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.

Wednesday, April 29, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

She's with me

Wow is about all I can say at the moment. This song is amazing. It's by Collin Raye. There's not a whole lot to add to it except to add how priveledged I feel that Colby and the girls choose our family to come to. That we get to see their beautiful spirits every day is such a huge blessing in our lives and one I try not take for granted.

Just copy and paste this link into your browser.
http://www.youtube.com/watch?v=mc5RDJnF2vI

Saturday, April 25, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Midnight

I got home with Colby last night at Midnight. He is fine. The exact words of the Nurse Practitioner were "The ID doctors think the vomiting is either neurological or gastrointestinal based." Ummmmmm so correct me if I'm wrong. You think he's neurologically impaired and his stomach is causing the vomiting. I do believe I should go back to school for a PhD. That is heavy on the sarcasm. I really liked the Nurse Practitioner though. He was a very nice man who paid me a wonderful compliment and for once instead of brushing it off as no big deal I'm going to accept it as it was given.

He told me that he meant no disrespect but for the hand I have been dealt I am one of the finest examples of a parent he has ever seen. He said he has seen all types of parents and for what Colby has been through he is in amazing shape and I need to take the credit for that. So I am here on my blog. Probably won't take credit for it later in the day but for now I feel like maybe we might survive instead of sink.

The Cat scan came back good. He started to tell me there was some scar tissue from the stroke. I told him that was old news. They did a chest x-ray. No pneumonia. Good thing because that one always worries us. He is consistently junky in his chest and the neurologist told us on discharge that if anything were going to kill Colby in the future it would most likely be pneumonia.

They also ran all the blood work again and it all came back good. His CRP or inflammation markers are 0.5 which is great. I never did get the sedimentation rate but he said it was good. Hopefully this all means that Colby can get off of the antibiotic on Thursday.

The neurologist who I am loving, actually called me on the emergency room phone to talk with me about his EEG. It didn't show any seizure activity but it does show that his background wave is off. It could be because of the stroke but it could also indicate potential seizure activity. So I think we will wait a week and then start him slowly on the Kepra. She said that in about 20% of the kids that start it they grow horns and a tail. That was in response to my question about potential side effects or the downside of starting him on it with no seizure proof. If that happens we'll take him off of it. I want him off the antibiotic before we start the medication though. So 8 hours in the Emergency Room to have them tell me it's nothing and send me home with a Zofran prescription for nausea.

I do know that if we had done all the lab work up here, he would have had something very wrong and then we would have had to drive down and be admitted. So because this is the backwards boy we drove down and he is fine. Which I am grateful for. Very grateful. Sorry for the completely unintelligible post yesterday that was going on but I guess it accurately described my mental state at the time.

Friday, April 24, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

ARRRRGGGGGHHHHHHHH!!!!!!

Spoke with the Inefectious disease receptionist today. Apparently my three phone messages being concerned about Colby still vomitting have been heard by anyone. So I called today again and oh big surprise they want me to trek back down to Salt Lake to get an MRI with contrast through the emergency room. Of course lets do that on Friday afternoon again when nothing will get done until Monday but we need to admit you just for observation. So I'll probably spend the weekend in the hospital again. Lucky us. If you hear random screaming through out the day it will just be me venting my anger and frustration.

Tuesday, April 21, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Possible Seizures

Tomorrow Colby has an EEG to see if we can catch one of his "episodes" on paper. He's been staring at the lights and kind of spacing out a lot since his first surgery 5 weeks ago. I thought it could be seizures but I was sure I was being paranoid. Turns out his teacher has also noticed them and thought the same thing. His neurologist said she is like 95% positive he is having complete partial seizures that are localized to one area of the brain. If they aren't caught they can progress to whole brain seizures. He had seizure markers while in the PICU after the stroke but they could never catch a seizure on the EEG so they took him off Kepra. She said if we don't catch it and it's very possible we won't because it is Colby, she is prepared to put him on it anyway just to cover him. She's worried about him she told me. At least we have one doctor who will listen.

It's a little creepy because he was doing this before his stroke also and so with his out of control blood pressure and this it is like living it all over again. I never thought I'd ask anyone to pray for my kid to have a seizure but if you read this before 10:30 tomorrow could you do that. I just want him to have one so we can rule it out as just a Colby thing or truly identify it as a seizure. Even a discharge would be better than a normal EEG. A discharge is kind of like a precursor to a seizure and it would show which area of the brain is having the seizures which would help identify which medication would be best to treat him.

