December 9, 2014

One Of Those Dates

I have been waiting for this appointment all fall! We saw Dr. Galati of Liver Specialists Of Texas. He made a great first impression with us just with the pictures and letters hanging on his wall. He had a letter to Bush (41) and a signed photo of astronaut Alan Shepherd…golfer Arnold Palmer…in other words we weren’t in Kansas anymore Toto! (Children’s waiting and exam rooms covered with Toy Story and dinosaurs! Don’t even get me telling about what was on TV in the waiting room!)

He walked in and packed a punch. He examined (Kevin said he even examined him differently…he poked and didn’t just press) and asked questions engaging all of us in the conversation. Especially wanted to hear Kevin. He had an assistant type everything that was being said. He saw that I was taking notes and after hearing all of Kevin’s past three years of medical history he gave me this word to write down: Autoimmune cholangiopathy. You could tell he just had such a working knowledge on the treatments and diagnosis of everything Kevin has or is expected to have.

He wants to actually see the slides from Kevin’s two liver biopsies in the past three years. He ordered labs to be done in the next week or two. He asked a lot of questions. Explained the alphabet we are now familiar with:) AIH PSC PBC … And added the AC autoimmune cholangiopathy. We didn’t walk away with “so this is what he has” yet. But I love that he questioned the PBC liver biopsy result as Dr. Olive did. I told him it took Dr. Olive days and talks to the pathologist at TCH before he would tell us that news. So he’s not affirming any previous diagnosis yet. His daughter goes to school with Dr. Olive’s daughter so he said he would have a talk with him.

Had I written this last night it would have been with a much more “plummeting tone!” Because when he looked at me and said get me those slides, I was horrified because in my knowledge of medical records request I thought I had! I even called last week to make sure they had received the “medical records!” So I was frustrated within. I had unrealistic expectations about the visit. I just hoped it would all be solved! To quote Caleigh in another matter: a girl can hope can’t she?!

So this morning I jumped through all the hoops to get those slides to him. We see him again January 19 which is a school holiday so no missed school for Kevin! The actual slides were never a part of the initial request I thought I had made. They said he never asks for those for the first visit. Who knew?

He asked so many questions that we didn’t know the answers to that I felt like man…I was just not prepared for this visit! I have pages and pages of information on here. But can’t remember if his mitochondrial antibody (?) is positive??? Or if the surface of Kevin’s liver is scarred?? I vaguely remember hearing this information in the past and know it has been checked and looked at but couldn’t answer. None of us could…

I am the literal queen…so I take in information differently. Keith and Kevin were fine last night on the drive back home. I was just silent. Probably perplexed and plummeted and hungry and tired. Even earlier in the day when I tried to pick up Kevin’s refill for the meds he takes everyday the pharmacy said there is a shortage on it. They gave us a dozen. That is 4 days for Kevin. I drove away wiping tears because who is ready to hear that! Even the doctor didn’t know why but reassured us there are other meds available. Our pharmacy called while we were in the waiting room saying they found some and had a tech drive over to get it for us and it would be ready for pick up soon! They said the shortage should be over by the time of his next refill.

So, everything is better today. It will all get figured out. A good friend reminded me of just that in a text yesterday: “God knows what’s going on.”

November 21, 2014

Thankful for Normal!

We heard from Kevin’s doctor tonight. The results of his biopsies from the scopes earlier this week are normal too! Thankful for normal! We can do normal! He even released the pathology results so we would have them to take to the specialist on Dec 9.

Very Thankful mama here giving thanks with a grateful heart to the Holy one…(praise song lyrics filling my heart)

November 19, 2014

We Picked Up the Glasses

“He filled the room with upper cuts!”

November 18, 2014

We arrived really early for his procedures. He ended up going back around 9:30 and the doctor was out speaking to me in an hour and a half. He said everything looked normal and that he would call with the biopsy results in a few days. The nurse filled me in on the actual details during the procedure. Apparently Kevin filled that room up with upper cuts! He was trying to punch his anathesiologist! So shocking. I’d pay to see it!

November 17, 2014

Prep day wasn’t as fun as Kevin thought it would be! Down right no good! He did great drinking the prep or as Christopher calls it “juice poop” mixture!

November 16, 2014

I asked friends and family to send notes for Kevin’s prep day and me and Caleigh towered up toilet paper rolls outside of his door with the sticky notes of prep day encouragement on it!

November 14, 2014

Monday the 17th is “prep” day for him and Tuesday the 18th is scopes. Both kinds:0

He thinks it’s funny and great that a camera is going into “those” places! I try to ask if he’s ok or has any stress about it and he just giggles and says he GETS to poop all day!!!

It’s also Christopher’s birthday so I will have to get him over to give Kevin “juice poop day” advice and help in building a tower out of toilet paper rolls!

He’s feeling great. Keeping busy what’s new?! We have sent all the medical records to the liver specialist for his appointment on Dec 9. I’m reminded over and over that we are so blessed to be on this side of early detection.

Definitely asking for more prayers for him next week that those doctors will see what they need to in the scopes:) or see nothing at all:)

November 10, 2014

He is the Little Engine that Could!

Ok…recently we hopped back into Dr. Pope’s for Kevin to be seen mostly because of headaches. In the questions before they asked how long has he been having them or how many days or something like that. I know my response was well. It’s more like when does he not have one!

The nurse checked his vision and he came back afterwards and she said it was fine! Kevin whispered that it was blurry but he memorized the line from the first time she asked it. I said Kevin! Who does that! Who has room for that kind of detail! He said he just couldn’t help it! Anyway, I knew the official vision test would be today by his eye doctor. So we got the Big 8 listed on paper what causes and what types of headaches there are and he pretty much ruled out everything but stress and migraines.

So today when the eye doctor called me back to explain Kevin’s vision I was told from a year and a half ago when he was last seen he went from normal not really needing them to today having a double astigmatism which and I quote Dr. Norcini is “the number one cause of ocular headaches today.” He put it like this. People who really cannot see and aren’t in glasses yet walk into his office and say: I can’t see a thing. I need some help here. (Basically. Huge paraphrase) These people aren’t experiencing headaches because they don’t even try. They know they can’t. On the other hand. People like Kevin are 20/25 and 20/30 they can make it work. He said he’s like the little engine that could. He’s gonna keep going until he gets it done but afterward pay the price. Isn’t that good to know!? I mean I know migraines will still most likely be around but for being a senior with early release and one class as an office aid this kid still has been carrying a load of course work with his AP class and dual credit classes and usually every paper and project seem to be due on the same day. He has been cranking out the papers! And reading, reading, reading.

