Tuesday, March 29, 2011

Update March 29th 9:01 am

I know that it has been a few days since my last blog, so I'll catch you all up on what's been going on. I'm back home with the kids for a few days, which is bitter sweet, so nice to be home but hate to be here without Ace. I'll be going back to be with him in a few days.

Back to Acey's progress, rehab is going to be so good for Acey, they are constantly working with him, whether it's the OT, PT, Recreational Therapy, and Speech Therapy, Doctors coming in to chat, trying to eat and trying to gag down his ensure which he hates, he always working on something, just swallowing is a chore for him. In the past few days Acey has started throwing up in the morning, yesterday it was starting to occur more often, so they have put him down one notch on his eating, so he is back to soft foods only. We are hoping that this will help. His bowels are working much better, GREAT NEWS!! So today the whole Therapist team will meet together and go over their plan of attack, then later this week I'll be back down with Acey and have another meeting with everyone and then we should have a better idea on what we're up against.

Saturday, March 26, 2011

Update March 26th 11:00am

Acey had a ruff start to his morning, he threw up his breakfast, I asked his what was wrong and he said, "it was gross". So the nutritionist just stopped in to see what Acey would like for breakfast and snacks and I told her he liked chocolate muffins, well she has never heard of a chocolate muffin before. She said where would you find a chocolate muffin? COSTCO HELLO, she was looking just as strange at me as I was at her, it was pretty funny.

Acey's got a pretty heavy work load today 7:30 am -9:00am OT, 11:15-12:00 PT, lunch, 1:00pm-1:45pm Speech, 2:30 pm-3:15 PT again. By the end of this coming week we will have a better idea of how long he will need to be here for.

Good news today is that he is not going to be eating oatmeal anymore! And he was able to put on his shirt!!!

Friday, March 25, 2011

Thursday, March 24, 2011

Update March 24th 12:17pm

The spinal tap that they did yesterday results came back, the protein levels have not gone down like we were all hoping for. Which means there is still infection, it's gone down slightly but the levels are still pretty high. They are not sure how long it will take for the infection to leave only time will tell.
Some good news is that Acey's staples are coming out today! The incision looks great and Acey just saw it for the first time just a few minutes ago and all he could say was "WOW that's ugly". Some other good news is that he will be going to Rehab tomorrow. He can't wait to get to work on rehabilitation, the sooner he gets started the sooner he can get home. He can't wait to see all his buddies at the Merc in the mornings and can't wait go out for dinner with his State Championship team.
We just want to thank all the people here at the University Hospital that have helped him progress to the point where he can move to the next step, which is rehab. The team here is amazing to work with and have been a huge blessing in our lives. Everyone from the Neurologist, nurses, aides, eyes doctors, infectious disease, surgeon, scientist, radiology, OT (aka"Beth"), and PT, medical students & house keeping, they are all amazing and thank you!!

Wednesday, March 23, 2011

Update March 23rd 9:18 am

The Doctors just left and when I say doctors I think I counted 11 of them!!! They have told me they're just like Grey's Anatomy but they're just not as good looking. It's interesting to be at a teaching Hospital and see how things are ran and how they teach the up and coming Doctors. So, they said that his MRI that he had yesterday looked great, there was no new damage that they could see, and maybe a little bit of signs that it was starting to heal. Great news! So, today Acey is getting another spinal tap which will be now 4 total, and we are hoping that the infection is gone. Normally spinal fluid is crystal clear just like water, but Acey's has been cloudy with a tint of yellow, which is of course is not normal. We are anxious of course to see how it comes out, that should take place later this afternoon. As for the rehab they are thinking he won't go over there until later this week or this coming Monday. They would like to see him get a little more alert and build some strength back up. Once he is rehab then he will be working all day trying to regain what he has lost, which we are all excited for. Yesterday he also went to the Moran Center where they checked his eyes once more, and they said his eyes look great no damage to them at all. We are hoping that once his brain heals that his eyes will be back to normal right now they jump around so much that everything is blurry. We won't know anymore on the eyes for a couple of months, we are just hoping that his eyes will calm down soon.

