worn out

Worn out just about sums it up for me. The first week of day rehab is done and over. Heading into a 4day week this week. I am just about exhausted. I have no energy to even do a load of laundry. If I wasnt writing down all of C's meds I wouldnt know which ones I've given him. That would be really bad. He is getting weaned off 1 right now and tomorrow is the last dose. Slowly but surely.....I was hoping to get some things done this weekend but we have just been sitting and soaking up the sun. (I even let the boys skip their baths last nite...gross I know)

Over all C had a good week in therapy. I have wanted to throw in the towel too many times to count, but from somewhere deep down inside I manage to find an ounce of strength to continue. I drag C by the arm, screaming and crying, while onlookers stare and people offer sympathetic smiles. I just try not to look anymore. C earned a prize everyday and also earned the big prize at the end of the week too. Not sure how much longer he will go for the bribery aspect. If anyone has any other ideas on how to motivate a 5 year old to do painful therapy please do tell. We are up for anything.

We are hoping to have C's feeding tube out and gone by the end of the week, just a goal not saying that it will happen. I am to use my own discretion when to turn it up and down. Its becoming a pain in my backside. C has dealt fine with it. He barely realizes that its in. It has been leaking and thats really annoying. We have to pin it on his shirt during the day so it doesnt hang down and pull on his nose. Any how I feel like I'm complaining a lot. I am tired right now and therefore get a little cranky.

We are enjoying the weekend as best we can. Marvs parents, sister and her family brought us pizza last nite for dinner and we played ball some outside. Tonite we were invited to my mom and dads for a cookout and campfire. C's body tempature gauge isnt working correctly and gets very warm. Then when he's warm he gets itchy like crazy! We ended up leaving early because he was itching like a madman. I cannot wait until we are past this stage in his recovery. Here's hoping you have a relaxing weekend and remember why we celebrate Memorial Day! Until next time....
Amy

The weekend

So after being home for a couple of days, I'm still not in the swing of things. Being at the hospital I had only myself to care for as C wasnt doing much. Now I'm home and have to see to the needs of my 3 other men in the house. I am so thankful that I have a hubby thats in tune to my feelings and see's when I'm about at the end of my limitations. I am also thankful for our babysitter/cleaning gal/nanny! Thanks Anita!

Today was the first day of our day rehab program. This morning we met with the 2 main techs that oversee the Pt and Ot aspects of rehab. C was fitted for his Jobst suit, finally. I was happy to find out that C will only be wearing really high wasted leggings with the butt cutout and wont have to wear a vest and pants. I picked out a royal blue color for 1 suit and a tan for the other one. The techs were really happy with the progress C had made just over the weekend! The whole day C did really good except right after his lunch/nap time he didnt want to go back to play. Its amazing to me how they can incorporate simple things into working him out and stretching certain parts of his body. He feels like he's playing but behind his back the techs are giving each other thumbs up. I'm glad we were able to get into this program.

I got a taste of what its gonna be like when we go out in public with C and having his suit on. People have no problem staring...like flat out stare as if he had 2 heads or something! When I see someone with a handicap or prosthesis I dont think twice about it. I dont stare and gawk, sometimes I even pray for them, you never know what the have gone through and what they may still be struggling with! Having grown up with a father who has only 1 arm I was used to not being in the 'norm'. But some people need to display some tack. If you have questions or are curious just ask. Some people it mite offend but just ask me we will tell you just like it is!

I am about exhausted to my core and need to get to bed a little earlier tonite, Until next time....
Amy

Home

So we were released from the hospital a day early. Our Doc was on vacation so the other partner had sign the release. He was asking me if I feel comfortable doin C's bandage change at home and giving him his tube feeds and meds. I said I can do it becasue if I would have shown any apprehension I know that we would still be in the burn unit. Yesterday afternoon was a whirlwind of information and tasks. I was able to put C's bandages on by myself after they showed me how. I was then given the rundown on his pump for his tube feed and how much to give him and the rate it goes in. I actually remembered it all. C's meds are a little confusing still but lucky for me everything is written out and labeled. There was also so much paperwork to fill out when we go back to day rehab on monday. I think I have that all straight. I may need to borrow a box truck for when we go to therapy. C has so much stuff they want us to bring along...good grief!

