Day 14 Hospital stay for Sarah

QUICK UPDATE

 Sarah had her surgery on Tuesday to fix the malrotation of her small intestine and remove her appendix.  Everything went great.  She was progressing nicely until yesterday.  Actually we thought she might come home but she began to reject most food offered to her.  Then she swelled up not as bad as before but it was painful for her and upsetting to us.  She also had hiccups which we can't remember her ever hiccupping begore.  She did gag some too.  She was given anti nausea meds and put back on a liquid diet.  She has been going to the bathroom regularly..  We did find she was lactose intolerant from one of the biopsies that were done.  

We really do not know what to think!

All this started in the fall as far as we can remember.  The swelling up after eating is what drove me to take her to the gastrologist in the first place.  Obviously her small intestines issue was something she was born with.  The lactose intolerance was not something we had noticed before.  I asked and was told she could have developed it later in life.   So we got the surgery and she has been on a lactose free diet for most of her hospital stay yet we are still having the same issues.

We are worried and tired.  Please pray for wisdom for our doctors.  Pray for Sarah I hate to see her sick!  She has always been so healthy.  

She has had all the major GI tests.  If you have any ideas please feel free to email me directly as i have not been checking the blog much.  theclanton5@aol.com  Thank you for the prayers! 

Day 10 in the hospital

 It's hard for me to believe we are on day10!  Sarah has been in here since New Year's Day.  It seems unreal to me. She is doing great emotionally.  Sarah is usually pretty happy as long as she is with me or Daddy.  We are here together for the most part each day then one of us goes home to the others.  Jon has been staying nights until this weekend.  I stayed all weekend so Jon could be at church on Sunday (which happened to be our 16th anniversary at our church) When I go home, I do laundry and make sure the house is picked up and everything is done.  Thankfully our oldest son was able to help us out some and our wonderful caregiver Ashley has taken care of things for us.  The one thing about going through a rough time is how our little family pulls together and depends on each other.  

So to catch up on Sarah.....

as I shared we found out late on Friday about Sarah's malformation of her small intestines

MALFORMATION you can read this link.  This has been frustrating because I just cannot believe it was not caught before now. But as far as anyone can tell she hasn't had a volvulus (twisting of the intestines) or a blockage there.  She doesn't have the symptoms of having a dead part of her intestines.  But of course, we won't know everything until she has surgery.  

But there seems to be something else going on because her large intestines are large and stretched out from gas.  The malformation would not normally cause that problem. She has had many tests run blood work and biopsies from her colonoscopy and endoscope -everything has come back normal but there has to be a reason for her severe bloating and pain.  Her malformation is a birth defect, so her tummy has been like that for the past 15 years-why all the problems now??  During her surgery she will have another biopsy for Hirschsprung Disease which is also a a congenital issue meaning she was born with it.  Not to be too graphic but once we got Sarah home and she began to gain weight and take more solids she regularly went to the bathroom in a normal way given that she only ate purred foods.  

At this point all I can think is that WE missed signs!  And that breaks my heart!  Sarah has been my healthiest kid overall.  She was seldom sick and if she did get a little something she would be well in a few days.  Even when she had covid in 2020 she recovered so quickly (she did have the monclonal antibody treatment) Even Steve and Shad had ear infections growing up or tummy viruses.  This diagnosis has rocked my world and I can guarantee you Sam is about to have a full work up to ensure he doesn't have anything like this.  He has had so much trouble with constipation over the years, so he's been tested for many things and even hospitalizes with a blockage a few years ago.  But he has never had an upper/lower barium test!!  That's the test that caught this.  As I've asked questions, I've been told that was the best test to catch it.  

For her surgery we asked for Dr Gissele who did Sam's surgery for the tumor in 2020.  We were not sure what his schedule was going to be but thankfully he was able to fit her in and surgery is scheduled for tomorrow Tuesday at 11 am.  He will try and do it laparoscopically, but he is not sure if it will be possible,  

Sarah is feeling better as she is getting gas meds before each meal and is on liquids now.  She's been happy and listening to Iheart radio which is in all the rooms.  It has a selection of Christmas songs that she just loves.  At this point I am about over Christmas songs!!!  Her favorite is the Charlie Brown Christmas song. 