Tuesday, March 22, 2011

Update March 22nd 9:21 am

Sorry about no post yesterday the Internet was down. So, I'll update you on the last two days. The doctors have let me know more then once that there were going to be ups and downs, well yesterday we had both. I'll start with Sunday, he was laughing and joking it was like we were well on our way to recovery, and then Monday hit us hard, Acey was really tired and not feeling as well as the day before. The physical and occupational therapist came in and worked with him for awhile and decided to see if he could stand and walk. He went about 10 steps with help from 3 people, he had to rest for awhile then made his way back to his bed. He said that he couldn't believe it would be so hard to walk. His balance is still very poor and his eyes are still jumping around which doesn't help. His head is starting to tremor every once in awhile, and the Doctors are not sure why this is happening, if it's because of being tried or if it has to do with his brain injury, so we are keeping a close eye on that. Yesterday early evening the Doctor came back to see Acey and access him once more, they told us that there is still a chance that there is permanent damage done, and that he may not gain back his motor skills. This was not the news any of us wanted to hear. They said that in the next couple of months we would have a better understanding of the damage that had been done and what long term effects there will be if any.

So today is a whole new day and lots going on. Acey is getting another spinal tap to see if the infection is gone, and possibly having another MRI to look at his brain and see if the swelling is getting any better. He is also heading over to the Moran building to have some tests done on his eyes to make sure that he is not losing anymore of his sight, and hopefully they can figure out some kind of glasses that will help him see better.

I told Acey today that we needed to make a list of all the blessings that we do have, sometimes we just have to stop and look at the bigger picture (which at times is not real easy to do). But it didn't take long to start listing all the blessing that we do have, Acey still alive, he has a sharp mind he is still strong, he is not blind, he is a hard worker, we have 3 wonderful kids who are healthy, we have the gospel in our lives and know that our Heavenly Father is watching us and we are not alone, that we are a family forever and this is just another learning opportunity, Acey and I have a wonderful marriage and we are best friends and are growing closer to each other everyday. While being in this hospital we have seen a lot of tragedies around us and we are so fortunate for the knowledge that no matter what we will always have each other, and that our family will be together forever.

Because of Acey's rare condition, Acey and I have to decided to keep him here for his rehabilitation. University Hospital is well equipped to handle his needs and specialize in Neuro rehabilitation. Plus all of the specialist are right here and they are watching his progress and helping us all along the way. Even though he will not be close to home we feel this will give Acey the best chances of regaining mobility.

Sunday, March 20, 2011

Update March 19th 4:57pm

Hello Everyone!!! What a great day so far! Acey is doing so good each day he gets better and better. I told him last night that I couldn't wait till morning to see him improve, and he did! The Doctors came in this morning and told us that the feeding tube can come out. He has been eating on his own for a day so we are all thrilled. Plus he gets his catheter out today so he is now completely free from all tubes, and IV's. We are hoping that this week he will be getting out of the Hospital and then he will be going into a Rehab facility. We are not sure how long he will have to be in Rehab, they say it's hard to tell with brain injuries on how fast it takes to recover. So good news for here on out!!! And soon we will be closer to home if Twin has what Acey needs.

Saturday, March 19, 2011

March 19th 4:24pm

Today Acey is showing signs of small improvements. He can eat a little bit more then he did yesterday. Because he has been maintaining his status, and the doctors feel that the inflammation has stopped progressing and is now getting better, we are looking into Rehab for him. We are hoping for early this coming week, to be moved into a rehab facility, either here at the University Hospital or in Twin Falls. We don't know how long he will have be there for it all of that depends on how fast his brain heals and how fast he can regain function. He is talking more and staying awake more throughout the day with a little help of some drugs. His eyes are still really blurry but so much better then when they told us that he was going blind, and everyday there is little bits of improvements. So, we are just flying by the seat of our pants not really sure which direction to go, but hopefully in the near future we can be back home.

Friday, March 18, 2011

Update March 18th 6:42pm

Today Acey went back on his feeding tube, which he hates, but the good news is that he is still able to eat soft foods. Everything else is about the same not much has changed. We were thinking that today would be the day that we would get some kind of news back from his biopsy so we all have been waiting and waiting. Well, the Doctors just left and the only news that they had was that they found inflammation. They said that there are still some tests that have not come yet, so here we are still waiting. Wish I had more to update you all with, but at least we are not falling back!!!

Thursday, March 17, 2011

Lincoln County Swim Team!!!!

Lincoln County Swim Team you guys are the best thanks for thinking of us!!!

Update March 17th 12:19 pm

No new progress today, he is about the same as yesterday. Hopefully tomorrow something will come back from his biospy.

