Tracheostomy update

I recently spent four days in the hospital to try decanulation. Monday they removed the trach and I hastily posted a picture of my taped up stoma on facebook! But I didn't feel like I was breathing well, despite having an oxygen saturation (SpO2) of 99% Sure enough, they scoped me and found a polyp in my windpipe where the trach was. Wednesday in the OR they also found much scar tissue where the stoma is, making me feel like I was breathing through a straw. 

Needless to say, they did a lot of work opening the windpipe and I will go back in 3 months to see if there's more "excavation" to be done, or if I can safely be decanulated. Keep me in prayer. 

A thing that I notice about the hospital in contrast to the nursing home is that people are much more considerate. It's not the actual people, who are far more diverse, but how the floor is managed. You can tell the hospital staff is trained to knock gently on the door--what a concept! Here, people just come right in or knock like Con Edison coming to check your meters first thing in the morning! Nursing home staff are so used to working with severely disabled, institutionalized people that you just become another body to clean. Your body parts become inanimate objects that need to be moved out the way to get the job done. I hope the increasing number of young people in nursing homes will prompt change in how service is delivered and the ratio of staff to patients. 

surgery, tea and my father's business

Tea has been especially helpful after I had surgery last tuesday. I ended up in the OR a second time on wednesday to insert a #4 fenestrated shiley trach. Initially, they put in a button trach to hold open the stoma while the inside of my trachea could heal without reacting to a plastic tube. Unfortunately, it could not stay in, and I had serious mucous plugs to contend with. Thank God my father stayed to watch and care for me until I stabilized that evening and Dr. Guardiani was close to do damage control. Usually, an intern is on call overnight but has no idea the specifics of your case. My father even had to stop him from reinserting my trach the wrong way! 

Again, Roosevelt Hospital did not have the appropriate catheters to suction me with and my father had to bring some from Beth Abe, as well as cath kits. Bonus of being a quad. The good news is that the upper portion of my wind pipe is open and I can speak. If it continues this way for several weeks as the trachea heals, it's a good sign I can be decannulized!

Back to tea for a sec...right off the bat I know I like raw pu-erh tea better than ripe. I like the astringency and 'greeness' of it. I found the ripe pu-erh less pungent and dynamic than I imagined it would be. 

Today I tried one of the oolong teas I got from Yunan Sourcing: "Imperial Tie Guan Yin of Anxi" Autumn 2012. It smells and tastes wonderfully floral! I was surprised how big the leaves opened up! Definitely a fan. I don't see myself getting too intricate in this tea business. I enjoy tea and will continue to try new ones as I find them but I really need to be about my heavenly father's business. Lately, that has been being ready with an answer for those who oppose even the notion of my heavenly father (1 Peter 3:15). People will bob and weave on the issue of relativism because it's self-refuting and once I point it out, it's embarrassing for them to pursue it. My father pointed out that people really are displaying their hatred of the Gospel when they react the way they do. It's amazing how people avoid critically examining their own beliefs. They can't possibly imagine any other reality besides the one they were taught: that reality is simply what you believe it to be. This notion is absurd and self refuting! I had to learn a bit of philosophy to understand this, which I'm not a fan of, but it is helpful when speaking of the metaphysical. The statement: "what's true for you isn't true for me" is a self refuting statement according to the law of non-contradiction. If the statement were actually true, having it not true for someone else would be impossible! 

Another absurd statement: "You shouldn't judge!" It's funny how secular people will rip scripture out of context when being righteously judged for their sin. Someone recently said this to me, bringing up Matthew 7:1. I explained that Jesus isn't saying that we shouldn't judge at all, in fact, he gives a few examples of how we should judge in the rest of the chapter. Jesus is speaking of judging apart from God's standard. I went further to say, "if you feel I shouldn't judge, why are you judging me? Why judge anyone at all?" She responded by saying she didn't judge me, only thought my ideas were skewed. Having any kind of opinion requires judgement. In fact, our days are filled with judgements as we walk, drive, or decide anything! I asked a few times how she knows right from wrong, where do we get our notion of rights? My generation is the post-modern generation, where we've been taught that morality, our identity and even truth itself is relative. When asking these crucial questions, they squirm and revert to insults. 

The bottom line is there is overwhelming evidence that there is a God who created the universe, who's eternal, omnipotent, omniscient, personal and creative. Only the Bible describes this kind of God and attests for it's accuracy historically, scientifically, archeologically, and textually. Paul is dead on when he reasons that people suppress the truth in unrighteousness (Romans 1:18-21). They refuse to believe because they want to deny God and hold onto their sin (John 3:18-20). 

Unfortunately for them, God exists wether they believe or not and they are accountable to him wether they believe or not. Truth doesn't change with feelings/belief. It's better to follow the truth now then to face eternity in damnation for rejecting it. The body of Christ will not face the great tribulation, but we will probably see some pretty dark days before the rapture. Our economy is failing, and Christian persecution, even in the west, is on the rise! Not to mention possible nuclear war with Iran who really wants to destroy us along with Israel! The Obama administration says it stands with Israel but actions speak louder than words. Israel is still God's land and those who seek to divide it will get burned. 

