinic have it because of this. Unlike Vanderbilt, they do not plan on an IV to get rid of the bacteria...they plan to take away the MRSA's place to live by clearing his skin so it can't live there anymore. This was a good answer for me because I know that Bailey is resistant to most antibiotics from over-use in the past.

Dr. Elizabeth came to check out his skin while he was soaking for his 8am wet wrap. She was impressed with the amount of progress he is making and told him he can go to 2 wet wraps and one dry medicine wrap a day, but they called in a stronger steroid cream to speed up the healing process. He also doesn't have to wrap his torso anymore unless he flares...now just his legs up to his groin area and his arms up to his shoulders.

Setting up for morning wet wraps

Resting in his wraps
Child life brought him some more art projects and a wii console to keep in the room to keep him from getting bored and to keep his hands occupied. We painted and made some sand art in between people coming in and out.

 
Dr. B our main dr came in and said that after reviewing more of Bailey's info, he really believed that Bailey has a severe form of eczema that is made worse by the immune system issues. Even though it looks nothing like it, it behaves similar and responds to similar treatments.
 This was really good news until the Immunologist came in and took everything in a whole other direction. He felt that it is more a genetic thing, a pulmonology thing, or a heart problem (yes, heart patients can have strange skin problems....I had no idea). Some of the things that made him think some of these is the blisters (which are not typical with eczema), family history of auto-immune, lung issues, etc. He is wanting blood work and an echocardiogram to rule some out and is figuring out how he can also get blood from Kirsten and Chris to rule out genetic things as well. This kind of knocked my feet out from under me and took me back to that initial feeling of having no idea what to do. We HAVE to get some sort of answers from this visit. I have a horrible helpless feeling. If they can't agree, I don't know what will come of everything. I am trying to keep positive, but I am so tired and miserable, it is really hard at this point.
Later in the afternoon they did his first round of skin prick tests on his back to see what his allergies for the first rounds of foods are. For the first time ever, he only had two. This doesn't mean that it is final by any means, but now we can challenge and see if he has a reaction in a controlled environment. The only two that showed up is pnut and sesame seeds. This is crazy to me. The very first time he was allergy tested, he reacted to almost everything on the tests and had over 20 food allergies. He has been avoiding gluten for years in the past and recently for almost 2 years and has tested positive to it at least 2 times even in blood work. He is hoping that they will challenge and he will pass so his diet can be opened up more. The nurse also came by with some news of his immune system work up. We knew his immune system was way over active, and they have ruled out hyper-IgE syndrome, which is great, but his immune numbers are at an all time high. Most kids with a "high" immune system top out around 200. His was 17,500 the last time it was checked in Ft. Lauderdale. Yesterday....wait for it....it was 44, 000. Yep, 44,000! I was floored. They said that with the amount of skin problems, they are not surprised. It is not the highest they have monitored (but very, close).
Late afternoon I decided to go to a class for parents and Bailey took a little nap while our 2 loads of laundry were washing at the nurses station. Soon after, we left for the evening and went to find him a gluten free pizza and took it back to the RMH to eat and play a game in the kitchen area. We washed our sheets to see if that would help him sleep better with his own detergent and went for a ride back to the hospital for soak and wrap number 3 at 8pm. I am not comfortable with doing them at the RMH in a non-sterile environment, so we made arrangements to go back at night for this so he can use HIS tub in HIS room that is clean and sanitary. We got him all wrapped up and headed back here for bed. I gave him his sleeping meds to help him rest so he can sleep in the wraps all night (or as close to all night as possible), but the meds are not kicking in even though we have doubled it from the first night. He is not resting, but tossing turning and crying because he is itching and hurting. His skin looks better so I just wonder if it is burning and itching because he is healing and there is new skin on his "places" that are normally sores?? I don't know...but I know he is miserable. I am hoping for a good night's sleep for us both so we can handle the day tomorrow. I have been holding him and massaging for the last hour as he cries.
Please be in prayer...I know we are only on Day 3, but in my mind, I see time slipping by without concrete answers. Please pray that they can work on this and agree on diagnosis, treatment, and care for him.
UNTIL TOMORROW.......


