Tuesday, January 31, 2012

First Time

This morning marked the first infusion through my implanted port.  I was a little nervous getting ready this morning.  I had heard that it only hurts a little, but isn't that what doctors always say?  The traffic caused by the foggy weather did not help the anxiety any.  

I waddled to the elevator after getting to Mercy Midtown, and took my favorite seat at the infusion center.  The charge nurse asked which me which arm I would like warmed up.  Normally, it takes hot blankets, 6-7 needle sticks, and me almost passing out to find a vein.  I smiled and pointed at my chest, and she remembered that I had scheduled the port install after my last infusion.  That brought a big smile to her face, and talked for a couple minutes about how the surgery went.

Huber needle
The area around and over the port was swabbed with Chlorhexidine (an antiseptic), and allowed to dry.  I was told to take a deep breath, and in went the Huber needle.  It stung a little bit, but was less painful than a successful IV stick.  I've read that once scar tissue has a chance to build up around the port, the sticks are barely felt.  I hoped that not having to deal with multiple needle sticks might eliminate the nausea that I have felt with treatment since I got pregnant.  I tried to fight off the feeling, but gave in and asked for Zofran about twenty minutes into the infusion.  

The bolus dose of Zofran made me fall asleep, and I kept waking myself up by snoring (and snorting).  I had headphones in so I couldn't hear how loud I actually was, but I hope it wasn't too bad.  Luckily, I was the only patient for most of the day.  Somehow, I managed to sleep off and on for about two hours.  That was another first - I've actually never slept in the infusion room, either.  At least I'm not the first to saw logs.  Usually the male patients use their treatment time to nap, and laying back in the recliner seems to make all of them snore.  I have to say that it was SO nice to have pain-free, IV-free hands.  I was too tired to knit or do much else, but it made eating lunch and using the restroom easier.

What an accessed port looks like.

Removing the Huber needle and flushing the port was just as easy as the needle stick.  I normally can taste the saline flush, but with the port, it tasted as if the nurse squirted the solution straight into my mouth.  The Heparin was even worse - it tasted like I had licked an aspirin.  I took a deep breath after the flush, and the needle was out.  It sounds odd, but I am actually looking forward to my second day of treatment tomorrow instead of dreading it like normal.

I would like to think that this year will be better.  That we'll receive more blessings than not.  Not dealing with around 18-21 sticks, multiple bruises, and the pain that comes with it is a blessing.  Feeling my son wiggle around inside of me is definitely a blessing.  Before I know it, he'll be in my arms.  I can't think of a better blessing than that.

Saturday, January 21, 2012

Tick Tock

We spent the day moving around furniture to make room for baby.  Actually, Adam did most of the work.  Having your pelvis move apart too soon means that your mobility is limited.  I mostly organized drawers, oiled some furniture, and supervised.  After finishing, though, I realized that this week would likely have brought the arrival of Avalon had things gone differently.  I have made peace with the loss, but milestones like the due date are still a little difficult.  Every kick and stretch that in my belly is reassures me that this time will be different.  Even though it seems surreal, we will have a baby here in about seven weeks.

I also spent a good portion of the week going to and from Mercy San Juan.  The incision on my neck (over the Jugular) opened up over the weekend, and was gaping by Monday.  Unfortunately, the interventional radiologist was out of the office one day, and running late the next.  Despite that, I ended up lucking out with no infection despite the wound coming open.  I also found out that I have a new allergy to Neosporin after applying a little to the dressing over the opened wound.  My neck started burning when I put the bandage on.  When I removed the bandage, I found blistered, angry skin in the shape of the gauze.  One more thing to add to the list of things I'm allergic to. (That includes most adhesive tape/bandages, sulfa drugs, tetanus vaccines, and now Neosporin.)

I am looking forward to the coming weeks.  We are hoping and praying for a calm, natural birth and recovery, and a healthy baby.  Wish us luck. :)

Wednesday, January 4, 2012

In the Jugular!

It has been a long time since I've been active here.  I really should work on that.  Today I had a procedure to install a port that will make blood draws and IVIG much easier. (And much less painful!)  During my November infusion, the infusion nurses told me that it was time to consider a port as soon as possible.  My veins were getting more difficult to access, and the damage to the veins made IV placement more painful.  By the end of my three day set of infusions, I would be bruised, very sore, and without any good IV sites left. Having a nurse look at my feet and shoulders for an IV site was all the convincing that I needed.

I thought that getting a port might be an issue because of the pregnancy.  When I told my neurologist's assistant that a port had been recommended by the nurses, the assistant said "okay, let's get you scheduled." Considering that it wasn't really urgent, it was the holiday season, and that neurology doesn't normally order ports, things moved pretty quickly.  I had a surgery date scheduled, and we went from there. Well-meaning friends and family have asked if it was a good idea, if it was safe, or if it could wait.  Every medical professional I have spoken to about the port said that it couldn't wait.  They need good access to my veins, especially with me being pregnant. The risks of the procedure are outweighed by the benefits of having easy access to my veins for treatment and in case of emergencies.

The thought of having a surgical site near my face made me a little nervous.  I am claustrophobic, and the idea of drapes over my face freaked me out.  Luckily, I would be given conscious sedation to help with the nerves.  Since I don't need chemo or radiation (the most common reason for a port), the radiologist chose a Vaxcel port with valve by Navilyst.  I was draped, scrubbed, and had a local anesthetic injected into my chest and around the Jugular vein.  The interventional radiologist made an incision above the Jugular, and in my chest wall.  The catheter was run through the Internal Jugular, and down towards my heart. Through the incision in my chest, they made a pocket and sewed the port in place.  The port was connected to the catheter, the catheter was flushed to test function, and the incisions were closed up.  Unfortunately, my muscle tissue is very tough from having Stiff Person Syndrome, so I kept feeling pinching as the radiologist worked.  They did their best to numb me and finish up as quickly as possible.

Vaxcel Port Positioning

After they got a chest x-ray to verify placement (with my belly shielded well), I was brought back into the nurse's office to meet up with Adam.  The radiology nurse gave me some grape juice to get my blood sugar up, and talked with us about caring for the incisions and port.  I'll have to have the port flushed when I go in for my infusions every five weeks, or once every four weeks if it isn't being used.  I'm covered up with gauze and Tegaderm, so I haven't seen what things look like yet.  I'm interested to see how much of the port is visible under the skin.  I was told to expect some pretty colorful bruising for awhile.  Oh, and I can't shower for at least two days. After that, I'm supposed to cover the Tegaderm with plastic wrap until the incision heals.  If anyone can figure that out logistically, please let me know.  I have no clue how I could manage to pull that off. Sounds like sponge baths and a trip to the hairdresser for a wash or two.

Once we got out of the imaging center, it was time for food.  Fasting for that long stinks normally, but it is rough being pregnant.  We ended up at Fuddruckers to feast on what had to have been the best burger ever.  I'm currently propped up in bed, watching crummy daytime television.  So far the lower dose of Vicodin is making the pain manageable.  I'm crossing my fingers and praying that it is tolerable tomorrow, when the bruising should show up. 

All in all, I'm happy.  Dealing with literal pain in the neck for a few days is better than dealing with stick after stick in my hands.  (And soon, who knows where else.) 

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