Saturday December 31, 2011
I’m calling this post the “don’t take anything into the new year that you meant to do earlier post update on Kevin”. It will be all over the place but done!
The great news! Kevin took his last steroid Wednesday Dec 28! I have notes from doctor calls and visits tucked here and there that I need to get posted here! (it helps me to have a place i can go back and look) He did get all caught up with make up school work since the last update but it took every bit of that 2nd 6 weeks. The semester ends mid January so he is back on track in that area. Also we said we were going to do something big and we will but for now he plays that card everytime he thinks of it. We might get him a new video game or a subscription on mine quest and he will say remember all that make up work I did! I don’t think I could ever tell him no if he peppers it with that! (just don’t tell the Ezzios!)
We saw Dr. Mehta at Texas Childrens on Dec 6 for a routine check up. The next week which was the last week before Christmas break he “hit that brick wall!” We had to visit Dr. Pope and he did a “fatigue work up on him.” Basically ruled out a list of things he scribbled on the examining paper. The funny one was “burning the candle at both ends!” Yep…thats Kevin! He is manager of the basketball team and they went one night to Pasedena! The very next night was a wonderful band Christmas concert and homework and projects and Christmas parties sprinkled in to keep him up late. So Dr Pope ordered labs and gave him a school note since he missed 2 days. The quick results before we left his office showed that he was dropping bilirubin in his urine at a +1. Which “they say” normal kids don’t do but Kevin is not a normal kid. Can you believe that? Dr. Pope talking smack about my Kevin! Other than that it ruled out a lot that his pain and tiredness wasnt. The bummer was we were about to get to go 8 weeks between labs. So to back track on the numbers from the labs (some of my scribbled notes) he had these numbers:
November 9 Labs AST: 31 ALT: 35 GGT: 85 Such good numbers! 1of 3 in normal range and the other 2 super close. AST was the normal FYI.
December 14 Dr Pope Labs AST: 73 ALT: 64 GGT: 83
Dr. Pope’s office called and had us call Dr. Mehta to tell her his panel results were on the website for her to look at to determine what she wanted to do. So basically Kevin wasn’t experiencing anything new from “the list!” but he wanted her to take a look and touch bases with us on our next move. But he basically thought the AIH was “flaring up.” I don’t know the terminology. Tag. Your it. That is what pops in my head! So she did call and basically wasn’t too concerned about his levels but was if his symptoms did not improve. He was experiencing some pain but not “get to the ER for a work up pain.” He had started his tapering of steroids, was advised to stop taking the Prevacid since the steroid dose was so small and almost done but other than that no other changes to note. She felt his body may be just fighting a virus and depending how he felt through the weekend of the 16th she would either order labs early or later in the next week. She wanted us to call her with how his weekend went and once we did her office got back with us to say she wanted labs and that they have put in a “standing order” at our Quest. That was happy sad news. Happy cause I didn’t have to keep up with the orders and have them when we went! I like to say I’m organized but where I let the orders folder “float” and my mini were 2 different places! So now we can just walk in and they will stick a needle in his arm no questions asked! Yep. That’s the sad.
Labs from December 20:
AST: 64 ALT: 73
What can I say. I got this numbers call with Tiffany during a “gel-ish” mani so when she said they were basically about the same I didn’t ask GGT number. She is not concerned at all still but wants us to have more labs next week. Our original 8 week orders were for jan 4 so we will go around then. So much for making it 8 weeks without a lab.
Also on the back track front from when we saw Dr. Mehta on Dec 6 for a routine check up. Nothing was going on then of course! When Texas Children’s calls to remind you of your appointment they also say please don’t come if you are sick. Which Keith was, so Kevin and I had to go solo on that visit. And I have notes from that visit in my red “all things medical” folder but it is not floating near me now. So i will just go from memory. I do know she asked if we were able to get any of Keith’s dads medical records and we had not then. She is just very interested in seeing family history. But mam maw sent us a stack of them back after Christmas so we will have more than she ever needed at our next visit in 3 months. It will take me that long to scan or copy them. (This Feb 17 it will be 10 years since Big Daddy passed away.)
My memory from that office visit was how hard she tried to get Kevin to talk to her about anything and he would just look at me smiling with shoulders shrugging! And how hard I tried to not look like a controlling mother who never lets her kid speak! She was not concerned with his weight gain but said it should be down at the next visit since he will be off steroids. I was concerned that the high dose of steroids might have stunted his growth but he measured an inch taller at 5′ 9″ from his first visit to her. Of course he couldn’t stand at that visit so will we ever be sure:) She did say to this that usually it is not a concern but if he needs a second round sometimes at his age it could. Which is where we are currently. With his levels rising a little Dr. Pope and Dr. Mehta said he just may be one of those candidates who needs to be on steroids a little longer and maybe even a low dose long term. But for now they are just going to continue to watch him. So we are watching him:) She wanted his vision retested due to migraines just to rule that out so we saw his eye dr over the break and other than his pre existing convergence insufficiency…double vision…he has had since the 3rd grade he is fine. So we will keep monitoring his headaches and if needed take the next step.
So much since the last post and I was going to stop posting! But even though we are adjusting through it all I need this place to keep my sanity! My mind written down. Well, half of it anyway!
I will close this post with a verse I send to those who catch me at “a bad time”:
And my Bible opens to Joel… “Therefore also now, saith the Lord, turn ye even to me with all your heart, and with fasting, and with weeping, and with mourning: And rend your heart, and not your garments, and turn unto the Lord your God: for he is gracious and merciful, slow to anger, and of great kindness…(Joel 2:12, 13 KJV)
I have been a weeping-mourning-rent-hearted mommy who is probably in need of sleep more than anything else, as always, and laugh remembering years ago going to my family practitioner for how tired I was with toddlers that I had to have something wrong and he prescribed a cook, a maid, and a nap! We continue to trust Him for direction for Kevin’s healing and find great peace in doing so.
Wednesday November 2, 2011
One thing we have noticed is he is finally not as hungry as he has been! He actually can come in the door and do something besides forage for food. His steroid dose is now tapered from 60 mg per day down to 25 mg. We did take him to the dermatologist since the rash has not improved if anything it’s worse and the antibiotics he wanted to put him on to help with it he said he doubted our hepatologist would approve. I called down there just in case and instead of her nurse calling back she called and said he is to never ever ever take doxycycline monohydrate…guess that settles that:) So an over the counter soap bar and shower foam will do for now. He is like 7 weeks from being totally off them so maybe he can just keep dealing with it. Yikes! Poor Kevin. On the make up front who knew next week is the end of the 2nd 6 weeks. I thought we had 3 more weeks. So he is now on the geometry fast track. He made up 1 of 3 tests yesterday and will make up test 2 on Friday leaving just one more before next Friday and he will be officially caught up! We will do something big when that happens…really BIG!
