Due to the fact I got my new wheelchair parts today and am absolutely burnt out. There will be no podcast tonight.

Yesterday my pulmonary nurse emailed me and after long consideration on my end along with the doctor we have decided to cancel the oxygen in favor of the Cough Assist. Hoping that the sleep issue clears up with the cough assist. if that does not happen we will go ahead and do the oxygen.

Smell that, that my friends is the beautiful smell of new headrest and new seat cushion. I am writing this to you live from Paradise City Illinois also known as my powerchair. I can tell you this so far, I will be getting photos out to you guys. I will show you one example photo of what the headrest looks like.

Shown above is an example of the type of headrest I have now. Minus the blue and green switch, Mine has laterals like the one on the right side of this headrest.

I will explain why I have it on tonight’s blog post with lots of photos.

It is back to looking like this as of this morning. We decided not to go to the doctor today and wait till our standard scheduled appointment next week. Hopefully nothing else will screw up before then, haha.

Yesterday we sent a legal directive stating that if RehabTech did not get me my wheelchair parts to me within 30 days that we would take further legal action. Apparently the letter did its trick. They called today stating the parts were ordered with OVERNIGHT delivery to deliver to their facility tomorrow. They will be installed on my chair tomorrow or Friday depending on when the installer can get out. But that is what I call getting on the stick!

I think I will send the legal directive right off the bat each time from now on so people stay on the ball.

Tip for all of you out there, equipment companies never like the sound of legal action, thus they always jump and do what they should when it is possible.

Yay! Another problem (end sarcasm)

Today we decided to check on my spinal site which I do anyways every so often and were greeted by a swollen bump the size of a quarter of a golf ball. We have an appointment with my neurosurgeon for tomorrow morning. Hopefully it’s nothing major and its just a sterile seroma like what happened on my belly. If thats the case then we just have to wait for the stupid thing to go away.

Wow, I was slow on getting this post up here. We had a lot of stuff going on so I had a hard time getting around to this post.

Last Saturday we went to Long Grove for the 2008 Apple Fest. Mom sang and I was doing sound for the gig. This was my first time doing a big gig and I did awesome. In a few weeks I will be doing two gigs in one day, one which will involve me running a bigger badder soundboard. And then we will be coming back to the Gazebo and I will be running my baby Phonic board as I have nicknamed it. I can’t wait. Just so you guys know that will be Saturday October 18th, I will post more details about that as the date nears.

As always, click the picture above to be shot over to the gallery and see all the photos dad took.

A few days ago I took a photo of the spinal incision to check it, It look quite good to me and mom. It does no look like its about to reopen. But we will keep an eye on it. SInce we definitely don’t trust it.

Today we also went right after my pulmonary appointment to Dr. O’Leary to get my Baclofen pump cranked up a little more. I am feeling more and more different each time, although the change in my feeling is very small.

Doctor: Alright I am turning up your pump now. Ok it is done. Hmm, your not slobbering and floppy yet, not enough Baclofen, time to kick it up more.
Me: Wait I want to tell you some... *non understandable speech and slobbering*
Doctor: Hmm that’s one way to make him be quiet when he is talking too much.
Mom: Where can I get one of these programmers.

I can just imagine the above happening a few weeks from now. If it does happen I am sure hilarity will ensue throughout the entire hospital.

Today we went to the Yacktman Pavilion and saw Dr. Aljadeff my Pulmonary specialist. Today we reviewed my results from the sleep study and pulmonary function tests. My pulmonary function tests came back pretty good, everything was good but my expiratory flow and muscle ability is non existent. As you know The Vest system was working really well for us but we had to send it back because the insurance wouldn’t touch it and MedTronic advises against heavy vibration of the Baclofen pumps. So we are going to have to resort to a slightly more invasive method, the Respironic’s Cough Assist.

The Respironic’s Cough Assist can be considered to be in the same class of device as ventilators. It is considerably similar to a ventilator in the way it forces air into the lungs and then takes it back out. However, the Cough Assist is not designed to breathe for you, it is designed to cough for you. It slowly pushes air in inflating the lungs to a specified pressure. Then it sucks all that air out really quickly. So I guess you could say the Cough Assist sucks and blows.

The sleep study is where things get more disappointing. My Oxygen levels were getting as low as 93% which me and the doctor think may be a component of my really horrible sleep quality. So my doctor and I have decided that I should start using Oxygen at night to help my system work better in my sleep. We should be getting the Oxygen gear delivered soon.

As usual I will keep you all up to date.