So that's the latest update. He got his stitches out this morning and screamed through the entire thing. As soon as I told him we were going home he got really loose and sat in his chair without crying. I think he was scared we were checking back in for more stuff. The neurosurgeon recommended a rhizotomy in addition to getting a pump again. I think they clip a nerve or tendons or something to prevent the spasticity. Not a route I am even going to consider thinking about at this time. First I have to learn more about it, second I'd have to pray long and hard about doing something that permanent and third I'd have to wait to be prompted to do it. Right now all I feel like do is scooping him up and running away from every doctor I see so nothing else goes wrong.

Thanks everyone for the prayers and I'll post more as I know more.

Monday, April 20, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Happy Late Easter

Here are pictures from our late Easter yesterday. Jahnna wanted to know if the Easter Bunny was a boy or a girl so she asked John. He said he didn't know because the Easter bunny doesn't speak English. Jahnna told him that maybe the Easter bunny uses sign language and John said I don't think so all it does is wiggle it's nose. A very exasperated Jahnna told him "well just figure it out OK!" Unfortunately she is fast approaching the age of not believing and is questioning everything this last year. She wanted to know if I bought the barbies or if the Easter bunny made them because it had a to and a from on the back just like the toy boxes at the store. I thought good crud your only 5 couldn't the questions wait a few more years? I guess we'll just have to wait and see.

After we put Riley to bed Saturday night we dyed the eggs. Colby was not real thrilled about the whole thing. I think he just wasn't thrilled about pictures. The one picture of him laying on the pink blanket is him hiding from the camera. He was growling at me.

Finally the very last picture is a picture of Colby's IV medication. No pump you just hook that up to his arm and unclamp it and it runs for about a half an hour then you flush with saline and heparin and he's done for 6 hours. Hopefully we are done with antibiotics in two days but I guess the lab work will tell today. Typing this has reminded me that I haven't updated this in a week so I better do that real quick. I brought Colby home Wednesday night from the hospital. He has to have an iv every 6 hours. We had to rewire the PICC line on Monday because a student nurse pulled the stitches out and accidentally pulled the line back about a centimeter and a half. Colby's atenolol is doing great but I think we might have to up the dose. He is still having some periods of high blood pressure. It's usually when he is the calmest which makes no sense to me but he is the backward boy. We have a home health nurse coming out once a week to change the dressing on his PICC line and to take blood work and a urine sample. Because his kidneys were damaged you have to monitor his protein levels and hematacrit because nafcillin can cause more damage. What fun! Tomorrow we will go down and have his stitches taken out by neurosurgery. The incision looks good except that you can tell he's been opened up several times. We will follow up with the infectious disease doctors next Thursday to make sure everything is good on the level. That's about it for now. He is excited to be able to go back to school and see his friends. As far as getting another baclofen pump goes, I think we will give it some time before we make a decision.



John starting the bbq for hamburgers.


Colby watching Wubzzy outside after hunting for eggs.


After seeing this picture I have started my hcg diet again this morning. 40 more pounds to go. Wish me luck


Riley hunting for eggs


Jahnna hunting for eggs


Riley inspecting her bubbles


Colby hiding from the camera.


Jahnna's white Easter dress. She was so excited to have a white dress. We made her change into the other dress to hunt eggs because white and Jahnna don't work well. So far it has survived two sundays so I'm impressed.


Colby glaring at mom! You can see the end of his IV out of his shirt. That's what it looks like when it's not hooked up.


Jahnna waiting to dye eggs.


John hard at work decorating eggs.


IV antibiotics.

Sunday, April 12, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Hospital Updates

I promised some pictures awhile ago so here are some. My camera isn't the greatest so sorry for the picture quality. Colby is doing much better. His inflammation markers went from 29 on Thursday to 2.2 today which means the infection is almost under control. The infectious disease doctor said he could go home when he hits 1. Should be tomorrow or tuesday. I talked with neurosurgery today about his blood pressures and the nausea. They didn't want to send him home if he was still vomitting. We spent the last two days tracking his blood pressure every hour and writing down what dose of medicaiton he had just gotten and what type of mood he was in. His highest blood pressure was 151/104 which is a horrible blood pressure for an adult so for a three year old it is totally unacceptable and bordering on stroke causing. We don't need another stroke. So the neurosurgeon called the kidney doctor.

Dr. Nelson came by this afternoon and took a look at everything and is agreement that we do not have his blood pressure under control. Just because his blood pressure was perfect in clinic doesn't show a true picture. And since we had nothing better to do sitting here in our dungeon we decided we'd better track his pressure. He has agreed to start him on a beta blocker. Actonal I think is the drug. I can't remember off the top of my head at the moment. It will take a few extra days in the hospital to see if it is going to work but John and I figured that since we are here already we should get it taken care of so we don't have to come down again.