Wednesday October 26, 2011
We got the numbers call again so this is a much better place for me to put them than whatever paper is in front of me when we get the call! Great news: ALT: 54, AST: 27, GGT: 99 !!!!! She still wants another lab draw in 2 weeks and for him to keep tapering down on the steroids. He is at 15mg twice a day now from 60 mg when he started. He did need to see Dr. Pope last week for a rash we thought first was laundry soap or shower soap then steroid reaction but Dr. Pope said he thought it looked viral and keep an eye on it and if in 2 weeks it hasn’t improved then get in to a dermatologist. He has had energy last week and this week and as band is tapering down now basketball picks up with tomorrow being the first after school practice. I think he hasn’t even officially made the team yet so hopefully he will know something soon:)
Wednesday October 12, 2011
We got great news this week! Monday he got the all clear from his surgeon and today we got the numbers call again. ALT: 118. AST: 45. GGT: 160. He has dropped another 10 mg of steroids too. We are on the taper paper and will be til 2012! He gets to start going every 2 weeks for lab draws instead of weekly. He has left his hall pass at home and if you saw him in the halls you’d see a normal boy with his real back pack walking to class with everyone else! His after school energy is increasing too. Basketball is keeping him sore since they are in the weight room and band is keeping him busy. He may never really march the routine but he is on the field playing and in the stands. I have started this and gotten sidetracked so many times then it goes away! So this is probably the last update on this page since life is really dare I say: back to normal. As normal as living with a SMTWTFS kid can be any how:)
Wednesday October 5, 2011
I got “the numbers call.” He went to the lab yesterday in Tomball they send the results to his doctor at Texas Children’s and we hear all within 24 hours. His labs are better. His AST is 80 from 143 last week; his ALT is 221 from 409 last week; his GGT is 203 from 263 last week and all that EQUALS taper down on the steroids starts today!!!! If all goes according to the taper plan on the paper he will finish his steroids and be completely off of them 12 weeks from today. And that means he will go into 2012 just taking the low dose chemo. I am ready for that. I picked up a dozen kolaches with Tiffany when she was here on fall break and said he can have them as an after school snack and I will freeze the remaining and they can be a yummy warm out the door and in the jeep breakfast for him and Cole. I went to freeze the remaining and there was only 6 left! He ate half a box of kolaches for an after school snack!!! But the taper paper plan begins today!
Friday September 30, 2011
Kevin made it the last 4 days of school this week:) Today he even stayed after and dressed out in band for the football game. He played in the stands and on the field but he did not march. He has to learn something–I over heard the tubas say–like 50 more sets! It is a very good feeling to see how far he has come. It was also very weird being in such a crowded football game and feeling like we didn’t belong because we didn’t know what to expect. We will get the routine down but felt like visitors at a home game. He also took some tests last week so he is feeling like he’s got this! Yes! I took a picture with my cannon rebel and not this phone but maybe soon I will do the old school thing and download the photos so I can upload them:)
Wednesday September 28,2011
Some good news about Kevin’s levels. Dr. Mehta’s nurse Melanie called with the results of the lab he just did yesterday. The numbers are still lower and she wanted to check next week which we originally were off for labs next week before she will start tapering the steroids. They are not in front of me but the key one was in the 400s. Down originally from 1800s. This is week 2 of meds too so it’s going in the right direction. She also wants him on a multi vitamin and a separate vitamin D supplement. She said just pick one and I begged her please give me a brand. There are too many to choose from. She said since he has so many pills that chewable or gummies are an option and I thought to myself. You don’t know my kevy. Gummies are always an option! Sure enough when I picked him up and told him all the scoop I asked what type of multi vitamin he wanted and he smiled that adorable smile and said “Gummies!” We may have to get him a bigger SMTWTFS or as Cole pronounces it “SMorTWiTIFS!” It really is impossible to say but everytime Mam Maw visits and needs her medicine box Cole always makes her call it that before he will give it to her!
Tuesday September 27, 2011
Kevin is going to school today! The 6 weeks shockingly ends this Friday and he went 3 days of the first week of school and 3 1/2 days last week and we are shooting for 4 days the rest of this week. (10.5 days out if 30 not bad) He will receive lots of “I’s” and can get them removed slowly and without stress each teacher is saying, and they each have a great plan for him and are so willing to work with him. Such a praise! Caleigh is home one more day and is feeling much better and Keith even overheard her say, “I didn’t know staying home could be so much fun!” I told her wait til the make up work only for her to tell me third graders at her school never have make up work! Oh to be so happy and clueless!
Monday September 26, 2011
He stayed home from school but it was because he is not sleeping well and getting up all through the night. 2 things that happened today in way of follow up that all things medical make me nuts!
1- Dr. Mehta (Princess Jasmine) his liver/GI doctor called this morning to hear about his trip to her ER since she was out Friday. After she looked over all that days numbers and tests she is pretty sure he could have had hopefully a one time episode of pancreatitis. And is thinking of some back up plans if it occurs again:) She did say for us to not wait around for them to return our call but to leave a message that we are headed to ER if he ever experiences that pain again. Never knew that. Good to know. Especially since watching him in pain and being able to do nothing but run in another room and cry was not a working option! I asked what pancreatitis was and she said like it sounds and like my bff on the way down told me it was…an inflamation of the pancreas…but Dr. Mehta said after tomorrows lab work if his numbers go down any they may start tapering his steroids off. Steroids can cause loss of sleep she mentioned but was concerned that the azathioprine, the low low dose chemo for aih, could be causing the pancreas to be inflamed. But she said there are other options and will be thinking of some in case it turns out to be that. So we left the ER Friday so glad to be going home but with no real answers only to get a better picture today.
2-another interesting thing that makes me nuts is Kevin left his urologist a urine sample last week because we were thinking, again bff input(!), maybe he is getting a uti type infection since he is not sleeping needing to use the bathroom a couple of times in the night. So we got him up there to Tomball where our hero doctor is who performed the original procedure and left that office with their “sample.” I called everyday just checking. Especially since we were seeing Dr. Mehta last Thursday for a regular check up. They said it takes several days. Then in ER they made him give a sample and just this afternoon the urologist called and said he is growing some bacteria and it can keep him up at night so they are calling in an antibiotic once the hepatologist approves it he can start taking to clear that up. So kind of good news but poor guy could he have anything else wrong:) But hooray if it will help him get a good nights rest!
I am worn out from preparing healthy food for him! It’s prep for food, make the food, he eats the food, then wants to prep for the next meal! It’s a good thing we made Jedi Juice pops yesterday. Caleigh so far must be viral with all the symptoms of strep so she has been ringing the bell ordering more pops all day. Tonight we will finally prepare the dark side salsa and he wants Obewan kabobs! For lunch today he helped me make my moms wonderful home made tomato soup and a salad. The salad dressing was a gift from Florida and it had a recipe for salad on it so we tossed that together and he engulfed it! I’m either going to need the secret recipe for that 1905 dressing or my Florida source will need to keep us in that like we keep barbecue sauce and ketchup around when my nephews come! Caleigh is trying to read her blue bonnet books this year and since she was sick I read aloud to her with Kevin listening in the living room…of course it was Origami Yoda:) Yep…it’s a genuine Texas bluebonnet book!
