Caleb: "I don't like 80's girls. They look WEIRD!" Oh, but if you could have seen us "80's girls" in person my little man....then you would have been just plain SCARED!
Monday, October 31, 2011
Halloween 2011
We had a great weekend dressing up......3 times to be exact. (minus the 103x Caed and Caleb did just playing around the house) My babies are growing UP!
Caleb: "I don't like 80's girls. They look WEIRD!" Oh, but if you could have seen us "80's girls" in person my little man....then you would have been just plain SCARED!
Caleb: "I don't like 80's girls. They look WEIRD!" Oh, but if you could have seen us "80's girls" in person my little man....then you would have been just plain SCARED!
Sunday, October 30, 2011
Emotions on high alert
Ever since Dr. G explained to Caed last week about his upcoming surgery and all it would involve, Caed has been great! I wasn't able to go to this appt, but when I finally met up with Caed a couple of hours after seeing the dr, he burst out of the car saying, "Guess what?!....Next Friday, Dr. G is going to fix my incision!......"(and on and on he went with the details). Almost giddy. I was rather shocked to say the least.
However, last night after attending a costume birthday party, Caed walked in the house and completely melted. There were no warning signs or conversations leading up to his breakdown. I heard a faint cry coming from the bathroom. When I walked in, he was sitting on the edge of the bathtub with tears streaming down his face. "I'm scared!!" I held him for almost a solid hour trying to console as the cries grew louder. I tried to reassure him this one would be "easy." Then...I stopped. I stopped trying to "fix it, " but rather just held him and let him cry it out.
It hit me in that instant the number of times Caed has heard us say those exact words over the past 3 1/2 years. "It's going to be ok, Caed. We PROMISE....this won't hurt. It'll be quick and easy." And yet, how many times were we proven to be liars? How many times did it hurt? How many times was it not ok? And here we are almost 4 years into this nightmare. It's far from quick and easy. I know he's just 8. Kids are very resilient, right? Yes, thank Almighty God they are! But, it's the 1000's of times just like last night that I myself just want to cry right along side him. Agree with him that we are scared too. That it kills us to see him in pain. And how tired....so very tired we also are of sbs.
For several months I have strategically steered clear of a New York Times Best Seller. I knew very little of the book, but anything that has to do with a small boy that becomes ill....I typically ignore. No matter if it gets rave reviews. A couple of weeks ago however, I had stopped by my grandmother's house and she had just finished this "dreaded" book. She handed it to me. Showed me all the pictures and began telling me story after story that was inside. I initially wanted to throw it across the room and move on to another topic of conversation. But, the more she talked, the more I became intrigued. Even after I left, I thought about this book for days on end. Deeply desiring to grab me a copy and dig in.
Yesterday I bit the bullet. I was in a Christian bookstore standing in the checkout line when a beautiful display of bright yellow books caught my eye. When I focused in enough to read the title, my stomach dropped. There it was....again! I stared at it for several minutes, and then without hesitation walked over, grabbed one, and quickly got back in line. Once all the other errands were completed, and everyone was settled at home, I eagerly curled up with that bright yellow book. I hadn't made it too far, when a sickening feeling developed in the pit of my stomach. My first thought was honestly whether I needed to grab something to eat to settle the awful feeling. I continued reading.... I got to chapter 4 or 5 and abruptly threw the book to the other side of the couch. I sat paralyzed. I sat angry. And then got up to quickly try to forget everything that I had just read 30 minutes prior. I went on about my day. Did all the things on my to-do list and more. And yet, it stayed with me the rest of the evening like a bad dream you just can't shake. No matter how much you say to yourself....."stop thinking about it!"....it only magnifies that much greater. Todd was working late, and as I crawled into bed, I could see that darn yellow book staring at me, taunting me, on the lower shelf of my nightstand where I had banished it several hours earlier. I was determined to not give it a second glance. And yet, something unexplainable continued tugging at me. It was a battle I was emotionally too worn out to fight.
I picked it up.
Only to read 2 more pages before once again throwing it to the floor! I was so angry. I don't want to go back there! There are too many painful memories! Please LEAVE ME ALONE!