Colby should get his first dose tonight at 8:00. I think that his high blood pressure is causing alot of his spasticity. It should be the spasticity causing the high blood pressure but since Colby is the backward boy I've come to the conclusion that if we can get his pressure down to a normal range we might be able to help some of the dystonia and the sleep issues. I guess time will tell. Dr. Gooch and Dr. Nelson both have seen Colby do everything else backwards so they were in agreement that this could be the case with Colby even though it probably wouldn't be in someone else.

John will go home Tuesday and get the girls from grandma and as soon as we feel like we have the blood pressure under better control I'll bring Colby home. Sitting in the hospital is boring but I've been able to take a nap every day or go to bed early so I think I have actually caught up on some sleep. I think that it has been horrible for Colby to have to go through three separate surgeries to not have a pump but I don't think we ever would hav caught onto the blood pressure being so high if he hadn't had this happen.

I realize that most people think that this has been the worst month for us and Colby and while I never would have chosen to have him go through the pain and trouble he has experienced willingly I do see it as a huge blessing. I think that the Lord does work in mysterious ways. If we had never done this surgery in the first place we would never have seen how high his blood pressure was getting. There is a very good chance that he would have had another stroke or a heart attack if things had continued the way they were going. Sometimes things appear to be the worst thing in the world but when you compare them to something else you see that maybe they aren't so bad. I wouldn't change this last month for anything.

Yes it has been extremely stressful but hopefully we have found a cause to some problems we didn't think were so bad to begin with. Compared to where we were a year ago we are so blessed to be better off. Colby's quality of life has improved at least ten fold in the last year if not more. Our families quality of life has gotten so much better. Life compared to a year ago is a much happier and less stressful place. I know I've said before how thankful I am for my trials and that couldnt be any truer today.

We are blessed by so many wonderful things I can't begin to express my gratitude to my Heavenly Father, to our families and to our friends. Even though our family is apart this Easter day I have a firm knowledge that there is a plan for us and it is a wonderful plan. I have no clue what it is but I know that as I walk through my day I am never alone.

Colby is waking up so I better go but here are the pictures from the hospital.



Taking a little nap.


Easter baske goodies from the Easter Bunny. The hospital is great about giving the kids something on every holiday. Also the sherrif's dept brought around stuffed bunnies and had a huge rabbi that came with them.


Monkey socs for my monkey man.


The Easter Basket Colby got.


Smile boys


Watching a war movie with dad on the computer


This was the first time he was able to sit up in 36 hours because of the surgery. He was so happy to finaly be out of his bed!


Watching Wow Wow Wubbzy on his little DVD player that goes every where with us.


Before surgery waiting to go in, just killing time watching movies.

Thursday, April 9, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Pump Removal

Colby's baclofen pump was officially removed today by 3:00. He has had a very hard time recovering from surgery. Part of it is due to withdrawals from the intrathecral baclfen, the other is due to the fact that no matter how many times I explain the the pharmacy what time his meds are due and what doses he gets they always get screwed up. I realize that 7 medications is hard to keep track of but I know they can do it for kids going through chemo that take like 25 medications so 7 seems like it shouldn't be to difficult. Anyway enough ranting I'm just grateful that we have found the source of the problem and that it has been removed.

I'm starting to wonder if we had to go through this so that we could firmly decide that we really don't want a baclofen pump. I don't know if I can subject him to another major surgery like this any time soon. He has a drain coming out of the big incision in his stomach so that all the crud can come out that was causing the infection. Not a pretty site. I'll take a picture tomorrow but I don't know if I will post it for everyone. It is soundng like we will be here until at least Monday afternoon if not longer. It will depend on how he responds to the antibiotics. Right now his fever is still high and his blood pressure and pulse rate are definitely to high for a three year old.

I cannot even begin to explain the strength my little man has inside him to go through all of this. He still glares at the nurses and yells at the doctors but he is trying so hard to be patient and not scream all day for his mom and dad. He is so tired but he still smiles at me with his eyes.

The bishop came by today. We are so blessed to live in such a wonderful ward who are always looking out for us. He was down with his family and took time out to come up and visit with us. I know that there was a very good reason for us moving into the house that we live in. We couldn't have made it through the last year and half with out their love and support.

I wish I had more pictures to post right now but I don't so I will try and get some on here soon. Just one more thing to do on my to do list! Thanks to everyone who has been praying for Colby we can't thank you enough!