Sunday September 25, 2011
Jedi-Juice Pops:) Kevin is having a great day but Caleigh had to go to the cvs minute clinic. She has all the symptoms of strep throat except a positive strep test:) So she is quarantined from Kevin and waiting it out. If “they” call we get the magic bullets if not she is just viral and gets rest and Tylenol for temp:) So once again when Kevin is not eating he is looking through the star wars cookbook for food! He made Wookie Cookies and has the ingredients for Bosk Brownies. He had planned some Dark Side Salsa but since Caleigh threw us for a loop we came home from church and had good old mom’s Costco quesidillas….I learned how to make them in the isle of Costco in Alaska and was amazed it was so simple. I was sure that was an out to eat at papasitos food for sure!!!
Saturday September 24, 2011
It was a very long day in emergency room 9 yesterday. We were sent home last night after blood tests and an ultrasound gave the team enough peace that he was not experiencing appendicitis or pancreatitis. He rested between tests and Keith and I sat. Read. Waited. We are so thankful that they found nothing serious but in the back of our minds will always wonder just what was going on. Today he is back to his usual “Emeril” self. He and Keith made Oola-la French toast for all of us for breakfast and had me write out a list for Obewan-kabobs Ewok eats and Bobba Fett-ucinni:) We will make a great team. He loves finding the plan and I so dread making one!
Friday September 23, 2011 cont noon
By 10 we had heard from the nurse a couple of times and they wanted us to get him to Texas Children’s ER to be evaluated for pancreatitis. So that is where we are now just figuring out today’s random abnormal pain:)
Friday September 23, 2011
He was standing by my bedside at 5:30 am in an unusual and abnormal amount of pain. So we have calls into his doctor and are watching him until they call. He is resting and did shower but I think he may have just hit a brick wall. It has been a good week for him but alot to take in too. The pain has substantially subsided but I just don’t think he thinks he would want this at school. So for now he is staying home. Getting rest. And waiting to hear from her.
Thursday September 22, 2011
The word of the week is “embedded!” We have been embedded in back to school with Kevin and make up work. Each day a different plan is revealed that makes the job that much more do-able. Geometry seems unending but he is getting it. English should be caught up after he writes a descriptive essay and we now have a skype Latin tutor to help get him through Latin:) He touched on biology tonight cause Keith was at a deacons meeting and I’m not allowed to ever help the kids with math. So we spent our time on biology vocabulary. Give me English and essays any day.
His check up downtown was today with his liver doctor and she spent alot of time with us. Clearly it is as I pictured. The white knights of the liver are fighting those red ninjas of the immune system. He doesn’t have a liver problem but an immune system problem. And that is causing the liver to be inflamed as well as his spleen. The lifestyle change we fretted and kept waiting for the list of what nots was not even a lifestyle change for us…alcohol and drugs are dangerous for him even in the smallest of quantities. That’s it! Well alright! We definitely got that covered so bring on the twinkies:) However he even has to be careful with Tylenol and ibuprofen. His numbers went from the 1800s when they found him to 700s and once they get to a normal range he can start tapering off the steroid but the very very low dose chemo he will take for life. We had a list of questions and she answered them plus so much more. She even handed him some reading material on everything. This was his first visit with her that he wasn’t lying down but sitting up…and she noticed. He continues blood lab work drawn on a schedule that finally tapers off to every 4 weeks. She monitors everything through those results and will let us know even when he can get his flu shot which he must get but once all is normal. He did not test positive for the Epstein Barr virus which she mentioned in an earlier phone call that would have been a double hit to the liver. Instead he has what he has and as so typical of most of her cases the autoimmune hepatitis was discovered on a separate issue pre-surgery routine lab and again thankfully so. He has been making it through school days! I just keep thinking that I’ll get a call from the nurse that he is asleep in their office but he comes in strong. He is looking so much better and he even drove out to get haircuts with us! Caleigh got bangs! I will finish this when I’m more awake! I keep nodding off:) Plus I dont have the notes in front of me and I am tapering off:)
Monday September 19, 2011 4:00PM
If you really know Kevin then you remember when he was a toddler my good friend called him “Emeril” because he loved playing with Tiffany’s little tykes kitchen and has been known to ask for a blender and even a toaster oven for Christmas and be excited to get it!! (and I must add if you know me I asked her, “who is Emeril!?) So as much as it goes against me to open a cookbook for a recipe Kevin had been looking through them over the last couple of weeks helping me out with what to make! I knew when they dismissed him from the hospital and realized how much he did enjoy circling the menu choices for the next day’s meals I’d have to shed my pantry style cooking and write out ingredients AND go on that frustrating scavenger hunt up and down isles and back up and down isles….some of you call that grocery shopping but I say nay nay!!! So these were the last things he wanted that we didn’t get to…Skywalker Smoothie, TIE Fighter Ties, and tonight hopefully those Greedo’s Burritos! So I headed to the store once I realized the phone was not going to ring for me to go pick him up:) And, the nurse, who sent me an email that he hadn’t come to her yet and stated that it looked like he was going to make it through the day. (And I promise I didn’t pay her to do this!) So it does feel like a first day of school where you try to be mother if the year! And the best compliment came from Cole that they weren’t a “stinker!” Another great moment was the carpool line. I haven’t been in a high school carpool in forever since Tiffany and Cole are both drivers but today I got in that line and waited to see him standing on the curb and his English teacher (who he has like 2nd period) was with him! She walked him out and motioned me to pull over then gave me the best explanation of his make up work including copies of what she wants and when to have it done. She said she does not want him stressing over her class and it can all be done by the middle if next week easily. So pretty soon I get to go back into “fun sucker” mode and crack the whip for homework and make up work to begin. I knew he needed to get this day behind him and am so thankful for the many prayers he received for strength….he was strengthened:) Now if they could find it in their hearts to save their daddy one of the fighters!
Monday September 19, 2011
Kevin is back at school and I am missing him!!! I hated that he was home and all that happened that he went through but it has been a sweet time with him and I cannot tell you how much I miss him:) He looked great and is equipped with notes from the nurse for a pass to her anytime and to leave class early to get to the next class until his next surgeon urologist visit October 10 and hopefully he gets fully cleared. He has blood drawn tomorrow after school, and we have a follow up liver doctor appointment this Thursday down at Texas Children’s. I am praying for Him to give Kevin strength to get through this new back to school transition from Phil 4:13 “I can do all things through Christ which strengtheneth me.”