I have never been so happy to hear that there is something wrong with his vision! Umm…I will admit I might have been as happy after his third grade teacher called us in for a conference and she described Kevin after she said to start writing and he would look anywhere but his paper. She said she’d get his eyes tested above anything else. I thought maybe a spanking on the way:) I was like that is complete disobedience! Complete. Ended up he had convergence insufficiency. Otherwise known as double vision. No wonder he looked up when asked to look down and write. Those words were popping off the page he just wanted to see where they were! He wore prism type glasses for correction when doing seat work and such but over time his eyes strengthened. So to be able to tell his teacher that he really wasn’t disobeying and just needed glasses did make me happy!

I love that he described it as the little engine that could. If there is an engine that can it’s Kevin. Never seen a more determined, involved kid! He loves to say: the deed is done…well think how many deeds will be done without pain!

October 22, 2014

Wednesday

Where To Begin…(I started this Oct 22 and for the record it’s Nov 4!)

Ok…how about where I left off! (Only a month ago!) I do much better if I get to the update immediately. So much has happened that I hope I can get the details down.

Not long after Dr. Olive called did we begin having questions. So many it prompted a call into their office. That prompted a visit to see him on Oct 2.

That made me happy. (Because we went from seeing her before she had her baby with her wanting to check his labs. If they weren’t where they needed to be she said she’d want an MRI. If that didn’t look like she wanted it to look she would order a biopsy. We heard from her up until the new diagnosis after the biopsy. So after “the phone call” from Dr. Olive that he spoke with the pathologist we truly walked around with a lot on our minds. And on his end. He delivered the results and answered questions but then hung up. It’s the stuff that goes through your brain for days after the hang up. So, I picked up the phone to ask anyone that answered on the 11th floor at TCH what I had questions about. I truly received an Olaf on the other end. Warm hugs and all. They understood my questions enough to recommend us squeezing in a visit to see him. One side of me said it wasn’t necessary. While the other said get in there yesterday! I hate to take time away from sicker kids. But at the same time I wanted someone to look Kevin in the eye. Examine him. Poke and press his liver. Just an all around meet and greet and then some!

Here is my recap of that time in his office:

At the October 2 visit we went in with a list of questions. He weighed 202 and is 5’10”

-where is our best source for information on this overlapping syndrome PBC. How many can overlap? Is remission a possibility? Is this lifetime/chronic?

*He printed a sheet right there with the details of PBC and explained that this is partly due to his AIH in that it is an inflammation and the inflammation is spreading around the bile ducts…

[i need to scan that in plus Keith created a spreadsheet of just numbers and meds and tests ordered that I should see if it can be inserted. I blog. He creates excel spreadsheets. #ofcourse]

-I asked since she said the images of his bile ducts were beaded could they ever get unbeaded?

*He said yes. The liver heals itself.”

-he wants him to start Budesonide the low dose steroid that brought down the GGT previously. Then in 4 weeks get labs done. Start the steroid at 9mg for two weeks then taper to 6 mg then finally to 3 mg.

{actual Budesonide dates:

Sept. 24 started 9 mg

Oct. 8 went to 6 mg

Oct. 17 heard from Dr. Olive-after Kevin’s 4 week from starting steroid labs his GGT was only down to 122 from 124 and with a scope upcoming he didn’t want steroid use to mask anything they were looking for not to mention he has had severe migraines we think from a side effect of the steroid- so he said to taper to 3 mg then after 5 days stop. So as of Oct. 21 he took the last steroid. Currently his scopes are scheduled for Nov 18. Exactly 4 weeks from stopping. They have been now scheduled three different times. The first we changed due to band schedule. The second was rescheduled due to steroid use. Now the third I call tentative because I called and wanted to be sure since Dr. Olive pointed it out to begin with, that 4 weeks is enough to get the drug out of his system. So far they said it is.}

-We asked about the flu shot he gave Kevin his and I asked if Caleigh could get the mist. He thought about it. Said no. Then once he left the exam later he popped his head back in and said he looked it up and definitely do not let her get the flu mist since it is a live vaccination and Kevin cannot live “in house” with that.

-We said he has been having migraines and has noticed some blood only in his loose stools.

*Continue with the Sumatriptan and he was concerned about the blood in the stool so he asked if Kevin had ever been scoped. We said no. He wants to do scopes. We set the date for that based on Kevin’s crazy band schedule for October 29. *actual date 11/18 at 8:00 am. Arrive at 6:45 am. *they gave us lots of papers I haven’t read yet because they aren’t due! (Blood in a loose BM with his digestive and immune stuff sends flags for all things autoimmune. Irritial Bowel. Ulcerative Colitis. And sometime blood makes the d/loose BM happen. So it’s to peek inside. Not expecting anything. But highly recommended. So better now than when he is miles away.)

-I asked what age does Texas Children’s stop seeing patients.

*He replied for someone like Kevin it would be fine to go through college.”

-I asked do any of the doctors in this clinic have a practice outside of this hospital?

*He said no. They are all affiliated with Texas Children’s even though some may have offices off site.”

-I asked did he know of anyone who we would transfer to.

He mentioned Dr. Galati.

(This part is where I know the Lord is stepping us. As we look to Him he makes our path clear. I had already put these six letters in Google: AIH PBC and Dr. Galati’a name and practice showed up! Then a friend asked me questions and gave her testimony as to how her family handles health matters. She got his name.) *we now have even a fourth confirmation of Dr. Galati’s practice being recommended to us!

We had a very good visit with Dr. Olive. He was very thorough. I wanted him to mostly lay eyeballs and hands on Kevin since he took over our doctor’s cases while she is on maternity leave. Cannot even begin to tell you how much that 40 plus minute visit and talk with him helped me.

