Sunday, 17 June 2012


A Post in Honour of my Husband on Father’s Day.

Sadly, but not entirely surprising, Matt won’t be here to celebrate Father’s Day this year; his shift-work has kept him working so hard. By the time he comes home, it will be 21 days of the twelve (plus) hour shifts he has been working, with only a single day off in the midst of it.

I wanted to write this because I am the one in the limelight most of the time. I admit-- I put myself there with having a blog and all, writing from my point of view, and usually about me. You all know how I am feeling: physically and emotionally; what goes on in my life on any given day, and how hard this disease has been on me. But there is one who goes without credit, and I think I ought to give credit where it is due.

Anyone who has met my husband can tell you from even the briefest of encounters that he is friendly, humble, kind, genuine, and hard working. (And yes, even in the briefest of meetings you will recognise the latter; he does not stop “pitching in”, wherever he may be!)

When we went down to the States, and we got the boys tested, Matt came back positive with Bartonella: “Cat Scratch Disease” (that can be contracted from a cat, like he did, or from a tick, like I did ). Only some of the very closest to him have seen how this has slowed him down. No one else would believe that it has. As a matter of fact, our neighbour friends just asked the other day when Matt was going to start his treatment. They were so impressed that he had been caring for us so hard while he was sick. They were SO surprised to hear that he has been in treatment all this time; Herxing, working, and coming home to care for Jack and I through it all.

I had a friend ask me the other day how I would do this on my own, and my answer was: I couldn’t. Without Matthew, I would have been dead a long time ago. He literally does EVERYTHING for me: from providing financially, to organising my doctor’s appointments, to compiling spreadsheets of the supplements and drugs I am on so that he can fill a week’s worth of dosettes that I may have every last pill correct. He is responsible for the roof over my head, the food I eat, the medicine I take, the caregiver I have, and best of all, most important of all—my inspiration to fight: our son. His job goes beyond being a “single parent”; beyond caregiver; beyond hard-overtime-working employee. He is more than my coach; my nurse; our housekeeper; our cook. More importantly than being my advocate; my memory; my rock; he is my husband, and the most WONDERFUL father to Jack.

If any of you wonder how I can manage this fight, it is because God gave me Matthew; and together, they gave me our son, and the four of us, well, we can’t be beat.


This is for my unsung hero. My Knight in Plaid Armor ;) The man behind it all. You are such an incredible example for so many, and Jack is so fortunate that you are his example of a father. He is blessed to have a man like you, fighting for his mommy, and for him, everyday of your life. And I am too.

Happy Father’s Day, Matthew. We love you with all our hearts <3 <3

xoxo

Kate   Jack



 "For I have chosen him, so that he will direct his children and his household after him to keep the way of the LORD by doing what is right and just, so that the LORD will bring about for Abraham what he has promised him." Genesis 18:19





Thursday, 7 June 2012

All's Well That Ends Well


I don’t usually care to write until I have all the facts in place, and right now I do not. But I think that is why I need to write; because the lack of details is driving me crazy, and prayers for peace in the unknown are greatly needed.

Saturday we made the LONG trip home to Edmonton. Before we moved, back in February, we caught wind of a doctor just outside of Edmonton who was willing to help us once we got established with the IV meds. As per our doctor’s recommendation, we decided to make a trip back to “feel out” the opportunity and see what kind of foundation can be laid to hopefully begin the slow process of coming back home.

Jack and Mommy at Bass Pro Shops in Airdrie where we stopped for lunch

As much as I don’t mind it down South (the beautiful home we are in, the family helping us that has become our own...) I have been getting increasingly homesick. A couple of weeks ago, for the first time since I started my IV therapy, I had that defeated feeling of, “how much longer is this going to take?!” The feeling of no-end-in-sight really taps the hope reservoir, I must say. If anything, this time and this trip especially are putting my focus back on how much more I need to rely on God. No matter where I am, who I am with, how I feel, what I can do, one thing remains the same: God. And I need to remember that He is, (and allow Him to be), enough.  In fact, when I let go of the reigns and allow Him to be all I need, I always find Him to be MORE than enough; those have been some of the greatest (though usually most painful) times in my life; when the head knowledge is transferred into heart knowledge, and I can step back far enough to let God be enough for me.

