To infinity and beyond--Thank you mom!

As I think back on my life, I wonder why I have been blessed with such an amazing mom. From the moment I was born, she has wrapped me in a thick blanket of love. When I was a child with endless energy, she tried her hardest to put me in as many activities as possible to provide a positive outlet for a rambunctious child. When I showed an aptitude for some of the activities, she worked various jobs to be able to provide the finances for her and me to travel across the country to compete in various competitions. No matter what the results were, I was always her favorite.

As a young adult, she continued supporting me in my various adventures. When the traveling bug struck, she happily accompanied me across the USA, Canada, Europe, Hawaii and the Caribbean. I am filled with much laughter and delight as I think about all our escapades in non-English speaking countries. Together we used sign language and a lot of guessing to decipher driving directions when we were lost. And sometimes my cheap ways provided for some hilarious stories. (Remember the time I was out of Swiss Francs and did not want to get any more? Instead of taking the gondola down the mountain, I convinced you we could walk. When the paved road turned into a mountain hiking path, suddenly we had to carry our luggage down the mountain, across a stream and back up part of another mountain. After a couple hours, we made it! And just think, we saved $5!)

When my health took a nose dive, she was always by my side. She drove me to countless doctor's appointments and stayed too many nights next to me while I was hospitalized. She was my greatest advocate to ensure I received the proper medical care. When one medical facility would give up on me, she would encourage me to seek out another medical center. No matter how far we had to travel, she would drive me to my appointments.

Throughout the years, she always tries hard to provide treats for me. Knowing my love for butternut squash, she once got me 35 pounds of squash for Christmas! (Best Christmas gift ever!) If I am in the hospital, she always tries to buy me flowers or a plant to brighten up my room. Knowing my love for tea, she recently gave me about 100 bags of an assorted variety of tea. (Every day I wake up, I am so excited to boil some water to make tea with the tea she gave me!) When I am feeling really sick, she will often drive to the store and find one of my favorite foods to cheer me up. Additionally, she often chokes down whole milk because I love whole milk, especially in my tea!

I know these last few months have been especially hard on my mom, but she has risen to the occasion. When the nursing staff kept me up all night after having surgery, my mom fiercely scorned my nurse and doctor for waking me up. (Thanks to her, the nurses left me alone as much as possible during the night.) When I could not go home from the hospital until someone  learned how to suction and change my  tracheostomy tube, she fearlessly received the training and did not complain when she had to clean a tracheostomy tube filled with thick mucus. (Sorry mom!!!) When I was trying to figure out how to wash my very dirty hair without getting water in my tracheostomy tube, my mom offered to wash my hair in the kitchen sink. (Oh, happy dance! I now have clean hair!)

Although I am very sorry my life has burdened my mom with my various health trials, I am very grateful we have been able to spend so much time together. It is such a blessing to have such a caring mom. It is such a joy to have someone always by my side cheering me on. Wherever this life leads us, I know my mom will shower me with endless love. With much love! Happy Mother's Day Mom!!!

"Love is patient, love is kind and is not jealous; love does not brag and is not arrogant, does not act unbecomingly; it does not seeks its own, is not provoked, does not take into account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth; bears all things, believes all things, hopes all things, endure all things" (1 Corinthians 13:4-7).

Just another day in the ICU

It has been a week, and I am still in the ICU. My constant need to escape the confines of this hospital has given way to boredom, then to sarcasm and now to apathy. I want to go home, but I have stopped hoping that every person I see in the hallway is my ticket to freedom. I feel like I have made friends with all the  staff in this department. There is the cleaning lady who speaks broken Englsih but always seems happy to see me. There are the respiratory therapists, the speech therapist, the dietician, the nurse secretaries, the nurse assistants, the nurses, the charge nurses, the medical scribes, the doctors, the lab techs, the radiology techs, the physical therapist, the people who come in to check the machines in my room, and perhaps a few other people who visit me almost daily. Every morning, there seems to be a parade running through my room. I sleepily watch as these folks do their jobs and leave. Since it is extremely difficult to speak, I usually just smile, nod my head and use gestures to communicate. I always try to be as pleasant as possible to everyone who walks into my room.

My goal while hospitalized is to not be a difficult patient. I try not to use my call button and try to patiently wait for the nurse or medical staff to visit my room before making requests. I also like to be independent. As soon as I am well enough to do things on my own, I do them. This sometimes makes the nurses mad because they feel I should ask for assistance. My philosophy is if I am discharged home, there will be no button to push to call for assistance. I will have to do things on my own. My goal is always to be as independent as possible before being released home.