The nurse came in to schedule his scopes and give us labs. She gave us paper work and told me these are the labs that need to be done in 4 weeks:

1. Cholesterol

2. Mitochondrial

3. IGG

4. Smooth Muscle or Actin

5. Carbohydrate Antigen

CA-19-9 Cancer screenings

6. CEA

7. GGT

8. Liver Panel

9.CBC

10. Immunoglobulin

October 15, 2014

We went to lab corp to get the labs done. They drew 4 viles full. Kevin said he never even felt the needle go in. Either she was really good or he is very use to this. It’s a good thing they gave me the list and papers. Once again at first she looked and saw only two orders. So the lesson we learned months ago is still paying off! Ask what they are seeing. Tell them if it’s different. It worked! I pulled out my chicken scratched list of initials and tests I had no idea of most of them but counted at least 10. And it took some time but she found the orders. All of them.

10/16/14

Kevin wasn’t feeling well again. He had missed most of the entire week. We had seen Dr. Pope right after the biopsy and Kevin was coughing but normal and viral or allergy ridden. So we went in to see Dr. Pope again. Since all the labs were just there from the day before’s lab draw or at least most of them he told us some of them by trying to rule out what was wrong with Kevin. He explained many of the labs but some were still not available. He joked and said other than that elevated GGT number, Kevin really looks good on paper!

{numbers from him that is in even worse chicken scratch as I tried to write while Dr. Pope spoke:

GGT: 122

Hepatic panel (ALT & AST) he said looked good

Bilirubin: 0.6

Alkaline Phosphate: 161

CBC: normal 5.4 white

Hemoglobin: fine

LDL: 79

HDL: 54

Total Cholesterol: 144

*we didn’t know to fast so Kevin had a bowl of cereal before labs and Dr. Pope said that was fine.

Gamma globulin: ? He was honest. Said he didn’t know how to read it so he never orders it:)

IGA: 167

IGM: 101 normal

CEA: 3.2 normal

Carbo Antigen: 11 (0-35 is the range)

*like I said. I wrote what I thought I heard:)

–He gave us a script for nausea medicine that should help the nausea that accompanies the migraines called Zofran or odansetron.

When we walked into Dr. Pope’s they always weigh. He weighed 197. For whatever reason after the nurse left us alone in the room I couldn’t stop the tears. I know he needs to be losing weight but it just concerned me. We can work out with a trainer all summer and drop 5 all summer and he goes two weeks and drops 5. So he’s down 15 from his highest. I dried it up. Poor Kevin. Then after Dr. Pope said the GGT was 122 I remembered it was 124 pre MRI and along with taking a steroid and piled up missing days of school I was a bit emotional. Overwhelmed. As hard as I tried not to be. The harder I tried the more I cried. Needless to say: I walked out of there wiping tears and trying to look like I wasn’t. For Kevin’s sake. But Kevin loves me. He knows I cry over stuff. Yep. He would use just that word. Stuff. And we had a lot of stuff to contemplate.

Oct. 17 Dr. Olive called with the lab results and technically we heard some of them from Dr. Pope but definitely wanted to hear Dr. Olive’s take on them. I was keeping a friends kids and let me tell you. I forgot how quickly things go crazy once you have to take a phone call! I had to get in the office and close the door to hear. They could feel the seclusion! So even though I grabbed a notebook and started writing what I thought he said I am ify on these details.

–The GGT number wasn’t that much lower. He was open to letting him stay on the steroid a bit longer. But he also said since he’s had migraines and he wants to do the scopes that he might as well taper off the medication. He said something about the GGT could wax and wain? I wrote that the “auto antibody” was elevated and is elevated in 90% of PBC patients. He added as well that Kevin’s liver is stable. Love that!

He threw out “medical study” and the drug cellcept or anthro something(!) truly should have done this update sooner. He said he didn’t take that lightly. Said he is willing to give Budesonide more time. But wants to scope but to push them back to be steroid free.

I finally asked what I knew I wanted to ask about getting a second opinion. How do you ask this. I didn’t want to imply anything. We have had nothing but the best care at Texas Children’s but Dr. Galati’s name has been brought to our attention I feel in a most divine leading. So I asked him as we were winding down the conversation what he thought about getting a second opinion. I explained that we don’t doubt this diagnosis. We just know that what he said: Kevin has a rare thing going on. So rare they don’t see it at TCH. He said he would do the exact same thing! He said he was going to even talk to Dr. Galati himself about Kevin as a colleague of his. Can you say “peace that passes all understanding!?!” I can’t even type this without happy relief tears. It’s just so good to look to Him and know He is guiding us with His eyes and instructing us in the way we should go. Relief. Peace. New plan.

The very next day I was calling Dr. Galati’s office. I creeped their website enough between office hours I pretty much answered all my questions on how to go about getting this second opinion. But it was great to get it started. We have requested Kevin’s medical records…everything that has been done to him in the past three years to be sent to their practice. They called us back with a first available appointment on Dec 9. With his scopes on Nov 18 and Thanksgiving thrown in there that date will work out just perfectly.

***Ruth…there you go! I know you will be calling. And I’m sorry in advance for texting you that I am working on the update over and over, but I appreciate every click and refresh until I did. (Not that I know that’s what you did–it’s sure what I would have done!) You made me start this blog after all! It’s been just the perfect place to tuck the notes and chicken scratch away. I don’t know how people do it that don’t write things down!**

It’s Just So Good To Know

September 23, 2014

Dr. Olive said he would call. He also said he couldn’t promise what time. But close to 6 this evening he called after speaking to the pathologist who studied Kevin’s liver biopsy with this information:

•it does looks like PBC

(Primary biliary cirrhosis)

•he admitted he didn’t have a lot of experience in this or in treating it because he just doesn’t see it often enough.

•2 autoimmune processes are going on in his liver. Autoimmune Hepatitis and PBC

(Repeat: inflammation of the liver and inflammation of the bile ducts)

•he wants him to start Budesonide again. He was on this low dose steroid medication from December to March last year and noticed it effectively lowered his GGT number then, so he thinks it’s reasonable to start this again. (I asked if he knew what that number was going into the biopsy, and he gave me the August 26 number from the labs before the procedure and it was 102.)

•he wants him to repeat labs in 4 weeks.