  Our family has gone through so much over the last 18 years that it amazes me when i really think about it.   But we just keep on going.... what else can we do?  A close friend and I were talking, and she has had some stuff that she's gone through, but she told me we've had more than our share of problems.  I truly do not understand it.  She called me Job it's not that bad but man I'd love just a few years with no health concerns or floods or car accidents or anything major!!!  But we trust God through all of it and if nothing else it draws our family closer together.  Both Steve and Shad have really stepped up and helped us out during this time.  They were accidently 'twining" on Saturday.  I love my big boys:)

Shad actually has a new direction for his life!  After a year of college and 3 years of working at our friend's restaurant he will be starting the academy with the Florida Department of Corrections this month.   Shad has always been interested in military/law enforcement.  He plans on going back to college and getting his degree in Forensic Investigations.  Life is such a full circle when we brought Shad home, we were living on the grounds of Polk Correctional.  We only lived there for a few more months but Shad has a small memory of it.  That's where he will go for training.  

 

Steve also has a new job working as a TV producer.  He works for Concerned Citizens Defending Freedom CCDF  It was a step up for him in pay and responsibilities.  Starting this year he will be traveling monthly as they expand into various states and counties.  CCDF is a grassroot conservative movement.  Its goals are for people to be involved in their local areas/elections/school boards.  

Below is a video that he exclusively created.  

CCDF Video

He has a lovely girlfriend.  She works in the school system and is very talented.  She even got our whole family doing Christmas crafts!  I love crafting but the boys and Jon not so much, LOL But they had a good time making Christmas ornaments that actually ended up on the Tree.

So, our "big boys" are doing great!  We love and appreciate how they are there for the family when things happen. We are blessed with them.  

Yesterday one of my BBFs my college roommate aka Sister came by with gifts for Sarah and me and all kinds of treats:) Jan is always there for me.  I always say one of the luckiest days of my life was when we got placed together as college roommates!  Believe it or not that was 38 years ago!!!! I just counted it up and shocked myself Bahahahaha!  Sarah loved her presents and started playing with the balloons.  She loved how they'd come back to her when she would push them away.  

It's such a joy to see her without pain.  She has been very cooperative with every test and procedure.  

Please pray for our girl tomorrow as she faces surgery.  Pray for wisdom for her doctors and that we will get all the answers needed to avoid any health problems in the future! Thank you for all the messages and comments.  It lifts my spirits thinking of so many of you all who have followed and cared about my family for all these years.  

PRAY FOR SARAH! SURGERY IS PLANNED

This is from yesterday

I don’t even know how to begin but we found out today something major about Sarah that has been missed all her life & specifically since this problem started in September. Following her Upper & lower G.I. today we were informed that she has malrotation of the small intestine. Her small intestines is all on the right side of her body instead of it running across her abdomen (see the link in the comments) She will have to have surgery within the next few days. Unfortunately her team is not sure that’s all that is wrong. Because of her intestines condition it can not be done laparoscopically.

There is so much going on right now. Personally I’m angry that it took so long to find an answer and that we had to keep coming back and pushing and pushing. I do feel like they were investigating everything but ONLY Because we would not back down. She has had x-rays and CAT scan and no one saw that until today which really upsets me. Right now I’m only concentrating on Sarah but when she is better It will be addressed with the different hospitals. We are relieved that this has been found & there is a partial answer. PLEASE PRAY! We are hoping we can have Dr Grant Giessler do the surgery (he did Sam’s spine tumor/tailbone surgery & he is the best. We did consult with the surgeon from his office but he is out of town until Monday. I really really want him to do the surgery. Please pray for my sweet girl if you really know me you know I have a special bond with Sarah. She was meant to be our daughter. When we were in the process of adopting her there was a situation where we thought we had lost her to another family. Since then I have dreams of losing her. This situation is very hard for me. I’ve vaguely heard of this condition before so the link in comments will answer your questions. Unfortunately they think there is something else going on too - no one knows exactly what but her large intestine is swollen with gas & looks stretched out. It looks like that’s gone on for some time. This condition does not affect the large intestines except sometimes where they meet. It’s a complicated situation.

