Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Monday, August 24, 2009

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Not me Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Today is supposed to be Not My Child Monday, but we've had such a lovely week that I'm going to include everyone in on it.

My husband would never throw out his back shoveling dirt. He would listen to me on the day he did it and go to the emergency room. He would never tell me he was fine and didn't need to go even though the pain was much greater than before he had his original back surgery. My husband ALWAYS listens to me. ALWAYS. (You may want to insert a heavy level of sarcasm in here. More so than normal!) He would lay on the floor as he was instructed and not lay on a couch all day and then lay on a bed that isn't nearly firm enough. He would then the next morning be able to walk and he would not fall down and have to call the paramendics to come take him to the emergency room at 6:30 in the morning on a Sunday. Loving husband that he is he would never never do something like this.

I would never almost go answer the door in a t-shirt and turqoise underwear. I would have the presence of mind to realize that we live in a small valley were the paramedics are probably not that busy on a Sunday morning at 6:30. I would realize that they would be at my house 7 minutes later and I would be ready to greet them with a smiling face. I also would not be holding my screaming four year old who was dressed in only a diaper and t-shirt and did not like seeing his father being placed into the ambulance.

I would also realize at 6:30 in the morning that my husbands gun was laying on the dresser and bullets were out and that a police officer would accompany the afore mentioned paramedics to our home. I would not stupidly blurt out "Oh I meant to put that away before you got here." Making it seem like I was trying to conceal a weapon from a cop. I am always much much smarter than that.

I would not go down to wake Jahnna up so she could get ready to go with her grandma when she got to her house. Jahnna would not respond with "I know I know your taking Colby to the hospital, I'm going to Grandma's with Riley and you don't know when you will be back." Because no 6 year old should have a routine that includes this scenario on a regular basis. When I explained to her that it was Daddy who was going in the ambulance (Which is something he had never experienced as a patient before. He had gone on ride alongs when he was in an EMT course but never as the person being transported.) Jahnna was like "Oh ok I'll get ready." Didn't really faze her that it was her dad going either. We must never spend large amounts of time in and out of hospitals.

Riley would never tell her mother to "Turn blue and to Back off Jack." When she didn't like being told she couldn't eat cake for breakfast. My two year old is very well behaved all the time. She is very respectful of all adults especially her mother.

Colby would not laugh hysterically this morning when I told him he was in charge of dad and that he had to make sure dad didn't get up off the floor and hide from mom. They are currently watching Kelly's Heros. Because all 4 year olds love old clint eastwood war movies. This same four year old would never force his dad to watch war movies all day yesterday but only the battle scenes. During every scene where there wasn't shooting he would not scream his little head off demanding to see bullets fly. He also would not actually say "Shoot em" clear as day during these war movies. My little boy abhors violence and war. Or not. It always amazes me the things he can say versus the things he cannot. Because some days he speaks clearer than others and he's starting to say many more words than before this just reinforces my belief that his brain is still working to repair the damage that was done and that he will speak again.

Well that about sums up our day yesterday. To much going on to do the entire week.
Just for fun John decided to have his L5 and S1 vertabrae bulge and trap a nerve in his spinal column. He's feeling better now that he's on copious amounts of hydrocodone. Goodness I must be feeling smart this morning I've used lots of big words today! I'll take him to go see an orthopedic surgeon tomorrow and we'll see what he has to say. The radiologist said he was probably looking at another surgery in the near future. But that's a whole other post! Colby's getting restless so I better go see why the bullets have stopped flying.

Thursday, August 20, 2009

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5 seconds

I have about 5 seconds to update this. So here goes! We've been busy. Doing what I don't know but we've been busy I promise! We went to SLC the other day to get Colby's botox done. He's been grinding his teeth a lot the last few months and it drives me crazy. Anyway we got down there with seconds to spare before our appointment. Then the doctor comes in and says she'd be more comfortable doing it under anesthesia. So we had a nice visit. Talked about some of his spasticity issues and then came home. Wasn't a totally bad trip. Colby did well with it and John and I got to listen to alot of talk radio.

We went to the zoo on John's birthday. Of course I forgot the camera. So no pictures. Well not totally true. I have pictures but they are on my phone and since no one reading this blog follows me on twitter you can't see them! Ok so it's totally my fault no one follows me on twitter cause I never told anyone I actually signed up. That's not a problem is it? Anyway if you want to follow me (when I can finally figure it out) My name on there is eamundsen. Real original I know. Or I could learn how to download my pics from my phone album and then post them. It would probably be easier!

Some where during this time I dropped my cell phone into the toilet. EWWWW. So I was phone less for a week. But I got the really cool new touch screen highlight from t-mobile. Just in case you were wondering. I also decided that I should sign up for insurance as well. Lesson learned. I dont feel so bad about dropping it in the toilet after learning that 2.9 million women a year drop their cell phones into toilets. At least I'm in good company.

