...words from one of Caed's many idols. (Thank you Jacob! You will never know what your letter meant to him)
Our days last week were....tough. Caed was still in a great deal of pain (unless heavily medicated), and just to see his frail hunched body was heart wrenching. This weekend we began to see small improvements, and then finally today....wow!
Caed went to school (all-day) for the first time since his surgery. I was nervous based on some of our attempted days at school last week. He was basically miserable. Today was different. He went through the whole day solely on Tylenol or Motrin. HUGE praise! It took no time at all for the 'old Caed' to come back. A little slower. Still a bit hunched over. But, his crazy personality was finally seen again.
Caed's main incision is looking better. It's closing nicely (minus the appearance of a couple of stitches). We're not sure what to think of them. Our experience with little blue mystery stitches has not been great. But, I'm trying desperately to remain positive and not let Mommy's worrisome heart get in the way. The G-tube hole is also closing well. No worries there.
We have had some dark days (and nights) lately. Tough going from 'happy 'n healthy' to 'sad 'n painful.' You begin to forget what normal is like. When your only worry of the day is what to cook for dinner. You have taken health for granted...even though it was something you swore you would never do again. But, today God shed some beautiful light onto this cloudy, dreary, West Texas day.
Lots of smiles. Lots of laughter filled my day today because of this boy. To finally see the relief was unexplainable. The first thing Reagan asked me after school was, "How did Caed do?" When I told her REALLY WELL....she began to laugh. I could tell her heart was suddenly lifted too.
I can't exhale completely...just yet. Not until I see a closed up tummy.
But, we're on our way.
And in the meantime, I have trust in God's promise that Caed is fearfully and wonderfully made. All of his "shortcomings" have been perfectly designed by the God of the universe. Simply put. There is peace.
Monday, February 27, 2012
Thursday, February 23, 2012
Baby Steps
Just a quick update on the last few days:
Days = good (few pain spells)
Nighttime = lots of crying and pain
Dressing changes = lots of anxiety, as well as pain. Main ab incision is changing, but Todd and I weren't sure if it was a "good or bad" change.
Overall Caed is doing well. He still walks like a little old man....all hunched over, but at times can really pick up his speed. Weaning from pain med has not gone like Todd and I wanted, but we're having to remind ourselves "It's only been a WEEK!"
Caed made a surprise visit to school yesterday (via Nana). He was chomping at the bit to come up and see his friends. He was SO excited.....as well as the rest of the class! I have had to give several "reminders" about being easy around Caed, but they are all so caring and protective of him. It also helps (immensely) that I am his teacher! I can keep my eyes on him 24/7.
Today, we decided to let Caed just go to school til lunchtime. 3 hours. I thought it would be fairly easy. During those 3 morning hours, we are solely in our classroom. I knew there would not be any long walks to the library, etc... He did well.....for about an hour. Then, came to me with "that look." He was very pale and had tears in his eyes. At that point, I thought "What have I done? He is not ready for all this yet." It was time for more pain med, so I gave him some and let him lay his head on his desk. Within about 30 minutes, he perked up and even began raising his hand to answer Math questions. Whew! But, by lunch, I knew it was time. He was tired and just didn't have that "Caed spunk." Tomorrow we will attempt the same thing.
In the meantime, Todd and I have been a little concerned or just flat out confused as to what exactly this incision is supposed to be looking like at this stage. A few nights ago it looked completely different when the bandages were taken out. Afterward, I was truly sick at my stomach. Not from doing it....but rather thinking we were backsliding (incision looked worse). I called a sweet friend here in our hometown who has great knowledge in wound care, and she kindly paid us a visit this evening. Afterward, she encouraged our hearts so much by saying....it all looked good! I can't believe I'm writing this.....but we seem to be having another "mystery stitch" issue however. An ornery blue stitch ONCE AGAIN is showing its awful face. We're just not sure what to make of it. I will take a picture and discuss it with NE soon.
