Moving Day

Well, here we are. The final night in our home together before we move.

This might come as a shock to some of you, as I haven’t blogged in so long, nor have I talked much about us house hunting or looking to move prior to the purchase and sale of our homes. The thing is: we weren’t looking to move. Not really.

Matt and I have been discussing Jack’s education since was born; and more intently over the past year (or more): if we would try homeschooling, where he would go to school if not, and how to go about choosing a school for him. While kindergarten is still a whole year away, I was quite sure homeschooling was off the table. Firstly, and perhaps most obviously, we don’t know where I will be health-wise by then. Secondly, even if I am healthy enough to rise to the challenge, our child is such an extrovert that to homeschool him as an only child (or an the only school-aged child for the next 5 years, at least) would require an enormous amount of effort on my part involving him in extra-curriculars, a homeschooling community, etc— just to keep up with his social-emotional needs. We have noticed him thrive in his preschool classroom over the past year, and feel confident that being in a large group is where he feels most at ease. So the next question became: where do we send him? To the nearest school? Or should there be more research weighing in on this important decision? We decided to do our research, until it did some of itself for us. The nearby school will be closing down to rebuild over the next few years, which means busing to the next closest school, and then changing schools once it is back up and running—with three times the population than it held before.  If we wanted Jack to be close to a school that wasn’t in our district, moving within the next year was something we needed to strongly consider. Still, there was no rush.

House-hunting has always been a hobby of ours (Matt’s, especially). We love our first home, but find it fun to see what is out there, how it compares, etc. This summer, despite feeling more ill than last, left me with the desire to get out more, and enjoy the outdoors with my family. This brought us to bike shopping. I haven’t owned a bike since my parents’ bought me one when I was ten, so we both thought it well overdue to see if I could find one that my body could tolerate for even a short period of time. I found a beautiful, vintage-style cruiser bike at a store in Sherwood Park. I was permitted to “test drive” the bikes, and was enamored with the beauty of the area that we were in. I was able to find a bike that I can ride for short trips at a time (10-20 minutes or so, depending on the day); and as we headed home with my new bike in the back of the truck, we came across a house for sale in the very area I loved so much! We called immediately and scheduled a showing for the next evening.

Well, that house didn’t turn out to be “the one,” but it did spur us on to looking at others, and meeting a lovely realtor to guide us along the way. We spent many summer evenings looking at houses, getting a feel for what we liked, and looking into the schools nearby. It was a lot of fun spending so much time out together as a family, doing something Matt and I have both always enjoyed. At one point, both unsure if we were really looking seriously, Matt questioned the idea of moving while I was still sick. Maybe it was the daunting workload that moving entails that I wouldn’t be able to fully participate in; or maybe he was waiting for me to get better before beginning our “fresh start”;  or perhaps he was just trying to get a feel for where I was at! Whatever the reason, I had an answer for him: “I don’t want to put our lives on hold until I’m better. If I am going to be lying in bed for an indefinite amount of time longer, I want to be lying in a different bedroom... one with more room, and an ensuite!” ;) In my heart I think I felt that I needed this change. Since starting my meds again I have felt like it was a one step forward, two steps back kind of deal; I knew I was making progress, but I couldn’t feel it (other than in really uncomfortable ways!) I have felt for SO long that my life has been on hold, and the image of me, lying in bed, static; nothing changing but for the blonde little boy that keeps reappearing in my doorway, a little older each time... it was the nudge I needed to know I was looking for real.

In a whirlwind of events, we came across a house that finally fit the bill. This meant suddenly having to prepare and list our house to sell in a matter of weeks, try to find a preschool mid-August that would accept our son so late in the running, and maintain our home so that we could show it at a moment’s notice. I have been pleasantly surprised by how involved I have gotten to be in all of this. Though pushing myself way beyond my abilities, (and crashing in a big way more than once), I have relished the rush of a hard day’s work, and the fatigue (one different from the constant state I am in) at the end of it. It has been exhilarating and exhausting.

