Sunday, February 14, 2010

Valentines Day, in the hospital

I am so frustrated, besides Xander having his first seizure in days, this morning, the weekend team is living up to the reputation they have with us of being incompetent. Well maybe not incompetent, but defiantly annoying and a bit on the knee-jerk reaction side. Xander takes 120mg of Dilantin a day, the nurse (Our least favorite so far, and the first one to be a repeat nurse for us) came in and told me that the weekend Dr.'s want to move it up to 200mg a dose, 400mg a day! that is like a 180% increase; I am not good at math so I am prob. wrong, but it's a lot. I told the nurse I wasn't going to let her give him that high of a dose without talking to one of them, she seemed okay with it, which worked well for her since any resistance would have only resulted in her having the worst day of her career.

I am no longer in the mood to dance the dance we dance; between new nurses everyday (with the exception of today), and weekend Dr.'s I have reached my threshold, even if for only today. This morning after telling the night nurse what his seizure looked like, the weekend neurologist came in about 20 minutes later and asked me the same question. I had to hold my tongue because I said "You know what....” I held it there, took a breath and explained the seizure again. What would have followed would have been "...why don't you quit being lazy, leave this room and ask the nurse or read her notes, and quit wasting my time.” Maybe it is the rough night’s sleep, or the fact that every weekend we deal with Dr.'s who are not on X's team, and seem to guess at what to do, but I have had it.
Maybe this is why I am going nuts, these are our only views

It is now the afternoon, I spoke to the neurologist this morning and we are raising his dose one time in the morning (by 30mg) and long-term at night (by 30mg), they said they understood my concern. I am not sure if they really did, or if they were annoyed, either way they listened. X had Therapy this morning and since Sarah and I went to catch a bite to eat, he chose Uncle Andy to go with him, thanks Uncle Andy. My parents, titi, and Uncle Andy all left this afternoon; we still have Nana Judi with us, and we are grateful for that.
More Wonder Place Artwork sent to X

We were made aware of some newer technology recently; it relates to seizures and seems to be the real deal. It is called a MEG Scanner, I am not yet sure that they have one at this Mayo, but we know they have one in AZ and FL. I looked on-line to see if there were any other places that have it, and wouldn't you know it; the University of Nebraska Medical Hospital in Omaha, NE has one. If this is an option for us we are going to have Xander tested on it, it is really hard to explain, so here is the link If you check it out    I am sure you will be as amazed as we are.

I almost forgot to mention it is Valentine’s Day, Happy Valentines! Sarah and I joke about our romantic day together in the hospital. I told her that I was going to buy some floating candles and set the bath in the hospital room. I told her after that we could order some sort of processed meat from the cafeteria, and I would draw the curtains and we could put the X to sleep in his bed and the twins on the sofa bed. Then we could finish the night by calling the nurse if we needed anything else; she laughed, so then I told her "Yea, I was just kidding" and laughed it off too. Just kidding, we both laughed about it, it is what it is, and being strong for each other is the gift we give each other right now. Although I can hear some girls saying “No you need to do something special for her”, I understand that and I won’t even argue that point because it is valid and she deserves that. So I made her a Valentine with the crafts upstairs.
X and his Crush 17yr.old Selena Gomez

I have to figure out some way X can send a message to Selena Gomez (Actress) his not so secret crush, I think he would be blown away if she even sent him some sort of thing back (I know it will be from her "people" and not her), he has the biggest crush on her.


  1. Awwe. I really like the right side of his smile! It's coming back. So glad you guys still have some help with Nana Judi. Ains and Ash sent X a valentine but it will arrive late. We sure do miss you guys... D

  2. Dan, Donnie and i just watched that video on the MEG scans and it is absolutely amazing! And to think, there was one just less than a mile from your home. I think that this scan will help X so much and restores hope for us with for this precious little boy's life. We are praying so much for you guys and X and just pray that this will provide more answers and hopefully he will have the same out come as Amanda! Tell X we love and miss him!

  3. I completely agree with you and am a little appalled that they would want to increase his meds like that. I've worked with several kids with seizures and that was the first thing I learned is to not do dramatic med changes! But then again... I'm not a DR. Still think it's a better choice to take it slow... So, you know I'm a little OCD. I befriended Selena on FB and emailed her. LOL! I asked for her to send a signed photo of her or something to Xander. I'll let you know if I hear back from her... hee hee. Can't believe the MEG scans... Truly amazing and a HUGE sign that you'll be home soon! The boys miss your boys so much... Love you to pieces... XOXO!

  4. I agree with D, it's awesome to see the right side of his smile show up! Love it!

  5. The MEG looks fantastic, praying that this is something that can be used to help Xander! Don't be disheartened by what's happened this weekend, your faith and strength throughout this is awesome and inspiring. Read over some of your other posts if you get a chance. God is with you guys.
    PS, The picture of your family at the top of your blog is GREAT! There is so much love there! :)

  6. Dan,
    Being a nurse I don't understand why there is no continuity of care,esp. at Mayo. That was something we strived for at Lakeside when I worked there. I do understand why they ask you the same question again. They need to make sure the "telephone effect" does not happen where the final story is completely different from the first one. Have you talked to the charge nurse about your concerns?
    Maybe no one wants to come back to the "stinky" room? LOL