After being released yesterday we had to get C's meds filled and our releasing nurse told us to stop at the outpatient pharmacy to check about availability on some of the meds we need. They were nice enough to call the walmart pharmacy and ask what they had available. We would have only been able to fill 2 at walmart the rest they had to do for us up there. So we had to wait another 1.5 hrs before we left the hospital. That was a little frustrating! So goes sometimes!

C was working on therapy over lunch yesterday and I decided to take that time to run down the banquet room where they were having a jewelry sale and some of the proceeds went to Childrens hospital. When I came back C was riding a 3-wheeler...like the ones the old mommies and doddies drive in Fl! He had the biggest smile on his face he was so proud of himself, not to mention the nurses stopped what they were doing to cheer him on! I'll start posting piks here soon, so look out for those! I need to go tend to my little man so..Until next time....
Amy

Great Day

So my title says it all...C had an awesome day today! It started with his bath. He got a med in his room and they didnt have to give him his strong drugs in the tub room. He came back a happy boy....none of this angry child with his bouts of rage, crossing his arms and lashing out! It totally made my day! Next a PT tech came in and wanted to work with C on therapy. She asked him if he wanted to work in his room or go downstairs to the rehab area. C right away said downstairs, with a smile on his face nonetheless!!! :) The trip yesterday must have made a lasting impression even if he was ticked beyond reason! C walked from his room, down the hall from the burn center, grabbed an elevator down and walked all around the rehab area. He also did steps about 5-6 times up and down. Then to top it off he walked all the way back to his room with out crying! Talk about making my day!!! I was praising Jesus the whole way down and back! An OT tech came in this afternoon and he worked with her too without fussing and throwing fits. I think she was pleasantly surprised! She winked at me when she left....had to be a great sign!

I was given our schedule for next week concerning times for day rehab. Monday morning bright and early 9am. I will take any trip back and forth than staying here another week! I will need to stay on top of things. I'm not one for strict structure, some is ok but I'd rather fly by the seat of my pants! It'll take some getting used to for me, but I'll adapt I always do.

Marv called me tonite and was asking for balloons and I asked him if he's having a party. He said the boys and our sitter are making a welcome home sign for C when he gets home on sat. Our nurse today said that on the nurses board its written that we are being released tomorrow. I told her to double check because I didnt want to get my hopes up. I havent heard either way yet. Nobody else seems to know. So we will see.....

I have more to write, but am lacking time...C needs 2 brush his teeth, and settle down. Until next time.....
Amy

Updates

So I finally have a computer again and its lightning fast too!!! Cant beat that! So much has been going on the past week. I didnt even check to see when te last time was I posted....Oh well.



So obviously we didnt get to go home this past monday. Doc says on saturday we will be released. Marv and I will jump for joy in the parking lot if we get to go home then! C has been doing good. His donor sites have now all healed and still look red and pink but thats going to take some time to fully heal. The very first ones are still pink. Yesterday before I went home I was able to see C in the tub without any bandages. One of the nurses came in and asked if I wanted to see him all undone. I was stunned. I didnt know if I wanted to but am glad I did. C looks great! His grafts are a little grotesque looking in some places, but C thinks its cool that the graft on his left knee is so smooth with bumps! We have narrowed down why and when C gets so angry. The meds he gets for his baths are the culprits!ey just dont agree with him and do something to the emotional part of his brain! I can tell the minute they've worn off, C is a much happier child and doesnt talk back as much either.

I was also able to meet with a few of the PT and OT techs that we will be working with downstairs in day rehab. The facilities down there are really cool! If I was a kid and needed therapy I'd want to start right now! They even have a pool that has a floor that raises and lowers to help kids with various things! C will have his own bedroom for naps and to rest. We will be coming up here starting on monday and be here 5 days a week for at least 6 weeks! I will be driving back and forth everyday. We have the option of staying at the Ronald Mcdonald house but after being in the hospital and away from Marv and the other 2 boys for 8 weeks we just want to be home! The scheduling department was very accomadating to our needs for which we are thankful.