Once we get through this with Sarah -Sam’s whole gastric system will be rechecked! He’s been so constipated lately & has had issues all his life with various Gastro issues.

We have so many other things going on I think Jon & I are in shock & just survival mode at this point. .

Just pray- God’s always been faithful throughout all our trials but I’m just beyond overwhelmed at this point"

We are now on day 8 of a hospital stay for Sarah with no end in sight. She will have this complicated surgery sometime next week. Daily she is in some pain. It is killing me. There has been mistakes, slowness and issues. Some meds should have been given to her days ago but are just being started. And the fact this is her second hospitalization with the same problem and this is just being found really upsets us Seeing Sarah in such pain is just heartbreaking. And it turns me into a BEAR! So you might want to pray for all the staff LOL (sorta)

ROTATION OF INTESTINE

We also have a very dear friend going through the trial of his life with a very aggressive cancer. Please pray that God will use this next treatment scheduled to help relieve pain and give him more time! We pray that he is healed completely.

My life has seen such highs and such lows. Right now I am in a very low spot. On top of everything I also found out that a friend I had worked with for many years died on January 1 from a bowel blockage. She did not survive the surgery. Unfortunately I could not even pay my respects to the family since Sarah is in the hospital.

We do not know what tomorrow holds or this coming week. We are very concerned and I'm literally sick on my stomach every minute. Today was the first day I really ate a real meal since this all started. Please pray for us! Pray for Sarah that this surgery will go smoothly and that the recovery will be easier than expected. Pray for my dear friend and for the family of my friend who passed away.

Although we are focused on these dire situations, I just can't help but remember today was 16 years since I was handed a little boy in Chengdu China....now he's a young man ready to embark on a career in law enforcement starting in just a few days! And I have to brag on Shad and Steve they have both been so sweet and helpful as our family has faced this new problem together I love my big boys!

2022 Be Kind!

 

Unfortunately we started 2022 in the hospital!  Sarah got sicker and we had to take her in on January 1! She is still in today and will be at least until tomorrow.  Yesterday we were planning on coming home but she had another attack after she ate her supper meal.  We are avoiding several things right now so that showed us that some of them might not be a problem for her as she had the terrible gas problem anyhow. After many tests the doctors have determined a few things and the #1 thing is this problem with bloating is not caused by constipation.  She has episodes after eating and it's awful.  Her whole body swells with gas and it looks so painful.  Sarah doesn't really cry (that's an orphanage thing) but she grimaces and puts her head down and doesn't want to be touched.   As of now she's had bloodwork CT scan several x-rays an endoscopy colonoscopy and is going to have an upper GI tomorrow.  During the scopes many tissue samples were taken some have come back that have ruled out various parasites and disease such as celiac disease.  All her organs look good (thank God) and actually nothing has come back bad except for seeing massive amounts of gas in her GI system.  

New Year's Day she was feeling so sick this was right before we took her in.  

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In the ER we felt so bad for her

This was yesterday she was feeling so much better before she ate!

Jon has been staying with her around the clock and I've been coming home at night to keep things running here and to make sure we get in all of Sam's eye drops.  Today our caregiver could not come in till later and I had several things that had to be done including grocery shopping so I'm joining them by face time and on the phone with the doctors.  I miss this girl so bad!  I walked in her room and felt like crying!

Please pray for our sweet sweet Sarah  Pray that the doctors find a cure for whatever is going on asap!  We would like to know what has caused this but they aren't sure if that will ever be answered but pray that a solution is found.  One thing that is being discussed in SIBO Small Intestinal bacterial Overgrowth She has some of the symptoms but not all.  If it is SIBO there is a medicine that will cure it.  Please pray for wisdom for all the doctors involved.  Pray for our family Sam is having some tummy issues too non related he has always had issues with constipation.  We also still have car issues and sharing 2 cars with 4 people!  And one of them is in another town!  Our oldest son's car ended up not being totaled so he has waited for over a month with no end in sight to get it back from the repair shop.  Shad's truck is in the shop....so it's been a real challenge.  But we've figured it out thus far ok!  

