Thursday, February 11, 2010

How the Day goes

Last night was the first night I left Xander's side in a week; I had to tell him I was going to leave, and that his mom and Mindi were going to have a sleep over with him. He was not too sure about it at first, but after some more talking he allowed me to leave, I was torn about leaving, but I really needed sleep. I have been going on 3-4 hrs. of sleep for the last week, sometimes not sleeping at all. Xander has wanted nothing but his daddy this entire time, nurses, doctors, aids, they were all the enemy, even his mommy could only console him about 10% of the time. Up until yesterday I had not noticed how tired I was, or hungry; it really hit me after the Neurologist left, and I was shaking, I couldn't hold my hand still and I felt like throwing up. I took a 5 hour energy and when the 5 hour energy worked for like 10 minutes, I knew there was no getting around sleep this time. As I walked into the Ronald McDonald house to feed the twins and go to sleep, it felt as if I was on a fast elevator, I was getting all of these crazy sensations in my head, and I knew I had to sleep. It wasn't long before I was cutting logs, and woke up with crazy twins trying to cuddle with me in the morning.

We are MAD!

There has been a lot of emotions, good news followed by bad, encouragement, and help this last week. I was going to try to keep everyone up to date the last two days, but there were a few things more important than that. The first was spending time with the family, and the second was my sleep. Since I am feeling 100 times better, I will let you know what is going on.

The day after the Doctors told us that the surgery didn't work and that the blood work would have to show low levels of Dilantin to consider otherwise, we found out the results. All of the Doctors were super excited to inform us that the levels of Dilantin were untraceable, meaning that it was X stopping seizures not the Meds. Sarah was so excited that she hugged all of the neurologist; I told them that I was not sure how to feel. At this point, after hearing so many changing results I was so cautious to feel excited about good news, I let them know I was glad to hear good news, but cautiously optimistic. They all agreed that I should be, and that we have a long way to go yet, they advised that they were going to take him off Dilantin that day.
The Banner X's Pre-School made him

The rest of the day I struggled with telling anyone what they had told us, I wanted to share the news, but after so many ups and downs I was really hesitant, besides they were going to take him off Dilantin still. I think I spoke to about 5 people telling them what the Dr.'s said; it was much later in the day too. The struggle whether to believe them or not raged on inside, a little after midnight I told myself to just believe and went to sleep.
Photos hanging by his TV

It was 3:04am when I awoke to my boy having his first seizure, I was so pissed off, I remember thinking "Gosh dang it, why, why did they have to tell us that crap". I was talking him through it, and I noticed that that seizure was a bit different; I kept on telling him to breath, but was confused. After X came to, he started crying and I told him it was going to be okay, he looked at me, still crying and said "You didn't promise me this". I said "What? I didn't promise you what, seizures?" He said "Yeah". I had thought that I had felt my heart crushed to its fullest capacity until I heard those words, it felt like the last bit of life in it had been squeezed out. For weeks we had been telling him that the doctors were going to take his seizures out, that he was going to hurt for a bit (headaches ect.) but he was going to be better, and not have any more seizures. He was not going to have to wear his helmet anymore, and that one day he wouldn't have to take his meds. I did not promise him that after all of his pain, suffering, inability to use his arm/leg/face, and discomfort he would have seizures 83hrs. and 14 minutes later.
5 Days after 2nd surgery

I was trying to be hopeful that it was a minor setback but one after another after another seizure followed, until we were up to 11 and it was 9am.By that point I was so mad, I had already been more demanding than ever when the IV personnel came in and when they didn't do what I had asked I was sure to let everyone know I better not see them again, ever. Sarah was giving me that "Please stop being a jerk" look, but I gave her the "I don't care if they think I am being a jerk, the next person that makes my boy cry I am going to punch in the face" look. The Dr.'s ordered more Dilantin, a heavy dose, and came to see us about 2 hrs. later. They told us that they were confused, that they were not sure what happened. They explained that maybe they had not been aggressive enough during the resection, but that it was always better to take out less brain than more, because you can never put it back in. They said that the main center of the seizures may have overshadowed the smaller ones, they said there may be more abnormalities that are too small to see, or undetectable in the MRI scans. They said it could be a whole bunch of things, but they would all be guesses until they could start testing again.
The Scar

I was still so hurt, and anger was the easiest emotion to allow to surface, in anger I started crying, and explained how pissed I was. I think I was more telling them how messed up I felt more than yelling at them, I told them that it was unfair that we were that 14% and that it was not supposed to be like that, and now they want us to try again. One of the Dr.'s was teary eyed, as another explained that I should be mad, and that they were mad as well, and confused, but determined to help Xander live a normal life. They told us that as far as Xander's case went, it was supposed to be a slam dunk, and we should be getting ready to go home, they did not want to tell us that in the beginning in case something happened, and it did. They explained that for the next week, X would focus on therapy, and that would allow his head swelling to decrease. The retesting process would begin on Tuesday, and be complete in a week. After all the test are assessed, they would consider surgery to place the grids on whatever part of the brain needed to be addressed.

