Feeding Tube Test Day

Thursday morning, October 24rd, was test day. As directed, we began pumping the food very slowly and diluted three parts water to one part food.  After less than one tablespoon, the results were not good! I had an allergic response. The swelling in my throat got much worse making it difficult to breathe, eyes and nose were running, hands and feet began to itch as well as the inside my ears.  There was no way I going to be able to ingest 1600 cc’s a day of this  full strength. I wanted to cry but that actually made it harder to breathe. I tried to stay as calm as possible but the throat pain was really testing me. Mr. Hero made the call to my specialist with the news. I would now need a PICC line, which stands for peripherally inserted central catheters. It is used to give special IV nutrition called TPN. We would need to wait on insurance approval, who knows how long that would take. There was a lot of red tape involving both my primary doctor, my specialist and the insurance company. It was now day five with no food. The prayer warriors sprang into action once again.

About noon, I received a call from my new home health company, Vital Systems of Oklahoma, checking on how the test went that morning. I told them it was not good. They mentioned that they not only have the ability to provide TPN but could even place the PICC line in my home. They work well with my insurance company and can usually get approval within 24 hours. Wow! That was incredible news. They jumped in and worked with both of my doctors and the insurance company. They got authorization for the PICC line to be placed.

My TPN and supplies were scheduled to be delivered the next day, we were still waiting for authorization for that part. At first I was nervous about getting the line in because what if they denied the food? It was going to be day 6 no food and it was Friday. If the last authorization did not come in I would be waiting over the weekend and it would be day 9 at the soonest before I would be able to start receiving nutrition. This was not like a fast where you go without food for several days or weeks. I was in a very weakened state with very little food for the last four weeks.  Vital Systems called back to say they would be sending me 5 days of food and supplies. They felt very confident the approval would come through but didn’t want me sick over the weekend. What great customer service! You don’t hear of companies putting the patient first like that, well uh…. ever. By 8:00 pm my new PICC nurse was in my bed room with a portable ultrasound, portable X-Ray, an X-ray tech, and was placing my line. What a miracle!!

 

Feeding Tube Surgery

Wednesday morning, October 23rd, started off bright and early with a 6:30 am arrival at the hospital. Anyone who knows me realizes these are the most dreaded days of my life. Procedure days are hard enough but surgery days are very challenging with the increased level of medications required. I would rather be in a shark cage than have any kind of surgery. I have had too many complications over the years and know full well what typically happens to me. The prayer warriors across the nation were already awake and warmed up. We begin to see the effects right away beginning with hitting every single light green for the 14 mile trip!

Today when we walked in the waiting room it was already full, the complete opposite of two weeks ago.  As I walked down the hallway filled with busy medical staff dashing from place to place, I thought about the old Aesop’s Fable “The Tortoise and the Hare”. I was feeling particularly weak and frail, today was day 4 with no food of any kind. I was thinking how I must look like the turtle among all the busy rabbits racing around me.

I was called back in right away by a short, older, African-American woman. She gave me her name but honestly my mind was preoccupied. She took me back to get me ready and she vowed to call my family back once we were done prepping for surgery. She had a beautiful light in her eyes, smile that lit up her face, and she was radiant. As she began to start my IV she began to hum a familiar tune. I love music and I love when medical people hum or sing while they are working, it instantly puts me at peace. The OB doctor I had with my son, Game Boy, always sang. That man could sing like the best jazz or gospel recording artist. He could give you bad news and you would still have a smile on your face.   My current dentist, who is THE best dentist ever, hums and sings when he is working too. When you go there it’s like a little party broke out, how many people can say that about their dentist? As I listen to my nurse sing, I recognized the tune as a hymn. As if she could read my mind, she said “I hope you don’t mind my singing, I just love to praise my Jesus”.  Mind? Sing it, and sing it loud enough for both of us because with this swollen throat I can’t join you. Oh, what a beautiful morning we had. When she was finished and called back my family to come back and a familiar face walked in. It was Yvette, my recover nurse from two weeks ago, who took such good care of me and already knew all my complicating factors. What a joy to learn she would be taking care of me again. The morning was really looking up. I knew my doctor would take excellent care of me but there was still one wildcard and it was the biggest factor of how my 1-2 week would be, the dreaded anesthesia. A nurse anestitist and medical student soon arrived on the scene. He had already read up on my last several surgeries, my disease, extensive drug allergies, notes of past complications and knew exactly what to give me. He laid out his plan for me and I was so thankful to learn they could do the procedure without any general painkillers, one of my biggest nemesis.

