Mon. 5/5 - update

Today was a very BIG day! It started out very normal. (some pain/vomiting) Caed and I went for a ride in the wagon and ended up on the 2nd floor playroom. All of a sudden Dr. G came in. We discussed a few things and then she asked me if I felt comfortable with bringing him home. (that's kind of a loaded question) Yes! We want to and feel he will do better in a home environment...BUT, we are also scared to death! We talked for a while, and decided we needed to give this a try. So, for most of the day they worked on all his dismissal papers and also Home Health info. It was exciting thinking about leaving, but also very nerve-racking. I want to stress that he did not get dismissed because he is all well and doing so much better. He is doing fine, but we still have a long road ahead of us! We all decided this would be a "trial basis." It is a possibility he might have to be readmitted at some point. We PRAY not, but we are also not teasing ourselves into thinking everything is great now. We still need your prayers! Nothing with Caed has changed other than his address. We have seen how well he has done with the time-away passes, so we're hoping for the same on a more permanent level. His G-tube is still draining; although we are clamping it a lot through the day. He is also still on his TPN (19 hrs. /day). Caed has an appt. with Dr. G next Monday (or sooner if we have any problems) A Home Health nurse came out this evening and went over everything with us. She will come every Mon. and Thurs. (more if we need it) However, I think we can handle all the meds, etc... She will also draw blood at those times to continue making sure all his numbers are ok. I FOR SURE will be getting more nursing points after this!! We have had such a long day...everyone is exhausted. Things will certainly be different for awhile until we get in the swing of things. Remember when I wrote several days ago about wondering when it would be our turn to load our carts/wagons with all our belongings?....well, it took many, many trips up and down to get everything loaded. (thank you Tamara, Hayden, and Haylee for your help!) Those of you who have been to our room know what we talking about. The drs./nurses kept teasing us that we were going to need a U-Haul! Now, we feel like you do after you move. Things are just stuffed in bags, and we have no idea where anything is! Maybe that will be tomorrow's project.

Thank you for your prayers! Please continue to do so....we have taken a HUGE step today. Pray that he will only get better from this day on!

If you want to mail anything, you can keep sending them to Todd's mom, or mail them here to Idalou:
Ray Everitt
914 W. 9th St.
Idalou, TX 79329




Celebrating Cinco de Mayo



Saying good-bye to our sweet, sweet nurse



"home" at last!

Sun. 5/4 - update

Caed, Nana, & Caleb enjoying sitting outside

Today's update will not be very long. (which I guess is a good thing) He did great through the night. Never woke up in pain or vomiting...only when the nurse came in to mess with him. We came out to Idalou around 2:30 and will leave around 7:30. He hasn't done bad. Most of the day he has wanted to just sit, but he still is moving around 10x more than he would if we were at the hospital. We have been clamping the G-tube more. When we see it (sickness) coming on, we go drain it. The drs. want to see it clamped more to FORCE the stomach to work. (hopefully it will begin to do so) It was funny because on our way out to Idalou, we were stopped at a red light just down from the hospital. My mom noticed Dr. Goldthorn was in the car right beside us! We rolled down the window and "discussed" Caed for a few seconds! ha! She told us a few things we might start trying. It was just weird having that conversation with her there on 19th Street! Anyway, we are still looking at bringing Caed "home" (to Idalou) for some Home Health care. (not sure when that will officially begin) We are already throwing out some ideas as far as him a bed, etc... I PRAY this will be the answer we've been looking for, and that THIS will help his body to recover. (it definitely can't hurt) He is more mobile when he's out, and he also eats more (maybe 1 piece of popcorn though). However, just being in this environment helps give him some "control" back. At the hospital he is at the mercy of everyone there. Keep praying..................

(thank you Justin, Logan, and Landry for stopping by! It was so good to see you all again. You've definitely grown from the 4th graders I remember you as! Y'all are very special guys!)

Sat. 5/3 - update

Today has been pretty good. He has definitely still had some pain/vomiting, but overall...we would classify this day as positive. Todd left out very early this morning. He will fly back Mon. We had a surprise visit from some more special visitors today. There was a knock at the door and....18 Harley Motorcyclists came in! It was so cool. Caed was a little shocked. They are apart of the Christian Motorcyclist Association. They gave him 2 teddy bears, balloons, and some coloring stuff. Caed of course wanted to SEE their motorcycles. So, we loaded him up in the wagon and went outside. They had them all lined up out front. Caed especially liked the red and blue ones. They gathered around us and prayed. It was awesome! To hear the prayers coming from these "big, tough guys" (and a few girls). What Caed wanted to see most was them get on their bikes and ride. Finally, the time came and boy was it loud! He covered his ears and grinned so BIG! (thank you Kim for setting this up!) After his nap, we got another 4 hr. pass and went out to Idalou. He did pretty well, but got sick several times. Just getting away from the hospital is so good for him (regardless if he doesn't always feel like playing). The drs. are talking about some longer passes...24 hrs...48 hrs...etc. A representative from Home Health called me this morning and was starting the process. Haven't talked to the dr. today, but she is thinking about either tomorrow or Mon. (24 hr.) Caed is excited. Sorry the blog is so short tonight. I don't have as much free time when it's just me here. Thank you again for continuing to pray! We still have such a long road ahead of us, but are optimistic that he will get better.