He explained that it is an inflammation of the bile ducts which is PBC and not hardening of the bile ducts or PSC. Last week Mam Maw asked me if either one was worse than the other or which one did I want it to be:) I said neither, actually! But this relief came over me tonight after hearing his explanation. I don’t know why. Still, neither one is optimal…but I think of something inflamed as irritated and swollen, while hardened is well hardened! His body’s immune system needs to settle down and stop turning on him! I also haven’t clicked on too much stuff so my knowledge here is just what pops out of my own head and thoughts. I know he said it’s rare. It’s rare for him and his age. I did mention to him that Kevin looks great. Feels great. Acts great. That was his chance to say well maybe we have it all wrong. But he said instead that is exactly how a liver behaves. And that it is good that we know and can have that watchful eye on him.

Oh, he’s being watched alright! I remember well being taught this verse by our Pastor years ago:

“I will instruct thee and teach thee in the way which thou shalt go: I will guide thee with mine eye. (‭Psalms‬ ‭32‬:‭8‬ KJV)” He gave a great illustration then about how much we can communicate with just our eyes and that made me then think of Big Daddy and all the instruction he could give with just a nod of his head. Our Lord wants us to look to Him. As we look His eyes guide us without ever really needing to hear a single word. He is watching us. I’m so thankful to know! Isn’t it just so good to know!

September 18, 2014

Call Me Diane…

Biopsy results expected. But none given…

I waited. Called. They weren’t available. I was upset.

(My attempt to be less wordy.)

Now for the cathartic words:

The doctor taking care of Dr. Walsh’s patients is Dr. Olive. The attendant who called me back said that he hasn’t looked at the results. Not the nurse. Not the doctor. The attendant just said the radiologist was out of town. I do not doubt this information but kind of thought that in the entire Texas Children’s hospital building and interventional radiology department there had to be someone who could read the results by now. The real problem was with me. I am as literal as the day is long. They said the results would be in 3-5 days. I was fine with that. Especially after seeing how crowded that biopsy room last week was. I felt like they were running kids through there like the double line wrapped around chick-fil-a drive-thru at lunch time. It’s mind boggling and completely disheartening to see so many kids in the hospital.

I even didn’t call until today. This morning. And not counting the weekend I actually thought I was patient giving them two more days, but honestly I felt like if I hadn’t of made the call when would “they” call? I know as Kevin would say nothing is pressing in the matter…only me. I’m pressed and stressed! And I’m a sympathizer, Dr Walsh had her baby! So happy for her but feel like if she were in the office we would have been contacted.

How does the system work? I’m just so curious. How do they keep up with all those kids? When Big Daddy was in MD Anderson I remember well them telling us that you are the best advocate for your family member. Do they know the trouble and torment we put ourselves through waiting? I’m a mind game maniac!

So I wait. Try to tell myself I’m not waiting but none the less it’s waiting. The furniture in the house is getting rearranged. And then I have to stop waiting and pretending not to wait and get on with my day. Today it just so happened that was grab Caleigh from school early to go get her cast off! No cell phones are allowed in the office where we sign them out. Of course the office manager from TCH calls me at that moment. Of course. I’m a rule follower too so it killed me to answer the phone in a no call zone. I had to. Then I’m like great, I’m now one of those people.

So now I’ve gotten an attendant and an office manager. I have the person who answers the phone and the person who is over the person who answers the phone and all I want is to speak to Dr. Walsh’s nurse or the doctor taking her patients while she is out. And both of these ladies told me it wouldn’t do any good because they don’t have the results. We actually had other questions for the nurse or doctor but once I heard it would be next Tuesday before the pathologist got back in town, well, I just couldn’t speak. I cracked. Why do we have to crack! I know we fell through the cracks! I told the office manager just that. I told her I realize Kevin’s doctor had her baby but I also know that at our last visit she wanted (and used these words) all her patients “tucked in” before going on maternity leave. We are not tucked in! And you could bet when we see her in January or February I would be telling her what has happened. She said she would speak to the doctor again between clinic visits and ask him to call me. She said to let her know if I hadn’t heard from him by morning.

Meanwhile, I am missing Keith. He’s out of town and the last few days had no phone or iPad charger because he left the charger with his laptop at the office while they did an off sight. Well, the home phone rang and I saw the number was a weird one so I answered thinking it would be the doctor. Instead I hear Keith’s voice and he calls me Diane! I’m like Keith? And he says something like he must have dialed the home number; He was trying to reach the office. So I say: well, let me hang up then so you can call Diane! I hung up. I wish I could insert a poll here to see just which way you would have taken that:) So I’m walking around thinking he is going to call me back. He never did. Not until after all the drama of my day and tears were settled. He calls and when he can tell I’m upset he actually can’t imagine why. So I might as well tell you. He hung up on me. And I was actually fine with that. I knew I needed to go unplug. I knew it was ridiculous! You know I was walking around with the woe is me attitude. Don’t hear from him in my darkest hour for days and then I hear from him…he can’t find a way to call me and yet finds a way to call Diane!? Oh, you know this just isn’t good. I knew we’d be laughing at it soon. Already are. But good grief the timing!

So we are in the cast office. I’m once again in an area where no cells signs are posted. And the doctor calls. We were close to being done. Just waiting on the school note, but I HAD to take that call. I felt so bad but I turned into one of those people. People. We need to not call those people those people. I have such a different outlook on this!

He explained the entire situation but better. He said the right things. He said yes the liver specialist pathologists (whatever their label is) are all out. He explained that he has questions about the notes from the pathologist that looked at Kevin’s biopsy and went into pretty specific details about them. He will call me next week after he has asked his questions. But he said I could walk away with knowing that he saw no new scarring or changes in the liver compared to the 2011 biopsy; his liver is working fine, functioning as it should; he feels there is no huge urgency for treatment; he wants us to take our time to make the right diagnosis. Autoimmune hepatitis and one of these two: PSC or PBC can coexist with his autoimmune disorder. And that’s where he got detailed. I was listening and understood but will wait on the specifics. I like what Kevin’s first nurse said before the biopsy last week when she accessed him. Her comment was something like basically you are a healthy young man! Praise the Lord!!