Today, my independence was put to the test. The respiratory therapist showed me how to change out the inner cannula on my trach tube, how to change the collar which holds my trach tube in place, how to change out the ventilator tubing, how to clean in and around the tracheostomy, and finally how to replace the suction tubing which is attached to the ventilator tubing and trach tube. I think most people would be overwhelmed, but I was so happy to learn all these steps. Anything which frees me from relying on other people makes me very happy.

Now as the sun is setting and night time is creeping across the sky, I hope for a restful night's sleep. However, every night machines wake me up with their beeping noises, the respiratory therapist comes in to check my ventilator and nurses burst into my room absolutely needing to take my temperature at 3 a.m. and also to ask if I want to take a sponge bath. Oh how I long for a good night's sleep...maybe tomorrow will be that blessed day when I am granted my freedom to leave this hospital. Until then, "Rejoice in the Lord always, and again I say, Rejoice!" (Philippians 4:4).

Marco saves the day!

Yesterday, the ICU was relatively short staffed, which meant my tracheostomy and ventilator got neglected. Mucus builds up in my lungs and needs to be suctioned several times a day. Additionally, because the air is pumped directly into my lungs, it needs to be humidified. Non-humidified air will dry out the lungs, making the mucus extremely thick. Yesterday, my humidifier was out of water all day. No one suctioned my lungs until 11:30 p.m. By this late in the day, most of the mucus had become extremely thick. The suctioning was rather ineffective, leaving most of the mucus in my lungs. In a vain effort to loosen the mucus, I found the distilled water and filled the humidifier myself. I hoped the mucus would loosen up over night.

Today, I felt like I had a bad chest cold. I could not breathe. I got up to go to the bathroom and nearly passed out. I was huffing and puffing, but hardly any air was getting into my lungs. When I layed down, I was overcome with coughing attacks. The mucus was audible as a bad wheezing radiating from my tracheostomy tube. I asked the nurse to suction my lungs. He did it once, but very little mucus came out. He then called the respiratory therapist. She squirted a bit of saline into my lungs to help loosen the mucus. She suctioned the lungs once. Despite being in respiratory distress, she refused to suction any more. My nurse told me to just relax and left my room. I fought to breathe for another five minutes before summoning the nurse back to my room. Breathing was becoming exceedingly difficult. The nurse suction two more times and was able to get more mucus out. Despite his efforts, I was choking and coughing trying to breathe.

Praise be to God, the commotion of my coughing and the alarms going off on my ventilator gained the attention of the charge nurse. The charge nurse asked if my nurse needed any assistance. My nurse said no. The charge nurse came into my room and assessed the situation. He folded up some paper toweling and came to my bedside. He then disconnected my ventilator hose from my tracheostomy tube. He told me to breathe in as much as I could and cough as hard as I could. As I did this, globs of thick mucus sprayed out of my tracheostomy tube. I kept coughing and coughing and thick mucus kept erupting from the hole in my throat. Finally, after several minutes of violent coughing spells, I suddenly could breathe again! The horrible congested noise ceased coming from my throat. The coughing stopped, and my breathing relaxed back into an easy rhythm. When I was growing very tired, and things seemed to be growing desperate, God intervened, sending the charge nurse, Marco, to my aid equipped with the knowledge to free me from my torment. Praise be to God!

"I will bless the LORD at all times; His praise shall continually be in my mouth. My soul will make its boast in the LORD; the humble will hear it and rejoice. O magnify the LORD with me, and let us exalt His name together. I sought the LORD and He answered me, and delivered me from all my fears" (Psalm 34:1-4).

Good night from the ICU

As the sun sets, the visitors go home. The day shift workers make reports to the in-coming overnight staff. The doctors and therapists quietly slip out the back door. The frenzied chaos which encompasses the ICU during the day, lulls to the murmuring of the overnight crew's voices in the hallways. The patient room doors are closed; the blinds are partially lowered on the windows. An eery silence takes hold of the floor.