Marv was up here with C last nite and then this forenoon. Marv called to tell me that C got out of bed and walked to the recliner all by himself. C didnt even tell Marv that he wanted to get up he just did it! The burn unit is a 12 bed unit and C walked the whole circumference of it 2x today as well!!!! I am so proud of my little man! When C got back from his bath he was minus bandages around his torso and his one arm. All he has left wrapped are his left thigh and right calf. Progress is being made Thank you God! Hopefully by sat he wont have any bandages on, we will have to wait and see.

PT and OT have 2 areas of concern on C and those are his left knee and right wrist/thumb. His left knee has grafts all the way around, and C is holding it at a 35 degree angle which is comfortable for him but its not acceptable if he wants to walk normally again! The main PT tech gave him 2 leg braces to wear and C walks so much better when he has them on! He tolerates them well which is a blessing along with his Jobst chinstrap and gloves. I figure with those 2 invasive pieces that he has to wear then Jobst pants and a shirt shouldnt be anything he cant handle.

I have a lot more on my mind but for the sake of time and not having you fall asleep out of sheer boredom I will post again later. Until next time...
Amy

Slacking

So its been a while since I've last posted. I admit that I've been in a funk and have been slacking my blogger duties! It has been a combination of laziness and dread. However here I am! :)

C is doing really well today. Yesterday he had another one of his 'bouts of rage' as I call them. He refused to let the PT tech work with his hands to stretch them. Granted he had an IV in the left but the right one was fine. Sometimes I just want to tell them to give it up. In the long run though it wouldnt benefit C any if I told them that. I want C to have every oppurtunity available and not have any handicaps because of my indifference. Today I warned C that when we leave here that we will have to come back everyday to do therapy and it seemed to sink in. I keep reminding him that this isnt over just because we go home.

Speaking of home....Doc told me on monday that in a week we may be able to go home. The nurses have been whispering the same thing. However I got to have a chat with the Day Rehab coordinator and she let it slip that she was told we may get to leave this sat!!!!!!!!!!! The nurses here like to have surprises up their sleeves. (good ones) So maybe they were trying to throw me off their scent! Who knows....soon and very soon we will be home.

The main PT tech that we will be working with the most told me yesterday that C will have to wear his Jobst suit 23 hours a day for a whole YEAR! If we want really good results. This info I wasnt aware of. I'm thinking hold it.....C will be going to Kndgtn with this on. C's suit will consist of fingerless gloves, a short sleeved vest, long capris and his chin strap. Granted most of that you wont see except the gloves and chin piece, but kids these days are so much crueler than they were when I was in Kndgtn! Believe me I volunteer at school! She then said that they have a staff member that will come to the classroom and explain to the kids and teacher the ins and outs of burn patients and why C looks the way he does. Its going to be a big plus because C has Kendall to go with him. It has been confirmed that C will have full day, everday PT and OT plus he will see a counselor. It sounds exhausting to me but I will do whatever I need to now so C can have a better brighter future, despite his scars.

Marv is giving me a break tom afternoon. Im going home to stretch out in my extra long tub. Although I'm gonna miss my 2' x 2' corner shower with its pelting spray of water that smells of chlorine here! NOT! Talk about enjoying the smaller things in life that I so take for granted! If you have a semi comfortable bed at home and can sleep at least 6 hours consecutively a night, think of me when you wake in the morning. I will have to have back and hip surgery at 40, I guarantee it!!! Alright enough whining! Its wednesday the week is half over and we are nearing a weekend so enjoy it and be blessed! Until next time....
Amy

Lonely

So C is in surgery right now to fix the last spot that needs touched up. Doc said he could leave it and let it heal on its own but he said that would take about 2 months. If he fixes it the spot would heal in about a week. The sooner it heals the sooner we can go home. Hopefully another week to 10 days we should be home. We will see how C is holding up by the end of the week. There are several things that need to happen before we can leave.