Now that was news worth fighting for! At the end of the day I think he would have never stopped and looked at Kevin at least not today. I brought it to his attention. I told Tiffany earlier I am even sick of hearing myself! But yet I look at Kevin and all he went through last week and find that strength and determination. Dr. Olive’s days are just like mine. There is so much to do that really you only can do what is due.

Made The Call

September 18, 2014

They said 3-5 days so I waited and even gave them a couple of more for good measure. Forget it. We are slammed here with Caleigh and the transition to middle school. Keith says we will make it. I say nay nay.

So at least I made the call to get the results of the biopsy he had last Tuesday. His doctor is on her maternity leave! So that is super exciting! The nurse said Dr. Olive’ (Oh•live•ay) is in the clinic today and will call me either between appointments or later this afternoon.

Waiting Still

Monday September 15, 2014

Even though tomorrow it’s a week there isn’t any news yet. We are in the “to” day. 3 “to” 5 days!

Recovery

September 10, 2014

Just a quick update. Kevin was in a lot of pain when he awakened from the biopsy yesterday. Especially his right side and shoulder. He said it felt like he just pitched an entire game! The pain subdued before leaving the hospital, but after 7 or so last night he had some unusual and unexpected bleeding at the site. We will keep him home today to keep an eye on things. Also he looked concerned and I just think he needs the rest.

He did grab some leaf samples for his 6 weeks project! That wasn’t on my radar but was good to see him out of the anesthesia fog:)

He has a note for no physical activity and is getting use to deep breathing so he said he has a “plan” for marching band this week:)

The results will not be available for 3-5 days at least so we will once again pray while we wait…

This morning I was trying to quickly get Caleigh to school early to finish her math test (pray for her transition to junior high) and fitting the French horn, back pack, lunch kit in my Mini Cooper I spilled an entire cup of coffee on (and it was a good tasting one!) her back pack and my precious mini! I did it. I quick dabbed it up with one of our many beach towels and on the way to school she said: my back pack smells like coffee. I will think of you all day:) That’s a good thing she was smiling when she said it because, people, around here I have been losing my marbles. {another blog post here entirely!}

May He be able to say the same of us…He is loving and smiling because of the sweet smells we offer Him in our time with Him each day in prayer.

Liver Biopsy

September 9, 2014

Kevin has his liver biopsy this morning at 10. We are praying for wisdom and guidance for the doctors and staff during the entire procedure. Also that He would show them through the results exactly what they need to see. We ask for complete healing if it is His will for Kevin’s liver and those pesky bile ducts! We know either way Kevin will glorify the Lord with his life.

It is a Tuesday people! He isn’t missing marching band practice…just an entire day of school….

Back to School News

August 25, 2014

We heard from Dr. Walsh for Kevin’s MRI results. He has to have a liver biopsy. They are calling to schedule it. She said the text book term for what his bile ducts look like is “beaded.” (Beads on a string) Normal bile ducts look like tubes.

She said there were definite changes old and new. These changes are consistent with Primary Sclerosing Cholangitis. He had inflammation of his liver. Since the MRI isn’t 100% she wants a biopsy for two reasons:

1- to confirm diagnosis

2- to see if there is progression in his active autoimmune

She can tell if there is scar tissue.

Random things I jotted down that she mentioned:

•Vancomiacin antibiotic she asked has he ever been on it. She has been reading about that. (Not sure if I spelled it correctly)

•she said keep the radar up for inflammatory bowel disease. And actually several others that sound like that but I didn’t write down.

[Note to self: If I haven’t heard from the DI dept I need to call them 832-826-5303 to schedule the biopsy.]

We discussed PSC somewhat. And she mentioned the next time we are in the office she would show us the images and mentioned that PSC can be slow and is chronic but it can go his entire life without any complications. But we need to be aware of it, keep an eye on it, and know he is already on all of the right treatment.

Kevin looks good. Feels good. And has the best schedule for his senior year! When I told Kevin I was crying but not really because of the news, and I told him not to take my tears as a sign of how good or bad anything was–he was like mom: you cry over everything. (And it’s back to school day here. Senior; New school for Caleigh; Two still away in college…Got Tears?) Then a little after he asked me when I do schedule the biopsy can I please schedule it on a Tuesday because that is the day marching band is off this year, and if he misses a day he doesn’t get to march in that week’s show! Really Kevin?! I will try, but I kind of think you will have some restrictions on lifting the heavy tuba/sousaphone after a biopsy but what do I know! I will try!

The Lord is answering some amazing prayers and recently my prayer life was strengthened when I was given a copy of a devotional book from a Moms in Prayer friend called Draw the Circle. Day 4 is titled “Don’t Pray Away” and key statements have stuck with me:

•”Sometimes the purpose of prayer is to get us out of circumstances, but more often than not, the purpose of prayer is to get us through them.”

•”Can our prayers change our circumstances? Absolutely! But when our circumstances don’t change, it’s often an indication that God is trying to change us. The primary purpose of prayer is not to change circumstances; the primary purpose of prayer is to change us! But either way, the chief objective remains the same: to glorify God in any and every situation.”

•”Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.” (‭John‬ ‭9‬:‭3‬ KJV)

But even more key than these reminders is knowing that He is giving Kevin exactly what He knows he needs to in turn glorify Him. He is giving it! He knows. (In other words our back to school news is not news to God!)

We will glorify Him!

So Much for Trending

August 11, 2014

Dr Walsh called. She wants to do an MRI to see what his bile ducts are doing. That GGT number escalated based on the last labs. That’s the number that shows her if the bile ducts in his liver are hardening.

Kevin’s latest labs.

GGT: 124

AST: 36

ALT: 47

That GGT level is just not where it needs to be. She wants to take a peek inside to see if what the numbers are showing line up with what his bile ducts look like and depending on those images may or may not order a biopsy. She wants to be as noninvasive as possible. And only add the low dose steroid again to his meds if absolutely needed.

I’m like….so an MRI can show what the liver bile ducts look like?! You know she has got to be so patient. I’m mostly just taking it in. I’m a repeater. And a literal idiot! When they called to actually schedule the MRI I could hardly make it through the questions: Does he have metal anywhere on his body!? Well, I have metal military fillings and I know he has fillings…I don’t know!?! Has he ever had contrast? Can he be still or will he need sedation? They actually called it an MRCP. So I asked them: what is an MRCP! They had to look it up:) See how it feels!?!