Tuesday, April 22, 2014

Denver Day 2


 Day 2 began around 6:30am this morning when B woke up in his wraps ready to be changed. We quickly applied lotion and put on fresh pjs. The Dr. came by to say good morning and see how B was doing and told us we could order breakfast. B was very excited about his breakfast today. He had gluten free French toast and bacon. He LOVES pancakes, waffles and French toast. That was a nice treat for him.
Around 8am the PA came in and watched him in his bath and documented changes in his skin. She could tell a difference this morning (as could we). She also had the nurse come and do his blood draw for today and they got that all sent to the labs. Immediately after his bath he began his 1st wet wrap of the day. After he was out of his 8am wrap (that lasted 2 hours) the child psychologist came by to introduce herself and talk to us a bit. Unfortunately, B couldn't stay awake and he fell asleep right in the middle of our talk.  :) 
While B was still napping, it came time for the parent group and today's talk was about sleep problems, waking at night, chronic pain and how it hurts our sleep, and how to help him rest. This was a class I really wanted to attend, so the nurses looked after him while he napped and I left him a note in case he woke up and was alone. Fortunately, he never moved. I made it back to the room before he budged. His blood work will also be checked to make sure he is getting adequate sleep and to make sure he isn't deprived of certain nutrients that can make pain worse at night and cause aching in his joints.
After his lunch was delivered, we started soak number 2 followed by wet wraps and packed our stuff. They were really sweet and brought by items for him to pick from for a prize for doing so well. At this point he was really restless and they let us take him in mobile wet wraps to our room at the Ronald McDonald House. He enjoyed renting some movies and relaxing for awhile until the wraps were complete. I spent my time cleaning and doing some laundry. I got our bathroom bleached so that he could have his 3rd wet wrap after dinner. We decided we didn't really want the fajitas they were cooking here, so we went and picked up something so we could get out for awhile. Once we were back we looked around here at the RMH for awhile and checked out all of the common areas. This is the coolest place I have seen and feel so blessed to be staying here for the next few days. I wish we could stay in the hospital environment (because of germs, etc) but it is really nice. They even brought me some extra linens for our wraps and some nice, fluffy towels for his bath. They have been very sweet. They also gave him a handmade quilt someone hand made and a 31-bag with the RMH logo on it. We just finished bath number 3 and wet wrap 3. He will stay in this one all night long or as long as he can stand it. They had me give him something to help him sleep tonight so we will see how that goes. He has spent 16 hours in wraps in the last 2 days. Even though it is a lot...we can tell a difference in his skin. They seem to think if we can get his body to rest and calm down with the itching, maybe his IgE levels would go down enough to stop the problem with his immune system. We will see how it goes.
I am beyond exhausted and can't even fathom that we are only on day 2. I am going to hit the bed quickly because we have to be back in his hospital room by 8am. Here are some pics we took while we were exploring at the RMH:
Our view of the Mountains

Looks so cold, but it was warmer than PCB here today
Standing next to our room!

B looking out from our window

He is making Mickey ears for daddy and sissy. These paint cans came from Mickey's garage that used to be in Toon Town.

There were so many fun characters. He loved them.

"He bit me!"
B and Sully and his new quilt from RMH

Monday, April 21, 2014

Day 1 at National Jewish Hospital in Denver

He loved all of the new movies!
There's something on the wing!!!!!!!
Sad face because he misses daddy!
To keep from blowing up Facebook with so much information, and to keep me from making 10,000 phone calls a day, I have decided to use our old blog for updates.  Our day of travel yesterday was exhausting (to say he least) and we were worn out by the time we made it to Denver last night. My goal was to post every single night of our trip, but we were beat! We had 2 plane trips (a 1 hour and a 3 hour flight) Everything went smooth, but lugging all of that luggage was enough to kill my back and hips. I was so sore last night when I laid down. Bailey enjoyed our flights and we tried to have as much fun as possible. He spent most of the day crying on and off because his daddy wasn't going with us. The picture here is of "something" on the wing. The window had fog on it so he made a stick figure on the wing of the plane. We also enjoyed the free movies on the long flight. It made the time pass by much faster. We finally made it to our hotel at bedtime and went straight to bed. We tossed and turned all night and woke before the alarm went off of course.

Bailey loved the in-flight free movies


Our view from the hotel
Someone didn't want to wake up at all!


Today was our first full day and we happily checked out of The Hilton Garden Inn downtown and headed for NJH. We made it to the hospital ahead of schedule and quickly were able to check in. They did a few breathing tests and checked all his vitals and we were given the tour of the pediatric skin clinic area. I was very pleased to see so many families here and there are lots of amenities for the kids and their families. We even have a large kitchen area, living area, and a laundry area for washing all of his wet wraps clothes.



Enjoying a Gluten Free Burger!

