Dr. Galati visit December 30, 2015

“Chasing the Numbers”

Kevin had an MRI on Christmas Eve. And the last set of labs was over thanksgiving. We saw Dr. Galati today and the first thing he said was when Kevin’s labs come over he gets a pain in his left eye!

He said the MRI results were good. No new issues. So that’s a praise!

He questioned him in areas of his general well being, like day to day fatigue and bowels, course load…

He also really wanted to be sure Kevin is taking his medications properly. He wants another set of labs and will decide what to do with Kevin early next week. He wants to think about it and listed to us these options:

•stay the course which is keep doing exactly what he is doing

•increase steroid and immunosuppressant

•change steroid and immunosuppressant (thinking about putting him back on prednisone. And/ or possibly changing azathioprine to cellcept

All in all he said he is “chasing the numbers.”

Please pray for specific wisdom and guidance for Dr. Galati over the next few days to make the right decision for Kevin’s treatment based on today’s visit and next labs.

Thanksgiving labs

The numbers are elevated and specifically concerning is the elevated bilirubin at 3.3.

July 22, 2015

I was waiting for this appointment with what I call “holy anticipation!” I hadn’t heard from the patient portal, and we had already been in contact so much over the medication that I didn’t mention labs. I knew it took two weeks for one of them, and I knew we were seeing him soon, so I just didn’t think I needed to mention it. But maybe should of. Because yet again. Who knew? Who knew that the labs in other states do not send the results without asking?? I mean Kevin walked in with paper copies of the “orders” and I even have a copy of the orders in case somewhere along the road trip his got lost. So now we really know nothing more about how the new dosage levels are working with his system but will soon enough.

Kevin has lost some weight. That’s a good thing. He hasn’t felt great and has had a decreased appetite so when relaying this to Dr. Galati he wasn’t too concerned. Kevin could pick something up easily and feel this way and eating wrong which was part of the picture due to road trip just is what it is.

The big thing besides getting to walk across the sky bridge and visit Paul was fielding the doctor’s questions about the upcoming men’s hike. I already had Cole and Caleigh since we visited Paul and was glad Cole could field the questions we were peppered with about the drinking water and all questions hike-wise. Part of me I guess was wanting him to say something like you can’t go on this hike! But he’s been hiking 40 years and even went off on some of his hiking stories. He was relieved to know Kevin would be in a group with experienced hikers and with a definite plan. He reminded me that most accidents that happen are due to uneducated and unprepared hikers. So, I guess I will not stress this. Kevin had me leaning on the side of stress because when he returned from the congress he simply said if he felt like he did then he wouldn’t go. So…I got it honest. But he is feeling great now.

We are keeping everything as it is for now since we are waiting on the labs. I do know they had to start a new patient portal and there were new faces in the office so there has been some transitioning just as a normal practice grows and adjusts to new technology. We did notice there were iMacs on the wall! He mentioned this at the last visit. He was awarded a grant for them and can face time Kevin or Keith…pretty cool. And what peace for me with Kevin in TN he said we could be in the office and face time Kevin:)

For now, waiting on labs and he we set an appointment for January over the break.

July 6, 2015

The Sargents dropped Kevin off at the labcorp in Knoxville and as best we could tell it went well. They waited at a chick fil a so its a win win as Christopher would say! He found his lab and a chick fil a!!!

July 3, 2015

Kevin needed labs 2 weeks before his July 22 visit so even though we tried to fit it in earlier we just didn’t get to. So got all the way to the lab. It was closed. 4th of July on Friday the 3rd. Who knew. So with him leaving for Youth Congress on the 4th he got to take his orders and find the lab he will use all next year anyway. So, a field trip with the teens and Sargents on the way to Powell:)

May 13, 2015

Dr. Galati visit. I recorded this one! Well voice recorded. He asked these questions:

When did Kevin take prednisone? How long?

August 2011 for 6 months

Why did they take him off?

We replied because his numbers were so good! He went a year or so with such good numbers. Of course he was still on azathioprine.

When did he start taking Budesonide? How long? Why did he stop?

He was on them from Dr. Walsh from about December 2013. He came off them for scopes all that fall of 2014. We transferred over to this practice in December 2014. Right before our spring break to Alaska Dr. Galati noticed at that March 3 visit (?date) that his numbers slipped back up a bit so he wanted him to add it.