I am sitting here in the surgical waiting room all by myself. Its a rather lonely feeling. I dont say that to make anyone feel guilty for not being here. Marv had a full days work and couldnt rearrange anything around to accomodate this surgery. I'm just spoiled because through all the other surgeries I've had someone here to chat with, so I shall chat at you all. C has some balloons in his room that I want to refill with helium at the gift shop. He has this huge monkey balloon holding a banana that says 'hang in there'. He's really cute. I've had to fill him 1x already. It was a gift from his wednesday night teachers at church. Thanks Bruce and Betty! He loves it!

I had the best mothers day dinner ever! Yesterday I ran down to the cafeteria to grab dinner for us all and when I came back Marv had a white sheet over a table with a fake flower planted in a dixie cup! Lol

Theres not much else new to report so until next time.....
Amy

Six weeks

Yes today marks six weeks since we've been here at Akron Childrens. Six weeks since the accident. Six weeks on the roller coaster ride of my life! Nothing at Cedar Point compares to this, I guarantee it! (and I love going there) It doesnt even seem that long to me. I've had a few days that seemed long, but April has flown and here we are 8 days into May. I have this feeling that as hard as I try, this summer will be over before I get to enjoy it. One of my goals before this happened was making the most of everyday and spending time with my little men before the 3 of them head off to school this fall. I was supposed to start this new chapter of my life confident of who I am as a person, not as a wife and mother. Now I have no clue whats going on. But I know the that the Lord has awesome things in store for me as I venture forward into this new chapter I wasnt expecting! I am ecstatic to see whats awaiting me!!!

C walked from his recliner to the nurse's station this forenoon! His room is 3 doors down so it was quite the feat for him!!! I am so proud of him!!! Auntie Em has a sticker chart in C's room and today we told C that he will get 10 stickers if he pushes his walker and does his thing. The PT tech held C for balance and daddy pushed his IV pole and off he went. There were a couple times he wanted to sit on the floor because his legs hurts. Several nurses were cheering him on as he was crying in the hall. He pulled out some spunk and treaded on.

The nite nurse came in and had an order written to turn off C's main pain med that runs in continuasly. He still has the button we can push for pain if he needs it. We got the 411 on how C may act when he starts getting weaned off some of his meds and some of those things I didnt want to hear. I just now witnessed a brutal case of anger coming from C. He's not my angry guy nor does he ever get mad. Occasionally if theres something he cant do right then he'll cross his arms and Hmph, but not like what I just saw. I am hoping and praying this phase doesnt last long, because I'm not sure that I can handle seeing a side of him acting that way. It just showed me what people are like that are hooked to drugs. So sad. :(

C ate more bologna, crackers and cheese with a side of chocolate milkshake this afternoon. I cant wait for the feeding tube to be gone. Tomorrow during C's bath they will be removing C's catheter for good or so they say. We'll see if that actually happens! They will also be removing some more bandages from parts that are healed enough. We are seeing progress everyday, and the light at the end of the tunnel. I wanted to shout out a special Thank you to a fellow preschool mom who gave me a book called 'Meet me at the well' by Virrelle Kidder. I have loved reading this book and adding it with my daily journal! Happy Mothers Day to all moms out there who are underappreciated, underpaid, overworked, over stretched and just plain wore out! May you have a restful day of doing nothing bliss! Thank you all for your continued prayers! Until next time.....
Amy

Great news

I have some awesome news!!! Doc said today that C has 1 spot about the size of his palm that he has to graft again because it didnt take. He will be doin that on monday sometime. However the great news is about a week after that we get to go home!!!!!!! I am being cautiously optimistic that we have no set-backs and that C's minor surgery will go well!!!! I am thinking 10-12 days from now I will be sleeping in my own bed! C will have to come back daily for day rehab, obviously. But for us as a family to be under one roof again is huge! Praise God for all our answered prayers!!! Thanks to all of you who have been praying as well!
Amy

two tone again

I cant seem to get rid of these 2 tone posts. I saw when it happened this time, but it wouldnt let me go back to my color. So sorry if you need glasses if after reading these posts~

Staples

So sorry that I've not posted in a couple days. I didnt have a laptop at home and our home computer decided to end up on the fritz. Now we have to look for a new one. I am back at the hospital and have given my hubby a break. He gets 'institutionalized' very quickly when he's here with C. Especially when its beautiful out.

