I Am Off the IV Bag, Day #2

Yesterday morning, I woke up to CADD pump pumping away. As usual, pump by pump, hum drum by drip drop. Except that the fluid was dripping on my left shoulder, and it was cold and wet. I knew it was not blood, because it was not warm.

Slowly, it dawned on me that my iv was disconnected from my PICC line, and this had mistakenly occurred sometime overnight. I woke up as if I went from 0 to 100 mph.  It finally hit me. I was not connected to my iv bag, and had not been receiving iv fluid for much of the night. In my groggy stupor, I tried to punch the iv back into the pump. Seconds later, my medical knowledge and training naturally intervened. I knew the iv tubing was contaminated, and that it therefore was no longer deemed a sterile line. I threw the end of the tubing into the trash can, letting the pump drip and drip, drop by drop. I fell back to sleep.

It was when I later woke up, about 30 minutes later, that I shot into high gear. My mind was both fascinated and intellectually dissecting what I should do next. All I could think of was, "This line is my life. This line has been my life, has saved my life for over two years. This is my line, the one we keep sterile, the one that has been infected ?6 or 7 times. The last one the PICC line nurse told me that I would ever be able to place in my left arm, as there was a large stricture in the vessel that required fluoroscopy to 'pop' the line into place. 

Yes, the last PICC line change was too hard to place at my bedside. Since the line kept going up into my frontal veins in my head (ouchy, yucky feeling, to feel a stick inside your brain), therefore they took me down the hallway from the hospital room and downstairs by elevator, all to make it urgently to the Radiology OR Suite. Let me be perfectly clear about this. My 'sterile' field travelled with my body, and I stared at the automatic fire sprinklers and took note of mild cracks and imperfections in the ceiling as I was whisked away for a procedure I never thought I would undergo: fluoroscopic placement of a PICC line.

As I lay in bed, I reflected on my pump and iv bag situation. Of course. For right now, the iv is not connected to me, so obviously I have to increase my po (per os, or by mouth) fluid intake to make up for the loss of central fluid going through my heart catheter. My mouth was dry and gummy, and yes, I could not wait to get my hands on something to drink. I reached out and grabbed my carbonated water, balancing just enough to prevent me from falling out of bed. I already had enough issues going on, and falling out of bed was not going to be one of them. I was obsessed with my PICC line and preventing contamination. Somehow, I made it to my pharmacy cabinet and pulled out two 4 X 4 gauze dressings and a piece of paper tape. I wrapped my PICC line double lumen ends together in this sterile gauze, all with one hand. I fell back to sleep.

Just like clockwork, Angelina arrived in time to help me figure things out. We did orthostatic blood pressures (positive by systolic mmHg and by tachycardia, increased heart rate) and decided to take the day 'easy'.

But then I remembered that I was invited to a Garden Party, as it dawned on me that my quality of life could possibly be improved permanently, and this was my miracle. My lovely and protective husband let me go visit, laugh, and play table tennis with a dear old friend. It was his daughter's Birthday, St. Patrick's Day, and my No Bag day! I almost fell a couple of times, and I still used my cane for walking. Every step was extremely deliberate, as if I was walking on water. Common sense said to keep using the cane, as my imbalance could lead to a fall.

But did I ever have a fun time...a festive family time of peaceful laughter. A place where I knew that I could be myself. Me. Watching my child playing with older children, both of whom knew us throughout the years. Watching the interactions between my mother and the others around her. Bleak deference to the elderly people in the house, who deserved to be waited upon as if they would not be with us tomorrow. I shall never forget this day, for God set things in motion so that nobody could deny the coincidental happenings of my PICC line.

Recently discharged from my favorite hospital, Good Samaritan Hospital, I had been slowly going 'down' on my PICC line rate. There was a time that I was on 100 ml/hr. On arrival to the hospital, I was at 55 ml/hr. Once home, I had weaned myself to 27.8 ml/hr, a simple TKO (to keep open) minimal rate that would keep fluid going, but not clot the iv line in my chest. I had been keeping in touch with my cardiologist team daily, and they knew that I felt okay so far. 

