Three Clicks of the Heel...

...and I am still in the land of Oz. Well, I shouldn't sound so negative, because thinking back on the last month, I have to admit that things are a lot better.

The first couple weeks home from the hospital were spent healing. First, my appetite returned as I backed off of the pain medication. Then, I started sleeping better at night. Slowly but surely, my body systems returned to a more normal state. Surgery and anesthesia really throw things for a loop!

I started home health physical therapy about three weeks ago. I am told by people who see me about once a week that I am moving around better. At first I didn't really believe it, but it's a consistent theme I am hearing, so it must be true. The exercises are hard to do, mentally and physically. The hardest part about it is that I can't count on one day to the next, or one hour to the next, being strong enough to do them. Consistency is important to doing them and getting stronger, so I feel discouraged when I go an entire day without exercising. I call it "falling off the wagon".

The incisions are mostly healed. The pump is okay. "We" have not bonded yet. It is large and I am reminded of it's presence every time I move. It still hurts frequently when I bend or twist just right as I have become more active. I'm told that is normal as to the location of it. Normally it would have been placed just under the skin, but on smaller framed people, it is placed under the facia for a less pronounced appearance. That is the reason it is more tender at this point.

Less pronounced appearance. Hmmpff. I look pregnant on one side of my body. The pump displaces my belly button slightly. Not that my bikini days weren't already long over, this definitely seals the deal. Like I said, "we" have not bonded, but here's the thing...

I am no longer exposing my body to that massive dose of oral Baclofen. I am not a zombie during the day and an insomniac at night. I am no longer tied to the clock. When I start begrudging the pump, I remind myself that I had no choice. It was the right move and I thank God that He made it happen so fast.

With PT and strength training, I am on my way. The pace is painfully slow. But to be fair to myself, it's two steps forward and only one step back at this point. Oh, and that window of 4 to 6 weeks of the risk of infection is narrowing. Thank God! I covet your prayers: to remain infection-free, to continue getting stronger, and to be able to walk independently soon.

Trip to the ED

When I left the hospital Tuesday afternoon, my physician and the pump clinic RN were concerned about the incision on my back as it seemed to not be entirely closed and was draining a little. They put a new dressing on it and told me call the surgeon's office if it continued to act up.

Wednesday, my mom checked it and there was a tiny little bit but mostly dry. The wound is pink with no outward signs of infection. But Thursday night my husband checked it and there was quite a bit more drainage. The site still looks okay, but of course I'm worried about an infection.

After a few calls to the nurse at the surgeon's office first thing Friday morning, she instructs me to go to the emergency department at Tacoma General. My dear sister dropped everything and took me in as my dear neighbor stood watchful eye over Kate so my husband could still go to work.

I was expecting the worst...labs, scans, readmission, antibiotics, surgery...

The ED physician assessed the wound and drainage, took a culture, and determined that the drainage was the result of a small seroma, or pocket of fluid that had worked it's way loose as I've become more active with bending and twisting. He redressed the wound and said it just needs to heal from the inside out.

Relieved, I was discharged and home by 3:30 in the afternoon. The drainage is continuing, but the site is pink without signs of infection. I see my rehab physician on Tuesday and surgeon on Wednesday. Please continue to pray that I remain infection free!

First Full Day Home

I cannot begin to thank the countless people who have stepped up and offered a lending hand. From the bottom of my heart...I hope you know I am ever so grateful.

One week ago on the 21st, I had a two hour surgical procedure at Tacoma General Hospital for the placement of an Intrathecal Baclofen medication pump. The pump rests in the lower right quadrant of my abdomen, a catheter is tunneled under my skin to my back, it is inserted through and sutured in the lumbar region of the spine, and then threaded up so that the tip rests at T-9.

The first night at TG I battled a repeat (only worse) of what I experienced following the test dose. Massively low blood levels of baclofen in my body caused my teeth to chatter and legs to twist into stiff, contorted positions. I begged the nurse to call my doctor and give me some oral baclofen. About 40 minutes after the dose, I got sick from pain medicine. I wasn't intending on needing anyone to stay with me, but my Mom stayed even though she had clinicals early in the morning. When I would start into the chattering and start moaning, she'd get up and flex my feet and massage the spasms out of my legs. As my breathing slowed, she'd fix the covers and curl up with her pillow and blanket in the corner. I felt so bad that she stayed all night, but I don't know how I would have gotten through. I love you, Mom.

The next day I was discharged from Tacoma General and admitted to Good Samaritan Hospital's Rehabilitation unit where I immediately started OT (occupational therapy) and PT (physical therapy). Immediately, the dose on the pump was adjusted up and would be two more times (daily) after that. I stayed there a total of five days.
Higher than expected levels of internal and incisional pain made it difficult to keep my head in the game, and nausea from the pain meds made it almost impossible to want to eat anything.

I was discharged home on the 27th. The pain is easing but my strength is yet to return. I will be receiving physical therapy via home health starting tomorrow.

Please pray that my body stave off infection during the next critical 5 weeks and that with good nutrition and rest, my strength will return.

Master Plan

Yesterday morning, I called Dr. Morris' office to remind the office staff that I wish to be on the cancellation call list. After a few moments on her end, she says "I have a cancellation for tomorrow in Federal Way. Do you want it?" I wanted to reach through the phone...