Wednesday forenoon C went in to have all his staples removed. It took Doc and 4 nurses 15 minutes to remove over 500 staples! I was freaking out! I didnt know C's body was big enough to hold that many staples. After Doc was finished he said that he thinks they got all of them but there may be some still embedded under healed edges. They will show up eventually on an x-ray if he missed any. Comforting. Doc said they wont hurt or cause any discomfort because they're not that big and skin just grows around them.

Yesterday C also walked out to the hall from his bed and back in his room to the recliner, all the while just holding onto Mavs and a nurses hands. I was so proud of him! Marv said he cried on the way back. The rest of the day C's legs got the shakes. Out of the blue his legs would start trembling. C thought this is hilarious that his legs shake and he wasnt doing anything. C has been fitted with silicon chin/cheek piece that is to help smooth out the wrinkles from his face graft. Eventaully he will wear it with his Jobst suit but for now they have it bandaged on his face. The OT tech was in to fit C for his gloves/sleeves as well. I'm not sure yet what color I'm going with for his suit, thought I'll let C decide.

On my drive up here yesterday I was listening to my tunes again. The boys were sleeping so I was in my own little world. All of the sudden a song came on that I normally skip over on my cd.
i think the title is call Your Not Shaken. I dont know the artist. The words totally describe my roller coaster of feelings during the whole time.
I am sinking in a river that is raging,
I am drowning will I ever rise to breathe again,
I wanna know why?
I just wanna understand, will I ever know why?
How could this be from your hands?
Chorus
Every little thing that I had dreamed would be, just slips away like water through my
hands
And when it seems the walls of my belief are crashing down like their all made of sand
I wont let go of you now because I know ...Your not Shaken

I am trembling in the darkness of my own fear
All the questions with no answers still grip me while I'm here
And I may never know why
Oh I may not understand, but I will lift up my eyes, and trust this is your plan!

Now matter what the Lord brings my way, I know that he brought us to it and he'll get us through it. Even though I may not understand why or how this accident is going to further His kingdom, its not for us to know just to follow. The Lord loves when he sees obedience in his children. And I want to be obedient to him.

Heres hoping you all have an awesome weekend, despite the rainy forecast! Until next time...
Amy

French fries

As you can tell C had french fries for dinner. He ate about half of them and then he had enough. I imagine that his stomach has shrunk down to the size of a lima bean. It just couldnt hold any more. C has been drinking gatorade and a few sips of sprite but thats been the extent of his eating.

Tomorrow forenoon C is getting put under light anesthesia to pull out all his staples that he has holding grafts in place. I'm glad that these are getting removed. They seem to be a minor source of discomfort for C. Doc covered the grafts with a material called bio-brain. I dont think its made of brains but I havent asked. After the shark cartilage and pig skin they've been using I'd rather not know. This bio-brain is made of a very thin rubbery type material and has very tiny holes all over. (reminds me of the cap they used back in the 90's to hilight hair) C has this on his head right now and its being held on with titanium staples. I only have a high school education but I really liked science and anatomy. It seems to me that there would be a less painful and grotesque way to adhere this material to one's skin. I'm partial to glue or even tape to hold things in place, not to mention a needle and thread. Doc says its so easy to just take the 'staple gun' and run it along the graft and be done. I've watched construction guys frame both houses we've built and I see how quickly they use nailers and staple guns and thats the mental picture I have of the Doc in the OR. The reason they are taking C to the OR is so that they can sedate him a little more and then do his bandage change with out C remembering. I am all for him not remembering that. The last time the tub team took out staples, they removed upwards of 100. This time though I was told there would be significantly more to remove.

