Just a quick update to let you all know what is going on. 

So after last Tuesday’s fiasco, we contacted our amazing doctor down south, who heard the whole story, and said, much to our relief, that she would book us in. She asked when Matt was off work, and I told her that he was on holidays, but that I hoped, if possible, to wait until Jack's swimming lessons (that started today) were done. She tentatively scheduled me in for the 12^th, and I let out a huge sigh of relief. It was getting done, and I would have time to fully wrap my head around it.

Saturday evening we had to race to the ER because my peripheral IV (as it turned out) had a clot in it; and as a result, was leaking when we tried to flush it, etc. So, out it came, and a new one went in. In my hand (One of the worst places EVER.). It couldn't have been more painful during or after had she tried three times. Not to her discredit-- she was nice, and seemed very knowledgeable. After searching for a whole hour to find a usable vein, and two ineffective pokes later, third time was the charm! She said that I had no more usable veins, and both she and the attending doctor said that I needed to do whatever I could to speed up my port replacement. I emailed our doctor as soon as we got home to notify her of what had happened, and see if I could put in the request.

We got a call this afternoon. "Does Wednesday work?" she asked, on the other side of the line. “Uhhh, this Wednesday?” Yes. It “just so happened” (wink, wink—Thanks God!) that an extra day was created, freeing up a schedule that was packed solid for the next two weeks. "We'll be there!" we said, and immediately I went into panic mode. I wasn't ready for this. I thought I had two weeks to psych myself up for it. We had friends coming for dinner, and we had mountains of laundry to do so we could pack! Not to mention our plans to go back to the ER to get another line placed after toughing it out for two days with a line so painful I eventually couldn't run anything through it! There began the rest of our long, busy day of preparing to leave in the morning.

And here we are! Mostly packed, slightly settled down, with a new IV (that was placed almost painlessly on the first try-- she must have been an angel!), and waiting to leave in the morning. Deep breath. Here we go again!

Thank you so much for all of your prayers over the past while here-- I know they have helped in guiding our journey and carrying us along!

Blessings and prayers,

Kate

AHHHHH! After two weeks up many ups and downs, uncertainties, and rescheduling, today I hit my breaking point.

Last Thursday, after waiting anxiously all day for the confirmation that surgery was scheduled for Monday, we got the news that the surgeon down south wanted me to get an ink test done first to see if there was anything wrong with the structure of the port. The next day, a hospital in the city called to set up the test, to take place on Tuesday the 23^rd. The nurse booking us in said surgery would likely follow the test.

Fast forward to yesterday.  After fasting since midnight (and staying up until almost 3), I was up at 7:30 am, dragging to get myself out the door. My nerves finally set in at bedtime the night before, and followed me the next morning into the hospital. We got in right away, prepped; and before being wheeled down, was told by the head nurse that after the dye test they would most likely be setting up a temporary IV since we “weren’t getting it looked into for no reason, after all.”  When questioned about the temporary part, she admitted she meant a port, as they “don’t stay in there forever.” Temporary or not, it sure didn’t sound like she meant surgery, but rather another peripheral IV…you know, the ones that last a week, max?

Matt was allowed to follow me to the operating room’s doors, which I was parked just outside of in a dark nook that I jokingly referred to as the “storage closet” while we waited; and then I looked up. A box, labelled, ‘Christmas decorations’ was on a shelf above my bed. It didn’t just look like a storage closet! The surgeon came out and explained what was going to happen. My port would be accessed, I would have contrasting ink injected…and not to worry, they would give me pain meds and sedation. “…for the ink test?” I asked, unsure of why that would hurt. “No, for the port insertion” he answered. I told him I wanted to be put under, as I was last time. Sedation doesn’t usually work on me, I said from experience. Apparently he would have needed to know that beforehand in order to book an anesthesiologist, and told me that if it were him, he wouldn’t risk the potential side effects for a procedure like this. I would, and said so; but, wanting to get off of this emotional rollercoaster, I agreed to the grand finale, and said I would go ahead with it, so long as he sedated me as much as possible. He told Matt I would be 15 minutes for the ink test; and an hour if the surgery went through.