Thursday September 15, 2011
I finally remembered to ask him if I could post this picture of him playing Pentago back in my room with his daddy a couple of nights ago. He had played Caleigh me and Cole earlier and needed someone else to whoop up on! He started the medicines on Tuesday night. I feel like I took a big hit of confusion with all that but it now has settled out and all is well. Keith and I divided and conquered Oak open house Tuesday night then snuck in a date to report what the other learned:) It kills me not to get around to both boys teachers but when 2 are at one school and it’s the bell schedule open house you have no choice but divide and conquer. I battled tears here and there because everyone was so concerned for Kevin. I thought I’d be fine walking the halls of the largest school this year in the Klein district of 4,132 students knowing I would not possibly really have time to bump into anyone I really knew. But precious caring friends were out there and around every corner. Even his teachers were so understanding and some mentioned how they were praying for him. Yeah…more tears. He is doing great! Today another subway meatball sub was delivered by a different friend and this one was a footlong! I had a six inch. He finished his footlong before I ate my last veggie bite!!! We got Kevin back:) He hasn’t had an appetite for that big of one in a long long time. And at open house in his English class I saw all they had read–short stories! And I remember doing my student teaching in 9th grade English and almost every short story listed was one of my favorites. So we read together yesterday and today great short stories. He has been re-listening to the entire narnia series on cd up to this point. So why not!? I even had fun turning pages in his book and reread some favorite poems. He also took notes on his tablet while watching a short story powerpoint. Keith and Cole have been helping him get started on geometry too so our prayers again are being answered! I love the picture of Him going behind us and picking up the pieces and have been praying especially for Kevin in the overwhelming amount of missing 3 1/2 weeks of school make up work for Him to do just that. And He is and will continue until all the grades are in. And every teacher said Oak is a paperless campus so Cole will have to show him how to navigate the online teacher drop boxes to turn stuff in. What I am wishing I had now, and we see his liver doctor one week from today to consult with her all we have just been officially given and maybe she will have some of it, is just a better visual of what is going on in his body. I know the definition of hepatitis—an inflammation of the liver and his is autoimmune hep—so his own immune system is fighting his liver or liver cells and causing scarring which ultimately leads to liver failure. But like when we had the lightning/fire 2 years ago and I needed to imagine Keebler Elves all in our walls drying out the wires I am wanting an animated picture! I hear clanking swords when I look at him and think of what his body is doing. And I asked Keith what he heard and he hears nothing! I explained to him it’s like that old school house rocks animation but the “I’m just a bill” is a medieval night type figure with swords and there are good ones and bad ones just fighting away! Only I see the protective white knights of the liver on the liver because after the liver biopsy I have a clear picture right where that organ is but the immune system bad nights, like modern red ninjas, and I think they are popping out everywhere he has blood flowing?!? So someone should alert our doctor I am expecting great things next week! I do know she mentioned there will be some lifestyle changes. Who mentions that and doesn’t give an immediate list. So here we are coming up with our own. Kevin asked for a Big Mac yesterday and we joked and said especially since he hasn’t even wanted one in so long that we better get it now before we get that lifestyle change list! We speculated that of course it will be eat fresher foods. So I told Kevin the meds he is taking will encourage hunger so pick fresh. He came to me later asking if he should throw away our baby carrots since there is black stuff on them and the bag was stamped September 5th! Yes! And wash your hands!!! So we are that house where not a carb goes bad but the fruits and veggies grow fuzz! I also saw on his chemo meds to wash your hands thoroughly after touching. So I said that will be another lifestyle change. We might have to become germaphobes. Or pretend germaphobes! He is a nail biter and one time we offered after trying everything else $10.00 for each nail he would need to cut with clippers. He got his hundred dollars and has been biting ever since! But I have been noticing he is getting fingernails again. I also am having him learn what pill he takes how many and when. Then give him oral quizzes. So again…lifestyle change! We are trying to figure em out before we go so we don’t walk away all gloom and doomed! Another one is frequent lab visits. I have one picked out close to us that he can go to without missing school. We are shooting for him to return to school this Monday. After walking Oak with a different perspective I can say he is going to be worn out. The 9th grade principal and AP and staff have emailed me telling me the nurse will have a note for him to be able to have extra time to get to classes so I guess no Segway will be needed! We will cancel that order:) And lastly we have been watching alot of movies and the clear play version of The Patriot is where we are. I am feeling finally some rest and retreat! But for most of the past few weeks felt like we were that lined up militia just waiting for and taking every thing shot at us! The past day or 2 have been restful and I would like to say I heard the “Retreat!!” sounded…there is no white flag of surrender waving here but we are feeling the retreat:) Gotta love a retreat.
Tuesday September 13, 2011
The question I keep getting is how is Kevin taking this all in? Its just like his baseball pitching days when he was given the nickname “the ice on the mound!” He could have just walked 5 players and be sitting waiting for the next inning to go out again but call me or Keith over to the fence and ask could he go bowling with this kid after the game he just invited him or maybe that he was hungry so would ask what are we eating later:) Then step on the mound the next inning and strike out 3! He works like this. He takes it all in and is so calm and collective. He’s known to strike out watching pitch after pitch go by and not even swing the bat because he didn’t like any of the pitches! One game I had had it and hollered from the bleachers, “I’ll stop feeding you if you go down looking! Swing That Bat!!!” So I remind mostly myself that right now he is just looking….watching every pitch go by these doctors and nurses and tests results can throw his way. I see the Lord protecting him in all of it. And with Caleigh one upping my prayer last night at tuck in he has the entire stands on his side:) I was praying with her and mentioned how thankful I was for medicines he can take everyday for life to make his liver better and in her prayer she said she “wanted that bumped down to 3 years.” I came down and told Kevin that, and it made him laugh. Then he has his brother Cole who I watched yesterday while I was taking phone calls and lots of notes come stand by me listening and reading and whispering to me it was all going to be fine. He then whether he knew it or not went on a self appointed mission of the evening as if he were called up. Operation Distraction. At one point I couldn’t find them even in the house. He had Kevin out on the trampoline! He’s asked him everyday when he came in from school to go jump with him–smiling. And yesterday when I got out there in my best I’m-the-mother-and-I-somehow-cannot-but-speak-the-obvious tone—said he cannot be on that! He had a biopsy and can have no physical activity from that alone for 2 weeks….and I was stopped at that with, mom, we are just walking around on it he needed some outside time. And I was like well yeah. It was a great idea as long as no real jumping was gonna happen! After that Cole set him up in the study and they did some LOTRO until dinner. He played him in Pentago and just pretty much stayed by his side not letting him think much about it. Then we have Tiffany who let the record show that before we even knew anything she was coming home this weekend and of course most importantly changed her profile picture to a brother one! True dedication! When I tucked Kevin in last night we had a good good long chat. Prayer. Hugs. Tears–all on my part:) And I would say I saw in him some actual relief. A big relief now knowing what it all is. And his doctor did a perfect job last week explaining what she was looking for from the biopsy so he has had a week of Ifs and can now just know it is what it is. He likes listening to KSBJ the Christian radio station and we both know when this one song comes on we joke and say there’s your song! I will try to paste below Mandisa’s “Stronger” lyrics below:
“Hey, heard you were up all night
Thinking about how your world ain’t right
And you wonder if things will ever get better
And you’re asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
Oh, don’t hang your head
It’s gonna end
God’s right there
Even if it’s hard to see Him
I promise you that He still cares
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain’t gonna last forever
And things can only get better