I have shared with you numerous times what an analyzer I am. I will pick things apart in such detail, I easily lose sight of the big picture. That's where I find myself now. I enjoy telling Caed's story! I STRONGLY DESIRE to tell it in great detail someday in book-form. Why in the world has this little book affected me the way it has?
I live my life daily talking and dealing with short gut. Not only through Caed, but with a support group I am a member of. Parents who are just now starting this journey have loads of questions. I love to share all we have learned regarding various procedures, drugs, etc.... And likewise, have loads of questions myself I ask to those further on down the sbs road. The emails, texts, fb messages, and phone calls from "strangers" all over this country and world....are numerous. I have heard others' stories that are eerily familiar to Caed's. Eerily! I read short gut/transplant blogs every single night. I am completely immersed in it. Hospital life, PICU's, surgeries, the emotional roller coasters, and everything GI under the sun.
So what? What is it about this book that I can't handle? The memories it unearths are not new. I have thought about those and many more SO many times. And have shared them more that I can count. Why is this different? I truly want to finish it. I even tried skipping ahead to get to the "good parts." I don't care about the beginning. I know what he's talking about in every sentence. Been there. Done that. Got the t-shirt!
I keep coming back to this same thought. Does it really matter? Is it so imperative that I finish this particular book? No. Will I someday? Quite possibly. Will not reading this book cause my faith to waiver? No. Will not reading this book cause me to NOT deal with deep embedded issues that MUST come out now? No.
I truly believe I was drawn to this book for a reason. Was that reason God? Very well could be! However, I don't believe His plan is to HURT me. And yet that is what has occurred thus far. Therefore, I will put this little yellow book away (maybe hidden deep in the garage where it can't taunt me....), and trust the Lord will bring it back out if He so chooses...and in the perfect time.
However, last night after attending a costume birthday party, Caed walked in the house and completely melted. There were no warning signs or conversations leading up to his breakdown. I heard a faint cry coming from the bathroom. When I walked in, he was sitting on the edge of the bathtub with tears streaming down his face. "I'm scared!!" I held him for almost a solid hour trying to console as the cries grew louder. I tried to reassure him this one would be "easy." Then...I stopped. I stopped trying to "fix it, " but rather just held him and let him cry it out.
It hit me in that instant the number of times Caed has heard us say those exact words over the past 3 1/2 years. "It's going to be ok, Caed. We PROMISE....this won't hurt. It'll be quick and easy." And yet, how many times were we proven to be liars? How many times did it hurt? How many times was it not ok? And here we are almost 4 years into this nightmare. It's far from quick and easy. I know he's just 8. Kids are very resilient, right? Yes, thank Almighty God they are! But, it's the 1000's of times just like last night that I myself just want to cry right along side him. Agree with him that we are scared too. That it kills us to see him in pain. And how tired....so very tired we also are of sbs.
For several months I have strategically steered clear of a New York Times Best Seller. I knew very little of the book, but anything that has to do with a small boy that becomes ill....I typically ignore. No matter if it gets rave reviews. A couple of weeks ago however, I had stopped by my grandmother's house and she had just finished this "dreaded" book. She handed it to me. Showed me all the pictures and began telling me story after story that was inside. I initially wanted to throw it across the room and move on to another topic of conversation. But, the more she talked, the more I became intrigued. Even after I left, I thought about this book for days on end. Deeply desiring to grab me a copy and dig in.
Yesterday I bit the bullet. I was in a Christian bookstore standing in the checkout line when a beautiful display of bright yellow books caught my eye. When I focused in enough to read the title, my stomach dropped. There it was....again! I stared at it for several minutes, and then without hesitation walked over, grabbed one, and quickly got back in line. Once all the other errands were completed, and everyone was settled at home, I eagerly curled up with that bright yellow book. I hadn't made it too far, when a sickening feeling developed in the pit of my stomach. My first thought was honestly whether I needed to grab something to eat to settle the awful feeling. I continued reading.... I got to chapter 4 or 5 and abruptly threw the book to the other side of the couch. I sat paralyzed. I sat angry. And then got up to quickly try to forget everything that I had just read 30 minutes prior. I went on about my day. Did all the things on my to-do list and more. And yet, it stayed with me the rest of the evening like a bad dream you just can't shake. No matter how much you say to yourself....."stop thinking about it!"....it only magnifies that much greater. Todd was working late, and as I crawled into bed, I could see that darn yellow book staring at me, taunting me, on the lower shelf of my nightstand where I had banished it several hours earlier. I was determined to not give it a second glance. And yet, something unexplainable continued tugging at me. It was a battle I was emotionally too worn out to fight.
