Thursday was My Girls Day!

Thursday morning I told a nurse that my kids were coming to see me for the first time in a week. I begged them to let me shower and wash my hair so my kids wouldn't be terrified!  About 8:30 the nurse came in and said 'Get your stuff!  I just sent your mom and girls downstairs until we can get you cleaned up!'  Now, this is a pair of heros!  They are less than two hours into their shift. They are doing important things like dressing changes and medications. BUT, they took 20 minutes to make me feel like a human so I could enjoy seeing my kids. 

The reunion was fabulous. I still had a drain, central line, wound vac, etc. Taylor went to the bathroom and saw two small plastic cups. One with a '#1' and one with '#2' written on it. Both were sitting on the back of the toilet. She came out and asked if I really had to poop in that cup!  We laughed and explained that was how they emptied drain #2 in my abdomen. They had a ton of questions. We were all excited. After about 45 minutes, I was exhausted. 

Chad's mom took them to the park to play so I could eat. Eating was my new challenge. I had to eat to get off the TON and transition to oral meds so I could go home. Here's my first real food. 

I ate a few bites of the potato and a few bites of the dessert. Food after nothing in your stomach for a week is tough. 

After a couple of hours, the girls came back for a few minutes. Dr. Braza talked with them about me coming home the following week. She was great with them. We took a walk through the hospital. I have no idea what this pose was other than I was following orders. 

The Big Day in my Journey

I don't think I slept more than 2 hours total on Tuesday night. My sleep was continuously interrupted with nightmares. At one point I woke up feeling like my heart was beating out of my chest.  I was terrified of the testing on Wednesday. I wasn't afraid of the procedure, but I was afraid of the results. If I still had an intestinal leak, they would have to go back in and try to fix the damage again. I had endured the NG tube for 5 days.  I couldn't fathom another 5 days. At one point it had come part of the way out. The process of adjusting it back down was awful. I can't even imagine being awake when it was placed, as most people are. The two inches they moved it just about sent me over the edge. 

Mid-morning Wednesday (after pleading for prayer) I was taken down for my test. The one good thing about the NG tube was that I didn't have to drink the contrast!  They just 'shot it up my nose' through the tube. I was put on an X-ray table that could lean in all directions. They stood me up at about a 60 degree angle. As one lady pushed fluid through the tube, another watched the screen and watched for leaks. They rotated me around several ways. In my mind it was like putting a colored fluid in a clear jar and shifting it around until all the surfaces were covered.  After that procedure, they took several still X-rays that required me to twist and lean in various positions. 

Upon my return to my room, I told the nurses that they could've warned me that I was going to have to dance 1/2 naked on a table.  Remember at this point I still had 8 tubes and a heart monitor. The only thing I had graduated from was the oxygen. I was only able to loosely wear a gown. 

As with all medical procedures, I had to wait on the doctor for the official results. Several hours later, Dr. Young came in to share the greatest news--The Perforation was Repaired!  That meant the NG tube was coming out, and I would soon be able to start eating and drinking. And the the bad news--Dr. Braza the infectious disease doctor was still thinking 2-4 additional weeks of IV medication in the hospital. 

As soon as Dr. Young left, Chasity the nurse and her student nurse came in to remove the NG tube. I was super nervous, but wanted the student to have the opportunity to learn how to remove the tube. She and I made a deal that she could do it as long as she didn't panic and stop in the middle of the process. She was amazing. She untapped my nose, told me to inhale and pulled. It took a total of about 5 seconds and it was out.  I don't really know what I expected, but it was immediate relief!  And then, the catheter was gone. In a matter of minutes I was no longer tethered to the walls of the hospital! 3/9 tubes gone!  Oh and the morphine went too!

I spent the afternoon basking in the glory of being 'fixed'. I spent a couple of hours coding answer documents for the STAAR test. I was a happy camper and refused to be depressed about the long term possibility. 

At this point, I had been in the hospital for 7 days without a real shower and absolutely no hair care.  Hot mess doesn't even begin to describe my looks. I had enlisted the help of Amanda to deal with my hair. (JRhudy was kind enough to bring me some dry shampoo earlier in the week). After looking at my head, Amanda said, 'Girl, that is way past dry shampoo stage.'  Fortunately one of the nurses brought me a 'waterless shampoo cap'. I was desperate. So Sadie read the directions and we went for it. 