Sure, I couldn't jump in a pool, go for a 3 mile run, or ride my mountain bike from Los Feliz Boulevard at Hillhurst Street, and go for a grueling mountain bike ride. The ride included an incredibly physical effort to get to the top, which displayed the Griffith Park Observatory. I could not swim laps because the PICC line itself was still going from my left arm to my right great vessel leading into my heart.

I made up my mind to go to this party, feeling that I desperately wanted to get out of my house for a social event of past-life friends. Confirming it with my husband, off we went to the other side of town. We stopped along the way at the Glendale Galleria and, for the first time in 2 years, we took my daughter shopping for clothes. 

Since I had been ill and had collected 3 years worth of clothing attire when my daughter was 2, this was a memorable event. Besides, her pants were above her ankles, as she had an unexpected growth spurt. Later, my daughter would tell her Nanny how much fun she had shopping for clothes with 'Mommy'. I had no idea that this would be an impressional 'event' for her, too. And now I didn't have to argue about what she was wearing to school (my ulterior motive), since these were Mother-Daughter articles of clothing that suited her taste, too.

This little one had been ripped away and ripped away from her mother, hospitalization after hospitalization, PICC line nurse after PICC line nurse in the Master Bedroom, changing my iv dressing once a week. "Are you going to die, Mommy?" echoed in my ears repetitively, as well as, "Am I going to see you after school?" The little one came home to an empty house for the last 25 hospitalizations in the last 3 years.  I scooped her up and smushed kisses over her angelic face. "Mommy is better. Let's go shopping and then, we're going to a party!" WOW. I never said anything like that for as long as our daughter could remember.

This morning, I called my lovely mother-in-law, and my closest friends and family. I let them know I was still okay-ish but I had to take it really easy. I got short of breathe easily, and I still, even today, had to drink 4 bottles of various kinds of water.

Where will my life go now? I was up last night until 12:30 am, and had been up and down overnight for several years. Today I took a 3 hour nap, and I wake up rejuvenated. My hands lift up to the sky in gratitude to God, and I let Him lead my way.

I had another 'Awakening', like the one I got after going to Chicago. I do not know why God picked me to go through crazy times all my life while I juggled medical training that became part of my being. What does my being a medical doctor have to do with all of this? I have learned that my brain is my protection and my integrator of knowledge, based on experience with other patients, especially those at LAC-USC Medical Center. Unusual presentations, rare disorders, and keeping educated with current medical knowledge. I feel like I am still learning, still discovering, still polishing my expertise in TBI, dysautonomia, vertebral artery dissection with aneurysm, s/p diabetes insipidus, and now with a new diagnosis of Basilar-type migraine which has been my most recent savior of my life. 

God is taking care of me and how did He show Himself to me, as The One who makes all things possible? Perhaps I just 'happened' to be weaning myself down on the PICC line iv rate, and my doctor agreed and was informed. Perhaps I just 'happened' to be on such a slow infusion that one could logically say, "Why don't you pull out the remaining PICC line?" The one that starts under my arm skin and ends up near my heart. The PICC line is doing virtually nothing perhaps, and is at risk of infection and death while it is in, especially if no iv fluid is going through it. 

So today, I brace myself for another bout of fighting to live. The PICC line either needs to be reconnected to an iv and I need it virtually for life, and/or we can think about pulling it out.

I never thought I would see a day without being attached to my ball and chain, the iv bag and the iv tubing, respectively. But you mark my words. If I have to be the first person to practically recover from the dysautonomia, you will hear my story in time. My story is your story. The only thing that differs between you and I is that the injury and the cure may be completely unrelated. This is reasonable, since all my syndromes are rare.

But you have your diagnoses, your injuries, your illnesses, and your way of dealing with your problems, just as I do. Except perhaps this: my medical school friends and I prayed with our patients and included Christ as the Great Physician.

