We Went Golfing Today (sort of)

We went golfing today, well miniature golfing to be exact. Had a great time with lots and lots of laughs. Myles did great not only in golfing but just being out and around people. GREAT DAY!!!!!

Ged is happy!

The interview went well yesterday. Myles is so ariculate, it's amazing how he can express himself. They told us that it will run on Sunday, 4/1 at 5:30 (short version) and again at 10:30 (long version) channel 6. With all of the emotions that we have gone through so far, it was hard to really put them into words, but we tried. Here is a picture that I took yesterday, Ged (Myles' dog) is so happy to have his master home.

Good Friday Morning to you All

Myles is still on an up and down road. Some hours are very good, some hours are very bad (I use hours not days because things can change so fast). His daily physical therapy is going well. His wounds are healing, which makes him very itchy and as part of the healing process he has been getting a lot of blisters on his donor sites. This is very frustrating as his donor sites looked completely healed a few days ago. When I called the burn clinic they told me that this is normal as his donor site skin is very, very fragile and any friction can create blisters. Two steps forward, one step back (as it only appears). We are still not getting very much sleep at night, maybe 2 - 3 hours. As we all have experienced, things at night get intensified, the itching, the pain, the emotional aspect of all this. The doctor prescribed some sleeping pills a couple of days ago but it has not worked. I think that with all the meds he has/is been on, his body is immune to "simple" stuff. I am going to call them back today as these sleepless nights are very trying on both buggies and myself physically and emotionally.
Channel 6 is supposed to come over today to interview Myles. They have been covering his story through this ordeal with class and dignity. As long as he is up to it today. I will let you all know when it will air. It will probably be on www.todays6.com
Well it's time to start our day (tiredly).
With love to you all,
Sherry

Tears of Joy

We had a great day yesterday!! Weaning Myles off some of his pain meds has led to some terrible withdrawal symptoms. Insomnia, agitation, and increased awareness of his pain. Yesterday was the first day that he was "acting like Myles". After his morning routine of shots and physical therapy he invited his close friend John over. John brought some great news as he had submitted Myles' name for the Gene Harris award (a famous jazz player) and buggies won! He is going to receive a brand new trumpet (I have been renting him one for two years now). They will be presenting this trumpet to him at a jazz festival next Friday night. Once his hands heal more, playing the trumpet will be great therapy. Thank you so much to John and his family for all that they have done for us.

While John was here I truly had a revelation........
The boys were in the room playing his Wii game and I was in the kitchen getting Myles' afternoon shots ready, when I heard Myles laugh. Tears of joy came streaming down my face as I realized that I had only heard my son scream in pain for the last month and a half. His laughter was as great as the first time your baby says "mamma" or takes his first step. The more he laughed with John the more I cried (I actually ran to my room and sobbed). I realized that I had really never appreciated his laughter until I had suffered through his screams of pain. I wonder why we have to go through tragedy before we appreciate the beauty of the simple things. I pray that all parents can truly appreciate the beauty of their childrens laughter without having to learn to appreciate it the hard way, as I have.
Love to you all
Sherry

My son is an oak tree.....

Myles received this Hallmark card. It so reminds me of his incredible soul.

A mighty wind blew night and day. It stole the oak tree's leaves away. Then snapped its boughs and pulled its bark until the oak was tired and stark. But still the oak tree held its ground while other trees fell all around..................The weary wind gave up and spoke, "How can you still be standing, Oak? The oak tree said, "I know that you can break each branch of mine in two, carry every leaf away, shake my limbs, and make me sway. But I have roots stretched in the earth, growing stronger since my birth. You'll never touch them, for you see, they are the deepest part of me. Until today, I wasn't sure of just how much I could endure. But now I've found, with thanks to you, I'M STRONGER THAN I EVER KNEW."