Initially it appeared to be an improvement. The smell was pleasant.  Several hours of visitors later, I realized that my hair looked wet, but was completely dry. Essentially, I spread the oil evenly on my head. There was certainly NO improvement in my situation.

   

In the middle of the visitors, Dr. Braza came in to talk with me. She said that she was willing to consider converting my meds to oral meds IF I could eat enough to get off the TPN and tolerate the medication without too many complications.  The plan was to get off the TPN by Friday, eat all weekend, transition to oral meds and go home the next week. That night I had a milkshake. It was fabulous!  That's a total lie!  Nothing sounded good, but I was on a mission. I had to regulate my sugars, pain, and digestive tract. All of that depended on eating! And I wanted to GO HOME!

Days 5-6

Monday was a busy day. That nice lady who came to talk to me about that Specialty Hospital came back for me to sign some papers.  I signed a paper for her to seek insurance approval. Still, the seriousness and suggestion that I needed long term hospital care didn't register. 

I was excited about gaining some independence. Brushing your teeth in the bed with a huge tube coming out of your nose is exciting when you've been unable to do it up to that point.

 I was beginning to miss drinking. Eating wasn't even on my radar. Ice chips are insulting after 5 days!

Physical Therapy came back to visit. Monday was a nice lady named Mary. She took me for a walk.  She had the best personality. She was witty and sarcastic. I loved every minute of it. I had an awesome walker, a ton of tubes, and a crappy IV pole that wouldn't roll well. I looked 85 years old, but I walked! 

Mid morning, I got approval to move to a different room. I was so excited. The care in 'the unit' was fantastic, but the rooms were tiny and the constant monitoring was exhausting. I had my first bed bath in that unit.  A precious nurse named Holly cracked up when I told her as long as I was alive, I insisted on 'crotch cleaning'.  I'll tell you, going from a healthy, independent person to total helplessness is an humbling experience. Those precious ladies cared for my physical needs as well as my emotional needs. 

I had several visitors Monday evening. I also had a meltdown when I had to tell my mom not to bring Blake to see me on Tuesday. I missed her terribly, but I just wasn't feeling up to her visit. Monday night was ROUGH. I could not get comfortable in my new bed. I was burning up. At 1AM, my precious husband went to Walmart and bought me a memory foam mattress for the bed. Then he stood and fanned me for 1/2 an hour. He's a Saint, and I'm glad he's mine!

Tuesday started out as a good day. I had unexpected visitors. 

I felt pretty good. It wasn't a wound vac change day. 

Susan and Jessica hung out for hours and helped pass the time. 

I went on a couple of walks. 

Tuesday was the day I had 'the great realization'. Dr. Markowitz came in to talk to me about my care plan. He told me that I was approved for the Specialty Hospital. Guys, I finally realized they were talking about ME staying in the hospital for 2-4 more weeks. I asked him about home health. I knew many people who had IV meds and wound vacs at home. He looked me right in the eye, pointed at my IV pole and said, 'Have you looked at that? YOU are not even close to home health worthy!' For the very first time, I realized that I had a ton of medicine running through me in addition to TPN. I knew I was getting medicine. I knew I was getting TPN. I knew I had a wound vac. But I had no idea that I had about 15 different bags of crap running through my veins. I was devastated. I couldn't even process staying in the hospital for a month. 

I learned that Wednesday would be 'the day' as far as determining if my perforation was repaired and no longer leaking.

Days 3-4

I have very few memories from Saturday and Sunday. It's been kind of fun to listen to others talk about their interactions with me and read my mom's Facebook posts. 

Some things I do remember are nurses asking me what I needed. I remember my back hurting and being so restless in the bed. The nurses in the ICU type unit were fabulous. They were so patient and caring when all I could say was 'I don't know what I need to do, but my back hurts'. They were kind and adjusted me in the bed frequently when I could not. 

I remember reading texts messages and trying to respond. I was cross eyed with the NG tube taped to my nose and very drugged. The harder I tried to type, the worse the responses became. I was so frustrated that I couldn't respond to the people who were asking about me. 