I haven’t written in a long time; firstly from feeling as though I had nothing but the same old fight to talk about. No big mix-ups, no awesome progress, just fighting this in the only way my body knows how—by feeling very, very sick along the way. In my frustration, I left my blog sit for awhile. Then, in all of the busyness of house-hunting and getting ready, I was simply too busy (and tired!) to write an update. But tonight brought on too much nostalgia to sit quiet; and so, as I prepare to leave my very first home of my own; my first home with my husband (and as a wife); I look back on all of the beauty and trial this house has held: The moments that were so exhilarating, frightening, joyful, entertaining, frustrating, sad, and beautiful.

Starting life away from “home” with my new husband; figuring out what it meant to live with someone other than my family, and creating one of our own in each other. Training a puppy that would one day become ours; and years later, leave with a piece of our hearts. Hosting friends and family; cooking our first turkey together; celebrating holidays, birthdays, engagements, new babies, and Jack’s baptism; throwing parties and sharing meals. So much of this home was the people who brought and shared life with us. 

This was the place where I housed a child inside of myself; and brought him home less than 24 hours old, to the building that would house him for the next 5 years of his full and joyful life. Where I watched him as he grew, and learned: to roll, sit, scoot backwards, crawl, walk, and run. Where his babbles and giggles turned into stories and speeches, and his laughter fills the halls.

Our kitchen was a place of fear and flames, renovations and frustrations, which spanned the whole floor wide. It was the place where Jack would crawl as fast as he could towards our patient puppy, 

sights set on her bed, as she begrudgingly moved so he could sit— grinning and victorious! I made batch after batch of homemade baby food at these counters, and loved every minute of it.  It was also the place that I lost my vision shortly after calling in sick to work, and where my struggles with health began.

 

My bedroom: a place of love in the most pure of forms; sacrificial being at the top of the list. Where my new husband took care of me when I was too sick to sit up, putting on my socks when my feet were ice cold, and a makeshift bib for the meals he prepared for me that had to be eaten lying down in bed. This bed has known the love of a child who knew not why his mother can’t move or lift or play with him, but will explore the world through books for pages on end. Having “picnics” in bed, and making shadow puppets on the walls. Sharing cuddles, and more family prayers than there are days to hold each one. These walls have heard the frustrated tears of a mother and wife who wants nothing more than to take care of her family; and holds more medical devices than I ever knew I could become comfortable with.

This house—so full of memories, each one important in its own way, helping us to grow in love; and ultimately, I couldn’t have asked for more. I thank God that what makes this house a home are the memories, and that we can take our memories with us wherever we go; adding on, and making new ones. I look forward, with a tear in my eye, to this next chapter in our life. A chapter of healing and growth; drive and ambition. A place to love and be loved, and to share that with all who enter our door.

 

Your prayers would be greatly appreciated as we finish the last leg of the race; moving in and making this new house our home. As Jack starts a new school year, with new teachers and friends; and that this change would be a positive one for my health; that we would be moving forward in more ways than one.

Blessings and love,

Kate 

 

“O Lord, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure.”  

Isaiah 25:1

 

“Show hospitality to one another without grumbling. As each has received a gift, use it to serve one another, as good stewards of God's varied grace.”  

1 Peter 4:9-10

Ripples

Just a quick update for those of you wondering how things went at the doctor's last week:

After a long drive, we headed straight to our doctor’s office as soon as we got into town. She was able to repair my damaged line in a half an hour or less; taking the utmost care in sterilizing and handling everything involved. Fortunately we were able to salvage the parts of the line needed, as opening up a sealed sterile kit only to use the parts that we needed, and then having to throw out the rest, wasn’t a possibility. When my doctor inquired with the O.R. on the matter, they gave a giant “NO” to the request, as one Groshong catheter kit costs—wait, do you want to guess? Because I couldn’t believe it! All I had to say was, "Thank God for free healthcare!" One line costs eight hundred dollars. And to think, this was my second (and nearly third) Hickman! I can’t begin to imagine how much I have cost the healthcare system; and how little this would have cost had we caught it at the start!