Personal Message

Mom here,
If anyone would like to contact me on a personal level my e-mail address is: sjgmcg@msn.com

Message from Myles

"Hey everybody,
I am still getting used to the life I was use to. It's very hard because of the pain and sickness from all of this. I still want to thank everybody who has been supporting me and my family through the hardest time of my life (so far). It's a lot better to be home and near my family always. I tried golfing the other day but it didn't work out. So now I am stuck with playing my WII game. I am eating lots but nothing is happening but I still get to eat a lot of good stuff. Well I just wanted to let you know a little bit on how I was doing. That's all for now.
Sending my love,
Myles"

No Post from Buggies

Hey all,
Myles won't be posting on the blog today. He had a really hard and painful day. I guess after yesterday when he was feeling good that it would stay, but it didn't. High tide, low tide......... Tommorow is another day. Love to you all, as always.
Sherry and Myles

The Transition

Hi everyone,
Sorry I haven't posted but it has taken quite awhile to get situated into our routine. Myles is doing better every day. With all that is needed for his care I had to create a "Myles To Do List" and put it on the fridge. Medications/Injections in the morning, bandage changes, excercising/physical therapy, eating lots, treatment centers, more injections/meds at night........ as you can see it's a lot. Now that we are home we also have to keep up with the house and animal needs also. THANK YOU GOD FOR AARON AND TUYET!! There is no way that I could do this alone. Myles had a few close friends come over yesterday for the first time. I really wasn't sure how he was going to react but did unbelievably well. We also got to meet the man (and his wife) who actually put out the fire on Myles. I couldn't put into words the gratitude that I have for God placing this man "at the right place at the right time" (I just started to cry). We all agreed that it is meant for us to become part of each other's lives. I am still at a complete loss on how to thank everyone for all that they have done for my family during this time. I could spend the rest of my days and nights, the rest of my life, and still not feel in my heart that the gratitude was given. I love you all.
Well it's time to get Myles up and start his day. He said last night that he wants to post something today but we will see how the day goes.

Pictures

WE ARE HOME

Great Morning to you all,
Myles and I are safely home. The five and a half hour drive was pretty tough on Myles. Lots of padding and pillows. We didn't talk much on the way home as we both agreed that everything was feeling like a dream. As we drove along the lake on our last stretch home we saw our horses and donkeys in our fields (that had turned so green) and we both got very excited. Aaron was sitting in the driveway waiting for us. Lots of very gentle hugs!!! When we walked into the house it was like we were seeing it for the first time. We both just kept looking around at everything in silence. Myles couldn't wait to see his dog "Ged", but he could only do it through the door as Ged weighs over 140#'s and loves his master. We were very worried that he would knock buggies over. Myles took a nap as his leg got very swollen from the drive home (the one with the blood clots).
As I started to unload all of medical supplies that we need to take care of Myles' (four large bags) . I kept looking at the clock as it was approaching 4:30 in the afternoon and I was anticipating Myles getting off the bus from school. I felt that since I was home that the last 36 days was just a horrific terrible nightmare and I had finally awoken. I became very sad that all this has not been the worst nightmare of my life but reality. I instantly become full of happiness and joy that we survived our reality and my son was home with us. Thank you all for your prayers to make this happen.

I apologize to all that called yesterday and we did not answer. Being home, the phone ringing, unpacking, all of Myles dressing changes, shots, etc..... led for a wonderful hectic day. We will begin the uphill climb today to figure out how to get everything back in place. Myles' school (he does not want to be held back in the seventh grade), his medical insurance which he hit his lifetime max of one million about two weeks ago, hemotologist to check on his blood clots and hemophilia, rehabilitation therapist (four hours a day) and all the dressing changes. Wow, I am tired from today and it's only 5:30 in the morning. Myles slept pretty good last night for the first time in over a month. We rented a bed for my room so I can be there if he needs me in the night (I think that I would have separation anxiety if he slept in his own room). I know this is a long post but I AM SO EXCITED TO BE HOME WITH MY SON!!!!!
I will continue to post (as time allows) our progress of this new beginning.
Love to you all, and thanks again from the bottom of my family's heart and soul.

HOME TOMMOROW

Hey all,
This will be a very quick note as today is soooooooooooooo busy. Last night at the Ronald McDonald house was wonderful beyond word (having my son next to me) and also very painful for bugs (no hospital bed to adjust). WE ARE HEADED BACK TO IDAHO TOMMOROW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! He is in rehab right now and I am running around like a chicken with....to get all of his meds, factors, blood thinner, etc. I will update all on lots more tommorow when we get home or sooner if I can squeeze extra time into today. XXXXXXXXXXXXXXOOOOOOOOOOOOOOXXXXXXXXX to all of you.

