Fear of the Unknown

The last few days have been more difficult then I had ever anticipated. I guess I had this misconception of "treatment means recovery". You would assume that with everything else I've dealt with that I would know the cold hard Truth. Treatment doesn't mean recovery and I'm NOT invincible! Hard words to swallow and except, but true. I might not get better, I might get worse....it's ok to not be ok! Unfortunately I have found no relief from my relapse as of yet and sadly I have gotten worse with each waking day.
With the 3 days of IV steroids, 2 days of oral, and I started another Medicine to help with my nerve endings (Neurontin) I continue to have this headache for 10 days now, I have wibble wobbly legs that feel like they are going to give out at any moment, my arms are weak, and my body just aches. BUT I will remain positive that this is running it's course and one day I will wake up regaining some of my functions back instead of losing. This is so unbelievable that I'm finding it hard to wrap my brain around what has all happened ....and in such a short amount of time. Like I don't know how fast things can change, BUT it's not suppose to happen to ME, RIGHT? I'm suppose to be the strong, protective, and nurturing one instead of being the one that is dragging behind.
I've been exceptionally spoiled by having Dr Kasper in our lives for Danny as the "regular" doctor/patient relationship I forgot that exists out there, sucks. So I'm finding my patients running very thin with my Neurologist. Call me crazy for wanting just a phone call back (when I called at 8am to let them know I wasn't doing well) to see what I could be doing. So here I wait over the weekend wondering what I should be doing and getting pissier! The office did call into the pharmacy for two prescriptions .... one that I can't even take as I get sick from it and the other I'm not really sure what it's suppose to do, as again I got no phone call or direction, UGH! I can't wait for Monday's phone call to the doctors office, :) I won't stop here and just wait around so I'm going to start looking elsewhere for a doctor that I feel is hearing and treating my concerns.
I was able to get out for lunch with my girlfriend on Friday. I was so nice to get out and be "normal" for awhile, talk to another adult (one that gets it), and just shoot the breeze. I'm so glad I did as honestly I don't think I could do that today, I've gotten so .... NOT ME!
By Saturday I was very weak, but I signed Avrianna and myself up to go to a 2k walk/run fundraiser for her school. I went but thankfully was able to just sit and watch the kids run around the track, phew! As it took everything for me to walk in to the field house :( Another big one to swallow, sitting on the side lines, isn't something I like to do! Thankfully we had nothing planned for the rest of the day and we sat around the house watching some movies :) Then in the evening Dan and I had some friends over to give me some tips on changing over to a better diet. Guess it's time to step up and take care of myself? It was great bouncing ideas off of her and getting some of her wonderful recipes was a great start. She has fibromylacia (which has some of the symptoms as MS). So with both feet in I am changing to a healthier diet. With the way I'm feeling I'll give almost anything a try. I'm anxiously awaiting some MS books that I purchased online that will hopefully give me alil more direction.
Danny has been doing great! He's been such a good, healthy boy lately (knock on wood)! It's as if he knows somethings up with me, weird? But I'll take it. He's happy and healthy so I'm all game for that. We've gotten Danny on the schedule for his back surgery in May. With talking to his Doctors and some other parents I feel the surgery would benefit him greatly, but I still have a few loose ends that I need to wrap up so I have all the info I need. To make things even more exciting, I've changed Danny's nursing so this last week it's been alil different around here, but I think it's all changes for the better :) Danny and I need more consistancy and dependablity so I'm hoping that we'll have everyone on board, trained, and comfortable before May 14th.
Avrianna has been awesome also! She's been selling Girl Scout Cookies. She has already met and surpassed her personal goal.....YOU GO GIRL! This is her first year and she's loving it. We just got report cards for her and she's AMAZING. She's doing excellent in everything ~ I'm so proud of her! Avrianna has another swim meet this next weekend in Clintonville, where the coaches have her entered in 6 meets. GO AVRIANNA GO!

Night n Day

Well today started so terribly wrong, but with some AWESOME care, Thanks Mike, Danny is doing FABULOUS! It's night n day how my lil man is doing from this morning till now. Mike had his hand full this morning, but took charge, and got things done....even with Danny not feeling well he managed to smile at Mike a few times today and believe me those are not easy to come by. Danny got a new trache and his breathing started to get alil better. Then we pulled out the GJ tube and inserted his old style G tube. Our long term goal is to get him to feed back on the G tube again so I though now was a good opportunity to give it a try. If it doesn't work we can have the GJ put back in on Sunday. Which by the way he is doing wonderfully with the feeds n meds in his tummy right now. I hope this trends stays! Throughout the day his heart rate, Blood Pressure, temps and breathing rate came down. This morning I was looking at the monitors and not one number was up there that made me feel good, now tonight they are ALL perfect. I think Danny was so upset as everything was snowballing on him that it took awhile for his system to relax and come back to "normal". Thanks again Mike for sticking with my lil man, giving him great care, and most of all dealing with ME.
I was really working on Mike to see if he'll come up and do some Home nursing for us :)
Danny has his primary nurses all weekend so I have no doubt things will get handled and that I can breathe easy. It's always a good feeling when we get our primaries....less stress, GREAT cares, and always a good time. It makes the stay here ALOT easier when his primaries are on. Thanks Lisa, Paul, Stacey, Erin,Monica, Mike, Vikki, Mary and Tammy .... you guys have taken such good care of my lil man, I don't know how I would have made it through this LONG stay without your support, kindness, caring, and attitudes. Thanks for putting up with ME! You guys will forever hold a special place in my heart.
Tomorrow looks like we are ALL going to the ZOO, Horray! I will post pictures tomorrow night after we get back. I'm so excited to be spending some quality time with Dan and Avrianna as a family....ALL together.
Sweet Dreams n Good night! Thanks for following our journey's. Please post or comment to let us know you stopped by, we love hearing from you too. Take care!