The good that came out of this is that my doctor contacted the brand’s rep and asked if there was any way to get individual parts. Up until now, everywhere we looked only had complete kits. It turns out that because of my line failure, and the subsequent call to the brand for separate parts, the rep will be visiting in two weeks time to discuss the needs for spare parts; and potentially even bring samples in the meantime! This is two weeks too late for me, however; but two weeks nonetheless! And while this road is difficult, frustrating, scary, and seemingly impossible at times, things like these seem to make some sense of it all for me. If I can pave the way for a smoother treatment for others, just as others have paved the way for mine, then all of this is worth it. It would be even more worthwhile if my journey brought so much awareness and change that Canadian testing was accurate and treatment was easy get— but, I will hold on to the words of Blessed Mother Teresa and think instead, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” These “ripples,” among many other graces, give me the strength to keep going; especially when I feel like I have none.

Thank-you, all of you, for your many prayers! They were heard, and answered; and I am beyond grateful that God’s will matched my own on this one!

 

Many blessings in the days ahead,

Kate

“It is God who arms me with strength and makes my way perfect.

 He makes my feet like the feet of a deer;

He enables me to stand on the heights.

 He trains my hands for battle; my arms can bend a bow of bronze.

You give me your shield of victory, and Your right hand sustains me;

You stoop down to make me great.

You broaden the path beneath me, so that my ankles do not turn.”  

Psalm 18:32-36

Are you SERIOUS?!!

Well, I didn’t think I would be writing this soon again. At least, I sure hoped I wouldn’t need to.

My line—my new line—has been punctured. I don’t know how, or why this happened (or keeps happening to me, for that matter!) All has been healing and performing well, until Sunday evening when I started my pump back up, and I felt liquid spurt out of my line in rhythm with the machine. At first I thought maybe the connectors weren’t screwed together all the way; but sure enough, I looked down, and saw this:

 

In case you can't tell, the yellow tip should be inside the tube, not poking out!

Since it is the type of catheter that doesn't come with, or typically require, a clamp (unless, that is, it becomes compromised) I was without. I had to rig one up using a chip bag clip and some medical tape to ensure it stayed locked tight to prevent infection from traveling up the line, and into my heart.

Monday was spent with my sister-in-law  driving out to see my regular nurses who couldn’t do anything for me; wrangling my four year old and his two-year-old cousin; driving all the way back to an ER in town where they STILL couldn’t do anything for me, and going home defeated. Thank heaven for my sister-in-law (and brother), who took Jack home when Matt met up with us at  ER so the poor little guy didn't have to put up with all of the boredom and waiting that we had to! Also, thanks to the kindness of a good friend, we were able to send a prepared meal home with my family, since by this time, it was well into the dinner hour.

The whole day I thought to myself: why is this happening? I know I need these meds—I can hardly form a full sentence anymore the Lyme is taking over so bad. The greater question is: why does this have to be SO hard? I don’t want to make another 6 hour drive again so soon. I am weary just thinking about it! I know that I should be thankful I have a doctor that is willing to fight alongside me, despite the distance between us; but perspective gets skewed in the midst of trial.

Prayers, please, that my doctor can fix this without having to remove the line and perform yet another surgery; for a positive frame of mind; peace; and safe travels. We hit the road first thing in the morning!

Blessings.

Kate

“My comfort in my suffering is this: Your promise preserves my life.”

Psalm 119:50

“It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”

Deuteronomy 31:8

I figure I should write this before a Herx hits again so hard I cannot think.

Surgery went well. It was slightly different than last time; since my port had already been removed, it was less invasive than before. Because it was less invasive, I was denied any of the strong painkillers when I woke up, and only given a couple of Tramacet, which works about as well as Tylenol for me. The thing is, because I am in constant pain, my brain processes it differently. My threshold is lower than it once was, because the pain receptors in my brain are basically fried. So, while a procedure of this kind may not require the heavy-hitter painkillers for others; for me, I was struggling greatly. I was in and out of consciousness afterwards (still waking up from being put under, I suppose) and at one point I even dreamt that they offered me cough syrup in my response to my requests for pain meds, as, “it says on the bottle it is good for chest pain!” I woke up thinking the nurses were a bunch of idiots sorely mistaken, and then realized it was all just a dream.