Anyway my 5 seconds are up because Colby is throwing up again. We'll be heading to an Ear Nose and Throat doctor next month to see if maybe the granulation tissue growing in his ear might be causing some of the nausea. Fun times for all.

Friday, August 7, 2009

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Happy 2nd Survivor Day

Colby is a survivor is so many ways. Today marks the second anniversary of his stroke. In this 24 hour period two years ago our lives were irrevocable changed. Not for the better or for the worse. There is really no way to make a judgement call on that. I suppose that I could do the poor me pity party all the time but I choose not to. It's to exhausting to be honest. I have to much to keep track of and to get done. I am constantly amazed at how many people tell me that they admire us for what we do with our family. I don't think we do anything special. We live our lives one day at a time just like everyone else. Have there been occasions where we have lived one minute at a time. Absolutely. But in the end, Colby made the decision to stay so what choice do we have but to follow his example. He is such an example to me. He smiles everyday. How can I not smile when he can? How can I not look at the bright side of things when he finds joy in the simple pleasures of life?

First day riding the bus

In the last year we finished up his Hyperbaric treatments for awhile. So he has had 80 treatments all together. The difference in his comfort level has been profound. We had a relatively uneventful winter but we had to go and mix that up this spring. We put in a baclofen pump which came unstitched after three weeks. So we went back for emergency surgery. After three days we went home. Two days later we were back to take the pump completely out. He had staph meningitis. Because why wouldn't he? It's what Colby does. He hears all the potential side effects makes a subconscious decision to go through them all and then does them exactly as we were told.

Hyperbaric Chamber

He is a trooper! Three surgeries no pump. You would think I would be mad. To a degree I still am. But while we were there we found out his blood pressure was 172/112 consistently every 6 hours. That's not a good thing when you are three or four or forty four for that matter. So we added two more meds to the list. Because why wouldn't we? It's what we do. Meds, meds, meds and more meds.

In June I made the jump to night nursing. I hadn't slept longer than 3 hours in over eighteen months. I had to do something. Shannon if you are reading this, you are a life saver literally! I reread his sleep study right before we switched. I had forgotten that it said his sleep pathways were damaged and that the chances of him ever sleeping through the night are very very slim. So 5 nights a week I get sweet sweet sleep. It's amazing how much more energy I have and can take better care of him during the day when I'm not so exhausted all the time.

Anyway I got off topic. This post is about Colby not me, even though it's really about all of us. I fully believe Colby had a choice this day two years ago. I remember whispering to him. It was the hardest thing I have ever done. I told him that if he needed to go that we would be ok. I loved him and I hoped he would stay but if he made the choice to leave us I would see him again. It felt like he wavered for a few hours. Like he couldn't make a decision. Then there was as quiet of a moment comes when your in the ICU on a ventilator and a dialysis machine. I felt peace. It wasn't strong, it wasn't sure, it was a brief moment but I knew in my heart that he choose to fight. I knew he would fight until he won or until his body couldn't fight anymore. There were still three more weeks of very touch and go times.

Mohawk after they took the EEG leads off. We couldn't wash his hair really well from all the sticky glue so we gave him a mohawk.

We were told to consider taking him off the vent because his brain activity was so low. I told the neurologist that as long as there were waves he would stay on. I don't think (looking back with some perspective) that she meant we should take him off right then. I think she was trying to prepare us for the possibility. I don't think she expected him to live. Not many people did.

We went to breakfast while he went to have an MRI. All he had at that point was the dialysis stuff in him. When we got back he was hooked up like this. He coded during the MRI and they put him on a vent because he wasn't breathing on his own anymore.

When your child is given a diagnosis there is always some amount of uncertainty and fear. I don't think it matters what your child is diagnosed with it still comes. There is always a grief period. Always. Some people have what other people see as "easy" problems and others have what people might see as "difficult" problems. I have come to think of it as a matter of perspective. I have always said I couldn't handle a child with diabetes or with autism. Why those two stuck with me I don't know. I've learned I need to be much more specific in life. But really, who would ever think to say I can't handle a child who has a bilateral basal ganglia infarction, loses his motor skills, ability to speak, eat, or do the basic things in life? I didn't know enough to say I couldn't handle it so I had to decide to handle it.

Off the vent but still doing dialysis. The tube in his nose was feeding him.

I've talked about grief before on this blog. I don't know that I'll ever stop talking about it. Just because you grieve doesn't mean it's constant or that you focus your life on it. At first you do. But it also doesn't fully go away. It's always there in the back of your mind, kind of like a shadow hanging over the rest of your thoughts. I think I will always have a hard time watching boys Colby's age play. My brother and his wife are having a little boy this month. I am so happy for them and so sad for Colby all at the same time. It is bittersweet to see their joy and still feel my own pain. I hope I explain that right. I'm not sure it's possible to put it into words. There are days these emotions surprise and shock me even still. My hopes and dreams for Colby had to be replaced all in the matter of one 24 hour period. I still have hopes and dreams for Colby but they are different ones now. You go through life thinking one day doesn't really make a difference in the grand scheme of life until one day changes everything.