Caed not only got a visit tonight by sweet Nurse Sandy, but also her super-amazing son, Tanner. 2008 has a lot in common for these 2 special guys. Both of them went through life-altering traumatic experiences. Both of them are as tough as nails. Both of them were hand-picked by God to do a great work through a painfully hard journey. Tanner talked with Caed, and gave him some wonderful encouraging words. I know Caed has no clue the magnitude of those simple words spoken to him. Maybe someday....many many years from now, Caed will be the one getting to visit a sick little boy and offering his own life lessons. Thank you Tanner!
Days = good (few pain spells)
Nighttime = lots of crying and pain
Dressing changes = lots of anxiety, as well as pain. Main ab incision is changing, but Todd and I weren't sure if it was a "good or bad" change.
Overall Caed is doing well. He still walks like a little old man....all hunched over, but at times can really pick up his speed. Weaning from pain med has not gone like Todd and I wanted, but we're having to remind ourselves "It's only been a WEEK!"
Caed made a surprise visit to school yesterday (via Nana). He was chomping at the bit to come up and see his friends. He was SO excited.....as well as the rest of the class! I have had to give several "reminders" about being easy around Caed, but they are all so caring and protective of him. It also helps (immensely) that I am his teacher! I can keep my eyes on him 24/7.
Today, we decided to let Caed just go to school til lunchtime. 3 hours. I thought it would be fairly easy. During those 3 morning hours, we are solely in our classroom. I knew there would not be any long walks to the library, etc... He did well.....for about an hour. Then, came to me with "that look." He was very pale and had tears in his eyes. At that point, I thought "What have I done? He is not ready for all this yet." It was time for more pain med, so I gave him some and let him lay his head on his desk. Within about 30 minutes, he perked up and even began raising his hand to answer Math questions. Whew! But, by lunch, I knew it was time. He was tired and just didn't have that "Caed spunk." Tomorrow we will attempt the same thing.
In the meantime, Todd and I have been a little concerned or just flat out confused as to what exactly this incision is supposed to be looking like at this stage. A few nights ago it looked completely different when the bandages were taken out. Afterward, I was truly sick at my stomach. Not from doing it....but rather thinking we were backsliding (incision looked worse). I called a sweet friend here in our hometown who has great knowledge in wound care, and she kindly paid us a visit this evening. Afterward, she encouraged our hearts so much by saying....it all looked good! I can't believe I'm writing this.....but we seem to be having another "mystery stitch" issue however. An ornery blue stitch ONCE AGAIN is showing its awful face. We're just not sure what to make of it. I will take a picture and discuss it with NE soon.
Caed not only got a visit tonight by sweet Nurse Sandy, but also her super-amazing son, Tanner. 2008 has a lot in common for these 2 special guys. Both of them went through life-altering traumatic experiences. Both of them are as tough as nails. Both of them were hand-picked by God to do a great work through a painfully hard journey. Tanner talked with Caed, and gave him some wonderful encouraging words. I know Caed has no clue the magnitude of those simple words spoken to him. Maybe someday....many many years from now, Caed will be the one getting to visit a sick little boy and offering his own life lessons. Thank you Tanner!
Monday, February 20, 2012
Change
If you don't like something change it; if you can't change it, change the way you think about it. ~Mary Engelbreit
It broke into my home four years ago. It did not quietly pick the lock and tip toe down the hall searching for something of worth to steal. It violently burst through the front door turning over everything in its path.
There was nothing we could do.
Change had surely made an unannounced, uninvited visit. We tried desperately to fight it. But soon realized it had stiff-armed us....and we were simply throwing punches to the wind.
It didn't take long for us to see we were wasting our energy (what small amount we had left) and begin to......accept its presence.
Soon....central lines and ((scary)) line infections, g/j tubes, PICU stays, ventilators, drains, surgeries, high powered drugs, hospital life, daily procedures, medical lingo, Post-Traumatic Stress, TPN, enteral feeding, home health care, lab draws, bac overgrowth, and hydration/intestinal rehab became the norm. On the other hand, our family was torn apart, we had been taken from our home, our new born baby was growing up without us, and everything that was.....was now.....NOT. All of these things were simply part of our everyday lives. There was nothing we could do to change them. But, our attitude towards them...could.
