Just a medical update

God's been working in my brain to write a new blog entry but it just isn't ready yet. I'm still listening to Him for whatever message He wants me to convey. However, for those who have been wondering how I've been doing I thought I'd just give a medical update. I have also taken a "computer break" from facebook, the blog, etc. hoping it would help keep the seizures at bay. So, I know I have quite a few friends and family who are wondering how I've been. So, here's an update for you.

First, the IV treatments at home are better as far as having more control over my environment so it's quieter. However, they are still IV treatments and therefore, they are still so hard on me physically and mentally. I'm still running fever everyday starting out with a temperature of around 97 when I first wake up and after 2 hours of cold fluid being pumped through my veins it still goes up to 99 degrees by 11:00 a.m. It continues to go up even during my afternoon treatments. I'm usually about 101 degrees by 6:00 or 7:00 p.m. and it's not going below 100 degrees until after 11:00 p.m. or so.

The fevers make my sound sensitivity much worse and so I have had a few seizures since I've been home. The last was yesterday when a guy from the company who handles my oxygen machine came by. Right now I'm having to use a machine that basically takes the surrounding air in and somehow makes that air more oxygen concentrated. It's a help, but it doesn't hold a candle to the liquid oxygen machine I had in Kansas City. We have a prescription for liquid oxygen but my oxygen levels haven't been able to be monitored during a seizure. I have levels showing I go into the low 90s during sleep when my brain tells me to quit breathing, but no one seems to understand that the seizures I have are due to a lack of oxygen to my brain. The company is trying their best to get the liquid oxygen machine to me, but the FDA regulates those like they were some type of weapon! Anyway, they guy was there to deliver a monitor that would record my oxygen levels while I sleep. We explained the situation and he was intrested to know that we weren't trying to get liquid oxygen for my sleep, but for seizures. He said he would look into everything and try to see what he could do to help.

Bad thing was that when he arrived M & I were not expecting anyone and the doorbell rang at 3:30 (during my afternoon treatment which is my worst time of day). Of course my little toy poodle had to sound off his barking alarm and it was hard for me to handle. After the initial shock I thought I could still talk to the guy to explain all of the issues. As I was telling him how it was impossible for me to predict when a seizure was coming and that even if I could there was no way I could keep a pulse oxymeter on during a seizure since they are little gadgets that go on your fingertip and measure oxygen levels. When you are having a grand mal seizure it's impossible to keep something on your fingertip.

What happened next is what my husband thinks may have been "a God thing" because while the guy was telling us that he would do all he could to help us get the liquid oxygen, I ended up looking at M and stuttering, "Aaattttivan" because I knew I was about to seize. I fell off the couch and M came running with the Ativan that melts in my mouth. All of this, the whole grand mal seizure, took place right in front of this poor guy from the oxygen company. M figures maybe God allowed me to seize right then because when someone sees it happen they are much more likely to advocate me getting the liquid oxygen. We'll see what happens. For now I am wearing a figertip pulse oxymeter (taped to my finger) while I sleep for 2 nights to see what happens with my oxygen. The two night study requires me to sleep without the concentrated oxygen machine which means little to no sleep for me. That isn't good since I have a doctor's appointment tomorrow at 12:30 and don't want to have a seizure from going out in public and lack of sleep can definitely increase the chance of me seizing. M and I decided I would skip treatment this afternoon and that tomorrow morning just do a bag of fluids with no antibiotics to try and help me handle the whole ordeal of going to the doctor's office.

All in all I am very glad to be home but it does hurt my heart not to be able to see anyone. I just cannot risk the chance of seizing. Today my body is killing me from all the jerking, falling on the floor, hitting my hand on the hardwood floors, etc. Please pray that we will somehow get that liquid oxygen machine soon because I need it desperately. There is such a huge difference in how I feel on liquid oxygen compared to this machine. Also pray that I do not end up having a seizure from all the stress of getting to and seeing the doctor tomorrow. I know God never gives me more than I can handle and I've been able to handle all of this with His help. I know God will always go before me and make a way for me to follow the path He guides me down. But, I also know that God wants us to pray for one another and that He hears all of our prayers. So, I ask that you pray about my situation. I ask that you pray for M too as he has been through so much already and needs to be able to work from home without having to come upstairs and check on me (or call me on my cell phone from downstairs to check - haha). We do need prayers. We are out of K.C. and that is an answer to prayer, but we are far from being "out of the woods" so to speak.

I appreciate and love each and every one of you who take the time to read this and who are always praying for me as I continue down this difficult road to wellness.

Oh - again my daily calendar seems to give me passages that fit for each day! When we were praying about what to do about getting the liquid oxygen last week I read that day's verse:

"O Lord, there is no difference for you between helping the mighty and the weak. Help us, O Lord our God, for we rely on you." 2 Chronicles 14:11 (NRSV)

Then yesterday when I had the seizure the verse was:

"He knows the ways that I take; when he has tested me, I shall come out like gold." Job 23:10 (NRSV) - I find the book of Job, the whole story of Job, to be quite comforting as I go through all of this.

And tomorrow's verse as I try my best to handle making it to the doctor's office is:

"Without God it is utterly impossible. But with God everything is possible." Mark 10:27 (TLB)

Much love -
K