After we were settled in the private hospital room, several people came by to say hello. Our nurse for the first day was Bradley and Bailey seems to really like him. He helped us order Bailey's food and took us to the group art therapy session. Me and Bailey had fun making some masks. We decorated and painted them. I think he is really going to like going to therapy in there. The environment is very friendly and most of the kids here have similar things going on with them. We took a small break and got checked in to the Ronald McDonald House this afternoon and carried some stuff to our room there. That will be our home away from home for the next two weeks. He should be able to leave here at night and go to The Ronald McDonald House to sleep and report back early each day.
Later in the day, we were visited by the hospital photographer to do before and after pictures and introduced to our Dr. Elizabeth and Dr. "B". His name is long (and Jewish I suppose) and is very hard to pronounce. From here on out...he will just be Dr. B. He agreed with all of the things we have tried with Bailey and seemed a little shocked at the appearance of Bailey's skin. I think the pictures and records we sent in advance didn't really do it justice. He is a bit perplexed as they were hoping for something simple like eczema or psoriasis, but as usual, Bailey is a hard case to crack. They are going to be doing some blood work tomorrow to see how his numbers look since they haven't been tested since 2011/2012. Later in our stay we will work on allergies and food challenges. In the morning they have an immunologist coming to look at Bailey and go over his records with us to see what else could be studied.

Since dinner tonight, we have done 2 wet wraps. One was for 2 hours and the second he will stay in throughout the night. They have also given him some meds to help him sleep. I am hoping tomorrow we will get in a routine and will find out more info on our "plan of attack". I will keep you guys posted. Thank you so much for your prayers for my sweet Bailey, but tomorrow, please pray for safe travels for Kirsten. Her an nanny will journey to Tennessee so she can visit with family there while we are gone.



Thursday, April 17, 2014

It's Been Almost 2 Years!!

Where has the time gone? Almost 2 years ago I stopped blogging and connected to everyone through Facebook. I have missed blogging, but life is so busy, Facebook is generally just a better platform for my busy days. This week, however, our family is taking a break from our normal routine to take Bailey to the hospital in Denver for some testing and treatment. In our search for answers, this hospital has been on the back-burner for years. I wanted to be able to share our journey to Denver for others who may be searching for similar answers. Starting Sunday, I will try to blog daily and add pictures of our progress at the hospital. Have a great rest of the week!!

Thursday, May 17, 2012

New Venture!

Okay....we spend lots of time at home now that we are here in Florida. Since we moved, I have been searching everywhere to find deals on fun things we could do here in a tourist town and not break the bank. My kids see people playing mini-golf, riding go karts, all the tourist stuff, and they want in on the action. One night we went to dinner and were talking with friends and they suggested that I start a blog about saving money right here in PCB. With her persuasion, I decided it might be a great way to share the deals that we take advantage of. So whether you are vacationing in PCB, visiting friends and family, or live here and need to stick to a budget, my blog may be just what you are looking for. From freebies around town, to airline and hotel deals, I will try to keep you up to date with all the latest bargains.

My blog is appropriately name PCB on a dime. You can find it at www.pcbonadime.blogspot.com
My FB page {which is easy daily access and reminders} is https://www.facebook.com/#!/pages/Panama-City-Beach-on-a-Dime/438936772783424  or you can search: "Panama City Beach on a Dime" on FB

Honestly, the blog will have more info, full articles, etc. The FB page is just an avenue because most people are on FB at some point throughout the day and may not have time for full articles. Be sure to like the FB page for it to show up my posts in your New Feed.

Hope you all have a blessed day!

Tuesday, May 15, 2012

Where has the time gone?

Ok, so Spring officially arrived and has brought with it MANY BEACH DAYS! We are really enjoying our beach time. We had a wonderful Easter and celebrated with our new church family. It was definately weird not being back home with family for our traditional dinner though.

This is the kids on one of their last days of school work for the year. They were soooooo excited to be done for awhile. They really worked hard these last few weeks.

Melissa ready to head to Scampy's for some seafood.
We have also had some visitors!! We have had Nanny and Poppy, Nanny and Nana, and of course, The Jenkinators.

Kirsten out in front of our house being goofy!

Ready for an evening ride!
 We are so glad that it is summer and ready for a visit back home. Hopefully, July 13th we will be pulling up in TN for a two week stay with family and friends! Hope everyone back home are doing well. Love to you all!

Tuesday, May 1, 2012

No news is good news, right?

