These posts are getting a little hard to write, because there isn't a ton to tell, and yet there is all at the same time. I have no problem writing them once I get started, but it seems like every time I get back from one of these trips, I just am more exhausted than the last time. I was SO happy to have Jeremy there with us this time though, it makes such a HUGE difference to be able to just come home with him knowing all that is going on instead of having to explain it all. I really feel like he took some of the burden that was weighing on my shoulders, just by being there and knowing exactly what went on. I know he is glad to have heard everything first hand, and not from an over intense mother/wife :) Because of basketball season I have gone down to Rochester with out him a lot these last few months, and I think not having him along has caught up with me (physically, mentally and emotionally). Not that having my mom or Jill along hasn't been amazing help, but I guess I have just realized that we are a pretty great team as husband and wife, and as parents! I am thankful for him as a husband and a father, he brings so many good qualities to my life (and our boy's lives) that I don't have. God gave me a pretty awesome guy, if I do say so myself!
Okay...enough mushy stuff, right??
On to Jaxon! As always, we started off our trip trying to beat a blizzard, which we actually did. We hit some heavy rain a couple of times, but that is it! Ashby got quite a bit of snow, after a thunderstorm that even scared Hayden enough to have to call me.
We had to stay up late that night and get up early so Jaxon was ready for a nap at his EEG in the morning. He was nice enough to just play on his iPad and let Jer and I sleep a little longer :) We were up at the clinic by 7am, and all the prep for his EEG actually went pretty quickly this time. He was okay doing the testing by himself, so Jer and I were able to get some much needed coffee and a little breakfast.
Next up was meeting the neurologist...she did her usual neuro checks with him and thought he looked pretty good, she also said that his EEG looked great! Now from what I can tell, having a good EEG (good background rhythms in your brain, not too slow), means that his brain is not being affected cognitively, from the increased pressure as of right now. That is me saying this not her, so don't quote me on that, but I think it is pretty close. We didn't get into too much with her since what we were really looking for was what the spinal tap would say. And that was next on the list after some lunch :)
Jaxon had to have the spinal tap done with out sedation, which even worried the nurse who did the spinal tap. She felt so bad for him, but I knew he would be okay even though he was SO nervous! Again, from what I gather, having him sedated can actually increase the pressure in his brain, because of how oxygen flows during deep sleep. Any who, because she felt bad, she bent the rules a little and let me have a little stool behind the curtain to hold his hand and talk to him while she did it. He was a ROCK STAR!!!
We had to get up pretty early the next morning too, which was hard on Jax because he was just spent and in a lot of pain. But it was just 1 appointment and he was a trooper as always!
After me getting a little uptight at the neurologist (because she was saying everything was hunky dory), Jeremy got her to really explain what she was thinking, and how we were going to proceed. It really isn't any different than what I have been saying before, but that is the safest route to go for right now. Jaxon's pressure was high at 324 mm/water, but it had come down 100 mm/water, and that is a good sign. They also took off enough fluid to get his pressure down to 220 mm/water, but that doesn't mean it will stay that low. He is off ALL of his meds right now except his hydorcortisone (which is only the amount that his body should be making, and isn't), and she is thinking and hoping that is the reason for it lowering. She feels like right now it isn't harming him (at least his brain) to have that pressure, but of course he still feels icky. She is hoping that he will start to perk up now that he has been off the drug Diamox (that was suppose to help decrease the amount of fluid produced in his body, but didn't help), which can make you very groggy and sleepy. She is also hoping that having his adrenals being helped out will also give him a little more energy. Now all we get to do is wait and see. That is kinda where we were, and still are with a little bit more understanding and a little bit of improvement. We are all scheduled to go down again on May 15th and 16th for appointments with Dr. Mason (his rhuematologist), his endocrinologist, and his neurologist. We will be evaluating how he has been doing, and are scheduled for another spinal tap if he is still the same, and go from there. If he starts to perk up, then we will be looking at what we can introduce back as far as meds go, and canceling the spinal tap.
So again a TON of information, but not a lot of answers...and because we want to make sure we do all we can before going a very drastic route (shunt), we need to be okay with no answers, and being patient. It is really hard for me not knowing what is coming, how it is going to work out, what we will have to deal with, or anything. I am the type of person that even if it is bad news I WANT TO KNOW NOW, and learn how to deal with it, and live. God has other plans, and of course they are better plans, so I will trust in Him for my boy. Jaxon also is getting frustrated at the unknown, and feeling icky all the time, but I want him to not be like me and take forever to lay it down at Jesus' feet, but do it right away whenever he thinks of it, so God is in control not him. Life is so much better that way anyway :)
Thank you for all of the prayers and wonderful messages! They mean so much, and Jaxon loves to read what you have said, and I can tell it means a ton to him to know that there are so many of you praying for him!
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