Answered prayer

A minor mechanical flaw of my t-tube is what's keeping my voice from being sufficiently audible. Being too long, the tube is holding my vocal cords open, letting too much air escape. I'll head to the OR (again!) to have it shortened next week. I'm thankful for answered prayer that my vocal cords are fine and my voice will be restored.

Finding my voice

It's been 2 weeks since I've had my t-tube reinserted and my voice is still just a whisper. My throat doesn't hurt anymore, but my voice is just barely existent. It is very frustrating but I'm thankful for breathing well and sleeping well. Yesterday, I was able to go to church for the first time in weeks which was a blessing. I'm looking forward to being more active, voice or not, and seeing what the Lord has for me.

As hard as it is to not think on a day-to-day basis due to my condition, I'm venturing to find an abode of my own outside of Beth Abe. I imagine it will be quite a process so I figured I'd start to hopefully move in favorable weather. Quads and cold don't mix!

I've spent many months in physical and spiritual trials, sick with UTIs, going through major bladder surgery, and then contending with trach problems. I can't tell which was worse. Before that, I was gearing up to go back to school and had a new interest in grant writing and non-profit management. What do I do now? Where do I belong? How will I be a productive member of society? I want to be useful. I don't want spend the rest of my days not making a mark as I've always imagined. I grew up in the middle of rallies against drugs, corrupt landlords and school inequality. My family was active in the church feeding the homeless and donating clothes. I imagined myself as a public servant in some capacity which I think everyone should be. I have to reassess goals and take things slow.

Post Op

I got back to Beth Abraham on thhursday, after 8 long days post-op Mitrofanoff procedure. I had an NG tube in for four days which was very difficult. It had to be reinserted 3-4 times because it was dislodged. Succtioning was very uncomfortable with the NG tube. I struggled to hold the tube in place, trying not to gag it out. I couldn't speak because they changed my trach to a shiley. Amazingly, it wasn't that hard for people to understand me. I annunciate well and most times, people were attentive.

I have mixed feelings about nursing care. I went to a "step-down" unit located in 8 Center Guggenheim Pavilion, where the staff seemed to complain about patients if they called too much. That included me, since I needed succtioning and turning. I made a complaint to the adminstrator. My father spoke with my neighbor and confirmed the complaints.

I was very weak after surgery and laying on a pegasus bed made me less mobile. Everrything was uncomfortable after a few days! I was also off from all of my meds, so I went through serious withdrawal. I hallucinated scenarios and at points was convinced that I needed to escape and my family was struggling to "free me." I disconnected my I.V. lines and refused to be scanned until I saw my parents. I had to seriously focus on the Lord then to get over my state of mind and discomfort. Needless to say, this is a very difficult surgery to get through!! By the last day, I couldn't wait to get out of there. I wanted my hair washed and to get in my chair. I tried yesterday, but it was too soon. Now I am practicing sitting up, eating better and stretching out my arms/hands. In two weeks, I'll go back to Dr. Vapnek to take out the stiches and utilize the stoma for the first time!

So far, everything is a success. My new T-tube, however, I'm not fond of. It seems smaller than before, and it is very difficult to get secretions up. So far, I cannot uncap myself, and succtioning is more of a serious matter. Please pray for conntinued healing in this area.

It is easier tto eat. I no longer have that volcanoe feeling in my bowels. This should get even better with time. I'm looking forward to gaining weight and exercising again. I depend heavily on God's grace every day; for comfort, peace, healing, strength. I'm not brave at all. I cling to God's word for hope that he will deliver and he has been faithful.

Encouraging Scriptures for those who suffer

Trust in the LORD with all thine heart; and lean not unto thine own understanding.

In all thy ways acknowledge him, and he shall direct thy paths. Prov. 3:5-6

My surgery was postponed due to trach complication! The only way to have the surgery is to take out the trach, put in a shiley trach during the surgery, and then the next day, have the t-tube put back in! It sounds incredibly risky but I'm trusting the Lord, not my understanding.

I have set the LORD always before me: because [he is] at my right hand, I shall not be moved.

All I know is that I love the Lord with all my heart and I am forever grateful for His mercy saving my life and showing me His Truth through the sacrifice of his son Jesus. His Spirit has pressed upon me to share my story, that God has been gracious and merciful. Regardless of anything in my life, God has been faithful. On the day I broke my neck, I seriously called out to God and trusted him with my life. Nothing else mattered. Since then I've learned to depend on him and hear his voice through his word.

Paul says in 2 Corinthians 1-

"And our hope of you [is] stedfast, knowing, that as ye are partakers of the sufferings, so [shall ye be] also of the consolation."