It turns out my surgeons were quite pleased with how the scar from my port removal has healed (which came as a bit of a shock to me, because I think it is pretty gnarly); but apparently the scar tissue from the previous port exchange left the scarring quite deep, and so far it is healing as cleanly as possible! (And hey— I’ll take all the good news I can get!) My neck was left significantly more painful afterwards, as it was more difficult to route the catheter through the vein this time due to scar tissue that had (not surprisingly, it seemed) built up there, and had to be cleared out before proceeding.

New Hickman line, old scar, and my sad neck

A different brand of catheter was used this time (still making it a Hickman line, but with a Groshong catheter, which works slightly differently, and is different in size); and I have to say, I am so much more comfortable with the looks of this one! It is—dare I say—worth having the last one fail, I prefer it that much more! It looks very similar to my PICC line (the line I started out with) in size and color; and has a butterfly clasp that is sutured to my chest to keep the line from moving until my body has healed around the internal cuff, which is also much higher up (in case the stitches come out? I sure hope not!) The surgeon joked beforehand that he would, “stitch, glue, tape—whatever we have to do to keep it in place this time!” Which I have to admit, was kind of neat to hear, as the more often I see him, the more of a personality I get to see. I have a third fourth access scar on my neck (from routing two ports, and now, two Hickmans); and potentially more scarring, as the hospital failed to read my bright NEON orange bracelet stating my latex allergy, and used latex Steri-Strips to suture my neck wound closed. This resulted in major blistering, which turned into what looks like burn marks, in the four places the tape was adhered to. The entrance wound itself healed beautifully this time, though!

A new device has left me with new methods of bathing; because water had leaked into my dressing twice (a big no-no) while only sponge bathing, showering was completely out of the question. My hair, which I decided way back that I was growing out until I got better, was found impossible to wash by any home devices; between it being down to my hips, and with my neck still hurting from recovery and all. SO, after going the longest I have ever gone without washing my hair, I went to a salon to get it washed. I got some funny looks, and more than one, “You just want it washed? Not blow dried, or styled at all?” But when all was said and done, I was pretty grateful!  Now, I feel there should be some sort of contest to guess how long I really went without washing it. But, for lack of a (decent) prize, I will tell you: NINE DAYS. That is right, people! Even longer than when this all started with meningitis! (And that is only because then, my dear mother washed my hair from bed, as I lay with my head hanging over the edge with a Rubbermaid below me. Now that is love! If only my poor neck could have held up my head, and all this hair, this time around!)  

I started IV antibiotics (for the first time in over 5 months!!) the day after we arrived home. True to form, a Herx kicked in on day 3, and by day 4, all I could do was lay flat in a dark room, and sleep. It got to the point at times where it was so bad I couldn’t even sleep for the severity of symptoms! I had truly forgotten how hard treatment could be, but am ever so grateful it is hitting me so hard. Why? Because that means I am killing off SO much Lyme my body can’t keep up with the toxins it is leaving behind as it dies off! I am fighting this, even if I’m doing it lying down. It is quite reminiscent of my early days of IV treatments, when we were living down south, and all I could do was wake to eat, and read to Jack, before I was back to sleeping again; of a time where I was too sick to visit, to leave bed, to play. Only this time, we are pulsing my treatment, which means I am allotted breaks to recuperate for a couple of days at a time before hitting it hard again. And I pray—Oh I pray!—that this will be what leads us to the very end of this. 

I have to thank you all once again for the army of prayers that surrounded me as I went in for surgery. They kept me calm, and when I wasn't, they gave me strength to pray for peace myself.

God bless each and every one of you! 

Kate

P.S. May is Lyme Disease Awareness Month! What can you do to show your support?

“…and, behold, I am with you always even  unto the end of the age."  Matthew 28:20

I have basically been waiting on news of when my surgery would be rescheduled to post anything new. Between our doctor going on vacation, waiting for me to heal, and finding a date that works with Matt’s schedule, we have finally arrived at a time slot! In just a few short days—this Monday, May 12^th to be exact, I will be getting my replacement Hickman put in.  

