Behind the wheel

I can drive a car again! After just over 8 months I'm officially allowed to drive. I'm also allowed to shower (only after wrapping my left arm in plastic wrap and while wearing a waterproof boot on the other leg) again for the first time since the first foot surgery 3 months ago.

I'm starting to get used to looking at my feet in their new configuration. At fist, when I looked at my feet without bandages, I always looked at the spot where the toes were amputated. Now I'm starting to look at the rest of the foot without fixating on just the missing bits.

Ever since the surgery I've experienced "Ghost limb", a condition where one feels something like pain or an itch on a missing body part. In my case I sometimes feel a strange rubbing feeling on the outside of my pinky toe -- the pinky toe that was removed. It feels exactly like something is rubbing on that toe. I've even absentmindedly reached down to scratch that toe a couple of times.

Our COBRA eligibility expires at the end of December so I've been busy searching for a suitable replacement health insurance policy. I had foolishly hoped we could simply buy the same policy directly from the provider. That has proven impossible - that level of coverage is simply not available to individuals at any cost. It looks like we will be paying a lot more out of pocket for care next year but we will be able to keep all my current doctors.

Egg Nog Porrage

1 cup steel cut oats

1.5 cups water

1 cup egg nog

1/4 tsp salt

Combine ingredients in a lidded saucepan and slowly bring to boil. Boil for 5 minutes then cover with lid and remove from heat. Let stand for 2-3 hours and refrigerate overnight. 

Reheat in microwave and add dark brown sugar and rasins to taste. For even more flavor add 1/4 cup grated tart apples to the saucepan prior to cooking.

Hummus man

Small Milestone

I'm getting used to doing the regular IVs 3 times a day and the problem with clogging the line is gone. Hopefully this works and the bone infection is resolved.

Still pretty gnarly looking but getting better

Today marked another small milestone, I got all the stitches removed from my feet. After the amputation I was left with about 30 stitches in the left foot and 6 in the right. It was actually quite painful which ironically is good news as it indicates the numbness is slowly receding.

With the stitches removed I can now wear normal socks instead of having my feet wrapped in bandages so walking is easier. Also and more importantly it means that I can take showers again which is a wonderful treat. I still need to treat the remaining gangrenous areas every day with Betadyne to keep then dry and germ-free. The remaining caps should fall off over the next few months leaving behind healthy - albeit shorter - toes.

Jax gets his first ink

Bubble gum

IV clogage Part 2

The home-care nurse came by at 10 this morning and administered "Cath-flow" to breakup to clots on the tip of the PICC line which worked perfectly taking only a few minutes to start the flow again. Based on how quickly they clogged yesterday I'll now be flushing both lines every 4 hours instead of every 8. We hope this will prevent future clogging.

This week I get the stitches removed from both feet and because of that hope to get back into regular Physical Therapy.

IV clogage

I was up this morning at 6am to complete my second IV session. It's much harder to do it right when you are tired. Twice I has to stop to re-wash my hands after rubbing my eyes in an attempt to wake up. My PICC line is actually a pair of small lines inside a single outer cover. After successfully using one line to administer the medication, I found the other line totally blocked. I tried to flush but couldn't get anything to go through. I discussed the problem with the on-call nurse who recommended waiting until the previously scheduled 2PM visit by my home-visit nurse to resolve it.

When she arrived at 2 not only was the first line still clogged but the other line become blocked as well. These blockages are typically caused by blood clotting at the tip of the line. Heparin is a drug commonly used after flushing to prevent this kind of clotting. Unfortunately I developed Heparin Induced Thrombocytopenia (HIT) to while I was in the hospital so I can't use it. They are going to provide another drug to attempt to breakup to clog - I'm waiting for it's delivery right now.

The nurse temporarily inserted a traditional IV into my wrist so i can take the antibiotics on schedule until the blockage is resolved. Without heparin its easy for the new line to become blocked like the PICC, so tonight (and maybe for the rest of the weekend) I'll be flushing it every 2 hours until the PICC blockage can be resolved.

The phrase "Nothing is ever easy" rings in my ears at times like these.

First IV done

No problem -- everything went perfectly. Since the antibiotics are stored in the fridge the contents were a little cold and felt pretty weird going in. Ready for the next one tomorrow...

Success - PICC line installed

After yet another hospital stay, the PICC line is in and I'm ready to start self-administering IV antibiotics. With the medication itself and all the flushing I'll be using 4 syringes, 4 alcohol wipes and two sterile PICC caps for every session. Not exactly ecologically sound.

Training and practice took about an hour and they provided this really cool tray to help organize everything.

Organization

I'll be doing sessions at 7am, 3pm and 11pm everyday with each session taking 10-15 minutes.

Since I had a PICC line the entire time I was sick I'm more than a little familiar with hospital staff using and maintaining the line and it looks like it will be relatively easy to do it myself. Given the alternative to this treatment was to remove more of my feet and toes, IV antibiotics is an easy choice.

Infection

Infection -- the great fear following any surgery. After removal, my toes were tested for infection and came back positive for Staph. A couple of MRIs confirmed that in fact that toes on both feet are infected. This was unexpected. This infection means another surgery to conduct a biopsy on three toes and another set-back in healing. The surgery was completed last week and verified Staph in both feet.