Thank you for your prayers and if you have any insight or similar experience please feel free to email me at theclanton5@aol.com

Christmas 2021and Happy New Year 2022

Christmas Service 2021

Christmas Service with Uncle Guy

                                                      Sam in his annual picture

 Then we had my Sarah's 15th! birthday  My Christmas baby!

She got a new bedspread set and some clothes  How could Sarh be 15 years old?  Time goes so fast!!

Shad's favorite present...

the 3 little people by the tree

our new tshirts Jon in his Johnny Cash shirt and me in my ScoobyDoo

we all have on new tshirts LOL all different kinds-all presents from a family member

Shad's new ride  we love it although it has some work to do

Rose our nurse and Selah  Rose has certainly become like family to us!

Selah- she was a bit perturbed at going off her schedule so she had her tongue out.  It's funny that's a way she shows things are not quite right in her world.  She was able to do that once she did HBOT therapy.  

Last Sunday of the year 

Then out to eat at our favorite place

Shad and all the kittens~

Well we had a wonderful Christmas holiday and hope you did too!

The only issues we had were both Sam and Sarah had bowel obstructions!  Sam has had issues all his life but Sarah has never had a problem.  She ended up in the hospital for 4 days and is still having issues.  In fact I started this blog around 6pm on December 31, 2021 and am ending it after the start of 2022 because i heard Sarah gagging in the living room.  We were able to help her some and called the doctor.  Sarah will be having another cleanse session, this time at home if all goes well....not tooo thrilled for us to start 2022 that way but it beats her being in the hospital.  Please keep our precious girl in your prayers! 

Listen we aren't taking no chances with 2022

Jon held the door open for 2021 to leave and 2022 to come in at 11;59

All we got were two of the outdoor cats running in LOL

And I have the essentials for tomorrow for us to eat...It's a southern thing...

you eat ham with collard greens, black eye peas and cornbread for a lucky year...

I figure with the ways things are going we'd best do that too 

To quote the great Michael Scott “I’m not superstitious, but I am a little stitious.” – Michael Scott, Season 4 (my favorite show)

Our "big" boys are out at a succession of parties (nothing wild)  One of them has to be at work at 8 am LOL

We are still dealing with after affects from the accidents.  One vehicle was totaled and one was put in the shop for repairs.  We've been told that it could take a month with the shortage of parts and workers...

Shad did get a truck but it still has work to go on it before it can hit the road.  Hopefully that will get done next week! It's been a process.  Even the two vehicles that were not in an accident had issues this past month and had to have several repairs.  I can not think of a time when we have had so much car problems!  But we have made due with the situations.  It's all worked out.  

So now I wish you a blessed 2022- for your family and mine!  God be with us all throughtout this new year!  

SO MUCH TO BE THANKFUL FOR!

 

Happy Late Thanksgiving 2021!

This picture has all of my children in it for the very first time.  If you look I'm holding an urn.  It holds the remains of our twins.  It took me 20 years to open the box their ashes came in and another 5 years before I could display them.  So in October on their 25th  anniversary I put them in our living room   We'd planned on taking some pictures and I'd thought about including them.  But I didn't know how I'd feel.  To be quite honest I had to fight down my feelings as I decided to run back in the house for them.  But we had friends over and I didn't want to have a major breakdown so I didn't let myself think too deeply about what I was doing.  In the moment I just thought about the love I have for my children and how blessed I am despite all the difficulties that have come across our way we are all still together.  

But I pray that one day we will all be together in eternity- healed and whole.  