Reflections of the Past

Good Morning everyone,
Myles is still being discharged today. I didn't sleep well in the anticipation of today. I was in constant reflection/recollection of the coming of the due date when I was pregnant with him. I knew that he had severe Hemophilia when I was six months pregnant. As his due date drew near, I remember being so excited and so scared all at the same time. I was excited to start our lives together, but I was scared because I knew that as long as he was in my womb, he was safe as he was receiving my factor. I feel the same mixed emotions this morning. I am so excited that we are getting out of the hospital BUT I found comfort over the last 32 days and nights seeing his monitor and knowing that medical staff was there. It is time for him and I to continue on this path that God has set before us and we will trust in God that his blood clots are dissolving. I am also a little nervous as Myles has really not stood in front of a mirror since they life flighted us to Utah (which seems like a lifetime ago). Buggies isn't talking much about today as we have been so busy trying to learn all that we need to care for him on our own (bandage changes, factor infusions, blood thinners, etc.) The Ronald McDonald house that we are staying in has a computer so I will be able to keep you updated on "The day of his rebirth into his new life". Thank you all again, without all your prayers and support, this day may never of come.
Love to you all,
Sherry

Happy St. Patrick's Day

Hey everyone,
Myles' best friend Kassie came up from Huntington Beach to visit him yesterday. Today we got to take Myles out of the ICU unit to go to the Children's Hospital next door for some good ole' corned beef and cabbage. Today was the first day that he got to wear normal clothes over his bandages (isn't he adorable). Kassie made him so happy!!!! As of today, Myles will be discharged on Monday and we MIGHT be able to go home to Idaho on Friday or Saturday.
Hoooooooooooooooooooooooorrrrrrrrrrrrrrrrrrrrrrrrrraaaaaaaaaaaaaaaayyyyyyyyyyyy. Will let you all know as it happens. LOTS OF LOVE
Sherry

Video from Myles!

Hello everyone. Here is a little video we took of Myles before we left. There is so much to say so he just did the best he could being in front of the camera. Well, I will just let Myles speak for himself... (So you can see it well I would suggest starting it, then pausing it, then waiting for the play bar to fill up before you press play so you can see it without any breaks.)
You should be able to view the video embedded here. If you cannot please see the following link to watch it on youtube. http://www.youtube.com/watch?v=-X9c4c1gohI
-Aaron

A new day 7:00am

Good morning everybody,
It's mom. I wanted to let you know that things are going well!!! The blood thinner/factor 9 cocktail seems to be working (at least as far as we know). Myles' therapies are doing better every day. I wish that I could say the same for those daily bandage changes. Aaron and Tuyet left for Idaho last night, it is truly amazing how their presence allows a peacefullness in our souls to happen. Myles soooooooooooo loves his brother and it allows me some time to re-coup/group. Buggies is going into surgery this morning to have his central line in his neck removed and a pick line put in his arm. This will allow me to give him his factor as the access on his arms are impossible with the grafting. Aaron and Tuyet took a video of Myles last night and will be posting it on the blog site today (I am totally computer illiterate). I hope it comes out so you can all see Myles talking. The doctors say that he might be discharged from the ICU unit next week (Myles, Aaron, Tuyet, and I all went into shock). There is no transition from ICU burn unit to a regular hospital room. When this happens, we will need to stay at the Ronald McDonald house for about three weeks to come back for outpatient therapy. I assumed that meant bandage changes also but it does not. It takes two nurses over an hour to change his dressings in a room designated just for that purpose and now I need to figure out how I'M going to perform this in the Ronald McDonald bathroom the size of a small closet. I know this is the next step in our journey to finally going home BUT I am very scared. I am sure that Myles and I will figure it out, just not excessively painfully. We are definitely going to have to make a deal on the patience side of this learning process but we have always been a great team (moving to Idaho and such) so I'm sure that we will get through this next step.
Will keep you posted!
Lots of love, hugs, kisses, and thanks from Myles and I.

Football!

Big Brother Aaron with another post. Tuyet and I got back into town on Monday night. It was so nice to see my brother the night we walked in. He actually started crying- with tears of joy. It really warmed our hearts. The bad part was that he was really excited about us being back and he had a hard time going to sleep with us there. We ended up leaving about 2:30 AM so he could get some rest.