We saw how God's hand was in each and every situation. No matter HOW DIFFICULT the day. We knew this "awful" change that had ran-sacked our home.....would ultimately bring more good than we could ever imagine. We were called to simply....trust.
This evening I was making a new batch of Caed's ORS (oral rehydration salt mixture). I reached into the medical box as I do every single day, and.....froze. I began looking. Digging. Realizing for the first time, 98% of its contents were completely useless to Caed now. I remembered back to a day after we came home from our 3 month time in NE, and I had to clean out my parents' pantry (aka. medical supply central). Caed no longer had his central line, therefore we no longer needed all of the supplies that graced those shelves. It was quite honestly, a strange bitter/sweet feeling.
That's how I feel tonight. We will be mailing back his feeding pump to our home health provider sometime this week. Don't even get me started on that one! Just as most children have a nightlight, soft music, or a teddy bear to sleep with, Caed had the comforting lull of his feeding pump to whisk him off every night. Honestly, if I could, I would pack it away carefully along with other memoirs (favorite baby blanket, newborn outfit he came home in from the hospital, etc...) That little green machine helped save my son's life. It has sustained him over the past several years and got him to where he is today.
But, it's time once again for a change.
Today, Caed has done well. He is still moving at a slower pace and very hunched-over (breaks my heart), but overall feeling much better. Pain med is being weaned down as we speak! However, tonight he came to me whimpering saying, "Mom, my tube hurts!" I quickly replied (with a wink), "Your TUBE? What TUBE?" Just saying those words is......strange! But, apparently that hole has been bothering him more today. It is deeper, and they said it will take longer to close up than the ab one. Speaking of....dressing changes are going "good." I'm getting better. Faster. And I think less traumatic for Caed. He still does NOT like them, but endures like a champ.
Change has come back to visit our home this week. But now, it has become an old friend. It was invited this time, and we were more than happy to see it.
Change is good. Just easily misunderstood.
It broke into my home four years ago. It did not quietly pick the lock and tip toe down the hall searching for something of worth to steal. It violently burst through the front door turning over everything in its path.
There was nothing we could do.
Change had surely made an unannounced, uninvited visit. We tried desperately to fight it. But soon realized it had stiff-armed us....and we were simply throwing punches to the wind.
It didn't take long for us to see we were wasting our energy (what small amount we had left) and begin to......accept its presence.
Soon....central lines and ((scary)) line infections, g/j tubes, PICU stays, ventilators, drains, surgeries, high powered drugs, hospital life, daily procedures, medical lingo, Post-Traumatic Stress, TPN, enteral feeding, home health care, lab draws, bac overgrowth, and hydration/intestinal rehab became the norm. On the other hand, our family was torn apart, we had been taken from our home, our new born baby was growing up without us, and everything that was.....was now.....NOT. All of these things were simply part of our everyday lives. There was nothing we could do to change them. But, our attitude towards them...could.
We saw how God's hand was in each and every situation. No matter HOW DIFFICULT the day. We knew this "awful" change that had ran-sacked our home.....would ultimately bring more good than we could ever imagine. We were called to simply....trust.
This evening I was making a new batch of Caed's ORS (oral rehydration salt mixture). I reached into the medical box as I do every single day, and.....froze. I began looking. Digging. Realizing for the first time, 98% of its contents were completely useless to Caed now. I remembered back to a day after we came home from our 3 month time in NE, and I had to clean out my parents' pantry (aka. medical supply central). Caed no longer had his central line, therefore we no longer needed all of the supplies that graced those shelves. It was quite honestly, a strange bitter/sweet feeling.
That's how I feel tonight. We will be mailing back his feeding pump to our home health provider sometime this week. Don't even get me started on that one! Just as most children have a nightlight, soft music, or a teddy bear to sleep with, Caed had the comforting lull of his feeding pump to whisk him off every night. Honestly, if I could, I would pack it away carefully along with other memoirs (favorite baby blanket, newborn outfit he came home in from the hospital, etc...) That little green machine helped save my son's life. It has sustained him over the past several years and got him to where he is today.
But, it's time once again for a change.