My room looks down the hallway toward the exit door. It beckons me, calls me during the night. Escape to freedom. Escape to a land free of being poked and prodded, a land in which you can decide when and how long you want to sleep, a land free from machines beeping in the night. I stare longing at that door. How much longer? My mind screams, "I hate hospitals! I hate medicine! How did I get stuck in this mess!?" I measure the hallway. Can I just stroll down the hall and slip out that door? As much as I want to, I doubt I could get very far. With so many machines hooked up to me, by the time I would get all the wires unhooked, someone would be bound to notice the cacophony of machine alarms going off in my room.

I lean back in bed. The obstacle is too great. Besides, once I escape the ICU, how would I get home? I have no money, and do not have a car. I doubt this tired out lady dragging a ventilator behind her would get very far. I quietly watch the seconds on the clock tick away. I know each second is a precious gift from God. But I want to be anywhere but here. My mind drifts back to my mom's conversation. She was telling me about the other folks in the ICU. A woman in her 90's who is unresponsive, an obese man in his 40's struggling to breathe on non-invasive ventilation, and a sedated elderly man. My mom has never seen anyone visit these folks. I wonder if anyone knows or cares they are in the hospital. I bow my head and start praying. Praying for these folks to not be alone. Praying for these folks to know Jesus. Although I may want to be anywhere else in the world, I gratefully pray for all those on this floor and in this hospital. May God grant them a peaceful night. "In peace I will both lie down and sleep, for You alone, O LORD, make me to dwell in safety" (Psalm 4:8).

Someday...

As I prepared for my tracheostomy surgery, I savor things which could be my last. I joyfully consume a large pot of my favorite English tea. Ah, nothing rejuvenates me like a nice pot of good tea. (Having a tracheostomy could inhibit my ability to swallow.) With the caffeine roaring through my blood, I head off to conduct what could be my last Bible study. I praise God that I have enough breath to get me through each sentence. I praise God for allowing me week after week to teach His word. I savor every moment. Will this be the last time I will be able to speak? Will this group ever hear my voice again? I hold back these thoughts and allow the abundant splendor of hosting this Bible study to wash over me. (Having a tracheostomy could prevent me from speaking.)

When I arrive home, I eat one last meal--shrimp and vegetable soup, salad with all my favorite veggies, boiled green beans, a baked kohlrabi, whole milk and a frozen banana for desert. How delicious each bite tastes. I wonder when I will next be able to eat such treats.

Exhausted and struggling to breathe, I take a shower. As the water runs down my neck, I think, "Will I be able to shower with a tracheostomy?" As I wash my hair, I think, "When will be the next time my hair is washed?" I savor the water pouring down on my head. This could be the last time I can shower like this.

The next morning, I watch the sun rise as we drive to the hospital. What a glorious sight! A multitude of birds sing "Good Morning!" to each other as I enter the hospital. The noisy symphony reminds me of the birds at my house. They make a similar ruckus as I leave for church on Sunday mornings. I wonder when I will next be able to attend a service and see my dearly beloved church family.

As I am waiting to be wheeled down to the operating preparation room, I suddenly feel the need to void some of the tea I consumed the night before. I cheerfully make my way to the bathroom. I wonder when the next time I wil have this freedom to go without assistance and without being hooked up to machines.

In the pre-op area, my breathing is ragged despite being on my BiPAP machine. I gasp to talk to the nurse. I am growing so very tired. The nurse seems surprised how short of breath I am. I wonder if she will be the last person to hear my voice. Right before I am rolled to the operating theater, a nurse gives me light sedation through my IV. Things are growing foggy. Breathing is so very hard. I pray as I go down the hall, "Thank you Jesus for all your abundant blessings. Please protect me through this surgery. Give wisdom to this surgical staff. Whatever limitations this surgery brings about, I know someday I will be able to do all things for You in heaven. I will sing and shout and joyously serve You. I can't wait for that day, that "someday" to be free of all these health burdens. But until that day, give me the strength and courage to carry forth. Amen"

Back to the very beginning...

When I was about eight year old, I suddenly developed difficulty breathing. It happened mostly in humid weather and when the temperature reached 85F/30C degrees or higher. Upon a visit to the pediatrician, I was diagnosed with exercise-induced asthma. I never did any lung function tests; instead, the doctor gave me an inhaler stating it would take away my symptoms. I used the inhaler diligently; however, the shortness of breath, chest pain and the sensation that I was trying to breathe through a plastic bag never went away. Over time, I learned to live with the symptoms.