Yesterday the lack of sleep had him a little grumpy and tired all day. Things still went well though. During his physical therapy Myles was throwing a football to me and the physical therapy coordinators. We got it on digital so we will upload it to the blog before we leave. We want to get a little more video of him first though.

Since I have been gone a few days being back in Idaho it has allowed me to really see the progression of his burns. Even though they are not our most critical worry right now with the other complications they are still really important. For the most part he is looking great. His stomach and chest look awesome and his hands do too. He still needs a lot of healing on his back, arms, butt, legs and hands but we are hoping those will pick up soon. With him getting up for the four hours of physical therapy these should speed up as he will not be in bed as much.

Yesterday I also got to watch him eat his dinner almost all by himself. We had to fatten the fork so he could grip it better but he was stabbing away and forking his chicken cordon bleu and green beans into his mouth "successfully!" (inside joke with Myles).

Mom is still here and is having the difficult task of getting everything in order for the weeks to come. Myles will not be in ICU forever and as some of you may know hospitals, care ownership, and the like are difficult things to organize especially since Myles is not only dealing with the burns but also with his hemophilia, blod clots, etc. She joined Myles, Tuyet and mylself last night for a quick game of Disney "Scene It". Needless to say Myles thuroughly kicked our butts.

We are all trying our hardest to keep him in good spirits which is difficult as each day is a challenge like I have never faced before. Thank you all for the cards, support, CANDY, and prayers- they all make a difference.

Time to get back to the hospital.

God bless,
Aaron

Tues. 7:00 am

I am sorry that I didn't update anyone yesterday. I spent the morning on the phone with Childrens hospital of OC (CHOC), speaking with Dr. Nugent regarding Myles' blood clots in his calf. It is very difficult to get Dr's from different states to communicate (political stuff). They finally came up with a plan to give buggies blood thinners in combination with his factor (scary combination). He has been running a temp. of around 104 for about three or four days with no other sign of infection (white blood counts are good) so they did another Cat Scan on him to see if there was anything going on. The results: he has a blood clot in his lungs (Pulmonary Thrombosis). This could possibly fatal if the thinners/factor combo does not work. Aaron and Tuyet arrived here last night because mom is kinda having a nervous breakdown. I think between the burn, blood poisoning, blood clots in his leg, my sister's suicide, my helplessness of Myles' pain, and now the clots in his lungs....I am truly having a hard time functioning anymore. Everyone thinks that I should go back to Idaho for a few days for a break but I can't even make it to my car to leave the hospital without turning around and coming back to my son's side. If anything would happen to bugs while I was away from him I could never forgive myself. Aaron will probably be updating this site for the time he is here.
With love,
Sherry

Another hard day

Hello everyone, it's big brother Aaron. On behalf of my mother I extend an apology to all of you who saw the previous post with just a title. My mother was going to write in it last night but did not want to re-create her day in her mind as it was a very difficult one to bear emotionally and mentally.

Yesterday was a particularly hard day for Myles as he saw for the first time his own body during his bandage change. Usually he is laying down looking at the ceiling, but yesterday they did it with him sitting up. Needless to say he was traumatized at seeing the extent of his burns in their entirety even though to us who have been there with him they look better. In addition to that, his nerves are growing back and there is additional acute pain while going through the bandage changes.

In addition to that there are still concerns over his hemophilia, the blood clots and the relation of his recovery considering both of these things. The burn center is fantastic at what they are doing for his burns, but we are now getting additional resources to make sure he is getting the best care in his recuperation in regards to his hemophilia.

As I am sure it is the same with all of you, I continue to pray and send positive thoughts his way as much as I can. What is already an excruciating time for our family is still being complicated by the difficulties life is giving us. All of your prayers and support are helping us each and every day. We thank you from the bottom of our hearts and only ask that you continue with giving what you already so willingly are- love, hope and spirit.

-Aaron

The robin lied!!!!!