I will admit. I wasn’t ready to hear that. I wanted it to just be the nurse calling. I wanted them to say we will repeat the labs. Even though it’s not what I wanted to hear I cannot tell you how very thankful I am for His watchful eye! A lot can happen between now and the peek inside and many are praying for His will in Kevin’s life. And for that I am forever grateful.

The Trending GGT

Dr. Walsh Summer Check Up 6-17

She is expecting! She is due mid September:) That’s a fun and exciting note!

She really thought Kevin looked great! Caleigh was with us today and when Dr. Walsh asked what was Kevin’s plans for the summer his baby sister replied: eating cheese. Yep. She just said that!

You can tell this doctor is a children’s doctor at Texas Children’s because she just rolled with it adding the many benefits of cheese! On the car ride home I asked Kevin if that mortified him and he said not at all. So I was mortified! We see her for 20 minutes every 6 months and we left her with a cheese eating impression!

Oh well…could be worse!

She hopped right up after asking Kevin if he understood any of what she spoke to me about over the phone last week and went all Dr. Pope on us drawing on the examining table paper explaining PSC (Primary Sclerosing Cholangitis.) She sketched out a liver, bile ducts, gall bladder, intestine, stomach,and quite possibly an esophagus!

Anyway she explained the path of food. It travels to the stomach. Then through the intestines. At the point where the bile ducts intersect the intestine she said it stops and asks the duct (or maybe the brain) for some bile to help with fat digestion. (On a side note she mentioned that bile is what turns urine yellow and stools brown) Anyway, she said almost everything you eat has some fat…however in Kevin’s case she compared his bile ducts to his immune system. His immune system was attacking his liver. That flare for now has settled down but the bile ducts are now NOT wanting to settle down or at least that is what the elevated GGT (bile duct number) is telling her and her colleagues. So his liver is doing better. But this PSC as she explained earlier to me is what they call an overlapping syndrome. She also explained that Ursodiol increases the bile flow or pushes it out which is a medication she added back in December.

What to do. She contemplated about putting him back on a low dose steroid he was on from January to March which helped get things on the AIH (Autoimmune Hepatitis with hepatitis simply meaning inflammation of the liver) side thankfully back under control. She decided to hold off on the steroid, Buedesonide, for now and even wait until two weeks after his wisdom teeth removal surgery to repeat labs. Depending on that result she may want to start up on that steroid. She definitely wants the labs repeated every 6-12 weeks. She apologized for being anal about the labs but said since she would be out to have her baby she wanted everyone “tucked in and doing fine.” I was fine with getting labs and would have totally asked for more if she hadn’t wanted them!

So that’s the plan. Labs after camp. Note to self: We need to schedule his 6 month check later too once her calendar opens after she returns from having her baby. She said February. Unless anything needs attending…

We need to let the anesthesiologist know to check the anesthesia and pick the one least harsh on the liver. When she was drawing the picture she did say that his liver was looking great!

I asked: will steroids mask the symptoms of PSC? Her reply was no if anything it will help reduce the inflammation in the bile ducts.

I asked: Can he feel it when the bile ducts are inflamed? She replied no. She said thankfully he has been keeping his appointments and his labs have been helpful in seeing the increased number in the GGT. Because PSC is slow going. She is not worried in the least. She is watching it. Is not expecting it to progress quickly if indeed that is what he has.

I asked: When she initially put him on Ursodiol I thought it was because he was possibly leaning towards primary biliary cirrhosis because I googled what does that medicine treat:) That is when she gave us the good information that she prescribed it to help increase the bile flow…(I think I knew it was for the GGT but that’s as far as it got)

He was 5’10 and 1/2″

So I think he grew a half inch. But he couldn’t tell me:)

All in all it was a very good visit. He is being watched and labs will be done frequently enough to see the trending GGT. (Maybe we should start a hashtag on that! I think twitter when I hear trending anyway!)

#GGTprayitdown!

Clicking

Stink:( I googled it. I call this update: if you give a mom a mouse she’s gonna google and click…this link seemed legit. I clicked my way through each step. Not gonna lie. Really wish I hadn’t. Where did it even come from. I had all kinds of explanations in my head. Talked about them with some of you! PSC–what!? Have they seen the kid they are even saying this about!!! There is just no way this is the next thing…he looks great. Seems to be feeling great. But I really cannot speak for those bile ducts…lol!

For the record he isn’t officially diagnosed with this yet:) so am drying up the sobs and trusting Him! And I will be ahead of myself at Tuesday afternoon’s appointment.

And pray his GGT number lower! And wisdom for Dr. Walsh and her “liver colleagues”…

The link I clicked away on:

http://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/basics/definition/con-20029446

June 13, 2014

Still sitting

Dr. Walsh called immediately after Kevin got the pie in the face today at VBS for being the mystery man and stealing prizes from the children!

His GGT was down to 96 from 110 so she said that is good news but it is still not where it needs to be.

The Anca Blood test she ordered was a marker for what she mentioned is called Primary Scolosing Colongitis: PSC (Haven’t looked it up just spelled it like it sounded!) She said it was an Over Lapping Syndrome. She isn’t completely diagnosing him with this yet but after consulting with her liver colleagues it is where they think he is headed. She said it cannot be totally confirmed without more imaging and another biopsy. She said it is too early for that yet but will repeat labs in a month and keep him on the current medications (Ursodiol and Azathioprine) She wanted to see more of a trend also in that GGT number. She actually said there is nothing that can be done about PSC anyway. We see her next week so will probably have plenty of questions on that front.

I asked: Can this possibly just be his initial autoimmune hepatitis just flaring itself. She replied: no because the AST and ALT numbers would be up as well. So it would need to be all three for that to be the case. (GGT ALT and AST)

I also asked: how does an increased GGT number have anything to do with weight. (During a previous call they mentioned he needed to lose some weight) She replied: a high GGT can be because of fat deposition in the liver. To that Kevin said: so, you calling me fat!:) lol!