Our attempt to connect with the small town doctor was less than successful. He had to travel home to his motherland where his ailing father is dying. But, (we were told), everything was “set up” for us to come anyway. However, when we arrived, no one knew what we were talking about. Worse: they didn’t have a clue how to do a dressing change on a port-a-cath. Some phone calls were made by a very compassionate nurse, and we were told to try a hospital in the city. So we packed my aching bones back into the car and drove for nearly an hour longer.

When we got there, the emergency room was FULL. Thank goodness for the triage nurse! I was given a mask (so I wouldn’t catch anything while I was waiting), and as hot and uncomfortable as it was, I was so grateful as I sat amidst a choir of coughers. The nurse worked her rear end off for us until we were finally sent up to the IV clinic. 

The nurses there, while polite and accommodating, did not use the same procedures as I am used to (dare I say, back “home”??) It was the most painful port access to date, and I had to fight the urge to simultaneously swear and punch somebody. The clinic agreed to see me again next week if I still couldn't get in with my prior arrangements (I suppose it was a good thing I restrained myself despite the pain!) So, prayer number one was answered: we didn’t have to turn around and drive right back! And now, we even get to stay a little longer to figure out if this other doctor comes back, and how he plans on helping us.

I suppose this could all sound very positive right now. In all honesty, I can’t say I feel that way. I am struggling with giving my worries up to God; worries that the doctor nearby won’t be able to take us on; worries that I will have to spend my entire treatment far away from home and the ones I love.

It has been a rollercoaster of emotions, as is hard to focus on worries with loved ones around (though I am half sure when it is time to go home I will have to be carried away, kicking and screaming!). My younger brother and his wife welcomed their first son, (and my first nephew), into the world only 3 days before we were scheduled to make our trip—another answered prayer! If the only thing I get out of this trip was getting to meet my godson and stare into his sweet baby eyes, it will be beyond worthwhile! It is very unusual for me (this is my first time becoming an aunt on my side of the family), and I can’t imagine loving that sweet little baby more. Holding him was like a fresh breath of spring air to soothe my weary heart. I have wanted another baby of my own for so long (probably since Jack was around 6 months old), and I am so grateful to find such fulfillment in holding my godson (vs. the usual desperate prayer for another of my own).  What a blessing to have that hunger filled; what a gift to have someone so special occupy such a profound place in my heart. He is a hope to hold onto; a joy in the darkness of this disease! And he is a fascination for Jack, who just adores his younger cousin.

Best Cousins: First embrace <3

As my heart flounders back and forth, between worry and joy, I would hope that I could solicit some of your valued prayers (my intentions being):

-         A deeper trust in God’s plan for my life;
-         Contentment, and peace, regardless of where I am living;
-         Gratitude for the treatment I am getting (I really am so fortunate); and,
-         The strength to keep on going.

I don’t want to worry over things I cannot change. I want so badly to come home; but I want even more to be where God wants me to be, and to be getting the best care I can. If that means going back South for longer than we had planned, then-- so help me God-- I will go.

I wish I could throw a big party and see you all while we are here; that we could drink red wine and eat good food and enjoy a summers evening and eachother’s company. I am limited now more than ever before, and am busy trying my best to simply stay awake long enough to get a few visits in with the family before we make our way back. But one day...one day-- there will be a party ;) I promise!


Plenty of love, and many, many prayers,


Kate

 “There is a time for everything,
and a season for every activity under the heavens:

 a time to be born and a time to die,
    a time to plant and a time to uproot, 
    a time to kill and a time to heal,
    a time to tear down and a time to build,
     a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
     a time to search and a time to give up,
    a time to keep and a time to throw away,
 a time to tear and a time to mend,
    a time to be silent and a time to speak,
 a time to love and a time to hate,
    a time for war and a time for peace.
What do workers gain from their toil? I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.