When I became severely sick in early 2009, my chief complaint was shortness of breath. The very first test that was prescribed was pulmonary function testing. When trying to complete the testing, I passed out a few times from sheer exhaustion. I struggled greatly to breathe in against the machine. I do not recall all the specific results; however, I do remember the testing showed I had restrictive lung disease. The pulmonologist upon reviewing the results was baffled. Restrictive lung disease was usually caused by scarring of the lungs--conditions such as tuberculosis, asbestos exposure, pneumonia and various other lung-scarring disorders. These disorders show up as abnormalities on an x-ray of the lungs. Since my lung x-rays were normal, the doctor decided the abnormal test results were from lack of effort. Furthermore, it was declared all my symptoms were caused by illicit drug use. Crushed by this erroneous "diagnosis", I sought other medical treatment at other medical facilities and buried these test results.

A few months later, a doctor discovered my heart rate sky-rocketed upon standing up. After further testing, I was diagnosed with postural orthostatic tachycardia syndrome (POTS). The main gist of this syndrome is your heart rate goes really fast when you are upright. When you lie down, the heart rate will go back to a normal rate. One thing that always bothered me was my breathing. The doctors always told me my breathing was fast because my heart rate was fast. I never believed this to be true because after my heart rate would become normal after lying down, my breathing remained fast for several hours afterwards. Additionally, the more tired I was, the worse my breathing was. Despite my concerns, no one ever referred me to a pulmonologist or ordered lung function testing.

This November, when I was having significant breathing problems, a doctor finally ordered lung function testing. It was almost comical doing the testing because the exact same things happened like my previous lung function testing. I passed out and had a terrible time trying to inhale against the machine. (This time, the machine was unable to get a reading for my inhalation because my respiratory muscles were so weak.) The results showed my forced vital capacity was 20% of normal. The doctor interpreting the results did not think much of the results. I was prescribed inhalers and told I would be breathing better very soon. The inhalers did not work.

In my search for answers, I discovered neuromuscular disease can cause respiratory muscle weakness. (Mitochondrial Disease is a type of neuromuscular disease.) This manifests itself as a restrictive type of lung disorder. I also read, as soon as forced vital capacity for a person with a neuromuscular disease drops to 50% of normal, they are to be immediately started in non-invasive ventilation. Wow! I should have been using non-invasive ventilation for some time considering my forced vital capacity was at 20%. Thankfully, I never had to explain this all to a doctor. Instead, I became very sick with acute respiratory distress in December, and a doctor very knowledgeable about the lungs recognized I had respiratory muscle weakness and prescribed non-invasive ventilation.

Now, as I reflect back on all this, I wonder how long have I needed non-invasive ventilation? How long has my respiratory muscle weakness been causing my shortness of breath? On the upside, I am grateful to have found the cause to my shortness of breath and am grateful to be getting treatment for it. It seems this has just been another test in patience."Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope" (Romans 5:1-4).

Yom HaAtzmaut: Let's celebrate!!!

During World War II, one in every three Jews in all the world were killed. After the war, the Jews who survived the onslaught of concentration camps and having most of their cities destroyed were faced with a new dilemma--a place to call home. With nothing more than a determination to start a new life, thousands of Jews sought their native homeland, Israel. Amazingly, in 1948, Israel became a nation...and by God's protection, tiny Israel has survived!

Now, 69 years later, Israel bustles with commerce. They are a leading exporter of agriculture and grows almost every kind of fruit except pineapple. A tour of the land reveals thousands of tour buses packing the streets and Biblical landmarks as Christians and Jews travel from around the world to experience the Holy Land. Shops and kiosks line the streets selling every kind of sacred trinket imaginable--t-shirts, key chains, miniature menorahs, magnets, matzah bread and even ram's horns (just in case you want your own personal shofar to wake up all your neighbors).

I smile from ear to ear as I think about tiny Israel surviving for so long amidst enemies all around her. Time and time again, Israel's neighbors have attacked her. And time and time again, Israel stands her ground...and sometimes such as the Six-Day War in 1967, Israel gains more land. But really, who can prevail when fighting God? The Jews are God's chosen people, and Israel is God's chosen land. So let's break out the cake, blow the shofar and celebrate Israel's Birthday! Happy Independence Day Israel!

"Now that LORD said to Abram, 'Go forth from your country, and from your relatives and from your father's house, to the land which I will show you; and I will make you a great nation, and I will bless you, and make your name great; and so you shall be a blessing; And I will bless those who bless you, and the one who curses you I will curse. And in you all the families of the earth will be blessed'" (Genesis 12:1-3).