This is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you …
Try and do the best you can
Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it’s gonna end
God’s right there
Even when you just can’t feel Him
I promise you that He still cares
‘Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I’m sure that He’s gonna help you get through this
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain’t gonna last forever
In time it’s gonna get better
This is gonna make you stronger”
Monday September 12, 2011
First, Kevin had a pretty good weekend. He wasn’t feeling great from the biopsy and of course what we now know officially as autoimmune hepatitis but he was coming along. I will say sometimes I see a sick little boy who looks weak and tired and skinny just not feeling his best then other times he is getting up by himself to get a drink and sitting at the table to eat! Last night for the first time in almost 3 weeks he climbed the stairs and slept in his bed! Today he got the all clear from the wonderful urologist we love and are so thankful for — that he should be ready to return to school once his liver doctor says he can. He’s the one who got Kevin on the next bus to Texas Children’s hospital to see the liver team down there because he knew something was not right with his liver:) And sure enough something is not exactly right. His liver doctor did call today after 4:30 with the news that he does have autoimmune hepatitis and that he has had it for quite some time:( So that means there is some damage–fibrosis/scarring. But the liver she said once treatment begins, tomorrow, and after time it starts healing itself from the damage if treated correctly and as long as his body accepts the treatment. She does not anticipate any problems. She got the number for our cvs and is calling the medicine in. He will take as mentioned last week at our visit with her a steroid coupled with the low dose chemotherapy Imuran. He will slowly come off the steroid but will take the Imuran for life. She is waiting on one more test from the biopsy that she said could show another thing going on with the liver that would be a double hit. She will call me tomorrow with that detail and for now it doesn’t change his course of treatment. It got foggy there too so once she said she is calling tomorrow again I stopped trying to figure it out in case it isn’t anything! Who am I kidding! But we got this:) She didn’t want to start treatment until the urologist approved it would not hinder any healing from the surgery he had almost 3 weeks ago. So by the time we finished talking his office was closed but I left a message with his answering service thinking we could talk in the morning and he called me back himself within 15 minutes! He gave the go ahead so tomorrow he will start the treatment and will be feeling better she said in a week or two. He can go to school after we see how he handles the meds and has more strength back:) We are thinking later this week and for sure early next week. He cannot participate in any physical activity for one month but after that should be able to surgery wise and A.H. (autoimmune hepatitis) wise too. She wants to visit with us again at out convenience to give us more information about it all and to see and speak with Kevin. She mentioned there will be some lifestyle changes but said we would talk of those later. Part of them are the many lab visits. They have his baseline and will watch him very closely doing labs every 2 weeks then bump it to every 4 weeks then bump it to every 8 weeks and will see him through out the process of his treatment. I did mention his headaches and she reversed the information we had on Tylenol and advil from the hospital stay. Kevin was on the pediatric floor and they said to not take Tylenol. But she said he could take Tylenol but stay away from ibuprofen especially as a recurring daily medicine. But if that is what works for his headaches then it is fine for those. We will have to ask later but she wanted him to be seen while he is having a bad headache to determine if it is a ??pressure condition build up??? I don’t know how to do that? Who will see you at the drop of a hat when you have a headache. Will ask her that. Kevin asked if she mentioned why his spleen is enlarged too and I forgot to ask that as well. I got teary eyed only when she started discussing the side effects of the meds and that meds can be toxic to your liver. But we sure do not desire the alternative…liver failure if we do not administer them:) The picture is coming together and we see God’s hand all over it. We are so thankful for so much! We know He was letting us know it was time to find this out before Kevin got any sicker. I have felt all along of His protection. I know it doesn’t seem like protection when you see the pain and all he has been through in the past 3 weeks but really he is being protected:)
Saturday September 10, 2011
Just been watching videos and resting yesterday and today. And the only call on the home phone was yesterday and of course I answer every call and it was a telemarketer:( He sees the surgeon again Monday afternoon and we are hoping to get the results of his biopsy sometime Monday too. Cole brought home Kevin’s laptop and textbooks Friday so we can start to develop a plan on make up work….when he is ready. I was so excited to see him get up and just go open the fridge and grab a Gatorade that I exclaimed, “look at you being normal!” Then realized I slipped into accidentally aggravating him:)
Thursday September 8, 2011 1:40 pm
The doctor who performed the biopsy stepped out and told us that all went well. She was able to go in where she wanted and the entire procedure was 30 minutes. We are with him while he sleeps in and out and has to stay for at least 4 hours. My phone is not getting great service which is a first for me as a Verizon person but keiths AT&T is so of course I took over his to post this but need to get it back to him so he can get back to more serious matters…words with friends! Thank you for praying. We will know results as early as tomorrow and as late as Monday.
Thursday September 8, 2011
He is having the biopsy today. The nurse called us back yesterday after we handled up on his headache and she wasn’t warm and fuzzy and understanding but said try not to give him anything else. Even when I told her she just didn’t know how horrible it was.
We are strengthened by each of your prayers and emails, texts, calls, visits and comments. We know He is protecting Kevin and has him in His perfect will. He chose to just reach down while Kevin was sitting in church and touch him starting this entire process. We know He was like…it’s time because we were thinking how else would we have ever known:) We see His hand working and have peace and strength that does surpass all understanding.
Wednesday September 7, 2011
He had a horrible night. He had little bit of a headache yesterday after the trip downtown but since he is having a biopsy tomorrow he cannot take any ibuprofen. They said and the paper said only Tylenol. Well he was already taken off that so I gave him a Dr. Pepper and a smile:) Unfortunately after midnight his headache had intensified so much. I was already trying to massage it away. So I woke up Keith and asked should I give Tylenol. The paper says Tylenol. He said yes. Then I woke him again cause all we had was extra strength Tylenol. 500 mg a pill. Kevin was taking 3 ibuprofen at 200mg a pill so I couldn’t figure out if there was a difference being so tired but Keith said give him 2. For the next 2 1/2 hours I was up and down with him trying to massage that headache away and praying and turning off any light he could see then he said the lights on the fridge were even too much so since I couldn’t find tape anywhere in the dark I stumbled on a sticky notepad and sticky noted the blue lights on the fridge, microwave and oven! Finally at 2:30 am after he begged for ibuprofen I woke up Keith! He said go ahead and give it to him. So that stuff finally worked or we have totally overdosed our kid with liver problems! (and that is a “we” we not an “I” we wether Keith remembers any of it or not!) I do know he needed codeine at the hospital yesterday and as much as we didn’t want to give it did anyway so I am calling it a kickback headache from codeine. And I get to call TCH today and see if we need to postpone the biopsy because of the meds he took. And hopefully they won’t like think we are absolute idiots and cannot follow directions. Then I have old hop-a-long Caleigh who fell out of bed (she has been sleeping in tiffanys room and not much sleeping is going on cause she comes out every morning with a new treasure!) and was hobbling along (which she has been having all sorts of clumsy falls and bumps and really dramatizing them lately even frequenting the school nurse…I want to say look I’m on to you, your fine, but at some point in the day something “distracts” her and she gets back to normal.) So this morning she hobbled and missed her bus which on any other day would have been fine had Keith’s car decided not to quit running and block my mini in (loaner mini at that mine is in the shop)! He was late for work and meetings and we were going to push the dinosaur expedition out of the driveway but he found some tool in the garage and clamped it on the battery connector that didn’t look like it was having a good life anymore and since it started just drove it to work like that and said it never sounded better! All this and Kevin is sleeping soundly…and I am so thankful!