There was a time in all of this waiting when I began to hope for a PICC line instead—and in fact, would still prefer one—but it is trained nurses that insert them now, not surgeons; and once they heard that I had four previous lines fail, they refused to take me on. My hopes dashed; I am left standing on this slow escalator, moving toward one of the very things that repulses me the most—unable to get off.  It is a double-edged sword, this catheter: one that I so desperately wish I could get out of needing; and yet, something I can’t wait to have over and done with, so my treatment can get back on track, and I can start making progress again.

This past month of five without IV antibiotics I have deteriorated even further than the last. My memory is getting so bad it scares me sometimes; my pain has kept me from having visitors almost exclusively since Christmas; and things that I was just starting to get used to being able to do I have had to give up once again. I am ready to start fighting back against this disease that has reminded me, almost full-force, what it has taken from me.

The birthday boy and his new scooter!

On the bright side, I did manage to get a temporary IV placed and running for over a week (they usually only last three days) starting just before Easter. It made a huge difference in what I was able to do physically, even though the anxiety and insomnia remained prevalent. I was able to celebrate Easter with my family: attend church, bake buns, and share dinner at my parents’ house. It was a long, but wonderful, day! The weekend that followed was Jack’s 4^th birthday, which I had started planning months ago (something I have to do in order to get everything done!) We decided on a house party for this year expecting that I would feel well enough to execute it.  I did not, and It was overwhelming, to say the least. We were so much wiser last year in renting a place!

 There were things that, even last fall, I would have been able to manage; but had to let go of one plan after another as I (once again) came to terms with the fact that my capabilities were not what they used to be; Lenten and Easter activities with Jack; birthday party details; play dates, and the like. My list rapidly became shorter, and priorities clearer. I was brought back to a time in my illness where I had to say no to so much more than I had grown used to in my recovering health; only now, I am not so used to it, and the coping mechanisms had since shut down, failing to serve me when I need them to most. Acceptance is harder to come by these days; and if I am honest, many days when I feel the worst of it, so is hope.  Luckily I had an amazing team of helpers to pull it all off, and I was able to be there for Jack’s classroom “party” (at school), as well as move and mingle and celebrate Jack’s big day with him. And, it was all worth it; for at the end, he told me it was his, “best birthday EVER!!!”

He even scored his first goal!

This week, despite how I felt, I managed to force myself outside.  There are times when mental health outweighs the physical, and many of these situations were just that; the others were born of necessity; and a few came from just plain stubbornness that I am as sick as I feel.  The first: Jack’s measles booster that I couldn’t find someone to take us to; and the subsequent trip for ice cream as a reward for such bravery (and he was— SO brave!) I drove us where we needed to go: not far, but the farthest I have driven yet! That evening, I had the assistance and support of my dad as we attended Jack’s first soccer game. I could have stayed home, too tired, but I refused to miss such a milestone. And while I pushed through my physical strains, I am very lucky they didn’t backfire on me completely! It was a gorgeous evening, and I am so grateful I was able to go.

Two more milestones: yesterday, I drove again, taking Jack along solo (no nanny or relative this time!) as I introduced Jack to Matt’s and my love for garage sale-ing.  I think I have him hooked! The second major feat in our excursion: grocery shopping by myself for the first time in years; and not just without assistance, but with Jack in tow! I relished every “normal” moment, from choosing produce together, down to him throwing marshmallows into the cart (against my wishes)! There were even a few other errands in between (mailbox, drugstore, a clothing return); and came home exhausted and elated with all of the quality time I got to spend with my son. It was the best Mother’s Day gift I ever could have asked for!     

                                

To all of you mothers, grandmothers, and godmothers, to those of you who are missing their mothers, and those of you who are a mother to many by heart but not by name: I wish you a very special day tomorrow!

As for us, we will be having our celebration in the morning before we start the drive down!

Blessings and love,

Kate 

“We must accept finite disappointment, but we must never lose infinite hope.” ~ Martin Luther King, Jr.