Caed received quite a surprise when 18
motorcyclists came to see him!



Showing Caed their bikes


10 Harley's are awfully loud!


watching as they drive away

FYI

I wanted to include a small explanation tonight. We have had so many people asking questions and very concerned with us still being here (Lubbock). #1 - we trust our drs. wholeheartedly! We believe that they will lead us to another hospital, etc...when they feel we have exhausted all our options here. The things that have happened thus far would have happened no matter where we were at (they had nothing to do with the drs. or their abilities). #2 - I am so sorry because I am the world's worst at translating what the drs. come in and tell us each day. I am a visual learner. If they would just start drawing pictures, I could better translate that info to you. ha! I feel like most days I am only telling you 50% of what they talk to us about. (again b/c either I couldn't remember it all, didn't totally understand it, or I didn't want the entire blog to be drs. reports.) I try to summarize the most important stuff. I hate that the only info you are hearing is coming from ME! I truly apologize. Others could do such a better job! We usually talk to 2-3 drs. daily and sometimes for 15-20 minutes at a time. That's a lot of info that we're getting and you are not. Very sorry! Please know that we are wanting what's absolute best for Caed. We are his parents!!! Therefore, if we for one second felt that our drs. were not giving him the utmost priority and care, we would go elsewhere in a heartbeat...even Kalamazoo!!! Right now, we feel very confident where we are at and again will go when they say "Go!" There are so many things that I don't fully understand (and of course I wouldn't...I didn't go to med-school) BUT....I do trust them!! We are here with Caed everyday and talk with the drs. everyday. It would be wrong of me to say that we are trusting God with all the details and have seen His hand throughout it, but yet NOT trust him with the drs. that He specifically had on call the night of March 1st!! God's in control of some things and not others? Absolutely not. That's why we are still trusting Him now. When/if GOD wants us to go for care somewhere else, He will open those doors and we will follow. It's easy to want to put the blame on the drs./hospital/location, etc... when things don't get fixed quick! But, our hope is not in those things. It ultimately is NOT them that will heal Caed...it is our Great Physician Jehovah-Rapha! Again, sorry this has turned into such a long blog, but I truly wanted to apologize for my lack of information each day. I know it would be so hard being on the side you're on and only getting brief summaries. Please just trust us while we TRUST HIM!!!!

Fri. 5/2 - update

Overall today wasn't a bad day. He was still in pain several times and did throw up some, but overall he felt ok. We had some VERY special visitors come see him. More Texas Tech football players. (thank you Angela for setting this up!) These guys came dressed in their jerseys and had some cool gifts for him. He was excited. He just kept staring a hole through one of them. They were such nice guys and we appreciate so much them taking time to come see him. It'll be something he remembers always. (us too!) Definitely one of the highlights from our stay here. He is having to be back on his TPN for 20 hrs. at a time now, since we've stopped the tube feedings. Kind of a bummer because it means we can't have a very long "time-away." This afternoon, once he got unhooked from everything, we decided to go to Grammy's house (Todd's mom). She literally lives right down the street from the hospital, and since we didn't have much time today (2 hrs.), it was perfect. Reagan and Caleb were also over there, so we got to see them too. He did well. He played some baseball out in the backyard w/ Daddy and Reagan, rode a bicycle, and watched everyone play some Wii. He even walked over to the fridge and wanted some juice and pretzels. Hasn't eaten anything in over a week. Of course, since his G-tube is draining continually, it doesn't matter too much what he takes in. It just comes out anyway. However, the dr. said some of it does go on through. We had a long talk with the surgeon tonight. One thing we are going to try is having a 24 hr. pass away. We definitely see where he does more when he's away from the hospital. How we PRAY that this can help things start working better. She has some plans for the our next step. Hopefully we'll see progress when we start those.

My dad made a comment last night and Todd and I totally agree: We can be in the deepest, darkest valley (emotionally), and then immediately be on the highest mountain top with just one smile from Caed!! Oh, how true it is. Seeing "old Caed" makes you forget just for a moment our current situation. We thank GOD for giving us those little smiles and at just the times we need them most. Thank you Lord, that You do not give us more than we can handle.