I was cleaning out the toy room this last week to have a garage sale. An ordinary thing to do in most households. Yet after 30 minutes I was sitting on the floor sobbing. Holding Colby's football that had his name written on it. I didn't expect it to hit me that hard. And so for 5 minutes I let myself feel it, then I put away my grief to move forward. Colby is a survivor so I will be to.

This picture is actually before he went to Primary's. It's the day after his appendectomy when we still didn't know anything was wrong. See how not puffy he is. In the next picture he is swollen because his kidneys stopped working.

What I am trying to get at is that today is a happy day. Really! We have so much to be thankful for that I choose to focus on all that we have on this day. We have met more amazing people than I can count. We have seen the Lords hand in many areas of our life. We have felt the angels that surround our home. Some might wonder why it's taken me this long to share the pictures of his story. The hole in my heart has finally healed enough for me to start sharing. It's something I need to do. I feel compelled. If his story makes one person aware of what e.coli can do to a child it will be worth it in the end. Colby has a story to tell. Maybe not with his voice (even though I believe he will talk again) but with his life. He inspires me to be a better person. He makes me put perspective on my life. Life is precious and it's to short to waste on the unimportant inconsequential things so many of us get hung up on. When I feel myself doing that I force myself to step back and remember the things that truly matter. He reminds me that each day is a gift and that I had better make the most of it. If he has to fight hard then I will fight harder for him. And so that demands that our family together become survivors. As so we go on surviving.

(Ironically as you are reading this we are probably at the kidney doctors office. Funny two years ago today they didn't catch that he was having a stroke for over 20 hours and now we're back again. I actually find it slightly amusing.)

Kidney failure. The bandage is covering his central line that went directly to his heart. His stroke had probably already started at this point but I can't be sure because I didn't time stamp the picture. I do know they moved us up to the third floor within 12 hours of this picture being taken so I think he was already having the stroke at this point but nobody caught it.

This video is one my mom and sister made for a class they had to take. To be honest I have watched it twice. John came home a year ago and found me sobbing over it. He thought someone had died. The second time was today. It's about 6 minutes long.

Tuesday, August 4, 2009

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What have we been up to?

It seems like I've been having a hard time keeping up with the blog this summer. Life is a little crazy like always around here. Riley is getting big. She's started on a potty chair. She's a little bit more independant than I would like. I don't know she's even used it until her naked little bum comes running out of the bathrrom yelling "yeah Riley go in the toilet!" She's even decided she can dump it into the big toilet all by herself which means I'm cleaning the bathroom today! The first picture of her is after she's been eating a bowl of soup for breakfast. It's literally from her nose all the way down to a spot on her big toe. I don't think she does anything without making a huge mess. The next one is her being a bug. She didn't keep it on very long since it was like 87 degrees inside Colby's room that day.

Next we have Jahnna with her self portraits at the garage sale we had on Saturday. She was such a big help and she sold enough popcorn balls to earn half of her bike! She's been wanting one all summer but we told her she had to earn half of it either through allowance or some idea she came up with. I think it would have been cheaper to just buy the bike instead of all the ingredients but she is so proud of herself for doing it. So it was a good lesson.

Yesterday was John and my 7 year anniversary! Holy Moly where has the time gone. Considering Jahnna was born 9 months and three weeks later we don't really remember what it was like to not have kids around. So of course the best way to spend the day was with all of us together. We went out to the trout farm in Smithfield. It's so much fun! The pond is full of crazy big trout. Seriously we hadn't seen one quite as big as the one Colby caught though. It was hiding in the far far back corner of the lake. No wonder it got so big. It was at least 20 inches long. Huge for a rainbow trout. It flopped out of the net 3 times. Almost went back into the pond twice. Jumped out of the bucket 4 times. Took getting hit with a huge rock over the head like 5 times to finally get it to stop moving. Your not supposed to slit their throats on the bank of the shore you have to wait till you get back to the office. That's why the need for the rock.

Riley was a little pill the whole time. She kept thinking that the whole fishing pole was supposed to be in the water but she had fun. Jahnna is definitely not a warm weather kid. It was only 95 degrees but her stomach was cramping after 1/2 in the sun. As soon as she got some electrolites she was much better. I told her she needs to go live in Alaska. She better hope the army never stations us in Phoenix! She wouldn't even make it through winter.

Oh and last but not least Riley has some new choice phrases. "Stop, stop it now, I'm the boss you are a kid (told to mom of course), I'll do it and you have to stop now" are some of the favorites. Our house is getting mighty demanding these days!