I told her I completely emptied our pantry. Only put back worthy things. I said he would have to leave the house to find anything really unworthy:) He is also working out with a trainer in our fitness center in our neighborhood. So he is on an excellent path on that front. We think he has always looked great anyway!

He is very active…almost too active! The band auditions were recently posted for next year’s band placement, and he made the top band first chair tuba!!!!! It’s called Wind Ensemble. He was so cute when he got that news. He said, “I’m gonna be honest with you; I was a little surprised when I saw my name there!” I’m not so much surprised as I am SCARED! That band is intense! He takes the ACT in the morning, then gets to play in a showcase baseball tournament up in Tomball where college scouts will be present. So we are sitting, praying for healing in Kevin’s liver, and direction and guidance for his doctors and for his senior year and exact college placement. I love what more than one person has told me about Kevin: God has big plans for his life…I agree! We will keep praying He will use him for whatever purpose He has planned, and that He will reveal to us just enough to help keep him centered.

May 27, 2014

Sit

His labs were Monday, May 12. MONDAY MAY 19 I left a message with one nurse at Dr. Walsh’s office. I needed the results from labs as well as info for oral surgeon. (Kevin’s 3 wisdom teeth are scheduled to be surgically removed June 19) Dr. Walsh called us herself Tuesday the 20th. Note to self is call and tell the nurses we had the labs done so they can be watching for them. I think I call too much–not so.

She gave me these results:

AST same & ALT same but …

GGT 110 (!)–this was 38-45-40 in labs past. Dr Walsh said repeat in two weeks. (Which is actually next week) She put orders in at Labcorp. But also mentioned he could be working on another liver disease. Or fighting something viral. This is a phone conversation so I could cry pretty much unnoticed!

On Jan 2 of this year his GGT was up to 145 so she added Ursodiol to be taken twice a day along with the current low dose chemotherapy treatment he has been on since diagnosis in September 2011–Azathioprine. And I was hoping we could drop meds or at least one of them:) But I was for sure hoping that GGT was lowered. Not creeping back up! She said he needs to lose weight and take the meds everyday. We recently took his reminder off of our phones and had him take this over so even though we keep a close eye on it, it is his job. I told her this with my voice cracking because I had to ask if inconsistent taking of the daily meds could give us this number. She said it could but they would retest and can check those levels so wait and see then. Kevin does a good job remembering it’s me that is having the tough time letting go of that control. (Not to mention trying to find something easy to blame this on!)

Kevin is fine hearing the numbers, me?–not so much! But I don’t walk around with them long at all before I am comforted by Him. And hold on for a plug for Wednesday night prayer meeting: I wanted to put out an APB! Text. Email. Let my praying friends pray for that GGT number. I still am but in quietness and strength I am letting it sit with me. I didn’t have it in me but it was like he was telling me to sit on this a while. Those I immediately had contact with I shared but just felt the APB blitz could wait. He impressed that on me I know because when we got to church Wednesday night I am floored by His presence. (and it’s our first service that we didn’t have AWANA before so it’s a nice relaxing arrival:) and we even had guests visiting from West Coast Baptist College so it was a fun almost summer feel! Pastor let the group take over most of the service but still got up and said he would keep it short…and in that next 15 minutes the verses he led us to read JUMPED off the pages of scripture and into my heart. It was in Ruth too. Great book. Easy to read and adore. One I think I would say nope: nothing gonna be there for me. I zapped it through my mind thinking that then turned to the passage. But I heard Pastor reading them before I could even find them and things in my heart started spinning it all together. My mental conversation with myself. “Wait. I’m turning to Ruth 3:18. I know those chapters. Love them! Sit. Sit still?! He is telling me to sit still…” Then I found them:

Passages he referred to from Ruth and Isaiah:

“Then said she, Sit still, my daughter, until thou know how the matter will fall: for the man will not be in rest, until he have finished the thing this day. (Ruth 3:18 KJV)

For the Egyptians shall help in vain, and to no purpose: therefore have I cried concerning this, Their strength is to sit still.

For thus saith the Lord God, the Holy One of Israel; In returning and rest shall ye be saved; in quietness and in confidence shall be your strength: and ye would not. (Isaiah 30:7, 15 KJV)”

Absolutely comforting words. I was overwhelmed with this confirmation to sit. And may I add…sit until I know how the matter will fall…..smiles….smiles….smiles! I know He knows me but people HE KNOWS ME!

So, yes, I have been sitting with this. And I am asking all who read this obscure page on Kevin will pray while we sit! Pray specifically for his GGT number to be lowered in the next labs if it’s His will. Kevin is coughing and feels horrible and even missed school Thursday and Friday last week (which we surprised Keith with a birthday bay house Memorial Day unplugging so we all got to come instead of trickle in) but maybe his body is fighting something viral. We saw Dr. Pope Thursday. I told him the GGT number. He added of course the kid who has what no one has hardly heard of has his number going up! And to basically wait for the next numbers. Again I hear from both Popes in my life to sit & wait. Pray for that number! But also for direction if the number hasn’t changed that the doctors will have wisdom for the best method of healing his liver or diagnosing what else could be happening. Sit and pray with me while we wait…

March 20, 2014

Nurse Tiffany called today with his numbers. Kevin’s GGT is still slightly elevated but down from the last time. It was at a 40. So he went 40-44-38 the last three labs. They are letting him go 8 weeks before drawing them again. So the week of May 5-9.

March 17, 2014

We went to have his labs done in Tomball at the Quest there again. Things have settled down somewhat so we could stay close to home. That means he didn’t miss school but hopped up there after school. He even drove himself there and met me! We were in and out and he could hop back up for his band sectionals and I could grab Caleigh after school:) (beats that commute to Texas Children’s anyway!)

March 4, 2014

Got the numbers call twice today. First they called and said lower his steroid since his GGT was 44. It was slightly elevated but not too much. Then I reminded them he was already on the lowest of the taper down. So was taking 3 mg of the 9mg prescribed steroid from the end of December. So she said stay on that plan. Then called back after speaking to the doctor and said she wants him off the steroid. Horray for that especially since he was leaving for Disney World with the band and that meant less medicine bottles to send with them!