"For we would not, brethren, have you ignorant of our trouble which came to us in Asia, that we were pressed out of measure, above strength, insomuch that we despaired even of life:

But we had the sentence of death in ourselves, that we should not trust in ourselves, but in God which raiseth the dead:

"Who delivered us from so great a death, and doth deliver: in whom we trust that he will yet deliver [us];

"Ye also helping together by prayer for us, that for the gift [bestowed] upon us by the means of many persons thanks may be given by many on our behalf." 2 cor. 1:7-11

Many people have prayed for me and continue to pray for me. I'm not crazy about the surgeon working on my t-tube. But I have the Great Physician on my side and he's going to make things happen! I cannot be plucked from his hand! (John 10:27-30)

"Blessed [is] he that considereth the poor: the LORD will deliver him in time of trouble.

The LORD will preserve him, and keep him alive; [and] he shall be blessed upon the earth: and thou wilt not deliver him unto the will of his enemies. The LORD will strengthen him upon the bed of languishing: thou wilt make all his bed in his sickness." Ps. 41:1-3

The Lord answered my prayer with this Psalm as I prayed about anxiety over my pain, over the surgery decision. In the interim, I fight off urinary infections and it's extremely painful. It's not sensational pain, but a searing nerve pain that's difficult to tame. Sometimes all I can do is pray and eat God's words, cling to his promise that this suffering is nothing in comparison to the Glory that will be revealed in the last time (Romans 8:18). I imagine those who are in prison for sharing the Gospel in many other countries where it is "illegal." People are tortured, maimed and killed. When my pain is at it's height, I shake. "Even so, come, Lord Jesus." (Rev. 22:20) I also pray for Joni Eareckson Tada, who suffers from excruciating pain. Her testimony has been a blessing to me in my journey, particularly her latest battle with pain and her drive to work for the Lord! Listen as she reads in "A Place of Healing."

"He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty. I will say of the LORD, [He is] my refuge and my fortress: my God; in him will I trust. Surely he shall deliver thee from the snare of the fowler, [and] from the noisome pestilence. He shall cover thee with his feathers, and under his wings shalt thou trust: his truth [shall be thy] shield and buckler. Thou shalt not be afraid for the terror by night; [nor] for the arrow [that] flieth by day; [Nor] for the pestilence [that] walketh in darkness; [nor] for the destruction [that] wasteth at noonday..." Ps.91:1-6

This Psalm has been very strengthening and encouraging as I go through many physical trials in and out of the hospital. I have a CD called no storm too Great! that prays focusing on this Psalm. I highly recommend it for people who need calming meditation on God's Word!

"And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints. Pray also for me, that whenever I open my mouth, words may be given me so that I will fearlessly make known the mystery of the gospel, for which I am an ambassador in chains. Pray that I may declare it fearlessly, as I should." (Eph. 6:18-20)

Thank you for your prayers. Continue to pray for this upcoming surgery that should be in early-mid March. Pray that all goes smoothly with my tracheostomy and my bladder surgery and I recover well. I want to be strong and back in my chair!

Maranatha

Boston news

Last tuesday, I went Mass General for a bronchoscopy to see what Dr. Mathisen could do about my tracheal stenosis. The plan is to regain more useable trachea before doing a resection. Next month, I'll get aT-tube in which is shorter than the trach I have now. Then a few months later, they'll do the resection, which is, cutting out the scar tissue from my trachea and sewing the good ends together. I'll then spend a week with my chin sewn to my chest while my trach heals! Pretty fuckin wild, they're gonna have to give me reeeaally good drugs to behave! It's funny, every time I go under, I try to remember going to sleep. Instead, I'm just waking up to them wheeling me into the PACU. This time, my mouth was swollen and sore from the scope they put down my throat. I can imagine them stretching my mouth to inhuman proportions, cracking jokes along the way. I don't care. I'm exactly where I need to be to get this thing out. Mass General is a huge hospital but very well organized. Unlike Mount Sinai, I didn't wait long for an X-ray and they never sent me anywhere without a nurse! My nurses were incredible and the trach care was on point. My dad was cool to arrage TV services for me. I watched "American Idol" for the fiirst time in ages. Did anyone dig that gothic/mideastern "Ring of fire" cover? That shit was wild!

I forgot to mention my birthday last month. I actually celebrated mine on fat tues. I went out for the first time to socialize at a bar/club with friends. It was also a fundraiser for the Nat. Spinal Cord Injury Assoc. So lots of chairs! I felt comfortable and got decked out. I actually wore make up! Bright red lipstick and stiletto mascara. I wore a white glittery mask and had a girly punk look, sporting red chucks and a leather bracelet. I had a red tank top giving nice cleavage and a sheer blouse over it with silver buttons that complimented my silver star earrings. I strapped on a decent buzz and had a good time. A few of my college friends were there so it was cool. We're all older and chiller now so no one was lining up shots. I should have taken pictures but I was having such a good time, I forgot. The only awkward thing was not being able to speak to people in a loud atmosphere. It felt good to dress up and feel like my old self again (somewhat). Happy 29th.