Well, once again, I am the blog slacker! I never make any promises, but I do try to keep you updated. We are all doing lovely and spending lots of time outdoors. Between the parks and the beaches, we spend most days outdoors. We finally finished our schoolwork a couple of weeks ago, so the days are now much more fun around here. We have been working on some projects, educational games, and watching lots of movies. That's my favorite kind of day. Much more relaxed than usual.
Bailey is doing great and healing nicely..thank you so much for all the prayers and we continue to hope that he will get a little better everyday!
If you get a chance this summer, come down and give us a visit, we miss everyone dearly.

Tuesday, April 3, 2012

It Springtime!

Finally Spring has arrived!~
Of course, most of our winter here felt like Spring already...it's kind of like we have jumped into Summer. Easter is at the end of the week, and oh, how we are gonna miss being with family this weekend. I have got a ham to cook, and we are gonna dye some eggs, but we are gonna miss the family gatherings and egg hunts. Instead, this week we will spend most days at the Marina Civic Center for the Panama City Passion Play that is put on by our church. {go HERE for more info.} It is a very LARGE production. Kirsten will be participating in the performances on Thurs, Fri, and Sat night. She is very excited to get to join in. Chris and me and Bailey will be spectators each night. :O)
Our homeschooling is finally winding down for the year and we have less than a week left to go. The kids are very excited to be finished and have lots of time for bike riding and swimming. We have been going to beach about once a week to try to get Bailey some water, but he really needs more than once a week. I can't wait to be done with school, so that we can just stay out there all the time. He is still looking quite a bit better and we are still only taking claritin and singulair....this is probably the least amount of meds that he has ever taken. He has also been seeing my chiropractor here on the beach. She is a wonderful lady. She found that he had some pinched nerves in his neck, so she has been working on getting that corrected for him. It will take awhile to see if there are any improvements to his health. She says that all bodily functions and illnesses can be connected to your spine. So we hope that this correction could maybe help his overall health. {fingers crossed}
Chris job is still going well and his travel is slowing up a bit {thank goodness}. He has started walking with some of the men at work and he has invited several of them to church at St. Andrew. We are hopeful that they will come for a visit.
So, I guess that is it for now...things are pretty much normal and boring...LOL. {that's the way I like it} Enjoy your Spring!!!!

Monday, February 27, 2012

Things are moving into place


Well, we made the move from the temporary condo, to the new townhouse. We are loving the townhouse and feeling like we live in a home, not a vacation resort..lol. Our townhouse is a couple blocks from the water and is almost new. It's a 3br/3ba 2-story townhouse with a garage. We are loving having a garage and all the storage. We had prepared ourselves for condo living, so anything better than that is a huge bonus!! Kirsten says "stairs are over-rated" She hates when it's her time to vac them!
In January, our family, church members and friends came to meet me and the moving truck and packed us all up. One family (the Jenkinators..tee hee) even helped me drive the truck all the way back to FL. Friends like this are priceless. Not only did the clean, and pack, and come and stay with us, they took time out of their crazy lives to drive us back down here, unpack and set everything up. I love you "Jenkinators"!
Now that we are settled, day-to-day life is getting much easier. We are back on track with our school work and are set to be done in early April. The kids are working very hard and are learning more and more everyday. Chris is still loving his job and has been traveling alot! He was gone over 14 days this month. He is learning alot though and really falling into his job well. Everyone at work seems to really like him and he has made some friends. We have found a wonderful church and are feeling like this is where God wants us right now. After many visits and many different churches...this one seems to fit the most. They have wonderful classes for all of us, Chris is doing a Courageous class, Awanas for the kids, and they are very Missions-minded. They have over 12 trips planned for the next year. Its very exciting. The church is called St Andrew Baptist Church and is located in the St. Andrew Bay area of Panama City.
We have started to do more and more with the homeschoolers in our area. We have went to some of their homes, went on field trips, and had a nice Valentine's party at a park!
Bailey's health is continuing to improve. Since January, we have been trying a Gluten-free diet with him and he looks better than usual. We have had him off of the pedia-predisone since then also. We weaned him off slowly and we are hoping he can stay off of it. He has been on it since he was 3 or 4. It is soooo bad for you. Please pray that he will continue to heal. We are very excited for the sun, sand and salt of the spring/summer. This usually heals him even more. We have found one dermatoloigist in Tallahassee, but we are hoping that we won't need to go see her very often. Please be in prayer about us finding doctors in general. I am in need of a good OB-GYN, we need a chiropractor, a dentist for all of us, a family dr, pediatricians and an orthodontist for Kirsten's braces. whew!!! The thoughts of that is completely staggering to me. The pediatrician alone is enough to make me freak out. Most dr.s just cringe at the sight of Bailey. They want to mess with his meds, his treaments in general. For now, we have our own way of doing things and he is getting better, I just don't want someone to mess with it. LOL.
Bailey cooking up some treats!!!
Well, we are hopeful that now that Spring is almost here, family and friends will return for some visits. The kids are excited to show the grandparents their new rooms and their bicycle skills. I can't wait for "visitors" to come for a visit as well...it gets a bit lonely here. In March, we will be celbrating Kirsten's 11th birthday and in July, Bailey's 9th. It seems NO WAY possible that they are this old. They are so so big now!
Clint and Linli are still in China...working on getting Linli a visa so they can return to the US this fall to finish up school and so she can work on her Masters. I can't wait to see their faces. Their wedding is set for May 20th in China. My parents will be traveling there to be present for the ceremony. Considering the price tag, the Hyder's will not be attending. The price for flight alone would be near $7000. We will be helping my parents with a reception at the end of summer/fall for them held here in the states. We are very excited about that as well. Kirsten is starting looking for a dress to wear and I have been hitting up pinterest for lots of ideas. We have also continued our studies of Mandarin so that we can speak more to her family when they visit. So, until next time! zài jiàn....that's Goodbye in Chinese!