Gripper's safety latch removed & set aside; port accessed

We went in and I was prepped “just in case.” He asked if I needed pain meds for this part, too. I declined, thinking it would be the usual port access (and not wanting to look like any more of a baby than I already seemed to!) Then a gripper twice as large as what I am used to was clumsily inserted into my port. Unable to shove it all the way in (due to size, or inexperience? The jury is still out on that one) the gripper cap hung from the end of the needle at a 45 degree angle, dangling, only half-inserted; like a large spoon laying in a mixing bowl. It wouldn’t flush, and it wouldn’t draw blood, which he mentioned anxiously. And then, without holding the port down, the gripper was ripped out hurriedly, my IVAD trying to follow. Another (shorter) gripper was inserted. This time it entered my port, albeit painfully, in full. The doctor, unable to remove the safety latch, worried aloud about the inability to flush or draw from it again, after he struggled to remove the latch off the gripper. I briefly made a suggestion as to how to remove it, but he ignored my idea, stating that the plastic would just crack. Ripping it out, once again without care, he requested a 90⁰ straight needle to use.

Huber needle inserted in port

Well, it took the poor nurses roughly half an hour to scour the entire hospital looking for one. After plenty of foot-tapping, strained small talk, and wondering what was taking so long, the doctor finally had his “old-school” gripper in hand. Because it was one made without a safety lock (with nothing additional to remove), it was much more easily inserted. He was finally able to get it to flush and aspirate this time, and the ink was injected.

The ink showed nothing. The port filled nicely, and flowed along through the catheter tubing without incident. And, even though it still burned when he flushed and filled it, he deemed it structurally sound, and therefore just fine to use—“so long as I use the [new kind of needle] to access it, and forget about using grippers”. He said the grippers and the incorrect insertion of them were likely the problem (ha!) and so long as I switched needles I would be fine to continue using my port. That was easy! Right? I asked him if he would leave the port accessed (so I could use it instead of this pain in the arm!) and strangely, he declined, saying homecare could do it (but not before inserting-- and removing-- another one to do a forgotten heparin flush)!

So, I got wheeled back to the place where I left my belongings, met the new nurse on rounds, and asked her if she could access my port for me. She obliged, using the recently recommended access needle; and accidentally broke it, thinking it had a safety clip to detach, like the other grippers (which would remove the sharp from the centre, leaving a hollow, blunt tube inside). This new needle was just that: a needle, and would stay so, pointed end and all, once accessed.

Beveled needle on a Huber needle

WELL, upon realising this, she said she wouldn’t access it again because she, couldn ‘t just let me leave like that—with a spike in my chest! (“What if something happened, and it came out, and poked you again?!”) So I asked her what I was supposed to do. “Home care,” she answered. Each and every time I need an IV run (up to 3 times a day); with a new needle to poke me each time (what the heck is the point of having a port if you have to get poked every time?!!) I told her that that wasn’t possible—I see homecare once a week for a port access; they won’t come 3 times a day! So I ask if I can talk to the doctor again. The woman was a fortress; a steel wall. No WAY was I seeing that doctor. Because my port was deemed structurally sound, there was nothing they could (read: would) do about it. Now my logic may be skewed, but see if you can follow me: if I can’t use a gripper, because that was the problem (in the doctor’s words); and I can’t use the new access needle, because it won’t suit my medical needs, then the port isn’t in working order at all, since there is no way for me use it. Make sense? I thought so, anyway. She didn’t. Finally, exhausted after going around in circles, the head nurse came back. The doctor passed along that he didn’t say I couldn’t use the grippers, but rather that he couldn’t get them to work. Okay… (even though that was NOT what he said), could they put a gripper in for me then? Oh, NOOOO. No, homecare has to do that (now)!

SO, we drove 45 minutes out-of-town to see our local doctor and nurse. Both of whom still think I need a new port, regardless of what the (“inconclusive”) test shows. So, after getting my port accessed with a gripper (might as well try), and having it burn, slightly swell, and hurt, we are now back to waiting to hear from out doctor down south (who was working until 11 pm tonight!!), so we can schedule a surgery hours away from home (…or not, since, you know, nothing has been certain in this regard); only to recover in a strange bed for days before I am well enough to come home.  Do I want to have another surgery? Of course not! But I do want (actually, need) to be able to access my port, and continue my treatment pain and worry-free.