Ecclesiastes 3:1-11



“So do not be ashamed...Rather, join with me in suffering... He has saved us and called us to a holy life—- not because of anything we have done but because of his own purpose and grace. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day."

2 Timothy 1:8-9, 12

Friday, 25 May 2012


It feels like it’s been a long time since I have written, so I figured I would whip up a little update for you.

My port has finally healed, and only hurts when I am getting a line inserted, as the nurse has to dig her fingers into my skin to hold the port in place as she tries to hit the imaginary bullseye. I expect it will stay tender there for awhile, but otherwise, the poking part and the removal don’t bother me (the latter doesn’t hurt at all!) And it is SO nice not to have a sore arm, the extra dressing, or the pain of a PICC line!

A few additions to the protocol have been made. I began thyroid meds, as my last blood results showed it to be out-of-whack. The hope is, once these kick in, I will face less anxiety/depression, and regain more energy.

I am also to start on oxygen as soon as Matt is home long enough to shop around for a tank (apparently they don’t prescribe these things...) This is to help not only with the chest pains I have been having as of late, but also with the extremely vivid dreams that I have been having (almost all of them nightmares); dreams so vivid I carry them all throughout the next day, sometimes not knowing what is real or dreamt. They, along with my seizures and poor memory are the result of a lack of oxygen to my brain (leeched by the Lyme disease), and the introduction of an oxygen tank may help with all of the above, with the potential added benefits of pain reduction and increased energy as well. For now, this is only something I will have to do at night, so I am hoping I won’t even notice it in my sleep.

I also started a couple of other meds, but, as is the norm around here, Matt would have to be my memory for me and tell you what they are and why. My memory has yet to improve, but small changes are giving me hope: my hormones are balancing out, I haven’t had a seizure in over a month, my twitchiness has gone down, and BEST of all, I have been able to pick Jack up once in awhile!

I was doing better for awhile a couple of weeks ago, but with the introduction of new meds I have been feeling pretty rough lately (That’s the way it goes—they let you regain your strength and then they up the meds!) I have been sleeping long hours again; sometimes not even waking up to eat; or, if I do, eating laying down (it’s an art, and a science, really. More of a science...it would need to be more graceful to become an art).

With the Herxheimer has come another bout of depression, which is unwelcome but not foreign. I have been very fortunate to have the support groups that I do to encourage me along and give me strength. And while they come fewer and further between, they seem to run in the same themes: How much longer is this going to take (I can’t take it anymore), feeling homesick, and the guilt, disappointment, etc, over not being the mom I want to be for Jack.

Each time, God provides me with the choice not to live this in vain; each time, an opportunity to learn from His Great Wisdom.  The lesson this time: I am right where I am supposed to be. I can be proud, and think that I could better serve, or be better suited elsewhere; but this is part of His infinite, perfect plan for me; and I am right where I am most valuable to Him. I need to forget my ideas about what is deemed “useful,” or “best” or “my job,” and just be; because in the end, our ultimate purpose is to love, and I can love right here from my bed. Not necessarily in the ways that I want to, but perhaps in better ways. In God’s ways, if He will help me to.

There are so many other things I could say right now, but for tonight, I will leave it at that.

I pray for all of you, and I am so grateful for each prayer that is said for me. I know He hears them.


Keep well,


Kate



“ Dear friends, let us love one another, for love comes from God. Everyone who
 loves has been born of God and knows God.  Whoever does not love does not know God, because God is love.  This is how God showed his love among us: He sent his one and only Son into the world that we might live through him.  This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins.  Dear friends, since God so loved us, we also ought to love one another.  No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us” ~1 John 4:7-12

“What, then, shall we say in response to this? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who is he that condemns? Christ Jesus, who died, more than that, who was raised to life is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: ‘For your sake we face death all day long; we are considered as sheep to be slaughter.’ No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” ~ Romans 8:31-39

