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The Last Good Breath

January 10th had been a good day. I had a few visitors, which always lifts my spirits, I had been working on a few orders for my Etsy shop, and we were getting back into a routine again after Christmas break. I went to bed a little early because I had worn myself out a bit.

A few hours later I woke unable to use my muscles to get a big enough breath. I couldn’t swallow, couldn’t breath, and knew I needed help fast. I quickly woke Mark, and motioned for help, and then got far away from our sleeping littlest hoping not to frighten him awake. That was about all I had left, and I collapsed on the floor, trying to conserve energy. It wasn’t long before everything faded to gray and I could hardly hear.

I was vaguely aware of the paramedic boots that tromped across the floor and scooped me up, carrying me into the night air. The next thing I was aware of as the stretcher bounced across the potholes of town was the excruciating pain and sickness that crept over me as the paramedic pushed a full dose of Narcan, throwing my body into instant withdrawal from my chronic pain medications, bringing on a slew of muscle spasms, and constant vomiting. My fight to breathe became more desperate as I choked on my own vomit gasping for each breath.

After some agonizing time in the ER, I lost all touch with reality, and woke later the next day in the ICU, biting and choking on the hard breathing tube that was down my throat, my hair a mess of blood and vomit. My respiratory muscles had weakened to the point that I could not breathe as deeply as my body needed me to, and I had been sedated and intubated.

We had already been having conversations with my pulmonologist and met with the surgeon to discuss it being time for a tracheostomy, so it was natural for these topics to surface again. They actually had time to do the surgery for me the next day. At first I objected, panicked at the rush of it all, and the lack of having my mind wrapped around it. After some reassuring conversations with friends who are doctors though, it was clear this timing was divine, and it was time to go ahead. I asked to be further sedated until surgery, so I didn’t have to spend the long hours fighting the tube.

Along with my wingman, my “Mama Sandy” was there with me to encourage and read scripture with me, and despite the embarrassing state of myself, I welcomed the presence of my dear pastor as he came to pray with me.

Despite the rush of it all, I felt peace; held in my fear and my questions, and comforted that God was walking every step along with me.

The wait for surgery felt long, but finally it was time, and I smooched my hubby as they rolled me away for a new airway. I was immediately more comfortable upon waking; the tubes removed from my mouth and throat, and now just one directly into my airway through the front of my neck.

A few days later I was transferred to a rehabilitation hospital, where I have remained for the past two weeks. It has been steps forward and steps back, and a tremendous amount of boredom and missing my babies, but each day is one day closer to home and this new way of life. My trach and vent have provided me much more relaxation with my breathing, and as we learn the routines it brings us more confidence managing this ourselves at home.

I cannot wait to get back to my family and my tribe… that comes next!

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After Surgery

I know many of you that aren’t on my social media have been waiting on updates, and I’m sorry it’s been awhile. I need to teach my hubs how to post for me!

My first surgery went relatively smoothly. They were able to remove my gallbladder, and after some initial trouble getting me breathing on my own again I came back around and was able to breathe on my own with my normal oxygen and vent support.

Unfortunately during surgery they found my gallbladder had been backed up enough that stones were forced out a duct into my liver. The hospital I was at was not equipped to deal with that, so they packed me up in a mobile MICU ambulance and sent me to the bigger hospital in town, where I was taken back to surgery to clear out the tract and put a stent in my liver. This was a risky procedure, but was also a lot shorter, and they were again able to get me off the ventilator and breathing on my own once again. I’m so grateful for each of you that were praying for that for me; I truly believe God listened and showed me his favor through your faith.

The following days brought some pancreatitis as a result of the procedure. I wouldn’t wish that pain on anyone! I was blessed with frequent visits from good friends, which kept my spirits up, but made me long for home. With the days to Christmas growing shorter I was pressing my doctors to let me free. There always comes a point I get so desperate for home that I’d rather be miserable at home than miserable in a hospital room by myself.

I made it home on Christmas Eve, a wonderful blessing to be with my people in the comfort of home. I have mostly been in bed working on pain control and breathing, and my wing man has diligently been making sure to keep my tube feedings running, as my appetite seems to have left me somewhere along the way.

At times I get discouraged that I can’t jump up and mop my floors or pack up the Christmas decorations, and my mind starts running ahead of me too fast and wondering if my days like that are behind me. My kind Savior draws me back to His words though and promises to sustain me and my family in whatever capacity I find myself.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
‭‭2 Corinthians‬ ‭12‬:‭9‬ ‭ESV‬‬

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Urgent Update

Several weeks ago it became apparent that my gallbladder is the next thing that has fallen victim to my MSA. With it no longer communicating with my brain about what to do I started experiencing some really painful complications. I was sent to see a surgeon about taking my gallbladder out, unfortunately my pulmonologist was not on board with clearing me for surgery. His concern over the weak state of my lungs is that if I am put to sleep and given a breathing tube, it will be likely that they won’t be able to wean me off of the tube, and I’ll end up with a tracheostomy.

A trach has already been on the table for some now as we watch and wait, so a part of me has already come to terms with that, but I also feel like it’s not time yet, and I know God is bigger than any complication.

A few weeks down the road and I am now admitted to the hospital because the pain and other symptoms from my gallbladder became too much to bear. I have a large team of doctors talking and working together, and the general consensus is to move forward with surgery, likely today now that it is an urgent situation.

I am completely at peace with what the Lord has for my future, but would you pray with me that my lungs will stand strong and I will be able to tolerate surgery and wake without a breathing tube or trach? I believe God wants the best for me, and I know He delights in showing His power when we ask. Regardless of the outcome, I know my God is good and there is no shortage of his goodness and grace in my life. For as many days as He gives me, I will live my moments for Him.

Thank you for walking along side me and helping sustain me and my family through these twists and turns. Your love and support are priceless in our lives. ♥️

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Plot Twist!

Well surgery didn’t go as planned. Fortunately we are well versed in changing plans!

I was admitted through the ER Saturday with an infected VP shunt for IV antibiotics. They took me to surgery Monday.

Monday night after surgery I had a series of seizures. I was intubated in the ICU and don’t remember the rest of the week. They are caring for me and trying to get me back home. Thank you everyone who has brought meals or watched my kids or sent flowers. We could not carry this weight without our community. Your grace runs deep.