When he started the visit he asked how Kevin felt, and this particular time he really had struggled with migraines. So Dr. Galati really “wondered” out loud. He wondered if the headaches could be from the steroids. We mentioned that Kevin has had migraines as far back as elementary school we remember canceling private lessons and missing baseball games due to bad headaches. We had seen Dr. Pope even about this.

Dr. Galati said the numbers have come down a small amount but not giant. He mentioned there may be some room to adjust the azathioprine. Like increase it a little bit. It’s not a one dose fits all kind of drug. It’s based on how Kevin’s body genetically processes the medicine.

He asked him what he wants to study. Kevin answered that he wants to be a pastor. (I personally will never forget this moment. Dr. Galati was examining him and listening to his chest and back and having him take deep breaths but when Kevin answered that, the doctor, to me, glanced over at me and had an expression of how proud I must be kind of look ??:)… It’s hard to explain but it was a good look. And we’ve gotten crazy looks and responses when he shares his major. So it was a blessing to not get a worldly response sitting in a medical office! That’s mom point of view. MPV)

He challenged him and said he did NOT want him to get up there and put on the freshman 20! I always heard freshman 15… So it’s increased 5 pounds!

He drilled us on the college:

What kind of dorm?

Can you cook for yourself?

Will he have a meal plan?

Is it a M-F with weekends off?

*We were honest. We had visited the school last summer. Kevin wasn’t as diet restricted as he is now. But this man wanted answers! {so much so that I called the school the next day to find out all this so the next visit I was ready for him!}

He discussed the problems with industrial food:)

•high in salt

•high in fat

•high in sugar

Reminded Kevin how tough. Tough. Tough. It will be. He compared it to a feeding frenzy! I threw out there is a salad bar! Kevin already informed me earlier that week that salad is not DINNER. Shared that thought with him. It’s funny but I could tell he was very concerned about what will Kevin eat!!! More so than I was! I actually hadn’t gotten there yet mentally! We have all summer:)

I loved his descriptions of what to stay away from! Like any sort of a pasta casserole…it’s super chalked with fat and calories. Instead stock up on vegetables and if they have a steak or pork chop even a hamburger without the roll baked chicken or pasta with olive oil and pepper. Fish baked over fried. Any thing is better than fried or battered. Grilled shrimp over popcorn shrimp.

Avoid the carbohydrates: breads cakes cookies

Anything casserole with breadcrumbs. He called that just a mess. ( and I thought Panko was healthy! Ssshhhhh not gonna tell him that!)

He related that earlier in his career he took care of all the pediatric liver transplant patients. Even though Kevin is an adult he reminded him he is still going to need some coaching.

He really opened up and shared the horror for all parents sending kids away to college is the same when it comes to a certain level of what are they doing and not doing. But he did remind Kevin that not all the other kids have this problem. He also reminded me not to drive him crazy…asking did he take his meds. (how did he know that was a struggle two years ago. Keith made me turn off my reminder alarm of Weird Al just eat it…(!) to remind me to remind Kevin! By that time it had been two years. Keith said he needs this responsibility so he can be ready to go away.) So I’m allowed to ask every once and a while the doctor said and Kevin should communicate some of that without our asking especially seeing that his refills are up to date and his blood work on schedule. Absolutely love that this was in the conversation! Absolutely!!!

He wants him to increase his azathioprine so from 3 pills to 4 which is 150 mg to 200 mg. The current level is “low normal” for the amount of drug in his system. I asked him if he was ok with the current numbers and he replied it’s not that he’s ok or not ok he is trying to figure out where Kevin lives best. He wants to see him before he leaves for college. So mid July and he wants a Prometheus and labs 2 weeks before that.

The nurse said to stay with local pharmacy for prescriptions because of how they will be playing with the dosage. {insert here the insane amount of times cvs and their office had to communicate to get the amount of pills correct. They just struggled here and who knows why. Something about the way it’s put in the system but let’s just say don’t drive away from the pharmacy or walk away from that counter until you open the bag, check the script, and count the pills. At one point they had only given him 30. I don’t do numbers but I know that isn’t enough or equal if he is taking 4 a day! Patience is the virtue here. It all got sorted out.}

March 13, 2015

An Enlarged Gallbladder

We are finishing up Spring Break in Alaska! Skiing at Alyeska and visiting old favorites remembering our life here a decade ago! We heard from Kevin’s NP about the ultrasound results from the pain he was experiencing last week. She said he has an enlarged gallbladder. She and Dr. Galati discussed this and after checking on his current condition of which he is pain free and has been all week they said they will be keeping an eye on it. His thiopurine levels are good she said and that means he is metabolizing the medications as he is supposed to. With that, she said his numbers are starting to respond to the treatment with these levels:

AST: 157 down significantly from 294

ALT: 185

GGT: 200

My note actually one of the three is lower but it’s early yet…definitely will keep a close eye on these with labs every 7-10 days.

