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Thread: Oh boy!

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    Distinguished Community Member andromeda31's Avatar
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    Default Oh boy!

    Hi!

    I'm still here! It sure has been a week for us at my house. I've been reading the posts here, but haven't had time to sit and write thoughtful replies (especially on the imprisoning posts!). Why? Well, to start, we had influenza A go through the house! Sunday Jan 6th, in the evening Brandon had a low fever and didn't feel good so I kept him home monday but he really wasn't THAT sick. He mostly walked around the house bored, temp only 99. He went back to school the next day. I just assumed a little viral thing, no big deal. Well, Caitlin came down with it wednesday evening so she stayed home thursday & friday. Again, I wasn't overly worried, she presented the same as Brandon, low fever~99, a little tired. But for her, we've been having issues with seizure control anyway and this just made it worse! Thursday at supper she was slumped over her tray for 3 minutes but came to. Friday morning, I called neuro in milwaukee, left a message with the nurse on voicemail. A few hrs later she returned the call. I was getting more worried, not about the illness but about the new weird eye rolling (they kept rolling up even while she (C) was talking to me). My urgent needs got our March appointment moved up to valentine's day! Ugh. Anyway, at supper on friday, she was eating a little (tiny) bit and her eyes were rolling again but she was still acting like normal. I actually grabbed my video camera and got it on video. She was halfway done eating a cracker and all of a sudden, slumps over and is not responsive! I call Brian in (but he was really useless as he was sick too, but worse than the kids were) and asked him what he thought. Well then I said, I'm just going to take her to the ER! Loaded her up in the van and off we went. Got to the ER and wheeled her in, she was all slumped over in her chair and the receptionist was not at the desk, but the nurse was at her station and we went by her and I said "Help her!" She jumped right up and looked at her and was like oh she's gray! Then another nurse from the little triage room ran over and we all went back to a trauma room. That was a first for us! Usually we get put into a regular ER room. (I asked after why the room looked different and that is how I learned it was a trauma room!). They got the O2 going and quick as a flash there were doctors and nurses all over doing their thing. She was given ativan for the seizure and they put in an IV and drew labs. Her depakote was 190! But it was not trough....forgot to say above...she puked up her depakote morning dose so that is why I called neuro also in the morning so she got her morning dose late cuz I had to wait a bit and try again at 11am per neuro nurse. Anyway! They tested everything, very thorough at our local ER...I have only great things to say about that place!! Wish we could do all care there locally! They did scans to check shunt, checked for UTI and swabbed nose for flu....boy was I surprised when that came back positive for flu A!! THOUGH, a girl in her class did test positive for it a few weeks ago (we all got a letter at the time). It was before xmas so I didn't think she would get it so long after. So then they moved her up to the PICU on the 4th floor for observation overnight. Her eyes kept rolling up all night. She was also given tamiflu as she just made the 48hr cutoff. We went home the next day. She rested all weekend and didn't end up going back to school until thursday! I tried sending her on tuesday but she had 2 big seizures and I went and picked her up. I think the tamiflu aggravated the seizures...they warned me in the hospital about that and it says it right in the tv commercial too. She is done with it now and has been good seizure wise the past few days. On thursday this week I started giving her a children's vitamin again (I used to try but she didn't have enough teeth to chew it good)...now that her permanent teeth are in she was able to get it down. I think it is really helping! She was so perky today and alert! They did increase her felbatol during the hospital stay which I am sure helps too. The monday after our hospital stay I called the neuro per the hospital dr and reported what happened, the nurse was not very caring (IMO). In fact, I felt she cut me off as I was talking so I didn't get to mention I gave C diastat on sunday for an extended eye rolling event. She refuses to communicate with me electronically and the way she acted on the phone friday and monday, I am really fed up. I realize they are busy, (2 drs quit this past spring), but really they need to get on hiring more drs if they cannot service the patients they have. I feel I should not be an intrusion on their day. I was so annoyed that I called our insurance provider to see if the other children's hospital in our state is in our plan or not (a few yrs ago when I checked they were not)....well guess what? They ARE now!! :) And C has a ped visit (wellness check) this coming friday so I will be talking to that dr to begin the process of switching to UW-Madison children's hospital. I'm sure she will have to make a referral for us to get in there. I just hope it doesn't take too long for the initial visit. When I was reading their website, it sounds really great....that they conference bimonthly with families of kids with intractable seizures (which C has). My jaw hit the ground when I saw that!! I can't even imagine that! But I am nervous about changing but I think for me, the pain of staying where we are is now greater than the pain of switching. Both places are about 100 miles from our house so distance is not really an issue. And I lived in madison for 1.5 yrs (a long time ago-went to college for a bit there) so I won't mind driving around the campus too much. I keep telling myself, it sure can't be any worse than what we have now.