THE ROBIN ARRIVED

Good Morning everyone,

I got some well deserved sleep last night (even had a dream of Brad Pitt!!). When I left the Ronald McDonald house this morning, a robin was in the tree by my car singing a beautiful song. Myles and I always celebrate the first robin's song as we know that we made it through winter and a beautiful spring is around the corner. I truly believe that the robin was singing to remind me that Myles' rough winter is now over and he is going to be renewed and come back even stronger (as all of Mother Natures life does in the spring). I was soooo happy to hear that robin this morning, I cried for the first time of joy. I can't wait until Myles wakes up so I can tell him. As far as the blood clots, the decision was made to not do anything and see if they will just go away. The risks involved in either thinning his blood or surgery are to great. They will check the clots with an ultrasound every day to make sure that they are staying in his calf and not moving up into his femur. If they start to migrate, well hopefully we will not have to deal with that as the robin has promised. The picture above was yesterday (Friday) of buggies full of pain meds before his bandage change (the sucker in his mouth is morphine) he loves it when I wash his hair and give him a scalp massage. He will probably marry a hairdresser!!! We are hoping that I can finally after three weeks take Myles for a cruise around the hospital today in a wheel chair. I am so excited about this as all he has known for these last three weeks is his bed in ICU and the "torture chamber" (that's what we so lovingly call where they change his bandages daily). I might even try to sneak him outside to see if a robin is there to sing/tell Myles the good news. Boy, you can sure tell that I got more than two hours of sleep last night. I also want to bring Myles to this computer room so he can see the blog, channel 6 stories, and newspaper articles that have been done. He really doesn't know how many people are praying and rootin for him. He will be overwhelmed.

Still no decision

There is still no decision on how to treat the blood clots. Three specialty doctors (Burns, Hemotologist, and arterial) had a three hour meeting today to figure this out and all three had different opinions. They just decided to continue in the morning until they all agree. Myles is completely bed ridden for the time being (as if he hasn't been for almost three weeks now). His spirits seem a lot better than this morning. Thanks for the speedy delivery of strength.
Love to all as always
Sherry

Major turn for the worst

We just found out that Myles has two major blood clots in one of his legs. They can not give him blood thinners due to his hemophilia. The doctors are all meeting right now to decide what to do. If the clots dislodge it will be immediately fatal!!! They think that the only option might be to put mesh filters in his heart valves and lungs. WILL THIS EVER END??????????????????? Myles says that he is finally done with all of this, this is my greatest fear, he is sooooooooooooo tired. Please redirect your prayers back to buggies. Will post when the doctors figure out what to do.
SEND STRENGTH....................................................................
Sherry

The journey continues 8:00 am

Good Morning everyone,
Sorry I didn't post yesterday, seems like I need 35 hour days to keep up with everything. Myles is still getting better, yet he continues to get fevers now and then. His scheduled days are completely wearing him out. I think the nurses are starting to get scared of me. After a two hour very painful bandage change/wash (which he gets every single day) they wanted him to do two hours of therapy. I told the nurse that if she didn't at least give buggies an hour to recoop she would be in the hospital bed next to him! I know he needs his therapy BUT he also needs to recover from one painful process to the other. She came back in a couple of hours and Myles did great. They are really pushing him to use his hands, drink from a cup, put pegs into boards, etc. Last night he tried to use a fork during dinner (which I still have to feed him) and he wore most of it, we just laughed. His determination is still strong as long as they give him a rest in between. I have really understood the fact that no one can feel what you are going through yet no one can make it alone. We do truly need each other. Myles' humility through this is what gives him his strength, and of course all of your prayers and God's will.
P.S. I again want to thank all of you for all of your support and prayers but can you do me a big favor, add all the children of the world in your prayers of protection from God. Between seeing the burnt babies in the ICU and going back to the Ronald McDondald house, all the children need all of our prayers.
With love from Myles and Sherry

He's Back!!!!

Hey everyone, Myles is definitely back. Eating, drinking, cracking jokes, he's definitely back. They (ICU staff) has wasted no time getting him back on schedule. He eats breakfast, has one hour of physical therapy, has a complete body bandage change, eats lunch, and then has about two more hours of physical therapy. It wears me out just watching him go through it all but buggies seems to have the determination of a goliath. They are going to remove the arterial line in his groin in about a half hour. Then tommorow they will have him up and walking again. This will be great for the fluid in his lungs don't seem to be going down with him just laying there. His physical therapist says she has never seen such a determined person. Got to go so I can be with him during the line removal. Lots of love Sherry

Turn for the better

Hey everyone,

It's brother Aaron again with an update. Myles underwent a slight operation today. They put the IV line back into his neck for inputs, and limited his arterial line in his groin only to take out blood to do tests. This is a good thing. Also, today they released him from not being able to eat or drink so we ordered him dinner. It will be coming up shortly and I will need to go back in and help him eat chicken noodle soup and chicken fingers with BBQ sauce. They also thoroughly checked out his burns and overall had a positive assessment.