Tuesday September 6, 2011 2:15pm
Dr. Mehta explained to us very clearly that Kevin has indications from his lab work that he could have autoimmune hepatitis. They can positively identify autoimmune hepatitis with a liver biopsy. He has one scheduled for this Thursday morning. She will read the results as early as Friday but it could be Monday. He needed blood drawn for the biopsy so we just did that before leaving the hospital. It is not 100% sure yet but IF the biopsy results prove that it is he will be treated with 2 meds first a steroid and then Imuran which is a low dose chemotherapy drug. He will take them for life. Stuff got fuzzy here but I figured we have time on the treatment front to ask more questions because he just may not have it or need the treatment. Cross that bridge when we need to. He will still be able to lead a very normal life but will be closely monitored with labs if he needs to go on the meds. She explained everything very thoroughly including what he is experiencing now which is active inflamation>;;>;;>;;next comes attacking of the liver>;;>;;>;;then scarring>;;>;;>;;then cirrhosis. (the biopsy will show how much of the previous mentioned steps he has experienced) She then stepped out to allow us to take it in then she came back in to answer questions.
Questions we asked:
~What was the chemo drug?
She even spelled out the generic of Imuran which is azathioprine
~Kevin weighed 161 pounds. He is also 5’9.8″ 🙂 Kevin asked since all he has been doing is sitting around eating you think he’d gain weight?
She said after surgery your body uses alot of calories to heal. Healing takes priority. She did point out that IF his bilirubin numbers are up after today’s labs then that can cause weight loss because of poor absorption. But the lab results in the past have been normal for that level.
~We asked her to look at the color of his belly. It has been looking yellow to us. She said it did not look yellow to her that when she first walked in she would say he is bronze:)
~Keith said not to ask this next one but I did. I asked her should we test our other 3 kids’ liver enzymes? She said no:) She said she would understand if we did but she does not encourage it.
~Of course we asked how did he get it IF this is it?
She replied that no one knows. Autoimmune diseases(?if that was the word?) are still being studied and it is not anything we did wrong or something he ate…they just know that for some reason your immune system starts turning on you and attacks different organs/glands. She named several that are familiar sounding but I don’t know how to spell:). (like lupus and hashimotos)
She reminded us we are not sure but if so it will be detected very early. And they will know more on how far its progressed after the biopsy.
He will not be able to take any medications until 2 weeks after the biopsy like Motrin and stuff like that. He did need codeine this morning after the trip there and elevator ride to the 11th floor but we did not know at that time a biopsy was so near in his future:)
~We did ask how would we have known this again IF it is autoimmune hepatitis?
She said his liver would have gotten very sick, he probably would be yellow… And that most people who come see them are caught by something else happening. So Keith chimed in saying…”So the torsion was good!” We laughed because that would be the only good thing out of that awful painful experience!
~We also asked what IF it is not autoimmune hepatitis and she said first she would expect today’s labs to be very good at all normal levels:) and basically we will talk after the biopsy results are in. There would be a lot more questions.
That’s all I can think of for now! While writing this they already called verifying our insurance for Thursday’s biopsy. I’m feeling a nap:)
Tuesday September 6, 2011
Kevin has had a pretty good long weekend. Fever free and yesterday no pain meds. This morning we head to TCH for his appointment with GI Liver doctors at 11:30. Thank you for your prayers!
Friday September 2, 2011
It was visitor day:) Kevin got such fun stuff too! Get well popcorn, Starbucks white hot chocolate, a beautiful orchid that only requires 3 ice cubes a week to keep alive (can we do it?!) and RJ Goodies treats:) He is still managing the pain but so far today no fever! That is a first since all this started! His Liver doctor phoned yesterday and said she hopes all the test results will be in so Tuesday she can put the picture together for us. So we are looking forward to a restful weekend and no doctor visits or blood draws. He is totally bummed to not be marching in tomorrow night’s first home game. Please pray that those looking at his liver blood tests will have as one friend prayed “super Nancy Drew eyes!” and that He would give them wisdom and discernment and clarity of thought.
Thursday September 1, 2011
Kevin had a good check up with the surgeon. He said Kevin is getting better just not fantastic. He wants to see him in 10 days and will not release him to return to school until then and that is pending anything the GI/Liver doctor says next week. He wants him to start an antibiotic but that too is pending being filled based on GI/Liver doctor approval. It seemed like everyone in their knew Kevin or of him. The doctor, who has performed robotics kidney surgery and whose father in law use to head TCH for 35 years, told us that of the thousands of times he has performed this surgery he has never seen anything like what happened to Kevin. So as I told Kevin he is much better off than he was one week ago! So definitely a praise!
Wednesday August 31, 2011
Last night I fell asleep after 12:30 and at 1:00am he was crying standing over me and at an 8! He said he was throwing pillows at me and hollering my name:( so I gave him 2 codeine poor guy! Had to get up by himself! I switched my head closer to him so he could bang on me with the back scratcher, and I told him to ring that bell! I grew up with 7 siblings and can sleep through a train wreck! Keith threatened to fire me from my night job! Dr. Popes nurse called and said that his liver enzymes were still elevated but a little lower than when he was in the hospital. They are faxing them to TCH for our appointment Tuesday. He has had horrible hiccups today and we googled ways to get rid of them and tried at least 13 before he fell asleep with a hiccup headache! His school principal also called to check on “her boy:)” We are both having pretty wild dreams:) But getting rest.
Tuesday August 30, 2011 11:30pm
He said I could post this:) Table for eating, playing on the laptop, and building hour long Lego star wars projects to keep his mind off the pain. He is surrounded by the basics: broom for a cane, radio to listen to KSBJ, zen garden from Aunt She-o and Uncle Ro to rake rocks but Cole has taken over:) and bamboo plant from Pastor and our church. Today was a much better day and he was able to stay put and get a lot of rest. After yesterday’s terrible horrible no good very bad day we needed it:)
Monday August 29, 2011 5:15
Today was off to a super rough start! We had a doctor’s appointment to get to and his pain was a 7 with codeine at wake up. We used the office chair to get him to the door then once at the office they had a wheelchair that he basically used as a walker since he would have had to squeeze into it but one does not squeeze after such surgery. We survived it all. They drew more blood and Dr. Pope replied when I commented on his hygiene that as long as you can breathe in the room and he is not reeking it’s good. Once you cannot then take him out back and hose him off! We needed the laugh:) tiff was able to help so much before heading back to school. Such good timing. On the way home I was driving so slowly and carefully and Kevin noticed a firetruck pass us not in an emergency and said they were all staring at me:) I said it’s either because I’m so good looking or they were shocked to see someone so young driving so slow! Either way I am complimented! I said so what do they want: me to hold up a sign saying slow driver son recovering from torsion on board! After the morning we had it’s a wonder an ambulance didn’t come get us both! I was truly thinking why are we home! But we got good information for pain and fever management and he is back settled down now and the best part we both napped:) The surgeon finally contacted us and had been following him through the TCH drs and we see him Thursday and one week from tomorrow we are back down at the TCH clinic to see the GI and hopefully get the scoop on what’s up with his liver!