I remember Lisa Bateman coming to visit as the wound care lady came in to apply the wound vac. Lisa was a trooper and sat in the room and took pictures for me. Here's the first picture of the huge incision.  Sorry if you're squeamish. But this is my story, and I think it's cool.  It's a little less shocking in black and white. 

I remember a guy from Physical Therapy coming in and asking if I wanted to sit up in the chair. I was pretty excited to get out of the bed because my back hurt so much. He helped me get up in the chair and started asking me questions about what part of my body he was touching. I guess I was so pathetic he thought I had a brain injury?  Seriously he touched my knee and my arm, I think.  Regardless, my sensory function was good. Then that sucker said he was leaving. I asked what I was supposed to do. He said, You're going to sit up in that chair for 30 minutes, and then I'll be back.'  I very politely looked at the clock and said 'Holy Shit!'  I sat in that chair forever. Apparently they remotely control their clocks because when I started feeling sick, they said I had not say up the full 30 minutes. I'm not typically a quitter, but I really didn't give a rip about the 30 minutes at that point. 

My mom brought the oldest two girls to see me Saturday. I know they were there but can only recall a few details.  I vaguely remember Taylor talking to me while Kennedy huddled in the corner after a few brief words and questions. At that point, I had 9 different 'tubes' coming from my body. I had the NG tube sucking junk from my stomach. Here's a funny. Taylor asked if I was eating and pooping out of that tube in my nose!  I also had IVs in both hands, a central line in my neck, Foley catheter, wound vac, oxygen, and 2 drains coming from my abdomen.  

Saturday and Sunday were a little concerning for the doctors as I had a low grade temperature and my blood work indicated a possible infection. My blood pressure, heart rate, etc were elevated as well.  They kept everyone informed of the issues while aggressively treating me to avoid me becoming septic.  

Sunday was pretty uneventful. I assume I slept off and on all day. I have no memories other than a nice lady coming in to talk to me about some wing in the hospital known as the Specialty Hospital. She was rambling on about the features and the types of care they provide. She mentioned my insurance. In my mind, she was just doing PR work and sharing the features of their specialized hospital in case I ever needed that service...like when I was old or really sick. I was still oblivious to the seriousness of my situation. 

Chad Dickerson was amazing through all of this. He really 'doesn't do' blood and guts. However, he was attentive and advocated for me when I didn't know I was in the world. I'm glad he took his vows of 'in sickness and in health' seriously. I know that when I made the same vow, I never really considered the level of sickness that we might endure. 

 

Day Two of the Medical Miracle

I finally got to a room on the sixth floor of ETMC in Tyler at about 4AM. I don't recall anything that morning. I'm fairly sure I slept a lot. About 11:30 Dr. David Young came in to see me. Chad was not back from his parents' house yet. 

I only remember bits and pieces of the conversation. However, I do remember Dr. Young saying that he had personally reviewed my CT Scan. In his words, 'There is definitely free air in your abdomen that should not be there. There is definitely fluid in your abdomen that should not be there. I know they told you that we should wait and see. However, after looking over your case this morning, we are taking you back to surgery.'  I remember asking him when. He said very soon...before 2:00. I remember explaining that my husband and parents weren't even there at the hospital. He assured me that I would have time to speak with them and see them (depending on how long it took them to get there). After several questions, Dr. Young reminded me that I could refuse the surgery, but it was a life threatening situation.  He explained that he would open my abdomen with a large incision, find the damage, make the necessary repairs, and clean out any toxins or infection that he found. He also explained that I would wake up with an NG tube and central line in my jugular and that I should expect to be in the hospital for a week. 

Dr. Young left the room and I stared into space for a few minutes trying to wrap my brain around the fact that I had a perforated intestine and needed a huge, invasive surgery to fix it. 

As I gathered my thoughts and picked up the phone to call Chad, he walked in the door. All I remember saying to him is 'Dr. Young just left. It's bad. You need to talk to him now.'  He went to the nurses station and they located Dr. Young who kindly came back and explained the situation to us again. I honestly don't know the exact time frame, but in my mind they took me downstairs to prep for surgery within 20 minutes of Dr. Young leaving the second time. 