I sure hope we don’t have to cancel Jack’s swimming lessons for this. 

Blessings,

Kate

“Come to me, all you 

who are weary and burdened, 

and I will give you rest.”

Matthew 11:28

“I am always with You; You hold me by my right hand.

You guide me with Your counsel, and afterward,

You will take me into glory.”

Psalm 73:23-24

We now interrupt your regularly scheduled program to bring you: an unexpected surgery.

Surger—whaaaat? Yes, you heard me right. I have to go in for another surgery. And I’m none too happy about it, either.  How did this come to be, you wonder? Grab a coffee (or a tea) and I’ll explain…

Three days ago, my IV pump started acting up. Beeping with my every movement, and shutting down after every three failed attempts, which it didn’t take long to register. I adjusted my gripper inside of the port, stretched, leaned-- anything to try to get it to move a little, thinking the needle was just jammed against the wall of the port inside, causing resistance. Not so. Nothing worked. I tried compressing the flesh around the port, trying to cause some movement to happen. And that was when problem number two occurred, in the form of a high pitched, “squeak!” No, I did not have a gerbil in my house. By the sounds of it though, I had one in my chest.  We fought  through, and got the pump working in the end. The next morning I woke to the same problem with the IV pump. Only this time, it was beeping every 5-10 seconds, rendering it impossible to take my medication for the next hour. Also, by this time, all I had to do was move my arm and my chest would squeak. Jack found it quite amusing, and requested it on demand. I found it more annoying than anything. Now I was going to have to find a ride a day early to get (what I thought was) a faulty gripper changed, so my medication schedule would not be delayed. 

I made the necessary calls: my sister-in-law would come drive me; the nurse was expecting me; my local doctor was to be paged when I arrived, and the former team of seasoned healthcare professionals was questioned as to how common an occurrence this was (the answer: never.) I was starting to get nervous as the concern with the port itself arose. The old gripper was removed, the new one inserted, and flushed with saline. Pain, burning pain, upon entrance into the port. Blood was drawn, and it barely sputtered out into the vial. I muttered in fear under my breath as the nurse turned to withdrawal via syringe. It worked! Flushing again: saline and heparin this time. My sensibilities (or was it fears?) questioned if it really was burning, and if that really was as big of a problem as it sounded to be. By the time the heparin entered, it was no question: it hurt. The tenderness near my armpit migrated to right above my port.

Where I *wish* it was inserted in the first place!

In an anxiety-induced daze, I followed the nurse to the admitting desk to get the paperwork for an X-Ray and to have a peripheral IV line started in my wrist so I could continue treatment while we were getting this all figured out. My sweet godson kept me from tears as I walked from one place to the next, full of worry over the unknown. The IV line was inserted into my wrist, and as a result I was unable to bend it or move without significant pain. I bounced back and forth between emotional discomfort and  physical on the car ride home, worrying all the way. Splinting my wrist once we got home helped a bit, as it kept me from bending it when it needed to remain straight. Jack became my doctor as he took over, commanding me to put my arm here and not there; and petting the fingers peeking out of the gauze; sing-songing a soothing, "shhhhhh, it's o-kay. It's o-kay"-- after checking to see if my chest could still squeak (it couldn't).

A Port being punctured by a Gripper

This afternoon I received a call from my primary caregiver down south.  What it comes down to is while this port was supposed to last me the length of my treatment, it doesn’t seem to be doing so. Many things could be the cause, including the possibility of a tear in the membrane where the gripper needle enters, causing it to leak under my skin instead of into the catheter tubing that leads to my heart. There are tests that can be done, but it can be difficult to tell if I need a new one or not. For a multitude of reasons  she has decided that regardless, the new port is the safest way to go. There is a new, and better port system available that has  no need for constant and expensive heparin flushes, is made with a non-metal material that can withstand a myriad of tests, such as CT scans if the need presented itself, and has catheter tubing placement in such a way that there is little to no danger of a kink (which is another possible cause of my troubles). And while it sounds great, it's the getting there that has me less than excited.