Wednesday, March 16, 2011

Update March 16th 7:22pm

The CT scan came back and there was no bleeding in the brain from the surgery, so great news.
Acey has been moved out of ICU more grest news!! Today, during his physical therapy he was able to put on his socks which was huge step for him. He then sat in a chair for 20 minutes, and brushed his teeth. All amazing considering what he was doing before. He still has his feeding tube in but today he pasted part of his swallowing test and is now able to have small ice chips. So for every little ice chip he has to swallow 6 times to get it down, but he is making
progress!!! Another really good thing is that he is talking better, and no more double vision!!!!! YES we have had a great day!!! The only labs that have come back from the biopsy was that he doesn't have the flu, and it's not a fungus, so still waiting for all the other tests to come back. Keep the prayers coming, cause the are working!!!!

Dietrich Community

Where do I start. This has been such a difficult time for the whole family. I want to say thank you and I love each and everyone of you for helping out where needed, all your messages really help and we miss you all. Traci, thank you so much for putting together those videos of the kids. Where else would you get such out pouring love and support. It truly shows how much everyone loves Acey and how many people he has impacted. I know everyone is concerned for Acey and he is going to be fine. With all the prayers that has been made on his behalf, I know that Heavenly Father is aware of us, and he has been and will keep helping us through this difficult time. Just so you all know that he is still the same Ace, he can't talk very well at all but just the other day he wanted me to make sure that I got the girls in the Carey tournament in June so you girls (2011 State Champs) he is still thinking of you!!!

Shoshone Indians!!!! Thanks

Thanks so much for the card, we so appreciate all of kind thoughts and words that have been sent our way. And as for the 6th man t-shirt he hasn't seen it yet but when he does I'm sure he's gonna smile! Thanks

Update March 16th 10:28 am

Sorry about no update yesterday, things here has been a little crazy, to say the least. Acey's surgery went wonderful!! Everything went as planned. He is in ICU again but hopefully soon he will be out on the floor again. They are going to be taking him to do a CAT scan is just a little while to make sure all is going well. So now, the waiting game continues, we are just sitting on pin and needles waiting for some explanation! His mind is still sharp and is aware of all that is going on. Thanks for all of your concern and I'll try to update again soon.

Monday, March 14, 2011

Update March 14th 10:21pm

What a day! I'm just now getting a moment to update on what Acey has done today. He had his spinal tap done and it was not good news. It was not what we were hoping for. They did a quick test on some of the levels and 2 out of the 3 were worse, then before. So tomorrow Acey is going in for brain surgery and they we be taken a biopsy. This procedure will take about 2 to 3 hours. There are risks but they are minimal. His condition is not improving but getting worse and this is the very last option that we have. We have the best neuro surgeon doing the surgery so we are feeling confident that all will be well. We are not sure what time this will take place since it was kind of last minute thing they are just going to fit him when they can, hopefully sooner then later. Once they have the biopsy they will start right away on trying to identify whatever they can find that maybe causing his brain to swell. Once that happens we can start some kind of treatment. So please be praying for all of us tomorrow especially the Surgeon. Thanks.

Acey & Jett

Sunday, March 13, 2011

Update March 13th 6:49 pm

Well the Doctor just come back to give us some updates. The scan showed that there was nothing blocking or on his colon. But some blood work came back and they found that he has an extremely low in vitamin B-1. So they are pumping him full of vitamin B1 which is called Thiamine which helps with his balance and his eyes from jumping around. We are hoping that this will improve his sight and balance. The other thing that they are looking at is called Disseminated Encephalomyelitis which is shorten as A.D.E.M. which is an acute condition that mimics multiple sclerosis. This is just a idea they are looking at they will only go with this after they have ruled out everything else. There is still a chance that they are going do the brain biopsy tomorrow night or the Tuesday morning. If he doesn't make huge improvement that may be what the doctor will recommend.

Update March 13th 9:46am

Today the Doctors came in to see him and said that he is doing better and that he can get out of ICU. This means that he is making some progress but the down side to it is that he won't have his own nurse watching him. So the plan is since his colon is cleaned out they are going to do another scan on him today, there was a spot in his last scan that they want to look at again. They weren't sure if it was stool or a mass of something else. So hopefully we will get news back on that today. The next thing is that they are still looking at doing the brain biopsiy either Monday or Tuesday. Monday morning they will be doing the 3rd spinal tap and hopefully sending it to a lab in Spain. So, lots still going on still. Keep those prayers coming!!!