Today, Caed has done well. He is still moving at a slower pace and very hunched-over (breaks my heart), but overall feeling much better. Pain med is being weaned down as we speak! However, tonight he came to me whimpering saying, "Mom, my tube hurts!" I quickly replied (with a wink), "Your TUBE? What TUBE?" Just saying those words is......strange! But, apparently that hole has been bothering him more today. It is deeper, and they said it will take longer to close up than the ab one. Speaking of....dressing changes are going "good." I'm getting better. Faster. And I think less traumatic for Caed. He still does NOT like them, but endures like a champ.
Change has come back to visit our home this week. But now, it has become an old friend. It was invited this time, and we were more than happy to see it.
Change is good. Just easily misunderstood.
Sunday, February 19, 2012
Wonder Word
We made it! Thank you for all the prayers for today as we traveled home. Caed did really well. Each take-off and landing (6 to be exact) seemed to cause the most pain, but other than that, we were able to wheel him around each airport with comfort and ease. He was giddy with excitement as we inched our way closer home.
Todd and I's understanding was that our car would be waiting for us once we got to the Lubbock Airport. But, as we made our way through the final revolving door into the baggage claim area, I could see my parents. What a great surprise! Reagan and Caleb came running around the corner (in their pajamas), and it was as sweet a reunion as any you see in airports. I turned to look back at Caed (still sitting in the wheelchair), and tears began streaming down his cheeks. He was crying uncontrollably. It scared me at first, thinking it was his tummy. But then I soon realized, he was just so emotional. He had missed home. He had missed his brother and sister so much. It's always tough for him being there at the hospital....alone. Of course, tears came to my eyes at that point as well. It was a joyous time. We were home. Caed was doing well. We had been reunited with Reagan and Caleb. The excitement of finally being "home," as well as the pain, fear, and trauma of the last week... collided in that brief moment. It was just more than Caed could handle right then.
As we were flying home this evening, a "random" thought came over me. Each day in my class at school, we learn a new word. It's called our "Wonder Word of the Day." We have probably learned approximately 100 words thus far. A few weeks ago, our word was agony. Most of the students had heard of it, but were unsure of what it actually meant. We discussed its definition: extreme or intense pain, answered some questions, and then went around the room for each student to share (their favorite part!) a time when they experienced "agony." The answers varied, but ranged from "stumping a toe" to "falling off the trampoline" to "smashing a finger in a door" to "stepping on a nail." All of which clearly were PERFECT examples (for a 2nd grader). Then it was Caed's turn. I knew in my head what his answer should be, but was fairly certain he would go with the flow and say something about getting whopped over the head by his little brother, etc... (actually I knew it would be ANYTHING to get a laugh from his classmates). However, he began like this:
One day.....I was sitting in my Nana's living room......and my tummy started hurting....and I threw up.....and then it REALLY started hurting.....and I went to the hospital.
And that was it. Story over. Heads around the room began nodding. They knew the story he was referring to. They had all seen his g-tube. His scars. His latest "incision." So there really was no need to expound any deeper into his story. I agreed that was a good example of agony....then, it was on to the next student. As his teacher my heart broke for him. The reality of his example. As his Mama, I wanted to curl into the fetal position right then and there and bawl my eyes out. The reality of living through his example along side him. In that small classroom, oblivious to what he had just shared, I knew there was only 1. Me included. There was only 1 person in that room that really knew agony.
The medical version of his short to-the-point example was: he was dying. His intestines had gotten twisted up into such an awful (excruciatingly painful) mess, they were dying. He was bleeding internally. His body was in shock. Within hours, he would be dead.
Almost 4 years to the day have passed since that dreadful afternoon. Caed has experienced more agony than I have ever even thought about. He has gone through more trauma, more heartache, and more fear than most people 10x his age.
And yet......look at him. He is so strong and brave and resilient. Simply put, he is my HERO! Reagan made a big sign for him in his room tonight. It read: Caed, I love you. You inspire me! And she's right. God has truly turned the dark, awful ashes into something radiantly beautiful. He is using this little boy to touch the lives of so many!