Is it a miracle? Can I really live off and without a PICC line? We were running out of veins, anyway, and received no 'recipe' for living longer by poking in the PICC lines in a certain order that saves the best veins for last. Out of veins? Out of life.

That is what I thought before. It is how I felt and what I saw. All the answers pointed downward, as if I was on a spiral with no place to step off of it. So, I jumped. I jumped into 'fighting' mode to fight to live. I jumped into 'trusting' mode so that my life, my plans, my inclinations, and my actions were all to glorify God.

Talking to strangers on the elevator, especially the ones in a wheelchair. I was in a wheelchair, too. Perhaps if I was lucky, I could live for a couple years on the PICC line. One hospitalization, the Holy Spirit told me to 'Sit up, Stand up, and then Walk'. Who am I to argue with God? No one. God had greater faith in me than I did in myself, and He knew that someday, I would be off of the PICC line. 

He lets me know that He is in my life. It is actually quite funny, as I have found God's sense of humor. Just ask Him to show you signs, and you, too, will be given signs to encourage you in your Faith in Healing. Every day, there are medical miracles that are published. Why can't you and I be medical miracles, too, instead of accepting what the medical school books teach doctors? My body and my presentation to the doctor's office are usually unusual. A touch of my own forgetfulness, my own Altered Mental Status, and my vomiting patterns may be a harbinger of an upcoming PICC line infection, or some other new diagnosis.

Go on. Lay it on me. I submit my sufferings to Christ, as He suffered for us on the Cross. In the face of impending doom, I sing, "Holy, Holy, Holy" out of our bedroom window, and the birds, squirrels, and bunnies make their way into our front yard. The yellow and orange hummingbirds outside my window no longer fear from my presence. Perhaps they all just think that I am another animal that sings like a bird. Perhaps in perplexion, they navigate their way into my garden. God's way. God's way of giving me a gift that no one can purchase: my own forest of animals, like Snow White in a cottage with a pie in the oven. My own family for whom I have great love and mostly these days, the breatholding sound of our daughter singing acapelo to The Phantom of the Opera. 

Today, I went to a doctor appointment, Costco shopping, bouquet-making, and finally, a nap of unpreturbed stillness. Some may call it a semi-coma state, as my brain is firing away while I sleep. I can feel that my brain needs this nap time to regroup, and I praise God as I mentally visualize single-file red blood cells making their route single-file, to the tiniest, insyest, binsyest capillaries that perfuse my brain. When I reach this point, I am down for the count. I praise Jesus the Physician and Healer to work in my body as I sleep, to allow neuroplasticity and rerouting of the vital signs so that I can walk like every one else: without being on a battery. If I feel like fainting, I put my back on the wall and slide down to the ground in utter limpness. After my nap, it is as if another new day has begun and I can once again rejoice in the Lord, singing, "Holy, Holy, Holy".

Enough for tonight. I should be finishing my first book, so that you can be a part of my life and so that you can learn from the scientific and the spiritual worlds. To me, that iv bag never belonged to me. I would look at it and say, "I do not accept you in my life. You will be gone from my life forever."

Now, I look forward for tomorrow and the blessings that I can be to others. Today, a little old lady was buying groceries, and the Holy Spirit whispered in my ear, "Give her twenty dollars". I immediately obeyed, as I had seen the poor woman had overstocked her shopping cart and had to send back several items, for lack of money.

Her response? She put her hand on her heart, and said, "Who would do something like this?" We pushed away our carts to the Exit while she was still at the cash register and was presumably getting back those items she really needed. I turned back 4 times to smile and warmed my heart each time. With every turn, I could assess that she was still in shock. I raised my hands to the Lord, for telling me that she needed the money. I gave her my last twenty dollar bill and I can not convey to you how fantastically happy I was that moment. It was worth everything I ever did to land myself in that store, at that time, and be a help to her. 

I was reminded once again: we are here on earth for one another.