Sunday August 28, 2011 4:00
I had an update written and it went away. And since then he has just had a good day in some ways as well as a bad day in others. Still managing pain and fever. We will have several appointments over the next week. But we did get home around 5 pm last night! I think he is loving it!? He asked for a make shift table to set up around him to use like the one at the hospital. So he can now use the lap top…build legos that Keith got for him and eat. We are set:) I am so thankful for the many prayers, comments, emails, texts and good information. Not to mention all the food and treats sent our way. We are blessed. I don’t have nearly as much down time and the stuff I can write down are facts like blood pressure temperature and when I gave meds.
Saturday August 27, 2011 1:15
He gets to go home!! Dr. Lo just came in and said that the GI and urologist agreed that he could go home. They want us to see Dr. Pope Monday to draw more labs and make a follow up appointment with the GI dr for one week. He is a little overwhelmed with the news but I reminded him that when Paw Paw had his liver transplant I was the one who went up intending to be hospital watch and they sent him home on my watch;) I have previous experience:) I think he is just concerned home means back to work! But I assured him he will still be a patient just at home. For now we are waiting for discharge and they said before dinner:) We will see.
Saturday August 27, 2011 10:40
Ok…I hit send real quick on the paragraph below because the team of doctors came in.
~his hematocrit levels were just a bit low
~one reason he was kept overnight was the blood was not clotting and now those numbers are better
~his liver enzyme levels are a bit higher than yesterday but not much
~ruled out all the hepatitis A B C as mentioned. Ruled out Epstein-Barr Virus aka type of mono but showed he has had it before. We never knew that and they said it is very common and people have the non full blown version all the time without knowing.
~want a urologist to check him today
~as mentioned to us yesterday they may possibly just transfer him to that team of GI doctors that visited us yesterday. And with that if urologist and GI agree he can go home and be handled as an outpatient.
~regarding his migraines they want him to be taking Motrin and not Excedrin Migraine as we’ve treated before at home because Excedrin has acetaminophen (Tylenol) and is processed in the liver. Motrin is processed through the kidney. I stopped them here and asked is that on the label?! Who remembers this in 3 days:) I will now cause I’m writing it down.
~their goal is (1)to get his liver enzymes stable and (2)for him to have better pain control. So far the last morphine was 10:30 last night. Only Tylenol at 9 this morning for migraine so far. I know I know he is not supposed to have it now but we didn’t know that then:) and (3)to complete the work up the GI doctors ordered or be treated as outpatient.
~reminded Kevin the procedure he had is one of the most painful thing a body can go through and not to be afraid to ask for meds. (no tears that time)
I called Keith to tell him all of the above hence the bullet style of writing. My ah ha moment. When the urologist saw Kevin the next morning after surgery and remembered the liver enzymes elevated it was like ok…because of that (which could be just nothing he just happened to have torsion when his liver was doing it’s everyday job) he is having extra bleeding which causes swelling which causes pain. So even though I mentioned they were 2 separate things the one actually caused the other post surgically speaking …maybe. All I know is even though I’m not at Dr. Popes office for a normal pediatric visit I can hear him saying when sometimes I ask him why about a particular issue he says it’s just dumb luck! Another thing if I can remember the wording specifically he says is…if you are hearing hoofs then don’t look for zebras! Keith reminded me that the urologist that did the surgery said if something is going on with the liver you can bleed more. Which is a clotting issue. When he saw the swelling and the bleeding (and bruising) it triggered to him(surgeon urologist) that the liver enzymes were elevated and was the cause of this. If liver enzymes weren’t elevated he would have had a much more normal recovery! Got it!!! I get it! She gets it;) So that all led us to TCH. I am slow at comprehending medical terms but getting there:)
Saturday August 27, 2011 9:00
Kevin slept for 5 hours last night! The slew of blood draws came at 7 am. (He did awaken with a migraine which is a preexisting condition.) Dr. Rose came in and talked a little more to me about his ultrasound results mentioning the spleen was enlarged which I remembered and the liver was. Keith and I both missed that yesterday and were wondering so it was good to get clarification. It was just me so I am asking how can you tell that from an ultrasound? She said it’s just like a wound on your arm when it’s inflamed and sore. We can see on the ultrasound that his liver and spleen are inflamed. That made little tears trickle and Kevin was asleep so she just sat and re explained it because the first time around I was too busy focusing on not crying that I didn’t really listen. So I asked her if she could just retell that part about the liver. (I couldn’t remember the word “inflamed” just like on ER night i couldn’t remember “torsion.”) So the sweet dr–if your allowed to refer to them that way:) sat while Kevin was sleeping and let me hear her again. And I joke about Caleigh being clueless! Then another doctor followed close behind and checked him and in passing mentioned that torsion is one of the most painful things a body can experience and yep you think an inflamed liver brought tears she brought me a paper towel:) But it’s all good. They both reassured me that the body works like this. We may never have known his body is doing just what it’s supposed to be doing when fighting an infection which is what it’s doing when things are inflamed (my reasoning) so 2 separate things are going on and one because of the other is now being thoroughly examined in case their is something that like early detection can help. Really I am putting my thoughts here to so I can keep things settled in my head. I should turn it over to “bullet point Keith” but when he is around for the next dr visits I will have him recap and I will just type:)
Friday August 26, 2011 11:45
They call him “the tan one.” Kevin already has a nick name on the floor Keith told me and it’s the tan man! We have been asked by almost everyone who walks in… So this is his skin color? He has always been my tanned one. Beautiful squishy soft skin. He is just so touchable! ( I actually checked him into doerre one day while he was there and for some reason reached over and touched his arm and instead of saying good bye get to class I said what I was thinking out loud– “squishy squishy!” I couldn’t even believe it myself but hey… What’s done is done!) I am staying the night tonight. Keith pulled a double header so will hop up in the morning. He has had a much better day. His pain levels have been 5-2 and had a headache that reached a 5 when the pain was at it’s lowest. I still as the mom doc think he just doesn’t look good. He has that look in his eyes that just says he doesn’t feel good. It is so good to see him eating and drinking more and the nurse was “psyched” when she saw him actually playing a video game. Yesterday was a very bad day. The last time the nurse popped in she gave us a heads up that the liver doctors have ordered a slew of labs for tomorrow then repeated a slew. I said more than 12? And she pulled out her paper and we looked at them and yes…the list was more than 12. Don’t even know if I’m spelling slew correctly! Keith called once he made it home with news that Kevin’s surgeon left several messages on our machine checking on him. He knew we were being transferred quickly so just wanted to check. That just made me happy:) I was having a bit of tears at dinner with Keith in the cafeteria just taking it all in. And I know my Pastor came and had us rolling with laughter and praying and am trusting Philipians 4:4-6 that he shared. But I loved that surgeon. And yesterday we both thought we don’t even know his name. So we had the nurse find it in the paper work because we think he wanted to follow up with Kevin in a week at least he said he did. I kind of felt lost and out of a loop that we weren’t really in long enough to be in the loop! So it was good to know he hadn’t forgotten Kevin:) Just so good to know:)
Friday, August 26, 2011 4:30 PM
Two liver specialists just left and updated us with the following:
~he does not have hepatitis A, B or C. However his HepB vaccine is needing a boost. There were no antibodies found in his blood.