    Plus, I am working on refinancing our house....getting a lower rate and shorter term...win win, but lots of paperwork and trying to clean the house for the appraiser to come this week. And oh boy....today....ugh...I was I was in my bedroom clearing out clutter (it is my dumping ground for everything-there were piles of insurance EOBs from 2011!) and I had C set up to play the wii in the living room (she can do wii sports on her own if we select the game for her-like tennis or boxing-which is nice)...well Tyler was grounded and he came by me and I said well, you can help C pick a different game but he was not supposed to actually play (he is grounded at home and away from video games this weekend=naughty at school). I could hear him setting it to a different game and all of a sudden I hear a clunk and he comes in and says the tv is weird, and I ask what was that noise? He said the wiimote hit the screen and now it is all lines! Ugh! We just *finally* bought a flat screen for the living room last yr as we didn't trust the boys to treat it good and we thought they were finally old enough. Well, he cracked the liquid crystals inside....ruined. SO we were all really crabby at our house today. I said he had to use his money and pay for half of a new tv and I would pay for the other half, but Brian is mad and says they should go without a tv in the living room (we have one in our room and there is one in C's room and one in the kitchen so we're not really without). But I am annoyed as it really punishes C as she likes to lay on the living room floor and movies...good to stretch out and she can roll and crawl. The one in her bedroom, the angle doesn't work for laying on the floor (it's mounted on the wall but the color goes black if you look up from floor). Sooooo, just had to vent somewhere! Hoping this week is much better as I can't imagine a worse week than the past 2 have been!

    Lisa O.
    Last edited by andromeda31; 01-19-2013 at 07:15 PM. Reason: misspelling
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #2
    Distinguished Community Member andromeda31's Avatar
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    Oh yeah, and in all that mess, I caught the flu bug too for a few days...all better now at least! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Sorry you've had such a tough week. Hope Caitlin is doing better now. I know what you mean about doctors. I get so tired of Tyler being looked at like he is contagious! Very few of his doctors actually touch him. It's really odd to watch cause he is so touchable. Very sweet and gentle in nature and very calming to be around. You need to be where Caitlin is understood, taken care of and where you are listened to. The lives and quality of the lives of our kids depends on that. Sure glad the ER went above and beyond to care for Caitlin and help her get better.

    Tyler spiked a fever out of no where last night and looked awful. Had some very weird seizures (even for him). I watched him all night, took his temp every hour after midnight, but it stayed down with the initial Motrin. Looking at his urine this morning to see if that is the culprit. He's had his flu shot, but I am watching and hoping it doesn't pop up on us as well. His little brother got the flu a few weeks ago in South Carolina and was also given Tamiflu. No one else in the house got it, which amazed me.

    Hoping this week is much better for all of you. Let us know how the new hospital and staff work out.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Oh Lisa, you poor sweet thing. Gosh, what a week from H---!!!! Time to sit down and do some deep breathing maybe? Get the kids to try it too? Failing that, you could get them to play 'sleeping beauty' - the idea is that they all fall down and play dead and only wake up when you kiss them. It's good for about 5 min of peace.
    Healing and relaxing vibes from me to you!!!! xoxoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa, Caitlin & Family))))))

    What a time you've had! I'm so glad that it is all over for you now.

    The good news: 1. Caitlin's is better seizure-wise! 2. Caitlin is responding well to her vitamins! 3. You have a terrific ER!

    The change to UW-Madison's children's hospital might be just exactly what you need. A fresh set of minds and experience to evaluate Caitlin. I sure don't blame you for wanting to leave the current neuro, when his "gatekeeper" treats you so shabbily. She needs to look up "compassion" in the dictionary.

    Perhaps the family can take a short break from the living room TV, so they can all appreciate its absence and its return, whenever that may be.

    Praying that the upcoming week is calm and uneventful.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Yikes! The eye rolling and passing out is scary. I hope everyone is doing better.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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