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