Saturday, March 12, 2011

FUNNY FUNNY!!!!

Acey is still got his sense of humor. I missed it but his sister Colette stayed with him last night. So the nurse comes in and asks the same questions over and over, what's your name, what day is it, where are you at, who is the President of the United States? And he replied, "Obama, haven't you seen the lump of coal on Mt. Rushmore?" The nurse looked at him like he was losing it talking about coal and Mt. Rushmore, so Colette said she was dying inside and had to tell the nurse that we was trying to tell a joke!

Attention To All Family Members!!!!

Our wonderful Dr. Renner asked me if he had any family illnesses such as, ....... and he starts speaking in another language that I've never heard before. I looked at him like are you kidding me I'll never remember all of that. So I asked him if he would write it down for me so I could post it on a blog that my sister setup, he replied why don't I get on your blog and write a comment myself? So that's what he did so please go to Help Needed and scroll down and look at the comment left by Dr. Renner it's under Colette's name. There he has listed some of the hereditary diseases and are still in question. If you know of anyone in the family that has anything like these that he is asking about please call us. That again just shows what wonderful Doctors they have here, we are truly being cared by the very best!

Northside Conference!!!

You guys are great! Thanks for the best goodie basket ever!

Dietrich Seminary Freshmen/ Sophomore Class

Thanks for sending your love and support. I hope you all know how much just the simplest note means to us. We love you all and can't wait to be with you all again. Thanks!

RICHFIELD TIGERS THANK YOU!!!

Just want to give a Shout Out the Richfield Tigers, Thank you so much for the card, Acey loved it! Lincoln County is a great place and full of wonderful people. When tragedies happens in our community we all pull together and give support. Thank you again for all the kind words, and just letting us know that you are thinking of us means so much. Thanks again.

March 12th 4:12 pm

Things today seem to be better. The MRI done yesterday showed that no further damage has been done. GREAT NEWS!!!! The other thing that it did show was that the inflammation is still there and in the Doctors words it's "evolving" meaning that it's showing signs of progression not so good. Please don't freak but the Doctors are talking about maybe, possibly, there might be a chance that they may have to do a brain biopsy. This will hopefully give us some answers, this is of course the very last route to go. But that would not happen until early this coming week. The other great news is that he may possibly get his feeding tube taken out tomorrow! Cross those fingers!!! The speech therapist said that he might be able to try to eat tomorrow we are just waiting on what the Doctors says.

Acey's joy!


Me & Ace

Friday, March 11, 2011

Ace showing his Skills

Help Needed!

Besides all the University's in the country, all the specialist, and all the doctors. We would love to hear if anyone has any idea's of what this could be. We need all the help we can get. Prayer work too so keep praying!!! Thanks

Update March 11th 6:14pm

Acey right now is in the ICU and is having his 3rd MRI. He's had 2 spinal taps, ekg's, etc. They are still looking for something. We have done hundreds of test and still nothing. You name it, it's been done. The Dr.'s are so wonderful here this is truly the best place for Acey. So, back to the update, Acey was going blind his brain is swelling and so they started steroids that night to stop the swelling hoping that it would reduce the inflammation. And it worked! He sight is still not perfect but so much better. The swelling in his brain is continuing so it is affecting his speech and it is very poor. He is really tired and it's hard for him to stay awake. He is now on a feeding tube and hopefully help keep his strength. His motor skill are failing and he can't walk anymore or feed himself. They are starting to narrow it down and are thinking it's either, auto immune disorder, or Lymphoma. On Monday Acey is going to have his 3rd spinal tap, so they can send it to Spain to a World renoun doctor that we are hopeing he will find an answer.

Thank You!

First of all I want to thank you all for your out pouring love that you have shown to Acey and our family we have felt your prayers and know that so many people are concerned for him. It has been a huge support to all of us to read the text messages and listen to the phone messages that have been left. I let Acey know of all the phone calls and messages that we recieve, and I can tell that if lifts his spirit. His is strong and a fighter, and still even while going through this huge trial he is still so kind to all those that are working with him. Everyone he meets he says, "So nice to meet you" "Thank you for coming" and that's just to those coming to get the garbage.

I hope that this blog helps all of us to share our love for him. I hope that it is a positive outlet for all who know him and to express fond memories or just an up lifting message. I will be making updates as much as I can, so know if you hear something but you didn't read it hear, it probably didn't happen. :) Thank you again for everything!! We love you all!!!
Acey two Favorite girls!