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
Sunday, May 30, 2010
Monday, May 24, 2010
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
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
Saturday, May 22, 2010
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
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
Thursday, May 20, 2010
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
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
Wednesday, May 19, 2010
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
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
Wednesday, May 12, 2010
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
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
Monday, May 10, 2010
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
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
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