Wednesday, 25 April 2012


Hello again! I am back, recovering nicely, and overall pleased with my decision to have a port inserted.
My surgery took place last Friday. I wasn’t to receive a call until the Thursday ( you read that right—just one day before) to find out what time my surgery was at and when I should arrive at the hospital. We have been fortunate to have company come down the past two weekends; first, my parents; and last weekend, Jack’s Godparents. Unfortunately, I began an awful Herx just days before my parents arrived, and because of it, was even worse company than I anticipated I would be. The weekend went by all too fast (in both cases), and left me longing for home and loved ones even more than before they came.
By 3:30pm on Thursday  I STILL hadn’t heard back from the hospital to let me know what time I was to come in, and I was beginning to worry; I didn’t want the office to close for the night without scheduling me in! So I called the surgeon’s office, and they assured me that “they usually call after 4pm.” Much to my relief, the phone rang less than ten minutes later, telling me to come in at 11:15am to prep for my surgery which was to take place at 1:15pm.
We arrived barely 5 minutes late (pretty darn good for a girl who takes at least half an hour to get out of bed at noon, never mind at ten thirty!) We had to sit in the waiting room until someone who could admit us called us in to fill out forms, and give me grief for being what turned into 15 minutes late (I don’t think the last 10 counted—we were sitting in the waiting room! Oh well.)
Once upstairs in my shared room (more on that later), I proceeded to enjoy the luxury of changing into a hospital gown. I was almost one of those people you see on movies with their rear ends hanging out the back, but I must have gotten lucky, and instead received the latest trend; for only my upper back was left completely exposed. (Quite high fashion, I thought-- I almost regret not having pictures to share with you all!)
An IV went in my arm , as we couldn’t use the one that had been administering my antibiotics with, because for the second of three times this week, the vein had collapsed. (Side story: the first time it happened earlier in the week my arm slowly but surely started to swell and dent funny and then get all red and hot—*shudder* God’s way, I’m sure, of preparing me once more by helping me say goodbye to the old with confidence.)
All the while, as the nurse wrote down that I had a latex allergy in a billion different places in the same binder, and then wrote it again on a neon orange wristband for everyone to notice, my “neighbours” must’ve had ten guests crammed in on their side of the curtain. All of whom spoke at the top of their voice. The youngest, I think, was in the middle of receiving help with her homework, and we could hear math equations being worked aloud. The rest spoke as though they were not sharing a room with another patient at all; their loud voices adding to glare of the fluorescent lighting and together grating on what was left of my nerves.
The grandfather (or husband to the patient) was quite endearing. It must have been 12:30pm by this point, and the adult children started asking if they could bring the patient something to eat. The patient insisted what the hospital had provided (a bran muffin) would be enough. But the adult daughter carried on to ask if the mother was sure, because she was going to get herself a ham and cheese “samich.” Well, this brought on the scrutiny of the grandfather, asking, “what do you need that for? Didn’t you have breakfast?” (the answer over a long drawn out conversation turned from “no” into, “just two pieces of toast.”) I don’t know why the lady had to defend herself, she was an adult, and it was lunchtime after all! Unfortunately for me, they all traipsed back in with yummy smelling lunches (I had been on a mandatory fast for the past 13 hours!), complaining about the fourteen dollar bananas in the cafeteria and audibly enjoying them anyway. 
Then all of a sudden, the two hours were up, and I was being wheeled away. Matt told me that he loved me, and I got too choked up to respond. And all I could think as they wheeled me away was: if something bad happened to me, he would always remember that I didn’t say it back.
I was stationed alongside three other stretchers and given a gigantic sock to wear over my hair. The nurse just shoved it on, and I wondered why I couldn’t have put it on myself. The lady beside me later got a nurse who put one on her and told her “to adjust it until [she felt] comfortable” ( you can bet I began rearranging my bangs asap so I didn’t have to feel like a dog being pet the wrong way for another second!)
 The surgeon and anesthesiologist each took a side of the bed (and oddly, a side of the coin) when presenting me with my options. Since it was the same surgeon who told me that a PICC line hurt less than a scratch, I was a little wary of his bold assurance that if I went his route of topical anesthetic and laughing gas, I wouldn’t remember a thing. I told him I was really scared, and I didn’t want to hear or notice anything once, let alone a memory I may or may not have of it later. I was told I could be “given something” for being scared, but since I had already been administered Ativan on the way down and was looped to high heaven, I didn’t think he had enough tricks in his bag to win me over. The anesthesiologist kindly offered to put me under, and I took him up on it right away.
Now, I can assure you the sensation was nothing like I had imagined from my television-only experience of anesthetic. You know how when doctors say “pressure” they really mean pressure-like pain? Well, when they told me (as I took deep breaths of oxygen) that what they were about to inject into my IV line would feel “tingly,” they really meant I would feel an awful tingly-like pain throughout all my veins and up into my mask down my nose and throat; but before I could even so much as cough, I was out.
I’ve often wondered if I would be one of those people who question where the heck they were when they woke up from something like that. (I learned I am not). I knew what had happened, where I was (well, in the hospital, I had never been in that exact room before), and that I felt like I had been shot in the chest. My neck was also sore, as I wasn’t told until right before I went in that that was what the procedure entailed (I guess they can’t just follow your vein as they go along, like they do with a PICC, they need to stop halfway through to re-route into the right vein so it ends up right in your heart.) I was quite horrified to see the bandaging on my neck, as it was made to look like the tubing was bulging out from under my skin so far it was more disturbing than the lump the port caused in my chest. (Thankfully, that was just the way they bent the bandage, and the tubing is not very noticeable at all.)
See? Barely noticeable above my collarbone. 
(The IV tubing /scar is far more prominent!) And that's gauze...not tissue, I swear!!