And the rest of the story of this picture is that the week before within an hour of each other Shad and Steve were in accidents that totaled their cars (they are still debating Steve's but I think it will be totaled)  

Shad was headed to take his Law Enforcement test (more on that later).  He was T-boned by a ROCK truck that failed to stop at a stop sign right in front of two police officers!  He was hit on the driver's side but just an inch or less behind his seat.  The force of the impact pushed Shad into one of the cop's cars.  The Florida Highway Patrol officer who investigated the accident told me he couldn't believe Shad walked away with no major injuries!  He called me in the middle of a doctor's appointment!  I felt like I should answer the phone and all he told me was "a truck hit me"  He said he was ok and I told him I'd call him right back.  When I finished I called him back thinking he'd had a fender bender then he told me the rest of the story!  I could have passed out!  

ON the way to the hospital I called Steve and Jon.  Then once I got to the hospital Jon called me and asked in a strange tone if I'd talked to Steve.  I was like "yes I told him about Shad" then he asked if Steve had told me something... by this time I was starting to freak out because Jon sounded funny.  He then told me Steve had just had an accident!  I could hardly believe him!

In a few minutes Steve called me...his first words were " I couldn't let Shad out do me"...at the same time Shad was saying from his hospital bed "Steve tried to out do me" I started laughing a little hysterically!  That's my boys!  

I'm thankful to God that they both walked away!  

Shad was driving!  He was hit on the driver's side

Then it pushed him into the cop's car on the passenger's side

Steve's doesn't look as bad but the damage was almost as much as the car is worth.  He had another driver "fail to give the right away" so at least it wasn't his fault either.

Being this happened right before Thanksgiving it took forever for us both to get rentals.  Neither situation has been resolved yet.  Plus we have issues with Selah's van and it's not drivable!  Being that it is older no one can find the part we need. We've been doing alot of car trading back & forth!  But we are grateful that's our only problem  

Hope you all are well!  Hope to write more later!!!

Guess Who Is 18?

Guess who is 18?  Unfortunately not me LOL

Shad and I share a birthday so this was a BIGGIE for him!  We wanted to do something special so we bought Universal passes so the 4 of us would have something we could do together as a family.  

So we surprised him by going over to Orlando for the weekend.  We went to Kobe Steakhouse for our birthday meal and spent the night right by Universal.  Then we spent the day at Universal and have passes for the next year.  

We have done most things over the years as a group but as everyone has gotten older it's been harder.  Obviously Selah doesn't go places like this. Sam and Sarah do not enjoy doing things like theme parks.  They like to be home and they like things quiet.  Years ago we took them to Disney.  They did ok but we could tell they just barely tolerated it.  IF they were alone in the parks and could just ride the rides over and over again they would probably like it LOL But they don't like all the things that go along with a theme park!  

It's so important when you have kids with special needs to make time for the ones who do not have special needs.  Often our lives are consumed with Selah Sam and Sarah's needs and rightfully so but we have always tried to stay connected with Shad and Steve too.  Thankfully we have managed to do it.  Last Christmas we made a list of things for the 4 of us to do together this year.  Some were easy-trying new restaurants and others required a bit more effort to make it work.  We have a wonderful caregiver who is like family for Sam and Sarah so we feel comfortable being away for a little bit.  Selah has her nurses so she is well taken care of with no problems.  

Kobe Steakhouse!  How do I have 2 adult children???

We had such a good time!

Ok I have to admit I love Harry Potter!  We never watched it until right before Steve went to college.  It was the last movie series that we watched together as a family before we moved to the new house.  At our old house way out in the country we had terrible wifi and no extra channels so we still watched DVDs  So we had tons of DVDs and old movies and tv shows.  We would watch together after supper at night.  Sweet memories!!!  I'm so glad that we had terrible wifi.  If the kids played video games it was not live and with other people so there was a bit of a balance.  YAY for bad wifi!  Anyhow those days are dear to me.  Sometimes I'm sad because things are different now but I'm so glad for the times we had!   I will tell you the Harry Potter ride at Islands of Adventure is insane!  My poor husband gets motion sickness he was not thrilled LOL

And look at us!  We went by ourselves with no kids last week!  Both of the boys were shocked when we told the we were going (they both were working hahah)  I reminded them that their dad and I were going places together long before they were born!  

So Happy Birthday Shad!  We are so glad you are our son!!!