I picked it up.
Only to read 2 more pages before once again throwing it to the floor! I was so angry. I don't want to go back there! There are too many painful memories! Please LEAVE ME ALONE!
I have shared with you numerous times what an analyzer I am. I will pick things apart in such detail, I easily lose sight of the big picture. That's where I find myself now. I enjoy telling Caed's story! I STRONGLY DESIRE to tell it in great detail someday in book-form. Why in the world has this little book affected me the way it has?
I live my life daily talking and dealing with short gut. Not only through Caed, but with a support group I am a member of. Parents who are just now starting this journey have loads of questions. I love to share all we have learned regarding various procedures, drugs, etc.... And likewise, have loads of questions myself I ask to those further on down the sbs road. The emails, texts, fb messages, and phone calls from "strangers" all over this country and world....are numerous. I have heard others' stories that are eerily familiar to Caed's. Eerily! I read short gut/transplant blogs every single night. I am completely immersed in it. Hospital life, PICU's, surgeries, the emotional roller coasters, and everything GI under the sun.
So what? What is it about this book that I can't handle? The memories it unearths are not new. I have thought about those and many more SO many times. And have shared them more that I can count. Why is this different? I truly want to finish it. I even tried skipping ahead to get to the "good parts." I don't care about the beginning. I know what he's talking about in every sentence. Been there. Done that. Got the t-shirt!
I keep coming back to this same thought. Does it really matter? Is it so imperative that I finish this particular book? No. Will I someday? Quite possibly. Will not reading this book cause my faith to waiver? No. Will not reading this book cause me to NOT deal with deep embedded issues that MUST come out now? No.
I truly believe I was drawn to this book for a reason. Was that reason God? Very well could be! However, I don't believe His plan is to HURT me. And yet that is what has occurred thus far. Therefore, I will put this little yellow book away (maybe hidden deep in the garage where it can't taunt me....), and trust the Lord will bring it back out if He so chooses...and in the perfect time.
Tuesday, October 25, 2011
And the verdict is......
another surgery!
Caed had another appointment with our local surgeon this afternoon. It was decided that since the silver nitrate wasn't working, a surgical fix would be needed. Not certain of details because I wasn't able to be there, but Todd relayed the basic info. She will push the tissue back in and try to find the source of the little blue mystery stitch. It is infected, and she believes it's spreading to the incision area. They might be related somehow. Simple cause and effect. Dr. G will also clean up around his G-tube site (cutting/burning the granular tissue that has built up around it), as well as put in a new feeding tube.
The surgery in itself will hopefully be very quick and easy. However, as a parent.....NO surgery is "easy." Putting him up on that gurney and watching him being wheeled away, puts a knot in my stomach that I can't possibly describe. This clearly is not our first rodeo, and I guess there is a part of me that knows the drill too well. When it comes to hospitals these days, I tend to harden my heart. Put on the tough exterior. Do what has to be done. And then cry about it later.
We have much to be thankful for...
Even though our IRP doctors are 700 miles away and make it super difficult in times like these because of the distance between us......we are grateful for a surgeon here locally that loves Caed. She knows him. She initially was the one who saved his life. And she's good! She has our complete trust.
Yes, it's another surgery. But Lord willing, this will fix our current problem. It's been a long summer and fall for Caed dealing with this day in day out. No, he has not been hurting. HUGE PRAISE! However, we have to change the bandage on it at least 2 times during the day. One perk of having Nurse Mom as your teacher.