~there still trying to figure out why the spleen is enlarged.
~examining the blood work and will do more tests tomorrow. They are looking for an infection of some type or an autoimmune type of infection because something is fighting the liver right now.
~there is a chance he will be released tomorrow it just depends on the results.
~whatever is fighting the liver could also be making the spleen enlarged.
~he has a fever of 101.1
Friday August 26, 2011 2:00PM
So far this morning my plan was a happy one. Don’t even try to park just do the valet! $11 to park in the garage $11 for valet…you choose valet. Until it’s full! And every garage around the place was too! I think I know why St. Luke’s heart hospital does so well…wanting to get to your child and it taking an hour puts some stress on your body!! But Keith will forever be my “on star!” I just dial him up and he always gets me in the right direction and sounds so calm in the entire process:) I just knew the team of doctors was meeting by 10 and I would miss it all. He was supposed to have his ultrasound at 8:30 but it was delayed until after 12. So then were the team of doctors delayed as well. He has had a pretty good day pain wise. So far he has not gotten above a 5. He was able to get a record amount of sleep–4 hours. Such a praise! He has had lots of blood drawn and we are just waiting. Happily I might add eating cookies from cookie bouquet sweet people had delivered:) his left arm was really hurting him and he kept it still most of yesterday and was told today he needed to move it around. Aka–hit the nurses station and pick out a ps2 game. So I grabbed him up Lego star wars and he is following the doctors orders and moving the hand and arm. The GI dr was in assessing him and will return since the ultrasound tech came for him. Kevin was told at 4am not to eat or drink until after the ultrasound so when he was finished there he came back to the lunch he ordered. Cheese pizza, fruit, mashed potatoes, corn and strawberry milk. He was given morphine for the pain not long ago and is gaming but I suspect he will be snoozing very soon.
Thursday August 25, 2011
We have had a crazy 24 hours. Last night while at church just sitting in the pew Kevin leaned over to me and said that his right side was hurting. I sent him out to walk it off but it became clear on the ride home that the pain had intensified. It wasn’t a matter of not taking him in but rather let’s get the kids home to dad and find out where he thinks we should head. So guessing it was appendicitis territory he said go to Tomball hospital instead of one of those quick clinics which we frequent alot. He ended up needing a procedure done in emergency surgery and all seemed fine. The surgeon even said if it weren’t midnight we’d send him home. So Keith stayed the night with him and I went home to get Cole and Caleigh out the door for school. I really was tired and practically nauseous so I called Keith and told him he gets to wait on the tag team since I knew I needed a tiny bit of sleep. Kevin had been in a lot of pain and I found out that when I joke and say I don’t do pain…I really don’t do pain! I can’t even watch someone else not doing pain. English teacher was the perfect profession for me:) I maybe got 30 minutes sleep when Keith called saying that they discovered “by chance” from his labs that his liver enzymes were elevated and after checking with the doctors at Tomball they wanted him transferred by ambulance to Texas Children’s hospital. I ended up riding in the transfer ambulance with him and we got checked in around 4 this afternoon. Keith followed behind. We have seen different doctors and they have ordered labs and will test his liver function. It could just be his enzymes were high and it was randomly found during his stay at Tomball or it could be something else. The team of doctors will meet in the morning, Friday, and then will get with us about the results. Keith stayed the night again but funny thing about riding to a hospital in an ambulance…you don’t really know where the car is parked no matter how good of directions he gave us! So me and Cole and Caleigh wandered in the halls and elevators that after hours let you shut the doors and push buttons but took you no where for almost an hour! I called, texted and emailed Keith time and time again to help! He had fallen asleep! Im thinking he must have sneaked pain meds! He had to walk to us then get us to where he parked. They probably have an app for that. I didn’t want Keith to have to leave Kevin’s side because of the action that happens in that room and sure enough the labs were being drawn and a pediatrician was attending to Kevin by the time he got back up to him. But it’s all good. I have heard what good hands he will be in at TCH but know the hands he is in that matters so much more. I appreciate all your thoughts and prayers and will probably post news here as we get updates. Hopefully like one of the doctors mentioned–once his pain is handled from the Tomball procedure most of the liver tests can be done out of the hospital. He went from pain that was off the charts to tonight when I left 3-5 but With medication. And with a temp of 100. Also as much as I want to stay I told Keith somehow I keep accidentally aggravating him! I am just over doing the mom thing on my 14 year old boy and it ain’t working! At least I recognize my faults but just can’t help myself! I even spoke with Cole about it and he said tiff would eat it up just not he or Kevin. So I will take the line of advice from Andy in the toy story movie and “back off.” So Keith took the night shift again and Kevin gets a break from me! Oh, but I’ll be back:) And I might even find time to pick up a cookie bouquet!!!
August 25, 2011 2:30am
I left Keith and Kevin all tucked in at the hospital. So what started out with Kevin whispering to me on the church pew that his right side was hurting ended up requiring emergency surgery at Tomball hospital. I cannot tell you how hard it was seeing Kevin in so much pain and being able to do nothing. Nothing but pray that is. One er nurse said the pain meds she was giving him was 10 times that of morphine and it took the pain away for a tiny bit but by the time she came back to check on him he was back at a 9. And in no time what I thought was going to be an ultrasound was escalated to surgery and of course understandably so. With what he had time was not on his side.
What I want to tell is that when I was leaned over that bed wanting to find time to pray out loud over him and seeing the pain and thinking wow…really…I’m going to pray… Pain killer is not taking an edge off of it. But even though I was interrupted here and there I did pray and had already asked him if I could ask others too and when I was talking with him before I left I told him I just couldn’t believe the pain he was in and that the meds were not helping and he looked at me and said, “nothing helped the pain until after you prayed.” Such a precious testimony and to think I almost talked myself out of praying! And I know we were praying in one accord because I saw the texts later of y’all responding and just know they were answered tonight:)
He is our shepherd and our MIT group prayed that this past Monday morning and I have to say I was calling on the shepherd again:)
It is not such a specific medical update but I wanted to wind down before getting some sleep and share how good God is! Thank you for praying! He should come home tomorrow. Beth
August 24, 2011 Wednesday after 930pm
Kevin was admitted to Tomball Hospital ER and was immediately taken back for emergency surgery for testicular torsion.