The surgery went well, I was fully awake and alert in recovery and more importantly, I was not sick at all. With in an hour I was being discharged, which even broke the record from two weeks earlier. We made it home with no car sickness and the rest of the day was spent watching tv and visiting with my parents, Beauty and The Businessman took time off to hang out with me.

I was advised not to use my shiny new peg tube for four hours then only water for the rest of the day. I could give it a test drive in the morning. When you are on a feeding tube, you can not just put regular food in it. One of the purposes of a feeding tube is to provide basic nutrition when normal food is not an option for some reason; in my case allergic reaction. The formula that goes into the feeding tube is called enteral food. It is a medical version of  Boost or Ensure, but is much more immune system friendly. Enteral food is not made to be palatable so there is no added flavoring, colors, or anything but just vitamins, minerals, and nutrition. Enteral food can not be purchased in the stores, you have to get it from the home health company that provides your feeding pump, bags, bandages and other items needed to care for your tube. My new home health company, Vital Systems of Oklahoma,  delivered my enteral food that night so we would have it ready for the next morning’s test.

It turned out to be another great day. That night, as Mr. Hero and I were saying goodnight, tears of joy filled our eyes as we were so thankful for all that God had arranged.

“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?

Matt 6:25-27 NIV

No More Food!

This weekend was one of the most challenging times of my life. Friday and Saturday I experienced the worst allergic reactions to date! The swelling increased significantly in my throat, which has already been swollen for weeks. The swelling continued in my upper lip, tongue, and soft roof of the mouth. My uvula, the “punching bag”,  was laying down on the back of my tongue and would gag me.  I felt sharp sensations like an electrical shock in my throat. Everything was so painful as if the tissue was being stretched beyond its limits. Breathing was extremely difficult and medication did not seem to be working. Honestly,  I was not sure I would make it this time. All of this came after eating my lone food, rice. It was clear I had now lost my ability to eat food.

Sunday, I did not eat and as the day went on I began to feel a bit better. I was hungry but knew what would happen if I dared to take a bite. Monday morning, began with a call to my Dr with a report. We had called over the weekend for instructions but now to fill him in on the results. We all suspected this may happen, as it was eerily similar to what we experienced six years earlier. He confirmed, if I was reacting to rice I would react to all other foods. He has done tons of research on foods and their effects on mast cells. My plain, organic, made only with bottled water, rice was statistically the least reactive food for me in my current condition. I would need a feeding tube and an elemental diet.

The task of insurance approval and getting on the schedule provided a flurry of activity and the news was not good. The surgery schedule was full for the next couple of weeks. I would likely need to receive some nutrients before then. The questions filled my mind, how long could a person go with out eating? I had already lost 30 pounds over the last couple of weeks while I was eating. How quick would my weight loss be with no food at all? I once again called on my Prayer Army. With in two hours I received a call from the office. When I picked up the phone, the very first words out of receiver were “How hard were you praying?”  You have no idea, I replied! I literally have an army praying. “It has worked, I was able to get everything set for Wednesday first appointment of the day” What an answer to prayer and frankly a miracle. Wednesday, would be my 4th day with no food but it was waaaaaayyyyy better than two weeks and 4 days!

There are many reasons why people need feeding tubes. Sometimes a person has an ongoing problem where they are too sick to eat, can not swallow like after a stroke, can not digest food properly, or in my case, unable to eat regular food. When you have a feeding tube, your new food is a special liquid food mixture containing protein, carbohydrates (sugar), fats, vitamins and minerals called enteral food. There are two types longer term feeding tubes G tubes and J tubes (sometimes called GJ).  G tubes feed into the stomach.  J tubes are longer and feed into the intestines or jejunum. I will be receiving a “G tube”, placed during an upper endoscopy or scope. Almost everyone starts off with a G tube and that is what I will receive. In the days following my procedure, I will test the enteral food in my G tube but may need a J tube since my number of mast cells in my stomach are high. If I react to the enteral food, a J tube will be placed by passing the stomach all together. Although I am not thrilled with needing a tube to be able to receive nutrition, it will allow me to receive nutrition while I am going through this health crisis. A feeding tube does not mean I will need it forever but it will allow my hypersensitive immune system a chance to calm down for several months. With out the tube I would not be able to go that long without food.

And my God will meet all your needs according to the riches of his glory in Christ Jesus. To our God and Father be glory for ever and ever. Amen. Phil 4.18-19

 image available at: http://pedsurg.ucsf.edu/conditions–procedures/gastrostomy-tubes.aspx

jejunal feeding tube

image available at: http://www.fairview.org/healthlibrary/Article/89301