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

More news

We got down here to Primaries around 9:00 last night and were so surprised that we were direct admit instead of waiting in the E.R. for three hours. I love it when doctors know your coming and take the time to make your life easier. I cannot tell you how much we appreciate all of the people here on the NTU that still remember us from the first time. The Neurosurgery resident was waiting for us and gave us the plan for this stay. As of right now Colby is scheduled for surgery this afternoon. They will completely remove the pump this time and take more cultures of his spinal fluid and the blood pocket that was surrounding the pump. On a preliminary culture both were highly infected.

Colby's little body sure goes through a lot without showing what it's going through. Yesterday his fever was harder to break and he was getting more grumpy so I figured it was time for the spinal tap. The neurosurg nurse practioner was working on it from her end down here but I called the hospital in Logan and talked to a fabulous switch board lady who made several phone calls for me. She called me back with in 15 minutes appologizing for taking so long to find out what we needed to do to get him a spinal tap. I was floored at how helpful she was. Again I cannot tell you how grateful I am for the people we come in contact with that help us out with Colby.

We went to the ER and they did the spinal tap and gave him a round of antibiotics and then sent us down here. We will be here for a minimum of three days until the cultures can all grow out and they can determine which type of meningitis he has and what is infecting the pump site. Then we will go home with a more permanent IV line. Crazy that doesn't even phase me anymore. We had a PICC line (Totally don't know if that's how you spell it so forgive my made up spelling) before when he came home because of a urinary tract infection that wouldn't clear up wit oral antibiotics.

Maybe if life wasn't so crazy I might actually think about going into nursing after all of this. Then again probably not. I know for sure I can't handle broken bones. I know after everything you'd think that wouldn't bug me but I can't even look at pictures of broken bones. In fact I'm creeping myself out just typing this so enough of that.

We are so grateful for all of you who have prayed for Colby and continue to keep him in your prayers. We know that they are heard and that he and our family are being watched over. I know the past few days I've been pretty down but I was reminded that we are better off than we were a year ago and there is much to be grateful for.

The lil man is awake and not happy that I am typing so I will post more as I know more.

Wednesday, April 8, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Update to the update

Spoke with Sid on the phone. He has a big infection some where. She talked to the surgeon who wants a lumbar puncture and to look at the spinal fluid. The wonderful receptionist at Logan Hospital is trying to track down a doctor for me to get an order written so we can get it done today. It's nice to live in a small community where people who don't know you are still willing to do all they can to help a little guy. I am grateful for people like that.

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

waiting on the neurosurgery nurse

Colby's blood work is half way done and some of his counts are elevated showing inflammation. So now I have a call in to the neurosurgery nurse to review the lab work and hopefully (everyone pray really really hard) he can just get an antibiotic prescribed and stay at home. I'll update as I hear more. On a side note you would think I would be able to spell neurosurgery correctly after typing it so many times but I still have to spell check it. Seems like the u should be before the e. Funny the things that come to mind some times.

Tuesday, April 7, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Fevers

Colby had a fever after his surgery and it wouldn't go away. Finally Sunday they gave him motrin and it left. So we came home. Sunday night it was back again. I took him to the pediatrician yesterday to see if they would run the blood tests that the nuerosurgery residents wouldn't run. Poor kid had to have a catheter to get a urine sample and there was no urine to collect. So we bagged him and came home hoping we could get the results before today. They came back clean so the doctor ordered a whole set of blood work to be done. So back to the lab we went, just before they closed. I figured some of them need 48 hours to grow a culture so it was stupid to waste 12 hours last night. Haven't heard any results yet but if none of the cultures grow then it will be a spinal tap next to rule out meningitis. I would love it if my boy could catch a break.

Not really sure why but I'm having a hard time with all of this. I guess I just wish he could talk and tell me if he's hurting or sad or upset or what ever. I miss his voice on days like today. In his blessing before the surgery it said that there are people who need to meet Colby and that he will bring light to their lives. I know it's true but on days like today I wonder where the light is in his own life. It seems so dark to me sometimes that I hope he can look back on his life and see it as being happy and not as hard as I see it.

On a brighter note, it seems Riley thinks that life is a dance. She keeps saying "Come on guys, shake your body!" And then she shakes her little bum. As I type this her and Jahnna are outside jumping on the trampoline and getting along for the moment. I hope that her and Jahnna can be as good of friends as Colby and Jahnna were when he was this age. Jahnna keeps saying that she misses the old Colby and I hope that while Riley can never take his place she can be the friend that Jahnna needs.