Day one sucked. I was given a shot of Demoral in the muscle of my leg for the pain, so when I got home I felt like I had brutally worked out the one limb, the muscle was so sore. I was given other pain killers to take home, but even still my neck was so sore I couldn’t turn my head, or sit up on my own; that, and my chest kept me from moving my right shoulder at all; so, basically between the pain and the meds I was a bit of a zombie. Our friends arrived that night, but I am afraid I was even poorer company than I was for my parents the weekend before. 
Saturday (day two) I slept all day until 7pm. All that sleep really helped with the pain, and I had some mobility return, but I was still nursing my right side and drained from the previous day’s events.
I should add that my baby  little boy turns two this week, and being that we are away, the festivities have been stretching out over the entire month, mixing in with Easter (in wherein he was far too spoiled with gifts—something we were trying to downplay in our efforts to teach him the true meaning of the holiday.) The men spent all day preparing a “birthday party” for our little guy, including making and icing a dump truck cake (from scratch!!) and buying matching balloons and wrapping paper for the gifts. Our neighbour-friends came over for cake and presents, and everyone was so kind to accommodate me by bringing the cake in my room as we sang happy birthday, and again later so I could watch the gifts being opened. Our efforts about Easter will have to be revisited, I suppose, as when the day was done, after filling up on chocolate cake and staying up late to play with his new toys, my little/big boy left the room waving and saying, “Happy Easter!!”
Birthday boy eating his cake
Monday I went in to get my port accessed so that we could begin using it. I had my dressings removed, and my incisions had healed up quite nicely (and quickly!) to my relief and surprise. I was quite nervous to have the needle enter into the port, but the worst of it was the nurse press down on my tender skin, trying to find the centre of the port and hold it still.  The needle hurt for a second, and then the strangest sensation once it had entered the port itself...as though that was right where it was supposed to be; it felt “right” somehow. I’m guessing like the idea of having a dislocated body part re-set; painful, and then everything is right where it should be. Anyway, we were educated on how to use it, and sent on our way. I had the first use of it that night, and it was great! No beeping machine, angry at me for bending my elbow, no fumbling single-handedly to wrap a sore arm up for the night. I do look even more robotic than with the PICC line in, but it is low enough that I won’t have to wear turtlenecks this summer to hide it! I found out Tuesday morning that I can still sleep with my IV running, despite its new location—yet another bonus!
I want to thank you all for your prayers; they got me through what was probably the scariest experience of my life, to date. You can be confident we are praying for you all!