This left me with a choice between taking off more toes and a multi-week course of IV antibiotics. I went with the latter. I'm hopeful that the antibiotics can treat the infection and we don't have to take off any more toes. So on Friday I'm going to get another "PICC" line installed so I can self administer the IV at home.

This is a huge set-back and will further delay recovery. I'm now back in bed, both feet wrapped in bandages waiting for the PICC line. In a week or so the stitches should come out and I can finally get back to Physical Therapy and healing.

Compression

As part of the therapy to heal my feet I’ve been spending 90 minutes a day in a hyperbaric chamber. This treatment involves 90 minutes in a pressure chamber at 2 atmospheres while breathing pure oxygen and is supposed to increase to amount of oxygen in my system and speed healing of my toes. I was pretty skeptical when I started – the operators make some bold claims about the benefits – but after a couple of weeks of therapy I think it has really helped.

The "Chamber"

Each session starts with selecting a movie to watch during treatment. The chamber has a DVD player, a small video screen in one of the portholes and a little speaker inside so you can watch a movie. Nothing is allowed in the chamber so I have to remove my watch, wedding ring and empty my pockets before climbing in. Once inside I get a couple of blankets and pillows and a bottle of water and get sealed in.

This is not for claustrophobics. Once sealed in the pressure starts to increase causing your ears to pop much like SCUBA diving. It takes about 10 minutes to reach 2 ATM. The increasing pressure causes the temperature of the air in the chamber to rise making it feel nice and warm. During the session I wear a little oxygen mask the whole time to maximize the O2 intake. After 90 minutes at pressure the operator opens a valve and slowly decreases the pressure back to one atmosphere.

Jackson says "welcome back"

Superhero

And then there were eight

Surgery on Tuesday to remove a couple of toes was a success. This should allow my foot to finally heal properly and prevent the recurring infections I've gotten.

We had been planning this surgery for nearly two months but were delayed as I sought a second opinion about the removal and then a bout of pneumonia.

Looks pretty bad and hurts worse but is the next step towards getting better. Would make a nice Halloween horror display...

Pre-surgery

I spent all day in pre-surgery meetings today planning the operation to remove two of my toes and getting approval from my cadre of doctors for the procedure. Cardiology, pulmonology, nephrology, and podiatry all gave approval.

The dead tissue on my toes is really painful and won’t stop bleeding so removing them will reduce the risk of infection and hopefully speed my recovery. It’s not clear how much of the two toes will need to be removed. They need to cut off all the dead tissue and leave enough skin to create a “flap” to cover the amputation site. I’m nervous that will need to take some of my foot – up to the first metatarsal - as well as the toes to get it done. We won't know until the event how far the amputation will go.

Unfortunately, I’m also going to have to stay in the hospital for a few days after surgery for “observation”. What a bummer. I’ll admit that after my last, extended stay I really don’t like hospitals at all and the idea of going back sucks. 

New Pix

Toe-tally recovering

Here is a pretty gross picture showing an pretty awsome event - the dead cap (and toenail) came off my #4 toe. It's a little shorter now but should recover almost completely.

Recovery time

It is at times difficult to appreciate the depth and speed of my recovery. I frequently get down as it seems to be taking forever to achieve even the most basic level of fitness and mobility. Tonight I was happily reminded how far I have come.

I remember the first time I tried to use my iPad in the hospital -- I struggled forever with a plastic spoon to pry-off the cover of the Otterbox and couldn't open the thing. After some help opening the case I wasn't even strong enough to hold it upright. While progress seems glacially slow, it's quite easy to forget how bad things really were.

This little piggie

It's been a couple of months and my toes are still a problem. I think I've been hoping that somehow they would heal but now it's clear they will not. The dead tissue between the #4 and #5 (pinkie) toe cracked during PT a couple of weeks ago and won't heal. I've seen a podiatrist and a vascular surgeon in the last couple of days and both agree the crack won't heal (because the tissue is dead) and that removing all the dead tissue is the best was to help them heal.

That means removing parts of 7 toes -- not an easy thing to accept. I''m getting more used to the idea but it still sucks to loose parts of your body. Depending on my mood I alternately feel angry, sad or accepting of this news. Next we we will schedule the procedure -- hopefully this will help then heal.

Pull-up

Wee setback

After a month of consistent progress I've suffered a bit of a setback as my toe has gotten infected. I'm to go for x-ray tomorrow to see how bad it is. It looks horrible.

Jax starts walking

Jackson takes his first few steps which predictably are captured on a phone 

One Month

Today marks one month since returning home from acute rehab. In many ways it seems like so much longer. I'm now going to out-patient rehab 3 days a week and making good progress there. I can walk short distances without aid and can even shower standing up now.

However, Due to long term low blood pressure I developed gangrene in most of my toes and am going to loose some of them -- we are all waiting to see how much of how many I'll lose. I'm also still struggling with some residual dizziness - also due to low blood pressure - as well as continuing pain in my arm from DVT.

However, with all that I'm damn glad to be alive and am hopeful that things will get better with time.  

Jax turns 1

Driving cars around the smash-cake. Yes, thats a BMW 2002.

Post smash