Will it ever end? I ask myself that question more than you can imagine. 3 1/2 years. That's how old Caleb is....and how long Caed has become my hero. I tend to associate "the end" with his G-tube being gone! But will it really? We have begun aggressively weaning Caed from his nightly feedings. I worry.....constantly. Is he gaining weight? Is he getting all the proper nutrition he needs to grow and thrive? Am I making poor decisions concerning his health? What if....it doesn't work and we have to reinsert the tube? How long then? What will his teenage years be like? Will he be able to do all the physical things he loves so much? And as an adult? Lord, please prepare his sweet future wife to not only love him, but also be a good, sensitive nurse! ;)
You have listened to me spill my heart out and ask these same questions over and over and over. You have also heard me answer these same questions over and again. Will I ever finally learn? Will I ever STOP questioning God and His ways? ......no. This will be an area I struggle with til the day I die (as well as MANY others). I will never attain complete faith. It will constantly be a work in progress....but hopefully one that is improving.
I am tired. Physically, emotionally, and yes, spiritually. It seems life keeps throwing us curve ball after curve ball. Rather, I guess I should just be thankful coach hasn't pulled us and we are still in the ballgame. Lord, please give us strength. Strength to keep on keeping on. And not to lose our perspective. OUR CUP RUNNETH OVER....!!!
Caed had another appointment with our local surgeon this afternoon. It was decided that since the silver nitrate wasn't working, a surgical fix would be needed. Not certain of details because I wasn't able to be there, but Todd relayed the basic info. She will push the tissue back in and try to find the source of the little blue mystery stitch. It is infected, and she believes it's spreading to the incision area. They might be related somehow. Simple cause and effect. Dr. G will also clean up around his G-tube site (cutting/burning the granular tissue that has built up around it), as well as put in a new feeding tube.
The surgery in itself will hopefully be very quick and easy. However, as a parent.....NO surgery is "easy." Putting him up on that gurney and watching him being wheeled away, puts a knot in my stomach that I can't possibly describe. This clearly is not our first rodeo, and I guess there is a part of me that knows the drill too well. When it comes to hospitals these days, I tend to harden my heart. Put on the tough exterior. Do what has to be done. And then cry about it later.
We have much to be thankful for...
Even though our IRP doctors are 700 miles away and make it super difficult in times like these because of the distance between us......we are grateful for a surgeon here locally that loves Caed. She knows him. She initially was the one who saved his life. And she's good! She has our complete trust.
Yes, it's another surgery. But Lord willing, this will fix our current problem. It's been a long summer and fall for Caed dealing with this day in day out. No, he has not been hurting. HUGE PRAISE! However, we have to change the bandage on it at least 2 times during the day. One perk of having Nurse Mom as your teacher.
Will it ever end? I ask myself that question more than you can imagine. 3 1/2 years. That's how old Caleb is....and how long Caed has become my hero. I tend to associate "the end" with his G-tube being gone! But will it really? We have begun aggressively weaning Caed from his nightly feedings. I worry.....constantly. Is he gaining weight? Is he getting all the proper nutrition he needs to grow and thrive? Am I making poor decisions concerning his health? What if....it doesn't work and we have to reinsert the tube? How long then? What will his teenage years be like? Will he be able to do all the physical things he loves so much? And as an adult? Lord, please prepare his sweet future wife to not only love him, but also be a good, sensitive nurse! ;)
You have listened to me spill my heart out and ask these same questions over and over and over. You have also heard me answer these same questions over and again. Will I ever finally learn? Will I ever STOP questioning God and His ways? ......no. This will be an area I struggle with til the day I die (as well as MANY others). I will never attain complete faith. It will constantly be a work in progress....but hopefully one that is improving.
I am tired. Physically, emotionally, and yes, spiritually. It seems life keeps throwing us curve ball after curve ball. Rather, I guess I should just be thankful coach hasn't pulled us and we are still in the ballgame. Lord, please give us strength. Strength to keep on keeping on. And not to lose our perspective. OUR CUP RUNNETH OVER....!!!
Sunday, October 16, 2011
Incison Issues....continue
First of all, I want to apologize for not staying on top of this blog better. Once our school year started, I have been going strong and have not had much "spare" time unfortunately. Speaking of, school is going great! For those of you who do not know, I am teaching 2nd grade here in Idalou, and Caed has been allowed to be in MY CLASS! I have 14 other students and I truly love them all. I was never worried with Caed being in my room. 99% of the time, he literally is just a regular student....just like the rest. However, the few times we have had to deal with incision (or tummy) trouble, I am SO GRATEFUL to be near him! I had the privilege of homeschooling Reagan (3 yrs.), and now count it equally gratifying to be able to teach Caed. This is a special year that I am not taking for granted.