 "Gee, guys, lay off the pictures...can't a guy enjoy his bottle in peace?"


Blessings and lots of love,

Kate


For I know the plans I have for you,” declares the LORD,
 “plans to prosper you and not to harm you, plans to give you hope and a future. 
 Then you will call on me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart.  I will be found by you,” declares the LORD, “and will bring you back from captivity. 
~Jeremiah 29:11-13

Saturday, 14 April 2012

Life With Lyme Documentary

As requested: the video from the "When Life Gives You Lyme," fundraiser! Special thanks to Ruth and JD for working so hard to get this up and running,

And, without further ado: http://youtu.be/Kca781n9ZZc

Friday, 13 April 2012



I thought I would start and end this post with good news. Well, at least in the sense that no news is good news, right? We have yet to hear back about the bacterial culture done on my malfunctioned PICC line from 2 weeks ago, so I am taking that as a good sign. We met with our surgeon who couldn’t confidently assure us that we wouldn’t have the same problem again; apparently they use the same lines all across Alberta, and I am not the first patient who has experienced difficulties leading to removal and reinsertion. I was presented with the option of having a central port (or “Port-a- Cath”) implanted under the skin in my chest. Like so:

Because it is under the skin, it needs to be accessed by a needle (with IV tubing attached) and remains in the skin for a week before requiring a dressing change (similar to the duration of the PICC line dressing lifespan); only this time, a dressing change involves removing the IV tubes by pulling the needle out and getting them reinserted by getting stuck with a new one. This makes it much more sanitary (smaller hole for infection to get into). It can last under the skin forever, so if I end up needing treatments/hydration less frequently, I can just remove the IV line and not need the dressing/tubing in my way. Eventually when I am finished with it, I can have it removed.

The downsides: a two inch scar on my chest. A gross looking bump: (http://upload.wikimedia.org/wikipedia/commons/thumb/e/e7/Port-catheter.jpg/220px-Port-catheter.jpg), and getting poked every week.

The pros (as compared to a PICC): I can lift more than 10lbs without causing my incision damage. So as I get better and can do more, I will actually be able to DO more! I am hoping I can cover it more discreetly; I do not have to worry about 
kinking the IV tubing when I am hooked up to the pump (and heaven forbid bend my elbow to read, or type, or crochet!); there is much less worry over infection, and it is all-in-all more reliable.

I have my surgery scheduled for April 20th (next Friday), and I’m scared. They don’t put you under, just local anesthesia and something to make you loopy/notice less. Please pray all goes well, and that I get over this grossed-out feeling I have at my mental image of what it will look like.

Good news:
  1.       My parents are in town!! Yay :)
  2.         My Neighbour-friend rented me a wheelchair, so on my “good” days, I can get out and go for walks with Jack, and maybe even out shopping!
  3.      My mood is much better these days. I don’t know if it is because I am healing or because of the gorgeous weather here, but I am feeling less burdened and more positive and hopeful than I have been in over a year.

I pray that you all had a joyful Easter, filled with the hope and promise of new life!


Blessings,


Kate

 But let all who take refuge in you be glad; 
   let them ever sing for joy. 
Spread your protection over them, 
   that those who love your name may rejoice in you.
Surely, LORD, you bless the righteous; 
   you surround them with your favor as with a shield.”

~ Psalm 5:11-12

Tuesday, 3 April 2012

I just want to thank everyone who answered my facebook plea for prayers at the last minute yesterday. I had a minor freak out at the hospital and it sure helped knowing you were there for me J I figured an explanation was due, so here it is:

Saturday night, as Matt was flushing my PICC line to begin my evening IV, the line malfunctioned and suddenly my arm, and the bedding beneath it, was soaked! We couldn’t figure out what had happened until I noticed saline under what was supposed to be an airtight bandage; the line had burst in some way-- how and where was beyond us!  We called our Neighbour Friends and they came rushing over (almost) to our rescue.  As everyone sat on the floor around my bed, we decided to forgo the Emerg at 10:00pm (based off of previous experience, they wouldn’t know what to do besides remove the line—and we wanted to stay as far away from that option as possible!) I still had one working port to administer to; so, we drained the saline from the bandage and taped my arm to mummy proportions while I prayed for it to remain sterile until at least Monday.