Wednesday, December 21, 2011

Getting Settled!

Hey guys!!! Hope you are ready for Christmas, it's just around the corner. All of our packages are wrapped and ready except for a few in TN. We are settling in here in FL and enjoying the sunny weather. Its been 60s and 70s almost everyday! Lots of new things to get used to, but it's going pretty smooth. We sold our house this week and we have found a wonderful townhouse over near North Lagoon area and we are less than a minute from the water. Our anticipated move in date is Jan. 10th...hopefully a little before. God is soooo good and sold it just in the right time. We are sooo excited about getting out of this resort. Parking garages, elevators, and lots of tourists are nice, but not at your house...lol. We are ready for the townhouse!
Chris' job is going well too. He has already went on his first business trip and has several more planned. He is learning alot and having fun doing it. (that's the most important thing) He works with alot of nice people, and has a wonderful view from his office. It faces the bay, which is only about 10 steps away. He saw dolphins playing one afternoon and text me to rub it in. I reminded him I was at home and could walk down to the beach anytime I wanted...lol. :)
Unfortunately, we have been doing lots and lots of school to stay on track for an early summer. The water is fairly chilly, so we just go down for walks, to read, or to play in the sand for awhile. Its really good to be down there for Bailey as much as possible. He has only gotten in 2 or 3 times though. Like I said, it's pretty chilly. He will dip his legs and then run cover up. The question everyone wants to know, "is he getting better?" Well, it's not that simple. Dr's have told us it will take his body long amounts of time to fully heal, but does he "feel" better, the answer is YES. No crying at night and aching in his sleep. His places look fairly the same which is amazing. Since we have moved here, the "new Dr." did not want to continue his light treatments. So he is missing those. This summer it shouldn't be an issue, but right now, I feel like they were helping him some. All of his medicines are the same for now, but we are hoping we can cut some out this summer. Especially the prednisolone. It is very bad for you and he has been on it a long, long time. As far as infections, he has been great. No infections or signs of any for awhile now. Say a prayer that this will stay that way. Once he gets one, it takes forever to fight it. We found that out in Sept. while we were here and he got in a pool. Needless to say, he has not touched the pool. :)
Hopefully, as the weather gets warmer, we will be able to dip him and stay out so much more and not have to worry about school so much. We should wrap up our year in April if we stay on track.
So, as far as churches go, we have found one that I think will be a keeper! www.sabc.org
St. Andrews Baptist Church in Panama City is only a 10 minute drive across the bridge, but is well worth it. They have welcomed us in with open arms and the kids love their great kids programs. Every Wednesday night is family dinner in the fellowship hall, followed by a short devo. Everyone knows, I LOVE DINNERS at church! Even though we miss our church in TN so bad.....we are really liking this new church. The kids have started AWANA and are really liking it. They have made lots of friends and so have we. :)
Well, like I said, it's almost Christmas. I hope that each and every one of you have a wonderful and blessed Christmas this year. Remember the "reason" for the season and keep it in your heart as you travel from party to party! Love you all!