Since this afternoon he has been coming around and in between sleeping he is his usually funny and ornery self. Cracking jokes and playfully giving the nurses a hard time. The antibiotics are apparently doing their job as his white blood cell count has come way down and all the rest of his vitals are stable. Also he was able to do a little physical therapy. No walking again today but it is still a good sign. Hopefully he will be walking again soon...

For the first time in a few days we have all started feeling more at ease.

We are still not out of it yet. Since he has been so inactive he has a little fluid in his lungs. We have an aspiration contraption that he blows into to make his lungs better so we started him back up on that. (sorry I have no idea what the tube is called). So we are hoping that will clear up soon as well.

Still critical, still in pain, but we are definitely on the road to recovery of the low blood pressure and the gram negative infection!

Thank you all so so so much for all of your prayers and support during all of this. Our family cannot put in words how much we appreciate all of the love that is being channeled to help out Myles in what is assuredly the hardest time in his (and ours) life.

If Myles is feeling up for it I am going to try and get a video clip of him before I go back to Idaho and post it on the blog so he can say hello to all of you himself. Then you can all share in the joy we have had today in seeing our little buggies being himself again.

God Bless,
Aaron

We have found the enemy

Hey everyone,
I'm sure that this has seen like a long time since my last update. The last two days have felt like a lifetime for us. None of the doctors knew what was happening to Myles and waiting for the 2 days for the cultures to be read was hard. I just got out of a long meeting with the doctors and we know what has happened. Myles' blood was contaminated with a bacterial organism called "Klebsiella pneumoniae". They now know which antibiotics will work!!!! Myles blood pressure is perfect now but he has some slight damage to his kidneys from the lack of blood flow yesterday. His cat scan on his brain showed no signs of bleeding (YEAH). Hopefully the antibiotic will work quickly and buggies will be back to his "new normal" self. Every day without rehab will make his recovery of his skin grafts harder, BUT HE IS OUT OF THE WOODS AS FAR AS HIS INFECTION GOES. He actually started yelling at the nurses today when they changed all of his bandages. That is a good sign. He had two female nurses working on his left hand and two male nurses working on his right hand. Myles said "You can sure tell that women are better at this than men". We all laughed. As always, thank you all for your prayers and loving support. I am confident that future updates are going to be wonderful.
Sherry

Myles Photo Album 1

Hello everyone- this is brother Aaron again. Sitting in ICU praying for Myles to get better. I thought that we could share some pictures of Myles and the things he loves for those of you who may have not seen him in a while (or ever). Or for those who have, here are some wonderful pictures of Myles that you can enjoy as well.

I just posted these from a Photobucket site I set up. It looks odd in the blog itself but just click on the partial picture to go to the site. You can then view all of the pictures as slideshow(there is a link) or check out individual ones. Feel free to download as well.

As always, thank you all for your thoughts and prayers.

-Aaron

Photobucket Album

Myles' poem

Myles wrote this poem last year in English class. Wanted to share it with you all.


LISTEN TO ME

(A POEM BY MYLES GANLEY)

LISTEN TO ME AND I HOPE YOU UNDERSTAND.
LISTEN TO ME OR I WILL KEEP QUIET.
I’M YOUR HEART SO LISTEN TO ME AND I WILL BE HAPPY TO GUIDE YOU LOVINGLY.

I CAN BE WRONG, I CAN BE RIGHT.
LISTEN TO ME IF YOU CHOOSE.
I WILL MAKE OPINIONS, THOUGHTS, OR EVEN DREAMS.
I’M YOUR MIND.
I CAN’T INSPIRE, THAT IS YOUR HEART. SO LISTEN TO ME IF YOU CHOOSE,
BUT YOUR HEART SPEAKS FOR ITSELF.

Sat 2/24 10:00 am

I wish that I had more information than I am going to give right now.
Good new:
Myles' blood pressure has increased to an "acceptable" level and his creatins are slowly coming down. Blood work seems to be leveling off.