Sunday night I was feeling awful: loopy (from my pain meds? Still not sure about that one); a weak pulse; dizzy; weak; difficulty breathing. I was deliriously tired but could not win the fight with my OCD as I stayed up until 2am. Once I went to bed for the night, I lay there, unable to sleep until 5am. Four short hours later I was up to head out to a doctor’s appointment, and then the hospital to get my line assessed.

Once again, my doctor was very pleased with how I have been reacting to the medication (she was expecting, based off of my symptoms and her experience, for my Herx to be much more severe.) This time, we were given hope that if things continue this way we would get to come home “sooner rather than later.” (Wonderful news, but oh how I wish there was a number that translated into!)

We headed over to the hospital after, and before we got there I noticed the saline had eaten away at the glue holding the plastic dressing down over my PICC. Instead of being airtight, there was a clear pathway of air all the way up to my incision. The nurses inspected, tried flushing it for themselves, and then left to call the surgeon to get orders on how to proceed. JUST before our lovely nurse came back, another poked her head around the privacy curtain and said, “so, you’re getting your line out today, eh?” All I could say was “...I don’t know, that’s why they are on the phone with the surgeon!” As soon as she left, I promptly started to cry. I knew what it felt like to have a PICC line going in—I couldn’t imagine what it felt like to have the plastic “vein” removed! 

As it turned out, it did have to be removed. It was scary for a few reasons. First, the two lines weren’t locked where we thought they were, meaning it had been open to infection for two days. Second, as soon as the old dressing came off, I was to have the line removed (which I felt entirely unprepared for!) I asked if there would be any freezing, but the nurse kindly told me that it wouldn’t feel as bad on the way out, as it had already cleared itself a pathway on the way in. So, I said a Hail Mary, held Matt’s hand, and was told to, “take deep breaths in... and out,” until finally, it was done. I barely felt a thing!  We looked at the line and sure enough, on the underbelly of it was a 4mm break in the tubing. Yikes! Part of the line that was near my heart was collected to have a bacterial culture done to make sure that I don’t have an infection that needs to be treated before we proceed with getting another line put in.

So, while I wait for the results and the new appointment to follow, a temporary line put has been put in my hand (kind of like the ones they poke you with at the hospital, only with a tube leading out so we can hook it up for IV’s at home). It’s funny... after a month of getting used to my PICC line slowly becoming a part of me, I honestly feel like something is missing now! Hopefully we won’t have to wait too long to get the surgery set—I have no intentions of getting used to this pain in my hand!

Matt is home for the next two weeks, and our nanny went home to Edmonton for Easter weekend/her week off.  Jack is so happy to have his Daddy back; every time he heard an airplane overhead he would say, “Plane. Daddy? Work?” It was adorable and heart wrenching at the same time. We’re both glad to have him home! The last (and only other time) I was away from home for Easter was when I was honeymooning in Venice, 3 years ago...getting bitten by a tick. I missed my family then, and I sure do miss them now!

Praying for you this Holy Week; that you will experience Christ in a new way, and open your hearts up to Him as He did for us!

Blessings and love,


Kate

“I waited patiently for the LORD; 

   he turned to me and heard my cry. 
He lifted me out of the slimy pit, 
   out of the mud and mire; 
he set my feet on a rock 
   and gave me a firm place to stand. 
 He put a new song in my mouth, 
   a hymn of praise to our God. 
Many will see and fear the LORD 
   and put their trust in him.

 Blessed is the one 
   who trusts in the LORD, 

who does not look to the proud...


“Many, LORD my God, 

   are the wonders you have done, 
   the things you planned for us. 
None can compare with you; 
   were I to speak and tell of your deeds, 
   they would be too many to declare.

~Psalm 40:1-5