A PT tech came by today to work a little on C's hands and arms. She brought with her what looked like a g-string. hahaha Anyway it was a piece of C's jobst suite that he has to wear around his chin and it goes up over his head. It was a confusing contraption until she showed me how it goes on. His suite is available in several different colors and pink was one of the options. My boys are so anti anything pink or girlish. I told C that if he keeps being mean to the PT staff and fights to do his therapy, Im ordering his whole suite in pink and he screamed NO at the top of his lungs and almost woke up the dead. Marv had to have a little chat with C tonite when he got here about his attitude and keeping it in check. I imagine it went in one ear and out the other. We will see how tomorrow goes.

C had a long day and no nap. He has been sleeping now since about 8:30 pm. I am hoping he sleeps really well tonite, I need my sleep too. I am gonna try to hit the hay a little earlier tonite, so until later.....
Amy

A nugget

What a great day today was! My roller coaster is at the top again. The last time it went down wasnt as far as it sometimes has been. C had a good day. He got to meet Ceasar, a lab/terrier mix from the doggie brigade. He didnt do many tricks but C was happy to see him anyways. I would like to have Petey the Ponie stop by. I understand he's a miniture pony. He was in Fl for the winter and the nurse wasnt sure if he's back yet. He has to undergo an enema before he's allowed through the doors! If I were Petey theres no way I'd be bringing any joy along to share with sick kids, especially after a violation like that! :)

I asked C this evening if he wanted something for dinner and he said yes. I wanted to jump for joy!!! We went over the menu and everything I mentioned he wrinkled up his nose at. He decided on nuggets and chocolate pudding. He only ate about half a nugget, but I'll take whatever amount he's shoving in. So, small progress.

C has finally got his impish ornery little grin back. Its balm to my hurting heart to see his personality come through again. I've waited several weeks to see his smile truly shine on through! When I was saying our bedtime story and prayers tonite C out of the blue said 'mommy how did daddy hurt his hands'? I was thinking he knew how Marvs hands got burned, but with all the meds and trauma that he's had, it doesnt surprise me that he's forgotten. I asked C if he remembered what happened and he said 'I was on fire and it was really hot'. I told him that daddy saved him from the fire and thats how daddys hands got hurt. He said 'ok' and that was all. I want to erase all that from C's memory! I know that mental healing for C is going to have come from Christ. I reassured C that nothing like that will happen again. He said 'I know mommy'. I feel so useless when it comes to this. I have gotten on my knees and begged God to let C forget that day and what happened to him. In his 5yr old mind he doesnt comprehend that things happen for a reason and that God uses events like this to further his kingdom. Its hard for me to see the good thats going to come from this, let alone trying make a child understand. We may never know either this side of heaven. So we cling to what is true and just and let the Lord lead us!

On a side note please pray for my Grandma. She has been admitted to ICU with multiple symptoms. She is 87. Thank you so much. I am looking forward to more visitors tomorrow. People make my days go so much quicker. Until next time...
Amy

Doing Well

Everything about our church service today was so fitting to our lives right now. Thanks Larry for sharing what God places on your heart! God takes the impossible and makes it incredible!!!!! All we have to do is have faith! The song 'God in this city' is also one of my favorites. It was so great being back again. I dont think I've ever missed this many sundays in a row in my life. Soon and very soon we shall return as a family, whole again!

C did well yesterday and today for Marv. He ate some chocolate pudding and drank almost a whole gatorade. All that was left was the backwash in the bottom! :) I'm so proud of my little man. I asked our day nurse if the tub team was able to take the cover off the actual graft and see if it was taking? She said they did and that it looks good! Horray!! C will now have his bandages changed every other day this week. Hopefully on Tues we will know further if he will need any pieces of the grafts redone. C no longer has his 'hat' on. Doc took some donor skin off his head again and it looks kinda nasty. Its all bloody and kinda seepish. He has what looks like saran wrap covering his head but you can see right through it and they have it stapled to his head. OUCH! It hurts my insides to see them on there but I just look at his face and not his head. I still think he's as handsome as ever!!! :) C also told me his back is starting to itch. I was like oh man here we go again. Then my second thought was cool he's itchy thats healing going on! Sweet!!! The sooner he heals the quicker we can go home!!!!

I am looking forward to this week. I have visitors coming to see me at the hospital!!! I love having people here! Thats about all I have for now.....have an awesome week!!!
Amy