Kevin has only experienced “self-inflicted pain” from “biting it” on the slopes snowboarding! They are loving every minute. Even the wipe outs!

Praise Update

March 6, 2015

Thank you for praying Kevin through yesterday. He started getting his “color back” last night about mid-evening. He even went to school this morning:) He is being carefully monitored. He has labs today and actually has weekly labs for now. 

No real answers but definitely peace with a thankful heart and will give God the praise here! I’m going with we prayed that pain away!

He Looks Uncomfortable

March 5, 2015

2:30 pm

They got him back quickly. Performed an ultrasound. The technician didn’t see anything obvious. The NP spoke to us and examined Kevin. If the pain worsens or any more symptoms arise then we go to the ER. So no real news on why the pain:( He is still about the same. We will keep a close eye on him and wait for official news. 

10:30 am

Please pray for Kevin this morning. He was experiencing abnormal pain around his liver, went to the school nurse, they sent him home and his liver doctor wants to see him immediately downtown for an ultrasound. They may admit him if they see something on the image they don’t like. He was just “summoned” to this doctor Tuesday afternoon after his recent lab work showed extremely elevated liver enzymes and was put on a low dose long term steroid treatment to try to get his immune system suppressed. 

We would greatly appreciate your prayers at this time. Pray for ease of pain for Kevin, safe travel downtown, wisdom and knowledge for the ultrasound technician and doctors looking at the images, and for complete peace about this situation.

A Walk Through the Numbers

March 3, 2015

We have had three official sets of labs done for Dr. Galati and the last one being just last Friday the 27 of February. I did call them and ask for the January 28 lab numbers to be put in the portal because we just had the next months labs and hadn’t seen the  previous ones. So Friday I saw these numbers from Jan 28 lab draw:

ALT: 87

AST: 87

GGT:162 (Dec 18 GGT was 156)

ACTIN: 98 smooth muscle (first mention and brought to our attention. I really never kept up with this one. This indicates the immune system is “turned on” highly active. It needs to be suppressed.)

Today we received a phone call from his Nurse Practitioner that Dr. Galati wanted her to follow up with the lab results and could we come in Thursday? I mentioned he has missed two days of school and could he be seen today–and it happened! She fit us in at 2:30. Keith made the trip down with us too. So here are the numbers she presented:

ALT: 184

AST: 294

GGT: 182

So she took his complete history. I actually had several copies of Keith’s spread sheet which is extremely helpful when trying to answer all the questions about when did he start this, and why did he stop that, and wasn’t his numbers normal when he first came here? I was able to hand her a copy, and we walked through the numbers. She was debating what to do. Took it all in. Hopped out to ask Dr. Galati himself and then they both popped in:)

He is just so impressive. He looked at Kevin and started explaining and asking questions then determined to put him back on steroids: buedsonide at 9 mg for a while. He thinks this is his bodies reaction to being off the steroid treatment since October. (To have his scopes) He thinks he needs to be on them long term.

He wants labs every week and his NP will follow up with us. We didn’t need to make an appointment since she will be in touch after seeing the next couple of lab results.

Again he was quick to remind Kevin to jump on any infection, sore throat, unusual symptom. He said we are a hysterical phone call away!

I asked about the overlap syndrome that sent us to him and he said it still has signs of PBC but it will still be treated like AIH.(Autoimmune Hepatitis)…which is actually showing itself strong now.

So we debated since he hasn’t felt well for 4 days was it something viral going on. Instead of waiting and repeating labs they both agreed to start steroids. We discussed that the last Budesonide treatment he suffered migraines. He did agree that this could be a side effect, so Kevin will need to be on top of life! Eating the restricted diet he was put on since our last visit of a 2 gram sodium diet and 30 grams of fiber, being consistent on sleeping and eating, and staying hydrated. Being mindful of the migraine triggers…

I am just so happy that they are on this! I remember having a conversation with the office manager when the medical records were not getting to them and asking does anyone there walk around with Kevin on their mind or in their heart. My heart is happy. Yes indeed they are keeping close tabs on him!

