Friday

My greatest fear was realized. . . Dr Heffez said there isn't anything he can do.

I called my doctor in RV and we are going to try an iv drug coctail for three days in a row in hopes that this is just a "normal" headache and that the drug will break it. I am praying that this will work.

Thursday continued

I guess the headache was more than slightly stronger. I tried a few of the things that will sometimes give me a touch of relief but instead it continued getting stronger. By lunch time when Kyle came home he decided that I probably should have a shot to ease the pain. It is still quite strong but a bit more manageable than before the shot. I have stayed away from any meds (except the Sunday it started) just so that I could truly gauge where I am pain wise. Today it was well worth giving in on that. I don't think any of this is related to the spinal tap simply because I didn't feel much different yesterday afternoon/evening when I usually will feel different.

Romans 5:3 & 4 More than that, we rejoice in our sufferings, knowing that suffering produces endurance and endurance produces character and character produces hope. . .

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Great reminders to me that my situation is not hopeless no matter how it appears to me sometimes.

Thursday

I was able to have the spinal tap yesterday afternoon in RV. The pressure came back lower than it ever has. I really don't know what the next step is. I have such a fear that he will tell me that he is sorry and there is nothing that he can do. I don't think I can live this way.

His office called yesterday saying that he will call either late today or tomorrow since today is his surgery day again.

The headache is slightly stronger today.

call came

This afternoon the neurosurgeon called. I have to admit that this stage of the game is always a bit discouraging to me. I do need to have a spinal tap--no wiggling out of that one! I am waiting now for it to be scheduled.

He reviewed the ct scans and is disappointed that the ventricle isn't puffed up at all. So either that means that my pressure isn't up or it means nothing. It seems very likely to me that the pressure is up because all of the signs are there, yet in a way I have a fear that isn't because if not I just don't know what I will do. True, I wouldn't have shunt surgery but then I don't have a "cure" or fix which scares me badly. Nothing like honesty but I am just writing how I am feeling right now.

Since the ventricle is so tiny, he doesn't think that he will succeed in getting the tubing into my brain this time. The next option in a lumbar shunt which is placed in the lower spine/spinal cord. That is not a good option for me because a lumbar shunt is known to gradually cause chiari, so they are definitely not recommended for chiari patients, which I am. The doctor had considered this option previously when I had the surgery putting the left shunt in. When I went into surgery he had determined to try to get it in the left side as the best option, but if it didn't work he was going to place the lumbar shunt. He was happy about getting it in my brain last time and reluctant to go now to a lumbar shunt.

So the news is disheartening. I know that God is in control and nothing happens outside of His will for my life. I trust Him and know that He has a plan for me. Right now I wish that plan wasn't quite so painful or difficult.

Monday

Well, Dr Heffez is just not meant to get my scans today. They were picked up Saturday, but due to the awful weather we've had, I don't think the package has even left Sioux Falls yet.

I am having an interesting problem. My headache is still there, still the "different" headache which tells me that my spinal fluid pressure is off, still very sensitive to noise, light, etc., but it isn't really bad. Now normally I would appreciate that because who would want to have pain any more than they have to? However, this is putting me into a middle ground that I'm not so comfortable with. When it is really bad there is not doubt that I need surgery as quickly as possible. If it would go away, I wouldn't need surgery at all. Being in the middle, though, is a bit harder. The headache is bad enough that I can't think through things, can't handle much at all, but it isn't so desperately bad. Will he want me to wait until I am desperate? And if he does, what do I do in this "in between" time? It would drive me crazy sitting here indefitinely but I am not good enough to do my job. So I am praying that it will either get worse so that the choice is obvious, or that the headache improves significantly and the spinal pressure symptoms start decreasing. Life just stays interesting around here!

Saturday

Nearly a week now of this new, and yet old headache. It really feels like I didn't have a break, like it is a continuation of the pain two years ago. It doesn't seem to end sometimes. That being said, today has been the best day that I've had this week. Yes, I still have the headache and it is still challenging but it seemed like a little more doable today. I am thankful that this has been my good day since it is a Saturday with the kids home. They did all seem to go in different directions throughout the day, which was nice in keeping the noise level down.

The medical records at McKennan continued to be quite a fiasco. I asked Renae to follow up today just because I wasn't so confident in them getting the package out today. Good thing she did because they made a disc with the wrong info again. For some reason, they continue to to copy old scans instead of the most recent ct scan and shunt series done last Sunday at the ER. In addition, they hadn't actually gotten FedEx scheduled to pick up. Renae called FedEx to confirm that they were planning the pickup and they had nothing on their schedule. So she scheduled it and asked radiology to make the disc while she was on the phone so they could repeat to her exactly what they copied. If she hadn't followed up, it wouldn't have gone out till Monday and on Tuesday when it was opened they would have found the wrong scan again. Unbelievable! I am so thankful that she took care of this because I just can't deal with things so well.

The kids all seem to be taking this in stride, although they are all nervous. My attitude is better today than yesterday but I am just trying not to think about all this so much. It is hard to know how to go on thinking about the long term logistics of all of this. So, just one day at a time for now. Kyle and I did talk tonight about the many things that we have to be thankful for, and there are many. Sometimes the negatives are so overwhelming that we just had to step back and list how the Lord has provided for us through this journey.

Some days. . .

I found out this afternoon that the lady at McKennan overnighting the records that were missing last time she sent them probably sent the wrong things again! They are now saying that they will make the copy and send it out on Monday, which means that my ns won't have them until Tuesday. I'm not sure why the mistake happened the first time because I told her exactly what I needed and the dates. The second time all she had to get was the tests from the ER on Sunday and she knew that they were the ones missing. However the lady that answered the phone today read the record of what was sent and it was still the wrong info. I am very frustrated! Each delay is just more waiting in more pain that what I would prefer to have.