“I am with you and will watch over you wherever you go, and I will bring you back to this land.

 I will not leave you until I have done what I have promised you.”

Genesis 28:15

Surgery and Post-Op

Oh my goodness! Where to start? It hasn’t been long since I posted last, yet so much has filled the days, I am left without an accurate perception of time. Some days have gone on like weeks on end, leaving the next full of disbelief that, “that was only yesterday?”  So, in a sense, it has been far too long, and I will do my best to fill you all in.

We had a relatively pleasant drive down to see our doctor; dry roads; spring weather; and the beauty of Southern Alberta as our view. This time, for a variety of reasons, Jack stayed in Edmonton with his grandparents. It was hard on my heart to be away from him for so long, but worked out really well for both Matt and me; as we orchestrated trips to the hospital and doctor, in between my needing to rest and recuperate at the hotel, with greater ease.

Surgery this time hit me harder than last. I was scheduled to go in for 1 o’clock, and planned to sleep every moment I could up until we had to leave. However, around 9:30/10 a.m. we got a phone call asking us if we could be there right away, as they had a cancellation (which we later found out was due to the previously scheduled patient having a Coke for breakfast!) So, we scrambled to get ready and to the hospital for 10:30. My dear friend, who visited me last time as I waited, made plans this time to do the same. It would help keep my mind off of things, and be a good time to visit before I was down and out from surgery. Even though she could come early as well it didn’t quite work out the same this time! We basically got there, signed in, got changed; interviewed; and I just had time to take off my toe nail polish (thanks to my friend bringing me remover and supplies—I had completely forgotten!) before getting whisked away. Each nurse I encountered said, “isn’t it great you could come early so you didn’t have to wait all day?!” As I thought to myself, “Um, I was going to be sleeping, not waiting...” But, I suppose I ended up sleeping anyway!

I spoke with the main surgeon who asked where I wanted the new scar to be, and was able to ask him to try to reduce the scarring that was already there. We later found out, after him questioning, that my scar looked so bad because one of the meds that I was on contained steroids, which can cause an overgrowth of scar tissue. So, while he said he would do his best to minimize it, he left the “healing it well up to [me].” 

The anesthesiologist was one I hadn’t met before, and basically gave me two options: get local freezing and some sedation; which would keep me awake but “unaware” (yeah, it doesn’t work like that for me. I have had it done for other procedures before and I was more than “aware,” thanks); or, I could be “put under.” “Put me under” I said, knowing that I did well with it the last two times, and that I couldn’t mentally handle being awake for this surgery. Well, I’m not sure what the third option was (or fourth, or fifth, or how many others there may have been), but while this one started the same as the other two (an IV and deep breathing of a tingly gas); it ended with me waking up to a sore throat because I had been intubated! Not something that I thought was part of the plan. It paled, however, in comparison to the pain in my neck and chest.  They must have read my chart, since last time it was Morphine, Morphine, Morphine, Demerol before I got relief; and started this time instead with Demerol, Demerol, Demerol—Morphine, Morphine, Morphine—NOTHING IS HELPING! Each dose only served to make me loopier, and barely touched the pain. I was drugged sky-high and in so much pain it wasn’t funny. So they brought out another derivative of morphine (dihydromorphine?) and topped me up with that, hooking me up to an oxygen tank at the same time, as the narcotics were affecting my oxygen levels. They wheeled me back after some time, and I got to eat (I thankfully don’t get nauseated from anesthetic, which is a huge bonus since they make you fast for so long beforehand), and sent me “home” to our hotel.