In the lobby before going back we watched a video of him speaking to his patients. There was such good information of everything I wanted to know it was like he made it just for me! How the office works, when to call, where to get good information… Just so informative! Never have I sat in a waiting room and been so informed!

I am very thankful for this clinic. I also saw that he is everywhere. He is on Facebook, Twitter, Instagram, You Tube, he has a blog, website, and a Your Health First radio program every Sunday night. We are supported at every turn. 

Kevin has embraced the new eating, not eating out, and has even started P90X with great friends! I mentioned that we forgot to tell the doctor about P90 and Keith thought I said Kevin was peeing everywhere so we had a good laugh about that! No, he isn’t peeing everywhere but is exercising the P90X way…good grief Keith is old! 

I am bummed that his numbers are going crazy though. So bummed. But trusting and so thankful that He guided us to Dr. Galati and the Liver Specialists of Texas. So thankful for a plan. So thankful for His guidance. We may have walked through the numbers yet again today but He knows the numbers and why He is allowing Kevin to walk through this. Continuing to trust Him through it all. 

February 11, 2015

Clean Up On Aisle Nine

That’s my take on this! Everybody in the store currently on aisle nine knows they are on aisle nine. And when the pickle jar drops out of someone’s hands everyone on aisle nine heard it and is stepping around it. Completely in the know. Except the person who needs to clean up the mess. And then You hear it: Clean Up On Aisle Nine! Blaring over the speaker. If you needed something off that aisle buddy you missed it. You’re not going anywhere near it now! I am that clean up! I felt like that after reading the dietary clarification below from Dr. Galati. I feel like after calling and calling to get clarification they went ahead and got on the loud speaker! Only this time saying: Attention All Liver Patients. Herein do we proclaim you have to eat this way! I claim it. I own that. Hopefully not every patient in his office knows why the proclamation was set forth! But when you don’t know…you DONT KNOW:) (That’s one for you Cole)

And when I start to explain this “clean up” you get the I don’t know what you’re talking about look, the I wouldn’t even know where to begin face, the glad it’s you and not me attitude. Hence, step away from the glass, the aisle, the entire aisle nine! It stinks:)

Thankfully we are supported by wonderful faithful friends who even before the proclamation was issued “officially” today have sent me pictures of food and doable recipes followed up with conversations answering questions for me like so what is a milligram? And how much is a 2 gram sodium diet? What exactly has fiber? We have a long way to go but we can do this!

And you know you’ve been there. Walking around. Hearing people talk about what they can and cannot eat. If you were me. You just listen but walk away. Now we are the ones who can’t walk away. So proud of Kevin. He may single handedly (I would say single liverly…) get it(?) may change many lives around him for the better just by eating better.

I use to say I never got that memo. How does everyone know how to eat what!? Well, we got the memo! I will paste it below:)

If you are reading this then you know me personally and we are open to recipes with high fiber and low sodium! You know how to reach me if you know something. Get in touch…I need help cleaning up aisle nine!

Here It Is:

Heard from Kevin’s dr today about his dietary expectations:

“Ms. Troutman

I hope this answer many of your questions going forwarded until you follow up in the office and thank you for your patience.

LOG NOTE

Date: 02/11/2015 01:52 PM

Patient: Troutman, Kevin DOB: 06/27/1997

Author: Galati, Joseph S

Sign Off Date: 02/11/2015 01:53 PM

Signed Off By: Galati, Joseph S

____________________________

For all of our patients with any sort of liver disease, especially those that may be taking immunosuppression, the basic guidelines should be followed:

1. We want all of our patients to maintain a low sodium diet, consuming no more than 2000 mg of sodium and her diet daily.

2. There needs to be the avoidance of process foods, including foods that come in a can, processed frozen foods, and all fast food.

3. Diet should consist of fresh fruits and vegetables, as well as fresh lean meat products

4. Dietary fiber should be consumed, and the target would be approximately 30 g of dietary fiber daily. Dietary fiber for the most part will come from fresh fruits and vegetables, as well as beans.”

February 6

Yeah…I called again. It’s killing me not to know. The MA was ill and out of the office. So, whew, life happens. She had a great talk with me. Mom to mom. She said this pretty much is his plan of care for liver patients. She was very friendly and caring. Completely understanding said we would hear from them next week.