February 22, 2014

After a long break from baseball due to band and then basketball commitments Kevin was back on the mound tonight! Pastor Caleb got some great shots of him and I will upload them here soon. He had a great game. Got the win. I loved just being in this moment. Loved seeing him on the mound just doing what he likes to do–enjoying being there. It was no big deal really anymore to me if we won or what he threw. It was just wonderful seeing him loving where he was. He threw with power. I am forever thankful for that moment. Thankful for his continued strength. Thankful for his joy.

Kevin had been at an Impact Field Day having a blast with the teens then mentioned that he had a game later to his Youth Pastor. He showed up in New Caney to support Kevin. I was too cold to get up and snap a photo. Gotta love our YP for actually capturing this moment I have in my head!

February 19, 2014

We got the results from Kevin’s tests Monday today. Although nothing on her end regarding why he was lightheaded she actually wants him to see his PCP for that. He made it through school today so we will just see. It could be nothing.

His ultrasound showed a minimal or slightly enlarged spleen. Jocelyn is the nurse I spoke with this afternoon who said Dr. Walsh is not too concerned about the spleen at this time but will continue to monitor it. She also gave me his numbers:

ALT: 13

AST: 17

GGT: 38

He does get to drop another steroid so that puts him only at 3 mg. He stays at that until after the next labs in two weeks so March 3. (I need to call a day in advance to let them know which lab we will go to)

I wish I could say we know why his spleen is hurting but at least they are comfortable with what they saw. He will be great at determining what part of his innards are what since he has pretty much experienced all things digestive:) And I think I told her we would just keep trucking through it even though clearly I am doing none of the trucking! It’s all Kevin! That’s a “he-we!” And where did this trucking line come from anyway…

February 17, 2014

Kevin had another ultrasound done today. It was an easy go traffic wise because it was Presidents Day! No one on the Houston roads. We had a super great guy perform this ultrasound. Kevin responded after that he used really big words and had a deep voice. He needed this one since Dr. Walsh wanted to see what could be causing his side pain. The technician said nothing looked too scary.

February 5, 2014

What is up with Kevin? He has not felt great at all. Is actually really hurting. Not sleeping well. It was time for labs on Monday so down to TCH we went. To get the specific orders in our hands none of this quest only seeing so many and getting numbers and not getting numbers this way. At least until things settle down.

Maybe from the liver prospective they have settled down based on this weeks levels. Jocelyn the other nurse for Dr. Walsh called us back today. She said his levels are improving.

ALT: 9

AST: 16

GGT: 38 (it was at 147–normal is 9-31)

So with those numbers she still wants him to continue Azathioprine and Ursodiol but he can start to taper off the steroid Buedesonide from 9mg to 6mg beginning today. And she wants to repeat labs on the 17th. We have an appointment later today with Dr. Pope. Hopefully he will have some insight as to why he is walking around hurting. Especially his left side. Mostly stomach maybe intestine. What do I know?

I am very thankful his levels are returning to normal. Just a little concerned he doesn’t feel as normal as his levels are though:)

*saw Dr. Pope–he examined Kevin and as Kevin pointed to where his pain was Dr. Pope pinpointed that as his spleen. Since tests were just done he gave an explanation as to why nothing should be rerun at this moment but to monitor it. Once Dr. Walsh’s office touched bases with us about today’s PCP visit she had us schedule an ultrasound for the 17th. Not sure when she touched bases but it was about a week after seeing Dr. Pope. I had called them. They never returned my call. I assumed it was because they didn’t need to tell me anything. Actually, the message I left wasn’t delivered or just lost. So once they saw he was still hurting. Saw Dr. Pope. They then scheduled the ultrasound. Always follow up.

January 3, 2014

I totally saw this on a friend’s Facebook page and just had this image in my head all week. It is striking how much it pictures how much He loves us through His word! He is the living word. He is The Word:) We are loved.

Jan 2 cont…

He drank water from the rice field!

Tonight I had a “he drank water from the rice field!” moment. Or almost. And could still?? Once Mam Maw blurted this out during an MDAnderson doctor visit. She just knew it would help them with all Big B was dealing with. Mam Maw I don’t blame you!

I walked in tonight and saw Kevin drinking a Fresca. He loves flavored beverages. I was like. You are drinking Fresca? Doesn’t that have grapefruit juice in it? He’s like. I don’t know. So we picked it up and read the can. Yep. Grapefruit juice. Which Keith and Kevin said in passing it only reduces the effectiveness of the medicine. Boy oh boy. Had to fight tears. Enough came out that kev asked if I was ok and Caleigh sat beside me with her light up Lego set and we built until it was all better. But I wanted to call the doctor and scream: he’s drinking Fresca…funny. But not. Kevin said he wouldn’t drink it anymore and he’s maybe only had two. But he said maybe…:) and I said I wasn’t going to think about it:)

January 2, 2014

“Something is Going On”

Dr. Walsh called with the results of the ultrasound and the latest labs.

She said the ultrasound showed a smooth liver and no abnormalities. She said the spleen was slightly enlarged but not as much compared to the last images two years ago.

The lab that measures his dosage showed that his body is doing exactly what it should be with the dose he is taking. So he does not need an increase. She will check this again in about two to three months. (See previous explanation in post before this about PROMETHEUS® Thiopurine Metabolites)

However she did say “something is going on.” His bile duct number, GGT, and liver numbers, ALT AST, have bumped. I had my paper out w the initials ready to write exactly how much they bumped when she said she wanted to start him on Ursodiol today. He takes it twice a day. Along with everything else he is currently taking. She is always so nice and asking how he is feeling. Tell him she says hi. And to enjoy his break. He has been struggling with acid reflux / heartburn. She said it was a side effect of the steroid. I said he had been reading the paper it came with:) She replied “smart kid.” He is:) So she added another prescription to help with that just for as long as he is on the steroids.

She also wants to repeat the labs in a month. Note to self: go to TCH 11 th floor. Ask for Tiffany. She will have the stickers. Then head to the 3 rd floor for labs. After Feb 1. If the labs aren’t better then another biopsy may be needed.

I don’t know what to think so I won’t yet…I am ever so thankful for his doctors, nurses, TCH, lab people… Am blessed to have such a caring savior to keep His eye on Kevin with the wisdom He has given them all.