Double-lumen ending

The next two days went rougher than last time; I didn’t bounce back as quickly, and as a result, had to cancel plans to visit while we were there. I slept, took pain killers, ate, zoned out in front of a bad movie, and slept some more.   We had an appointment to see our doctor and have the site assessed (most especially because they couldn’t get it to stop bleeding the day before). I asked questions such as why there was only one lumen (tube on the end) instead of the two we talked about, and wondered aloud why there was no butterfly clasp sutured to my chest to keep the catheter in place. The answers: only one lumen is necessary unless one is on dialysis, and that there was a “cuff”—a thicker piece of polyester tubing—under the skin that my body would heal to; keeping germs out, and the catheter in place. I just had to be careful with the tubing until it healed. Even after healing, it had to be handled more delicately than a gripper tubing once did—which meant no more using a spaghetti strap to wrap it around and out of the way.  Our doctor carefully changed the dressing, was satisfied with how good the site looked, and that was that! After discussing a reduction in the medication that contains steroids (which I was on to pump up my adrenals and give me more energy, something I don't lack as badly as before) we decided to slowly wean off until I felt I needed them, or I was off of them completely! The next morning we packed up; stopped for lunch date; and  headed home to the child, and the bed, that I missed so much.

First pair of glasses EVER! So handsome

Because I was starting to feel a little bit better, I came down with a head cold (Murphy's law strikes again!) It wasn’t until Friday that I made it out of bed, and out of the house, for a quick trip to the mall to get Jack’s new glasses fitted. I didn’t need to be there, but felt that this was a "mommy moment" I couldn’t miss. I faded fast, and we left the mall shortly after his glasses were ready. I knew I felt run down, but besides walking, I hadn’t done anything strenuous. When we got home, the ritual of stringent hand washing and immediately changing our clothes took effect; only, when my shirt came off, I noticed my catheter tubing was way longer than before. Upon closer inspection, I was sure I could see what they called the “cuff,” laying against my tanktop—not only outside of my body, but outside of the sterile dressing! I called Matt into the room immediately—my level headed, down-playing husband, and showed him. “Oh BOY!” was his response. I knew it was bad.

Close up of the cuff 

We are so fortunate to have our doctor’s cell phone number, because at 9:30pm on a Friday night, we were able to call her an inform her of our emergency. She paused several times, indicating the seriousness she felt towards the matter, as she asked us measured questions. How far out was it? Was it still under the dressing? If so, could we just push it back in? “Three inches, no, and definitely not!” were my answers. Every time I looked down at it, I felt sick. Even if it was still under the dressing, I couldn’t have been the one to thread it back in unless it was only on the verge of coming out. My mind was racing. How could this have happened? I carried a light purse—on the other side of my body; I made no sudden movements (it would have hurt too much). I was careful not to lift Jack, even when I was sitting down. What was going on? (And a little bit of, You’ve GOT to be kidding me! Thrown in for good measure.) I was so exhausted from going to the mall while still recovering from surgery, and nursing this head cold, that there was no way I could handle the ER that night; so I was very grateful when she told us to “cover it with a [clear] dressing and go first thing in the morning.”  Which is exactly what we did.

The next morning, we dropped off Jack at my brother and sister-in-law’s house to “play with [his] cousin,” and headed to the ER.  Still exhausted, but grateful for the sleep I did get, we began our plight into the medical system. Thankfully, we didn’t have to wait long to get a bed (around an hour or so?), and a cheery nurse came in and asked what the problem was. I showed her my line, explained I had it because of Lyme Disease, and on we went.  Routine blood was drawn; and after some time, the doctor came in.

The “usual” interview was conducted. Where did I “think” I got Lyme, how long have I had it, when did I get diagnosed, what medications am I on, etc, etc? He had already pulled a list of my medications off of NetCare (online system that all doctors can tap into and see your Albertan medical files), but when I told him I was taking heparin, he seemed surprised. “What for?” he asked. “For coagulation problems,” I answered. “From what?” he inquired, and began to list off several different diseases. “From Lyme,” I told him, going on to explain that it makes one’s blood thick. “Oh, I didn’t know...” he began, trailing off as he thought the better of expressing his lack of knowledge.  And away he went.

Back came the nurse, after a group of them had crowded around the doctor, pouring over my history on the computer. This time, she had a Lyme testing kit in her hand. “Okay, dear, I’m just going to poke you one more time...” she said, chipper and sweet. “For what?” I asked. “For Lyme” she answered. “Oh, no thank you, I already have Lyme! No need for that,” I smiled, resolved in my position. Somewhat flustered, away she went.