January 29 afternoon

I did call and speak with a PA or NP who listened and answered some of my questions but said she would have Dr. Galati call. So we are still waiting for clarity on a few “underlined” observations.

January 29, 2015

This morning I am waiting to hear from someone at Texas Liver Specialists, Dr. Galati’s office. We walked out after seeing him yesterday and went straight to labs and even in the waiting room I typed the entry below and Kevin read over it. We get in from church and somewhere along the way there is an email from Dr. Galati in the patient portal that “recaps” the visit. I literally underlined everything that was new information to me in the email. I will be honest and say I am actually hoping they call and say that it was a bad cut and paste! I know they accidentally gave us the wrong standing orders as we left to go to the Smith tower for labs. So it could happen. I’m borderline horrified. But not. Like that makes any sense!

Jan 28, 2015

Dr. Galati

Based on the set of labs he ordered in Dec he said it was flagrant AIH. (Autoimmune Hepatitis) Flagrant markers.

The pathology department looked at the biopsies from 11 and 14. The 11 hinted at PBC or PSC and even now the numbers are hinting at something. He wants him to get labs today. Get labs every month then see him in May. He wants to get to know him that way. He cautioned Kevin on the Azathioprine sided effects such as lowered immune system so not to be a hypochondriac but definitely call quicker when he isn’t feeling well. Also be aware of pancreatitis. Just be aware. Long term side effect is liver cancer. He had a great conversation about how normal kids are worried about school and he has to worry about liver cancer. He said it was tough but all that to tell Kevin to live clean. No alcohol. No drugs.

He mentioned he is at grade 3 fibrosis. 0 is none then it stops at 4 with cirrhosis. (So he is one class away scar tissue wise from cirrhosis)

So by suppressing the inflammation caused by the immune system it is helping keep the scarring to minimum. (?)

He wants him to keep taking Azathioprine. Stay off steroids for now since he wants to get to know him. He mentioned about Ursodiol that he could take it as long as we could afford it. So we will keep up with that one until he says otherwise.

He chatted a bit about Kevin being responsible for taking meds. Keeping up with them. I could text once he is away with some reminders and refill help but he said for me like not to ask him to send videos of him taking his meds. He looked at Kev and said but to stop taking Azathioprine will send you to “hell in a handbag!” I did ask if he could ever outgrow this. Kevin said he said basically – no, it’s not very likely.

On a side note he did say that the Texas Children’s Pathologist is world renowned and I think I was picking up on how impressed he was with the pathologist “eye.” His pathologist agreed with the TCH pathologist so that is nice. He described them by saying when you look at the sky and say what color is it some will say blue while others may say blue gray…they both saw hints of PBC and or PSC.

The walk away is he doesn’t have to be labeled either way now. Whew! Yes something is happening but he is being watched. Kevin is feeling great. We will stay on top of this.

I know you can’t ask for more from a 17 year old boy who desires to serve the Lord with all his life than to live clean. We got this!

We were in an exam room that was covered in New York Yankees memorabilia. I was sitting in old stadium seats. Kevin took pictures of everything.

Again he said he would keep Dr. Olive and Dr. Walsh in the loop. Love that!

January 27, 2015

He Didn’t Even Pull Up The Covers!

We saw Dr. Walsh. She had a baby boy and named him Liam! She said she was so appreciative of the time off. He is 4 months old. She started after that by saying let me tell you what I know. Kevin, most of my patients stayed calm when I tuned in but you exploded! We all agreed. Remember her words before leaving were I want you all tucked in. So I said exactly…and he didn’t even pull the covers up! That would exactly describe his life since mid summer. He exploded. She said she received a letter from Dr. Galati so that eliminated the awkward but not awkward part of saying we are moving on. She was wonderful and discussed so much with us. She happened to mention in passing that she remembers Kevin because he was one of her first in-room assessments. Cute. (We have been with her as her name changed and now her family grew) She was realistic. She told Kevin he didn’t need 6 doctors but didn’t want to see him go but understood and gave us her email. She wants his senior picture…she said keep up. It was weird walking out of there. It was familiar.

January 22, 2015

Love Lexa!!

Wow! After thinking Monday that no one had Kevin on their mind Lexa called today with the best news. She said she was driving into the office this morning and it dawned on her that she still hadn’t received any slides from Texas Children’s. So she called again. She ended up asking for the manager and finally told them she was walking over to get the slides! She called to give me peace of mind!!! Neither of us have any idea why it took this long. I have no idea why they would want such incompetent employees! She said she has never had this much trouble ever getting slides. But she has them in her hands and is walking them to be viewed herself!