Look upon my suffering and deliver me, for I have not forgotten Your law. Defend my cause and redeem me; preserve my life according to Your promise. (Psalm 119:153-154)

Antonio Huffman, (DB) Trenton Nickerson #25,
(DB) Jarell Routt #36, (LB) Victor Hunter #52

Uncle "Otar" and Uncle Brad...we know you
are SO jealous and wish you could have been
here as well!


signing Caed's t-shirt


riding a bike at Grammy's house


playing baseball w/ Daddy

Thur. 5/1 - update

It's been 2 months today! As I walk through the halls of the 3rd floor, I see old patients gone and rooms empty and then new ones who have come to take their place. We are still here. With envy we watch as others load up wagons and carts full of their belongings, balloons and gifts and head home. Oh God! When will it be our turn? The 3rd floor has become our new home. We have had every nurse possible and they all know our story and have come to really care for Caed. We love them all and can't say thanks enough for everything they are doing for him. One nurse told us yesterday that they have had babies here for months at a time, but little babies don't know any different. They also have long term chemo patients, but they are here for a few weeks and then go home for a few (and that cycle continues for the duration of their treatment). However, she said Caed was their first child this age who has had to be here THIS long and not get to go home. It has been so incredibly hard on him. He just doesn't understand why everything was fine in his world one day and then completely turned upside down the next. We have a big 8x10 picture hanging at the foot of Caed's bed of he and his little friend Reid. They are decked out in their Celina orange, wearing helmets twice their size and holding a football. I'm sure they had quite a game going on. It's so hard to look at it and see Caed "before"...a vibrant, full-of-energy little 4 yr. old boy. I'm starting to forget the "old Caed." For some reason one image of the "pre-sickness Caed" keeps playing over and over in my head. Caed's highlight of the week was Thurs. nights when the Sr. guys (or "teenagers" as he liked to call them) would come over for Bible Study. Before they got started, they would always have a game of "living room baseball" or sword fights or Seth ramming Caed's head into the wall (ha! we'll never let you live that one down) However, these memories give us hope of days to come. Lord willing, he will be back with his friends again playing, laughing, making messes, knocking baseballs through the window, and just being a kid! Oh God! Hear our cry...make it SOON!!!

Our main prayer right now is for Caed's stomach. His intestines seem to be doing ok at this point. The dr. told us tonight that IF he had to go to Nebraska for a transplant, it would be a multiple organ one. (sm. bowel and stomach!) She stressed over and over that they were going to try everything possible before that becomes a real option. He has been in lots of pain again today. However we are seeing a pattern that is all too familiar (from days past). Cry in pain...throw up....calm...and the cycle continues all day. His stomach was twisted up with the bowels from the beginning. It is now an abnormal shape. Instead of dumping into the sm. intestine like it should, it goes up and around and forms some pretty tough angles. That is one reason for all the vomiting and also one reason the dr. had such a tough time trying to reinsert the J-tube yesterday. The last 2 days his G-tube (stomach) has been closed. This evening they have inserted a tube coming from it and are draining it continually. (again to give him some relief) We also saw tonight for the first time in 2 days a smile and some "life." He still isn't talking, but is getting very good at sign language (primarily pointing...ha!) Bridget, you would be so proud! Not sure when they will start the feedings into the stomach. We are pretty nervous about it because he is having trouble even keeping water down. Please pray for this in particular. I don't understand why God keeps closing the doors to all these treatment plans, BUT we know He has Caed in His hands and IS IN CONTROL! Lord, help us to trust You daily and remember that YOU see the big picture!

For I know the plans I have for you, declares the LORD, plans to prosper you and not harm you, plans to give you a hope and a future. Then you will call upon me and come and pray to me, and I WILL LISTEN TO YOU. You will seek me and find me when you seek me with all your heart. (Jeremiah 29 : 11-13)

Fear

Caed has many procedures done to him on a daily/weekly basis. After all this time, you would think he would have gotten used to them. However, if it has anything to do with his chest/abdomen area - watch out! You are messing with an area that he is very protective of! One procedure that is done every 7 days is the "changing of his broviac dressing." (port going through chest) It is a major ordeal for him and the nurses have all learned it. Everyone dreads this day! It is a very easy procedure. If any physical pain is involved it is simply pulling the tape off his skin. When it comes time, it usually takes 3-4 of us. One to clean/change dressing - one to hold hands - one to hold legs. There is a look of sheer panic and fear that comes over his face. With tears tolling down his cheeks, he cries out "It's going to hurt!" We hold his hands and TRY so hard to reassure him "it's very easy - it will be ok - I PROMISE!!" Then we have to continue repeating ourselves over and over..."TRUST US! -It's ok - We're right here...just be very still!"

The Lord brought this all too familiar scene to my mind last night. We are experiencing sheer panic and fear like never before. The Lord is messing with an area of our lives that we are very protective of - our child! With tears rolling down our cheeks we say, "It's going to hurt Lord!" And He gently holds our hands and TRIES to reassure us "it will be ok - I PROMISE!" And then He continues repeating himself over and over, "TRUST ME! - It's ok - I'm right here...just be very still!"

So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
(Isaiah 41:10)