Enter nurse #2:  Lyme kit in hand. “Just so you understand, the doctor,” (who was no more than 10 feet away on the other side of the curtain) “wants you to have the test done, because according to your file, your test for Lyme came back negative in 2011.” Sigh. “I know,” I explained, “I was tested with the C6 ELISA test, which is only slightly more accurate than the standard ELISA test—which provides a 50% false negative—because it tests for three of the 100 North American strains of Lyme, vs. the one that the ELISA test does. However, because I got bit outside of North America, the test will not come up positive for one of the 300 strains worldwide that I have caught. So I don’t need to take the test again, because I know it will come back negative.”  And away she went.

Time passes. Enter doctor once again. He also mentions the test and why he wants it done. I reiterate what I told the nurse, and explained that was why I went to the States for treatment.  “Oh where?” he said, sarcastically, “California?”  (Apparently there has been a e-mail recently circulating to doctors across Alberta—if not Canada—stating that Lyme treatment is only necessary and worthwhile for a maximum of 2 months, and that certain California laboratory testing measures are providing false positives.) “No,” I replied, “our specialist was in Kansas; and she sent for testing all over the US and Germany.” Now that he had nothing to say to that, he moved on to scare tactics. He told me how dangerous it was to have this kind of surgery done in the first place, and that I am only 28, and too young to die! He mentioned previously in the day that he had never seen a Hickman line before, but now went on to say he watched a girl bleed out on the operating table during the insertion of one of these, and nothing could be done to save her. Sure, it was a small chance—but still not one he thought I should be taking (you know, with a negative test, and all).  

After a consult with a resident surgeon (who was afraid of me  contracting sepsis from trying to save the line); an x-ray to detect  where the catheter lay inside; a blood test to see if the line was in a vein or in an artery; and “securing” the tube with “latex-free” tape (I asked); the emerg doctor decided it was best to pull it out.  He would have “sent me back” to where I got it put in, but he was, “afraid the catheter would nick the vein on the drive there and [I] would die in transit,” so, he was willing to do me the favour.  At this point, I had been assigned the male nurse; the catheter manual was read; the LATEX tape was removed (leaving welts that lasted well into the next morning); and Matt watched as what was supposed to be “slow, even pressure” during removal turn into the doctor pulling my line out like he was starting a lawnmower. For 10 minutes after (this was NOT in the manual), he had the male nurse put all his weight behind his hands, and on top of my fresh wounds on my neck and chest—for 10, full, timed minutes (you know, so I wouldn’t die of internal bleeding). It was excruciating and completely pointless for him to be laying into my fresh port scar, as it had nothing to do with the pathway of the line, or the exit wound he was supposed to be putting pressure on an inch above it.

The ripcord: i.e. my old Hickman line

Now, before thinks I am not taking this seriously (as the emerg doctor believed), I do; and I am always grateful when one errs on the side of caution. But when our 3 hour wait “to make sure there aren’t any complications” turned into a 5 hour one simply because they didn’t want to let me leave 10 minutes early (and would be busy for the next two), my frustration mounted. Nevermind the fact that they didn't check on me or my vitals once, which is why we were there! Through the prayers of everyone out there, and my own, I managed to stay firm, and mostly pleasant throughout—at times much to my own surprise! In all of the discomfort and anxiety, God was there. 

An hour into being "monitored;" exhausted

When we finally got home at the end of a very long day, we emailed our doctor down South. She said she will have to discuss it with the head surgeon on Monday (yesterday), but it isn’t likely he will want to do another vascular surgery on me, when two have failed in such a short amount of time; so we may be looking at a PICC line after all. And while I strongly dislike PICC lines, I do like the lesser amount of pain, scarring, and recovery that come with them. Only time will tell. Until then, my veins aren’t good enough for peripheral lines anymore (to my knowledge), so I will be in dehydration pain from lack of IV fluids until we get this figured out.  So now: we pray, we wait, and we pray some more.

Remember this guy?

If you would join your prayers with mine, I would greatly appreciate it.

Blessings and love,

Kate

One day, it will be me saying this:

 But for now,