I am so absolutely relieved! Praising Him for following close behind and picking up the all the pieces! So so happy!

January 20, 2015

One More Phone Call

That is what came out when the office manager called and apologized and mentioned to me in all honestly that what I dealt with they are faced with every day. She said it is unbelievable what ‘one more phone call’ they have to keep making. She said they were out of the office Friday for training and much to their surprise the slides were still not received. She has documented how many calls they had over to TCH just for this request. She said she was speaking to me as an office manager, and mother, and a patient. She stated that Dr. Galati is the best and that she promised she would get Kevin, me, and Keith through this.

It is unfortunate and it hurts because I know really they need grace, mercy, forgiveness, for this perplexing mistake. Whoever is at fault. But it is hard to do when it’s Kevin I am fighting for. I love anything cancelled when it’s me! And when I spoke with Kevin he was like well…ok. And played basketball all day on his day off from school! I said Kevin, you totally need to answer these calls. Lexa would have loved receiving that response instead of maniac mama!

I inquired to Dee, the office manager, about several topics during our conversation over the phone:

~Why the appointment needed to be cancelled when they said there was no new information yet they dropped in our patient portal Kevin’s lab results within the hour after being cancelled that were taken 12/18/14 and sent to them 12/22/14. That out of all the numbers my eyes go straight to that GGT and it was at 158 from 124 from 110 (in the best order I could remember not having Keith’s spread sheet in front of me.) We need to know do we add the steroid back? He was taken off steroids so the scopes would not be masked. This was NEW information.

~What should I do about the TCH follow up with Dr. Walsh. We had hoped to have this opinion. She felt I should reschedule it.

~What to do about them saying I could NOT have access to his slides that they had to request them. I have a good friend who texted me saying she would do a fundraiser for me to bail me out of jail because she knows this mama’s heart and great day those slides will be delivered before our rescheduled appointment on Jan 28!:)

She said I do have every right to get them. It has been TCH who when I call pathology medical records “whoever” answers that phone tells me I have to have the doctor request them. Who knew!? Who ever knows!!!?? I did not have to. I could have requested the slides. *infuriated face*

~She said she would have someone call me about that GGT number but before she did she mentioned something about since it is his first labs…I stopped her. I said he has been having labs since August 2011. I am holding the copy of the medical release request that I sent TCH to have all records sent to Dr. Galati from TCH. She had some from Tomball hospital. (Hip hip Horray for them! Love Tomball!) but no others. So I gathered my thoughts. Said there was no need for anyone to call about the number because they have no history to see. And we will see Dr. Galati Jan 28. Next Wednesday. She instructed me to once again phone TCH. Send them a request with only labs checked. And interestingly enough when I did and I spoke to Stacey at TCH medical records she said the exact same thing. I gave her the brief history. The original request was October 22. She was super nice and informative. She offered great information. She said since my request said all records from Aug 2011 to present that that was too much for a fax. Here’s the kicker part: “so they chose to send what they thought was pertinent.” (!) *undeniably in disbelief face*

*crazy mad face*

I replied with well, my phone number is on the request and I didn’t receive a phone call telling me to please make separate and smaller request for records. I know I’m not in the medical field but if this is what people deal with every day we do need to send people to junior college for free for two years! Oh how America is declining in my eyes if this is an original thought to just me!

*hot face* She said to please make it attention Stacey and she would get it over to them today.

In my conversation with the office manager she let me know nicely who she was so I let her know who we were. I said we are the people who blog everything about Kevin, and put numbers and medications and procedures with dates in spreadsheets. When we get a phone call or test results we want to keep up with that information and although we may not know what to do with it we sure do want to know it. We know he is not critically ill but is chronically ill. She ended the call telling me that my faith would get me through this. That is true. And somehow even though I felt I was turned completely inside out with appall, somehow sprinkled in there was enough reference in my conversation that she knew she was speaking to a woman of faith. *bright face*

I am spent. I am determined. I am calling both offices now to simply follow up. That I have learned. I thought I followed up before. But today…I will follow up.