I saw Dr. Morris this morning for a pre-surgical consult. My dear friend Alicia went along to take notes and provide a second set of ears. 30 minutes later, he told me that his assistant would be calling me within the next few days to schedule the surgery. He estimated the surgery would be in two to three weeks. I thanked him for his time, gave Alicia a hug, and came home. Excited for this last step to be done and a little on edge that this was it, I look forward to scheduling the appointment.

A call came at 4:45 this afternoon. Surgery is scheduled. Surgery is Wednesday 4/21. NEXT WEEK. I have been on the phone all day. I cannot even begin to describe what I am thinking; what emotions are going through my head. I am...processing.

Already, with my sister's help, I believe we've developed a childcare plan for 11 straight days. Amazing! I will be calling in favors from those of you who have offered your help, so stay tuned; your phone will be ringing! I'll be asking for meals for my husband and childcare, visiting while I'm in the hospital, and anything else that pops into my brain.

While Kate was napping, I went out on the porch and soaked up the sunshine. I talked to God, as I have been doing a lot lately. Naturally, there is this little voice..."is this the right course of action"? God tells me yes. Why else would He have put everything on a high speed track for me? I cannot keep going the way I have been the last 4 months. The medication ISN'T WORKING. My spasticity is getting worse day by day.

This pump has to be the answer in this regard of my MS. This pump is part of the Master Plan.

Feeling Down

I hear the message..."you are so strong"...but I definitely don't feel that way.

I would like to wake up tomorrow and have this all be over. Pump done. PT done. Dose adjusted. Back to work and feeling productive. Back to life. Back to society. Back to feeling like a person.

I look at my sweet little girl. She sees me as her Mom. I do the darnedest, silliest thing and she thinks it's hysterical. Shouldn't that be enough? I caught her just now. She got a hold of my colored chap stick and applied it all over her face. She has a nice glow about her after wiping it off.

I know a lot of what's eating at me right now is the feeling of futility and self-doubt. I do believe that God has something wonderful in store for me. Shouldn't THAT be enough?

High Hopes

I had been very hopeful that the pre-surgical consult would occur such that the actual surgery would take place by the end of the month.

When I spoke with the receptionist at the surgeon's office last Thursday, she had told me that I couldn't make an appointment yet because they didn't have my chart notes. She assured me that they'd call me as soon as possible once the notes were received. I believed her, silly me!

A full week has gone by, and on a whim, I called again today...just to see. Lo and behold, they have my chart notes. When I asked when they had been received, she didn't know. I told her I'd been waiting for a call and she didn't respond. My tone for the remainder of the conversation changed.

She proceeds to explain to me that the surgeon does consults on Mondays in Tacoma, and at sporadic outlying clinics on Thursdays. She asks me where I'd like to schedule the appointment. I proceed to explain to her that the location didn't matter; I needed the soonest available appointment.

April 29th.

I asked to be placed on the cancellation list. "You would like to cancel your appointment?" No, I explained, I would like to be notified when someone ELSE cancels THEIR appointment. "Oh, that's not possible because you are a new patient." Okay, fine.

So not one hour later, the pump clinic RN calls me. "I see you have an appointment." Yes I replied, a little disgruntled. I told her they wouldn't put me on a cancellation list. She chuckled and said, "well, I made a call and talked to the right person, and they will be calling you if or when there is a cancellation". Needless to say, I thanked her profusely!

She is my angel and she knows which strings to pull and whose bell to ring. Now, I am praying for a cancellation such that I can get last minute childcare and physically get to the location on time! Yikes!

Drumroll please...

...according to the psychologist, I am NOT crazy! Like there was any doubt, right? The appointment was scheduled for 1 and a half hours, but mine took 2 hours. It started out as I expected. He asked me questions such as what were my expectations, what did I know about the pump, etc. Then I got to do a series of tests. Identifying pictures (chair, eyeglasses, bird), counting backwards from 20 as fast as I could, orientation to time, who is the President, etc.

THEN, he gave me a booklet and bubble form to answer 217 questions. Yes, 217 questions. I looked at the bubble form, then looked at him, and said "I feel like I'm back in school!". He chuckled and left the room. "Take your time" he said as he closed the door. I won't bore you with what the questions were on the "test", but when I was finally done, he glanced at the answer sheet quickly and said "I don't see any problems here". I'm guessing he's seen about a thousand of them before.

Later that day, the pump clinic RN called me. She said, "God wants you to have this pump". I was quiet for a moment and replied with "...okay?". She reminded me how quickly the test dose came together. She reminded me how I was able to get an appointment with the psychologist 2 days after they contacted me (normally would have been at least 2 weeks). She further explained that normally, the psychologist wouldn't send his report to her for at least a week.

He sought her out and spoke with her immediately after I left his office.

The whole process is moving faster than normal, and I have the Lord to thank for that! For all who have been praying on my behalf, thank you.

I wait to hear from the surgeon's office to schedule the pre-surgical consult. That should be any day as they just need my chart notes and report from the psychologist. With any luck, the consult will be within the next two weeks, with surgery after that. Without any hiccups, I should have the surgery by the end of the month! Please leave me a comment if you'd like; I'd love to hear from you.

PS: "Greatly Blessed by Kate the Great" has four new posts, highlighting my recent trip to CA with pictures and stories. Check it out!