Changes

When Brek and I came back from Indiana, Joe and I got to have a delayed celebration for Valentine's Day. I'm not a huge fan of the holiday, so I actually didn't mind not being in town. :)

But there was also a pretty big significance to our "special" dinner, because Joe was being put on bowel rest, so it became his "last meal." 

Brek LOVED the couscous we had, and ate a ton of it. He also made a big mess. :) And even cuter, he helped feed daddy too!

Have a bite Daddy!

Daddy helping Brek get the food on his fork

I guess I should put a warning for the rest of this post, so if you have a sensitive stomach, you can go ahead and stop reading.

Joe had a port put in, that connects to his jugular vein and goes down into his heart. Every evening at 6 pm, Joe takes a bag full of fats and vitamins and hooks it up to his IV. It pumps for 12 hours, and in the morning, Joe unhooks the IV before going to work. The first night a nurse came to our apartment and went through everything. We thought we would have a nurse coming quite regularly, but then we found out that our insurance didn't pay for the home health care because Joe was not home-bound. (At first we thought it meant the insurance wouldn't cover the treatment at all because he was still working, so we were quite relieved that it just meant we couldn't have nurses coming to our home.) For the next several weeks Joe had to go into the nurse's clinic to make sure he got it hooked up right, to take blood tests, etc. Once a week he gets to "de-access," which means he gets to take the IV out of his chest. He had to go into the clinic for that too, and to "re-access" the port. But eventually they taught him how to do that himself, and now he even takes his own blood samples too, and then goes and drops them off at the hospital before work.

Each week we get a delivery of all his meds and supplies for the coming week. It was a pretty big deal at first. Now (I'm writing this blog post in the middle of May, and this all started the middle of February), it's really no big deal. We really don't notice.

For the first week Joe didn't have a backpack to carry around his IV, so he used Brek's little cart to move it around.

This is what it looks like up close, all hooked up

Not too happy that I'm documenting this.

You can see the bandage up top which is over a few stitches above his jugular.

I'm amazed that even I have gotten used to it. When we were at the doctor's office getting it done, I couldn't even look at him because it creeped me out. I still don't like watching the blood draw, but I don't like that on me or anyone else for that matter. He had to sleep sitting up for the first 3 or 4 days, and for the first month or so he was allowed 1 glass of clear liquids a day. Now, 3 months in, he can have free reign of any liquids, and he's actually gaining weight too.

I was really afraid that we wouldn't be able to cuddle anymore, but luckily as long as I'm on the other side from his port, there doesn't seem to be much of a problem. :)

He went and saw an allergist just to get tested so that we would know where to be careful come the time he can start on solids. We were surprised to find out he has a sensitivity to peanuts, almonds, pistachios, and sesame seeds. He also has discovered a sensitivity to milk, so he's been really careful about that, and has been making rice milk for his smoothies. He also discovered that his body didn't do very well when his smoothies only had strawberries in them.

All said and not yet done, this has been a very good treatment for Joe. He sees his doctor this upcoming week, so we are excited to see what the next step is as far as re-introducing solids and even a possible date for ending the treatment. I am amazed that he has been gaining weight, and his overal demeanor has been much healthier than he's been in the past couple years.

When this first started, I found it interesting that I was playing middle man as far as emotions. For Joe's family, they have seen him at his worst, almost death actually. His health is always a concern for his mom and siblings, but it seemed from my perspective that there wasn't a whole lot of worry about the treatment. On the complete opposite of the spectrum, for my family, we have never experienced anything of the sort, so, there was quite a bit of freaking out. So when I say I was the middle man, I felt I was freaking out for Joe's family, and being calm and collected for mine.

During rounds of tests over this time, Joe was also diagnosed with osteopenia, a precursor to osteoporosis. It is actually very common for Crohn's patients to have osteoporosis due to the malnutrition, so his doctor is very impressed that Joe has lasted this long with good bone health. He has been doing yoga, and is very excited that his flexibility is improving, and he can now touch his toes. :)

We really appreciate all the concern and good thoughts and prayers for our family during this time.