I am scared. Nervous to go through the healing again, about what my new scar will look like, the learning curve of how to access it weekly, and so on. And while I am grateful it conveniently falls on Matt’s hard earned time-off so he can be there with me, I am disappointed that this is how we will be spending his “vacation”. I am frustrated that after feeling so many improvements, I have something major to deal with again, reminding me of just how sick I am.

Remembering the time span peripheral IV’s tended to have in the past, and not wanting to get stuck over the weekend without one, we went back to have one reinserted today in a less painful, convenient location; and with longer tubing, so I can do the job with both hands, maintaining the same level of independence as before.  I will continue to use it, and replace it as needed, until the Monday after next, when my doctor hopes to have a surgery scheduled for.

Look at all of that scar free skin to poke into!

So, in typical nature of this disease, the difficult parts come hard and fast, while the good comes slow and steady. This too will be good in the end. We will have a "fresh slate" to work with-- less scarring to contend with on a weekly basis when accessing the port. The dime-sized entrance has been poked over 60 times already (giving no new skin to go through), and it hurts much more to push a needle through scar tissue! 

What it really comes down to though, is if this is what is safest for my health, then this is what we will have to do.

Please pray for me. I need all the courage, peace, and strength I can get right now!

Blessings,

Kate

“As for you, you meant to harm me, 

but God intended it for a good purpose, 

so he could preserve the lives of many people, 

as you can see this day.”

Genesis 50:20

Hope Abounds

This past weekend we spent out at my in-laws’ cabin. It has been a couple of years since I have been out there; and the first time tenting since I have, to my knowledge, been sick.  I was uncertain of my ability to make it out there (the drive alone is almost three hours, which takes a toll on my body); but, with the desire to share summer with my family, even if only for a couple of days, I was driven to push myself.

Dorky life jacket aside-- pure happiness!

 Once out there, the smell of fresh air and the sound of water against the shore filled my soul, and fueled me. My sister-in-law, nephew, and later, brother, came along as well; and spending time with them—sharing in each other’s joy, and taking delight in our sons’ experiences— multiplied the excitement tenfold.

So, pitching a tent outside the cabin, we camped for the first time together since our son was born. I waded in the beautiful lake water; a welcome respite from the heat. My family and I were on vacation! A real vacation. And it felt wonderful. It felt more than wonderful: it was pure bliss.

Other highlights were: jet skiing with my husband for the first time since we got engaged; laying on the beach to rest instead of my bed indoors; and being overwhelmed with gratitude and the beauty of God. I chased everyone around with DEET laden bug repellant (the kids wore it atop their clothes), and aside from feeling the need to do that, I didn’t have a care in the world. No paranoia at being out in nature. No fear of being out on the water. It was liberating, to say the least.

A date with my sexy husband <3

Tenting it, especially when sleeping in is still a necessity, turned out to be less than ideal. I got so overheated the next morning I almost had a seizure after I finally did fall asleep; between the late sunset and ongoing fireworks, I found it harder than ever to drift off! I went home with my siblings the night before my boys came home, and rested well in my own bed after being drained from the sunlight and over-exertion the days before.  As I said to Matt, this isn’t something I expect to be well enough to keep doing all summer, but it being the first time in years that I got to enjoy a piece of it, I sure am grateful for what I got!

Pulling Jack and Grandpa on the tube!

I was also reminded today, when commenting on the amazing smell of flowers and the summer air in our yard, that there was a time that I couldn’t handle those smells. Isn’t that wild!?! I had forgotten completely that last year around this time I asked Matt to display the gorgeous flowers I’d received in the kitchen instead of our bedroom, for hyper-sensitivity to the smell of them. So many baby steps that I don’t even realise are going on are taking place; so many strange and terrible symptoms— forgotten. It is weird and astonishing and wonderful to experience. It may not be all at once, but oh—to enjoy the smell of flowers again! To bask in the sun! To relish the company of others! It keeps coming along, day by day.

May God keep you safe as you enjoy what this summer has in store!

Blessings,

Kate

“The Lord gives strength to His people; the LORD blesses His people with peace.”

Psalm 29:11

“And [the LORD] said, ‘My presence will go with you,

and I will give you rest.’”

 Exodus 33:14

“As for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me.”

Micah 7:7