[Follow Up Call TCH Stacey Medical Records:

••• She remembered me. She sent 3 separate faxes to Dr. Galati’s office. 30 pages. She happened to state that she went as far back as November 2011. I said we really need all the way to August 2011. I said that is when he went from Tomball hospital in an ambulance to yall. Any labs done August to November are crucial. That is when the diagnosis was being made. Dr. Galati’s office needs those. She was very nice. Informative and was going to send those now. One follow up down:) And glad I did at that mind you…]

January 19, 2015

Shaking

Since Dec. 9th when I felt like an epic failure because the doctor looked me in the eye and said I need those slides, I have been waiting for today’s appointment. You can bet I called for the slides the very next morning. Know what? I’m not allowed to order them. The hospital said the doctor had to make that call. Well, that’s easy enough! So I just called the doctor’s office back who we just left not even 24 hours before and spoke to a different area of the office and they agreed. They said they would handle it.

Today is the 19th. Today is the follow up visit. I was emailed to confirm the appointment. I was Robo called to confirm the appointment. Yet this morning was awakened by Lexa telling me since they haven’t received Kevin’s slides they aren’t going to have anything new to discuss at today’s appointment. So she cancelled the appointment.

Uncontrollable shaking consumes me. With tears and barely a voice to be understood I asked about his labs. That is new information I am waiting for. I’ve checked the patient portal and nothing. She said they wait on those at the follow up. (Give me the GGT numbers or give me death lady!! That’s what I’m desperate to know!)

When you feel like for the second time in a row from Houston’s best medical centers your child fell through the cracks it’s what happens to you or at least to me.

Still shaking.

I said. I will go get the slides. I offered it 6 weeks ago. She replied I couldn’t. She kept repeating let me call TCH and see what went wrong. I asked her again through tears why this couldn’t have happened earlier. Why after December 10 when I called the day after his December 9th appointment and heard we will get the slides how I’m suppose to believe that now. I begged her. I said I will leave my house right now if you just give me the exact location in TCH where the slides are. She said they wouldn’t release them to me. I said what if I bring a lawyer!? She said they wouldn’t. I said what if I bring police. She again said no. (Which is good because I know both of these professionals but did I really want to make that call! If there’s an lol it would go here. If. Not feeling the lol)

She said she needed to call over to TCH and would call back. I did ask about how long until I could expect a return call and she said in less than 15 minutes. And it was. However, it takes 48-72 hours to receive the slides. So his appointment had to be moved to next week. January 28 at 1:00.

Shaking and crying I had to ask who was there when we left that office on December 9th walking around with a thought of Kevin or with Kevin on their heart? I asked from a mom’s perspective to be able to understand this just how does the office work? I am truly perplexed. Curious. Defeated even. I explained on how many levels this is disappointing. I am pretty sure she understood my disappointment. Kevin didn’t have to miss school today for this appointment because we are out today. Last semester we got “the letter” from the school district reminding us of that very thing. A Very Threatening kind of letter. “Stress the momma who can’t do anything but get a doctor’s note to try to clear some of them kind of letter.” I said we were to see his TCH doctor on the 27th and I wanted to be able to tell her what the expert decided. We fell through the cracks because she had something beautiful happen in her life: she had a baby. I cried to Lexa what do I do about that appointment? We will see her and have no new information. Should I cancel it? Let’s see. We fell through the crack with Dr. Walsh so we hopped across the street to Dr. Galati to slip through another. Kevin leaves for college this summer. It can’t keep taking this long between appointments. I know I’m a basket case. It’s how I handle disappointment on this scale when I know I have a chronically ill child who is close to an expert who has a specific treatment plan and a diagnosis and who in my opinion had plenty of time to get the slides to tell us this information at 2:00 today! The only question this mama’s heart needs answered is did they care enough? That is why I’m so upset. I feel as though they did not. I feel as though I am the only one who could and every place I turned my hands were tied. We were in Louisiana over the weekend saying goodbye to baby Reed, my niece’s 7 month old baby, and we didn’t have to rush back. Why didn’t the automated call tell me all this!? I pressed the right buttons?! Didn’t I!? I asked her where in the office was Kevin’s file? Like where do they put the cases that need follow up? I said I sure wouldn’t have waited until the day of the appointment to check and see?? Sobbing and shaking….and

yes, she apologized for dropping things (or something like that. I heard the word dropped) but said she would have the office manager call me later to explain things. Even in my shaking I am looking to Him. I know He knows me. He created me. I know He is my constant. He never changes. And I do take comfort in that. With deep deep breaths I will settle down. We expected new news today. We wanted answers.

My heart is broken…