Sunday, April 5, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Home again

We left the hospital today at 12:00. I told the doctors we were leaving. Two of them asked if I was sure. Colby has been vomitting non stop since the surgery but I know he's not dehydrated and I'm not going to let him get dehydrated. Kind of a blessing with a GJ tube. He can't throw up the fluid I put into his jejunum. Anyway he has calmed down a lot since yesterday and he's not throwing up nearly as much so we left. The new rehab doctor did up his pump 30 micrograms. She again asked me if I was sure I wanted to do that. Like I told her, I know my son. I want to go up 30. So today she listened. And what a surprise he did not overdose on baclofen. Anyway I am thankful to be home. The girls are still at Grandmas but they will be home soon. I am bummed I didn't get to see Conference. Wow Wow Wubbzy was on non stop even through the night to keep Colby somewhat happy. I guess that's the beauty of modern technology. On demand will have it for the next month so I will eventually get to hear what was said. Any way I am tired even after getting some much needed sleep last night. So that's it for today.

Saturday, April 4, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Overdose

Due to a decimal point being in the wrong spot, Colby was recieving 5 mg of artane every 6 hours instead of .5 mg of artane every 6 hours. The artane is for his dystonia or muscle spasms. Overdose can cause high fevers, hallucinations, spasticity, agitation and siezures. The only one we didn't experience was the siezures thankfully. He recieved 3 doses of the higher dose before I realize what was wrong at 4:30 this morning. So I have officially slept 2 1/2 hours out of the last 36. I'm almost punch drunk since it's 11:00 and I haven't had a chance to eat anything either. And now the rehab doctor on call doesn't want to up his pump dose until tomorrow because she thinks he's to loose. The goal is to get him off of oral baclofen. We can't come off oral with out a pump increase. He doesn't work like a normal kid. We've tried. But what do I know I'm just the mom.

Friday, April 3, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Surgery Revision

I've thought of many ways to post this post in the last 16 hours. The first version wasn't fit to print I'm positive it would have been laced with a lot of profanity. I don't normally talk that way so you can understand how mad I was. I wanted to punch walls or doctors. I'm not sure which one I wanted to punch more. I firmly believe that they need a room at all hospitals for mothers who have just received bad news. It would be equipped with punching bags and treadmills. The punching bags would be for the ones who are very very mad still and the treadmills for the ones filled with anxiety and worry but are sick of walking the same hallway over and over.

Yesterday we came down to have his pump adjusted and to replace his GJ tube We got here at 10:15 in the morning. At 11:15 they called us back to change his GJ tube. When we walked into the fluoroscopy room instead of the special procedures room I knew someone messed up. They thought he had an NJ. Colby hasn't had an NJ in over 20 months. I calmly and politely explained what needed to happen. We waited some more. 45 minutes more. They changed the tube in 5 minutes. Then we went up to Rehab to have his pump adjusted. After talking with the wonderful Amy we thought he was having withdrawals and so she sent us back to x-ray. We waited. A half hour. They took 3 x-rays. We waited 15 minutes for the radiologist to read them and decide he wanted one more. Then we waited. 30 minutes. He came out and said he was consulting with the neuro surgery residents and trying to get a hold of Dr. Gooch. In the mean time I talked with Amy who told me what dose of oral baclofen to put him on at home so that we could go home until they could schedule surgery. We waited for the x-ray department to decide that since they couldn't track down Dr. Gooch they should try Dr. Walker. What I suggested an hour before. They found the neurosurgery resident. He didn't want us to go home. He said I'll track down Dr. Gooch. We waited. 30 minutes. Finally they talked with Amy who said go home. Did I mention I had talked with Amy. I had.

They rescheduled his surgery for this morning at 8:15. We are waiting as I type this. I have calmed down. My frustration over his catheter coming coming completely out and his pump shifting in his stomach have diminished. I was still wanting to punch something or someone at 8:00 last night. A priesthood blessing helped calm me down. I was reminded of how much Heavenly Father loves us and that all trials are for our good. Even though we don't know why they happen there is a plan and there are people that Colby comes in contact with who need his example. He is a choice spirit and has great things in store for him. I know this. I am grateful I had 16 hours to calm down before I posted this. I was able to gain some perspective and hopefully not offend anyone reading this. I will post more after we get to his room. We are in 2012 in the NTU. They love us there. We love them too!

Wednesday, April 1, 2009

My blog has moved!

You should be automatically redirected in 6 seconds. If not, visit
http://www.amundsenhouseofchaos.com
and don't forget to update your bookmarks.

Not moving

So as of this afternoon it looks like we're not going anywhere. He called HRC today to find out what was going on with his orders and they said it was still pending. So then he asked if we could just stay and the guy said there wasn't any reason we couldn't. I love that the recruiting command thinks they have control over their reserve recruiters when in fact they don't. So far now we stay.