Bad new:
He is not coherent. He talks alot but not of reality. He says he's late for band practice, he thinks that Ged his dog is on his bed, he drinks out of imaginary cups. His doctor says that in his 40+ years that he is stumped. They are bringing him in for a head scan now to see if he possibly has an internal head bleed or possible stroke. I have been trying to explain to the Burn doctors that keeping him at 100% factor over 12 days that blood clots (thrombosis) was a real concern. He still has a very bad infection but no one can seem to find out where it is. The cultures won't be complete until tommorow night. The doctor is going to make a decision today whether they will open him up to see if they can find something internally but I trully feel that they fear he will not make it through the surgery.
I'm sorry that I don't have more information but will try and keep up with any news as we get it. There might be quite a few updates today...............I just pray they are good ones.
Sherry

Friday 8:00 pm

This has been one of the longest days of my life and I am sure that it was for buggies, Aaron, and Tuyet also. Myles has been in a delerious state all day (he keeps telling me to go feed the horses, goats and donkeys). I am glad he has not been completely aware of this day. The doctors seem to be at a loss as to how he went from "the best recovery they have ever seen" to what happen. The tube going into his stomach has seem to start helping his swollen stomach that was pushing his heart and diaprham. His blood pressure is slowly rising 70/40. I his blood pressure didn't start rising he would of gone into total organ failure. The big problem now is his infection (they don't know where the infection is coming from) which they are trying to treat with many different antibiotics. They also put in a arterial line in his groin area (through the burn areas) to aid in the vital info that they need. The hardest part was that they can not give him any pain meds or knock him out because of his low blood pressure. I couldn't stand his screaming and had to leave the room but Aaron stayed by his side for the entire time. He is considered double ICU right now, which means that a nurse has to be in his room 24 hours a day. If they antibiotics work (God willing) he will return to his smiling, determined and wonderful self in a few days. Then we can continue where we left off.
Thank you all for doubling up on the prayers. I kind of think that God is still mad at me for cursing at him for putting my baby through this, but I do know he is a forgiving God and lives in all of us. I will update in the morning as the next 24 hours will tell if this is all working.
Love and Thanks to all of you for your prayers.
Myles' Mom forever

Friday Noon

Hey everyone,
I know that you all have been praying for Myles like crazy but I need for you to pray even harder. He took a terrible turn for the worst last night and his prognosis is not looking good. His blood pressure has dropped to 50/20, he has sepsis (blood poisoning) and his white blood count has gone off the chart. They thought that he would need emergency surgery this morning because his stomach is three times the normal size (distention) but he is too weak for surgery so they are going to tube him to see if that can fix this problem. He is pretty much unconscience right now.
PRAY, PRAY, PRAY....................I CAN NOT LOSE MY SON.
I truly don't know how much more he can take. Will try to keep you posted the best that I can.
Sherry

Doug from the Nampa fire department drove all the way to Salt Lake to make Myles an honorary fire man. Myles had a really hard day but did his best to thank and honor this man for coming so far to see him. There are walking angels in this world, we just need to see past the stuff that is usually shown. Aaron and Tuyet are here now and at the hospital with buggies so I think that I am going to take a needed "nap".
No one can make Myles smile soulfully as him seeing Aaron. I can sleep knowing that my sons are together. Love to all and a well deserved good night.

Progress

Hi everyone,
I know that I haven't posted anything in the last few days. Between Myles' daily dressing changes, them trying to get him to walk, and our sleepless nights (from nightmares) days and nights have become a blurr to both of us. Auntie Mona had to go home on Tuesday morning (my crutch and angel) so I have been pretty busy. Myles is recovering but I truly believe the pain from dressing changes and them trying to get him moving is really starting to get to him. You add sleepless nights from nightmares and flashbacks to the nights and he really doesn't seem to get any reprieve. I can't stand not being able to take some if not all of this for him. The blessing is Aaron and Tuyet are coming back today (weather/snow) permitting. Myles' strength will double when he sees his brother. I will sleep for maybe 24 hours straight (been up for about 48) knowing that they are by his side. Myles says that he wants to write something on the blogsite to all of you, but we have been too tired these last few days.
Love to all