Surgery

Tomorrow at 3 pm my lil man should be in surgery for his kidney stone and cyst. From what I gather they are going to pull out the stent and try to go up into the kidney with a probe to "blast" the stone. Then they flush out the kidney for the particles to wash out so they may have to insert another stent if they think he is going to pass more particles after the procedure. Lets hope they get them all out and we don't have to worry about another stent as Danny hasn't done well with this one being in. Now if for some reason they pull the stent out and the ureter is still too narrow....I've gotten two different case scenarios from two different docs. First one told me that they normally put in a bigger stent and try again later, of course, I disputed that option highly. The other is to open him up and go get the whole stone out that way. I would rather that then put him through another stent ordeal. So I am going to let them know that if they go in through his willy wonka and can't get the stone to NOT put another stent in and open him up. I will keep you posted tomorrow as I everything plays out.
Today was a relatively uneventful day. Danny's pain was pretty much under control, with just a couple bouts of crying out and us having to press the pain pump. His "newest" issue is lack of peeing today. Well it actually started last night.....where he hadn't peed in awhile so they cath'd him. They didn't get much out at 9pm, he peed over night 115 (which over nite is usually 300-400), then all day he only peed out not even 100 (which should be close again to 300-400). So where did all the peepee go? The doctor don't seem too much concerned as of yet, but you can bet I will bringing this up to Palliative care and Urology tomorrow. My concern is the stone fell down and is blocking the opening of the stent not allowing the peepee to drop from the kidney to the bladder, but I was told that really isn't a possibility. Hmmmmm, my Mommy gut is saying something different? Well we'll all see tomorrow. I crawled into Danny's bed tonight and we watched Peter Pan and then Tinker Bell together, it was nice to have some snuggle time with my lil man. As lately he hasn't wanted to be even touched he's been so sensitive. Then I sat back and had a glass of wine (thanks a million Meghan), I'm writing this and then heading of to bed.
Today I also had a nice meeting with a women that is interested in home nursing for Danny, if we should ever be able to get out of here, LOL. She was very nice and I think she would do great with him. Now just figuring out a schedule that will work for everyone. Between all the interested nurses I can have full time nursing, but I'm not sure WE are ready for full time yet. So I have to discuss things with Dan, have a heart to heart with myself, and see where everyone stands if I'm not ready to go full board into full time nursing right away. I agree and have excepted that I need help once in awhile with Danny but having a nurse around everyday for 8 hours Mon-Fri, I just don't see the need yet? My thought is to start with them 2-3 times a week from anywhere of 4-8 hr shift depending on the day and what's going on, and then maybe a weekend a month. I'm not sure yet, but I'm hoping to get a better grip/idea as you all know I like to have some what of a "game plan" and be prepared before things happen. Yeah the OCD is starting to kick in, LOL.
Thanks again for following our ever lasting story. I have has alot of you ask how am I doing with my new diagnosis of MS. Well I'm doing well....weirdly enough most of my symptoms of subsided right now so all it good there. I haven't been able to start my treatment yet, as I've been here since the diagnosis and I need to be trained on my daily injections before I can start them. I appreciate all of you kind and encouraging words. Please sign our guestbook or leave a comment as we always like to hear from you too

NO GO!

Well after the doctor came in to say we could go home.....they called down to Milwaukee to Danny's Pulm doctor to let her know the game plan. She wasn't excited about sending Danny home when he is SO dependent on the bipap. So we are NOT GOING HOME....I'm so sad and really bummed. This is normal for us so I don't see what the BIG deal is. Danny has pneumonia and is having troubles breathing.....no doubt he is going to need some help the next few days maybe even weeks, so I don't get it. He does GREAT if on the bipap, but every time he is taken off he struggles VERY HARD and so far today we were only able to get him off it for 30 minutes and that's with 2 liters of oxygen to "hopefully" help, but NO GO! So we are here for at least another 24 hours to see how he can do, which at the moment is great, if their goal is going home off the bipap. ***SIGH***
The nursing care thing is becoming a PAIN IN THE ASS to get paperwork started, approved, find a nurse, and all from the comforts of the hospital. There really isn't an agency in our area so I would have to go with a private nurse, which is fine......but wow it's overwhelming and right now I just feel lost. Almost to the point where is it all worth it.....it's just easier to do it myself? This is a HUGE step for me and right now I'm just feeling I'm getting no help trying to find help, if that makes any sense. Or am I just making a mountain out of all this cuz my head is spinning around?
On a good note....or a bad, not sure how to look at it, but.......NeuroScience called today and the doctor wanted to see me tomorrow at 12 noon. So I guess I'm getting in sooner? Wonder what all changed, but a part of me really doesn't want to know.
Avrianna is LOVING all her camps that started this week. I am glad she has them as her outlet and break from all our craziness lately. Dan is running around here, there, and everywhere, but welcome to my world (as I always say).
I will keep you posted with ALL that is happening with us. Thanks for stopping by....and let us know you were here, we love hearing from you too!