The reason they want to be so aggressive is because the sooner the better, the scarring is minimal, and as far as X's emotional state it is better for him as well. The way things are now, it looks like our best option because otherwise X has a seizure every 20-30 minutes. Sweet happy X is a lot more emotional lately, I can't blame him, I would be a mess. He is still having his aura multiple times a day, and scared that he is going to have more seizures. He still wants to take pictures of his incision, or look in the mirror at it; he is still talking about how cute nurses are, and how much he like Selena Gomez (actress). I try my hardest to be in an upbeat mood, I know that if I act all depressed, he can feed off of that, and that will in turn affect our healing process.
Showing off our ability to use our hand

So that brings us to today, and today has been uneventful. I came in after sleeping at the RMH, and was greeted by a ginormous smile. As soon as I got there Sarah started to tell me how emotional Xander had been, and that I was the only one that could calm him. She left with Mindi, who had drove up to see Xander and spent the night at the hospital, and the twins; leaving me with Xander. We hung out, talked and I started talking to him about how he needed to let nurses and doctors help him. He sort of rolled his eyes and continued flipping the channels and playing with the bed controls.
The Paparazzi took this photo of Zane
The rest of the say consisted of him and I hanging out, and talking about everything that was going on. When the Therapist came in he flipped out, I talked to him and told him I couldn’t do it all, because I didn't know how to do it all. He told me he would calm down and try, he tried for 10 seconds before freaking out because she was trying to help him walk. He was about 15 feet from me and stomped all the way to me, I kept walking away, and the therapist kept saying Xander your working harder then I had planned on working you. He threw himself to the ground and I sat next to him and calmed him down by telling him to breath. I have this certain way I talk to my kids when it is serious, they know I want to talk to them like that when I say "Okay, Let’s talk" I told him that, and we started talking, for about 3 minutes. I explained that it was really important that he tried with these ladies, and that I was going to be there to protect him if he needed me to. I was able to talk him into it, but barely; he did some soccer kicks with both legs and started crying again about 10 minutes later. The therapist said he did great, and that they would try again tomorrow.
What the hidden camera sees

After that X and I continued to tour the hospital, and went up to the PICU to visit our nurses up there. X and I visited with the family who were our neighbors in the PICU, the ones with the twin girls, good news there, one baby has been released (today) and the other could be a matter of a few days. I was able to really see one today, they are so tiny and precious, it made me miss the crazy twins. The other family we met while in the waiting room went home today, their family will be walking a tough road ahead; please keep them in your prayers as well.

We are lying in bed, X and I, and I am trying to get him to quit messing with the keyboard. The nurses and staff have kept him up and it is now 10pm, as much as we want to get into a routine we cannot, somebody always wants to barge in and do blood work, test levels of whatever or take vitals. I know they are doing their job but it is frustrating at times, here’s how the day goes.
The twins refuse to let mom out of their sight

Wake up around 8am, eat breakfast about an hour later, play for a bit while nurses switch, usually resulting in us repeating the story of why we are here, what his seizures look like, how well he takes medicine, where are we from, and how long have we been here. That is followed by vitals, meds, and visits from people saying they will be by later. Then Xander's team comes in and talks to us, and usually his surgeon follows, next thing you know it is 10:30 and he needs to get out of his room. Before we can leave we need more meds, and then we start going for a walk. We run into a doctor or a Therapist who tells us they have one more patient before they can see him, and they never some back around (Happened 3 times now), so I just keep walking and don't return. Lunch is not ordered because his medicine takes away his appetite, so we nap from 12-2; we wake up take meds and order food; which arrives the same time the therapist does who now is ready and X is not. We struggle through that and end up meeting the twins for more play time, which results in fighting because one of the twins will not stop telling Xander that they love him. That is broken up by meds, and that is followed by a crazy dinner, and Sarah and I trying to plan the next day. Sarah and the twins leave, X and I wind down, more meds are taken, vitals and last minute checks are completed. X and I fight about what we are going to watch, I start typing, he starts getting tired and begins messing with stuff, I turn off the TV, he falls asleep, I finish typing, then fall asleep. I wake up to a nurse asking if he needs pain meds, I ask him, he gets mad, it's 50/50 to whether or not he does, and we fall asleep. He twitches, or moves; I wake up and pray till I fall asleep. I wake up because a new nurse is here and we repeat the process.
Coloring wooden cars, and the floor

This post will probably be the most detailed and longest until sometime next week, we just don't have much yet. As far as prayer for X goes, it stays the same, healing so he can live a good life, and not paralysis. I love you all and thanks for the encouragement as always. I hope you know that I keep you all updated because we are all family now.


  1. Thanks for the update Dan. It has to be hard and exhausting to keep everyone informed and repeat the same story over and over. It just breaks my heart to hear li'l X suffer and agony the family must endure. Still praying and thinking about you all constantly. Give everyone love and tell Xander he has presents coming... I'm shipping the box today. I'll let you know the delivery day when I get it. XOXO

    Love you so much!

  2. Xander wanted me to tell you that he misses Aiden, and can;t wait to go to his house.

  3. Hi Xander! This is Campbell-(my mom is typing my message to you.)I miss you and I wish you were here. I hope you are feeling better. I asked God if he would make you feel better. I wish I could come visit you. Happy Valentine's Day!
    Love, Campbell

  4. Hi Xander! Our Dad just figured out how to use this blog so we want to say hello, we miss you and we will send you some valentines. You are our sweet heart! We love to see your photo's and to hear about you when your dad writes about you. We are praying for you. Most of Omaha is praying for you, Please know how much we love you. Bella, Hannah, and Olivia, and Andrea and Joe

  5. Thanks for the update and all of the pics, Dan. So fun seeing all of the boys having a good time together. Praying for you!