Chad called my mom and texted our Sunday School teacher. I vaguely remember seeing Tim Turlington before surgery and telling him I was in shock. I remember seeing Melissa Burton before surgery. I remember several people telling me that I was in the best hands as far as surgeons. Fortunately, I was familiar with Dr. Young. He was the surgeon I had back in November. However, I do not recall being scared to death and crying. But witnesses to the situation say I definitely wasn't the calm, cool, collected Shannon who giggled when rolling into surgery in November to the song 'Better Off in a Pine Box'. 

I have no idea how long the surgery lasted. I remember seeing my older brother, Keith, his wife, Stacey, mom and Chad in the hallway after surgery.  After that, I have no additional Friday memories. But I do have these gems.

Apparently I kept my sense of humor and gave him 'the bird' at some point as well.

 I later learned that Frances was there too. She says I acknowledged her presence before going back to sleep. 

Day One: Routine Procedure and ER

First a little back story...

I was admitted to the hospital in Novemeber with pancreatitis. After 5 nights, 6 days, and many tests, they decided that I needed to have my gall bladder removed. I returned for out-patient surgery the following week. After that surgery, I was good for about 3 weeks. Ironically, I had been having issues before my surgery about every 3/4 weeks. 

From early December to April, I was having pretty severe upper left abdominal pain. I followed up with my GI Doctor as advised. As the months progressed, the pain increased in frequency. Instead of 3-4 days per month, it was becoming 2-3 days per week. In early February, I had an upper GI that didn't really answer any questions. After another visit with the GI doctor and serious conversation referring to comments made about my bile duct during all of the tests in Novemeber, he suggested that I had a spasming sphincter in my bile duct. The solution for this problem is a procedure called an ERCP (had one in November to ensure no gall stones in the duct before my gall bladder was removed). This time, the ERCP would include snipping the sphincter to allow continual flow of bile instead of the sphincter 'getting stuck' in the closed position.  Imagine cutting the elastic on a sleeve when it's too tight on your arm. 

April 21 at 2:00 PM, my dad drove me to this procedure because it required sedation and intubation. After about an hour delay, my procedure was started. My procedure was complicated. The doctor was unable to enter the duct because the sphincter was closed too tightly. He had to stent another portion of the duct system (you can see his ink marks on the photo above) to relieve enough pressure to get into the targeted duct. The 20-40 minute procedure (according to the pamphlet) turned into a 90 minute procedure for me. But in the end, he was able to snip the muscle and and release the backed up bile.  That was a win because it indicated that we finally found the real problem.  

Because my procedure was so complicated and I was in such pain afterward, it took longer to get me on my way. Several nurses asked if I was being admitted for an overnight observation. I was not. Honestly, at that moment I was glad to be going home. 

We went to mom's house to get the girls. After lying on their bed for about 30-45 minutes, I was in excruciating  pain.  I knew that pancreatitis was a side effect in 3-5% of ERCP patients.  I just wanted to go home. However, as I tried to walk to the car, I realized that I couldn't. Daddy encouraged Chad to call the doctor because of the multiple warnings about pain as we left the GI lab a couple of hours before. The GI doctor returned Chad's call and said to take me to the ER. 

I left my parents house crying, barely able to walk and in pain like I've never felt before.  I'm pretty sure my 3 kids were terrified. I know some of them were crying too. 

On the way to the ER, the pain subsided, and I talked about going home instead of wasting thousands of dollars on an emergency room visit. Fortunately, after my dad had encouraged Chad to call, Chad insisted that we follow through.  

I was quickly taken back and put in a room. From that point on, everything took four forevers. They brought me a six gallon cup of contrast to drink for a CT scan. Maybe it wasn't that much, but it was as large as a sonic route 44! I drank and drank and drank. I was so discouraged trying to tell them that I could not drink all of that contrast. I finally got in for the CT scan. The ER Doctor came back and said they saw 'some free air in my abdomen and possibly some fluid'. I was definitely developing pancreatitis, and they wanted to admit me to 'wait and see' on the abdominal situation. Finally, about 3:30 AM (we got to the ER about 8 PM) as they prepared to move me to a room, I sent Chad to his parents' house for sleep. At that point, I had dilaudid and felt no pain. I was ready for sleep.