Now for an SBS update: Caed has done wonderfully ever since the gallbladder removal back in June. No more pain. Thank YOU God for that! However, we continue to have incision issues. There is a small section that just has not healed. Our local surgeon, as well as UNMC, feels it is just granular tissue. We have been burning the site a couple of times a week with silver nitrate, but honestly.....have been very frustrated at the lack of progress. They say it unfortunately takes a long time, but...ughhh! Maybe it just looks worse than it really is. We also are dealing with the "mystery stitch" that won't go away. It is a small blue stitch that sticks out of the skin. NE said they probably would just pull on it...and snip it off.
We are also aggressively weaning Caed from his tube feeds. So far, so good, but I constantly worry about his weight. In lieu of the decrease in calories, we have been pushing PediaSure, which Caed loves. Dr. M wants him to be completely FREE by Christmas. Then we will see how he does (weight & labs), and look to remove G-tube this spring!! A WONDERFUL thing.....yet as with all the other "changes " the past few years, it has me terrified. As much as you hate these machines, tubes, and meds.....it becomes your life. Your safety net. Without them, fear steps in. We will certainly cross that bridge when we come to it, Lord willing.
So, two specific prayer requests for Caed: Incision to heal up & weaning from tube feeds to be successful. THANK YOU!!!!
Other than those things, life is going strong (and busy!). Reagan and Caleb are doing wonderful! Todd and I are again trying to adjust to our new life as 2 full-time working parents.
I have attached a picture of Caed's incision. Sorry for the quality! (never could get it to load right) The silver nitrate will produce a scab....but then falls off, and we start over. The tissue has gotten bigger over the past 8+ weeks, so we are kind of in limbo with what to do next. These are the days when living 700 miles from our child's doctor is not ideal. Although NE has said we might need to make a "quick trip" to see what's really going on with this awful incision.
Thank you again for continuing to follow Caed's journey. And I really do promise to do a better job keeping you all informed.
Now for an SBS update: Caed has done wonderfully ever since the gallbladder removal back in June. No more pain. Thank YOU God for that! However, we continue to have incision issues. There is a small section that just has not healed. Our local surgeon, as well as UNMC, feels it is just granular tissue. We have been burning the site a couple of times a week with silver nitrate, but honestly.....have been very frustrated at the lack of progress. They say it unfortunately takes a long time, but...ughhh! Maybe it just looks worse than it really is. We also are dealing with the "mystery stitch" that won't go away. It is a small blue stitch that sticks out of the skin. NE said they probably would just pull on it...and snip it off.
We are also aggressively weaning Caed from his tube feeds. So far, so good, but I constantly worry about his weight. In lieu of the decrease in calories, we have been pushing PediaSure, which Caed loves. Dr. M wants him to be completely FREE by Christmas. Then we will see how he does (weight & labs), and look to remove G-tube this spring!! A WONDERFUL thing.....yet as with all the other "changes " the past few years, it has me terrified. As much as you hate these machines, tubes, and meds.....it becomes your life. Your safety net. Without them, fear steps in. We will certainly cross that bridge when we come to it, Lord willing.
So, two specific prayer requests for Caed: Incision to heal up & weaning from tube feeds to be successful. THANK YOU!!!!
Other than those things, life is going strong (and busy!). Reagan and Caleb are doing wonderful! Todd and I are again trying to adjust to our new life as 2 full-time working parents.
I have attached a picture of Caed's incision. Sorry for the quality! (never could get it to load right) The silver nitrate will produce a scab....but then falls off, and we start over. The tissue has gotten bigger over the past 8+ weeks, so we are kind of in limbo with what to do next. These are the days when living 700 miles from our child's doctor is not ideal. Although NE has said we might need to make a "quick trip" to see what's really going on with this awful incision.
Thank you again for continuing to follow Caed's journey. And I really do promise to do a better job keeping you all informed.
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