Thank you God for showing Your faithfulness to us once again this week. Thank you for getting Caed through it and allowing him to be warm and snug in his own bed tonight. We ask forgiveness for those times we took our eyes off You and allowed our own fears to flood our hearts. Thank you for showing us the ultimate example of "agony" in Your son, Jesus....and what You allowed Him to endure for OUR SAKE! Words fall short.
He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows , and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed...
Isaiah 53:2-5
Todd and I's understanding was that our car would be waiting for us once we got to the Lubbock Airport. But, as we made our way through the final revolving door into the baggage claim area, I could see my parents. What a great surprise! Reagan and Caleb came running around the corner (in their pajamas), and it was as sweet a reunion as any you see in airports. I turned to look back at Caed (still sitting in the wheelchair), and tears began streaming down his cheeks. He was crying uncontrollably. It scared me at first, thinking it was his tummy. But then I soon realized, he was just so emotional. He had missed home. He had missed his brother and sister so much. It's always tough for him being there at the hospital....alone. Of course, tears came to my eyes at that point as well. It was a joyous time. We were home. Caed was doing well. We had been reunited with Reagan and Caleb. The excitement of finally being "home," as well as the pain, fear, and trauma of the last week... collided in that brief moment. It was just more than Caed could handle right then.
As we were flying home this evening, a "random" thought came over me. Each day in my class at school, we learn a new word. It's called our "Wonder Word of the Day." We have probably learned approximately 100 words thus far. A few weeks ago, our word was agony. Most of the students had heard of it, but were unsure of what it actually meant. We discussed its definition: extreme or intense pain, answered some questions, and then went around the room for each student to share (their favorite part!) a time when they experienced "agony." The answers varied, but ranged from "stumping a toe" to "falling off the trampoline" to "smashing a finger in a door" to "stepping on a nail." All of which clearly were PERFECT examples (for a 2nd grader). Then it was Caed's turn. I knew in my head what his answer should be, but was fairly certain he would go with the flow and say something about getting whopped over the head by his little brother, etc... (actually I knew it would be ANYTHING to get a laugh from his classmates). However, he began like this:
One day.....I was sitting in my Nana's living room......and my tummy started hurting....and I threw up.....and then it REALLY started hurting.....and I went to the hospital.
And that was it. Story over. Heads around the room began nodding. They knew the story he was referring to. They had all seen his g-tube. His scars. His latest "incision." So there really was no need to expound any deeper into his story. I agreed that was a good example of agony....then, it was on to the next student. As his teacher my heart broke for him. The reality of his example. As his Mama, I wanted to curl into the fetal position right then and there and bawl my eyes out. The reality of living through his example along side him. In that small classroom, oblivious to what he had just shared, I knew there was only 1. Me included. There was only 1 person in that room that really knew agony.
The medical version of his short to-the-point example was: he was dying. His intestines had gotten twisted up into such an awful (excruciatingly painful) mess, they were dying. He was bleeding internally. His body was in shock. Within hours, he would be dead.
Almost 4 years to the day have passed since that dreadful afternoon. Caed has experienced more agony than I have ever even thought about. He has gone through more trauma, more heartache, and more fear than most people 10x his age.
And yet......look at him. He is so strong and brave and resilient. Simply put, he is my HERO! Reagan made a big sign for him in his room tonight. It read: Caed, I love you. You inspire me! And she's right. God has truly turned the dark, awful ashes into something radiantly beautiful. He is using this little boy to touch the lives of so many!
Thank you God for showing Your faithfulness to us once again this week. Thank you for getting Caed through it and allowing him to be warm and snug in his own bed tonight. We ask forgiveness for those times we took our eyes off You and allowed our own fears to flood our hearts. Thank you for showing us the ultimate example of "agony" in Your son, Jesus....and what You allowed Him to endure for OUR SAKE! Words fall short.
He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows , and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted. But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed...
Isaiah 53:2-5
Saturday, February 18, 2012
The Turnaround
The 24 hours after our discharge were probably the worst we have seen since surgery. Either Caed was asleep (from meds) or crying in pain. We had been transported back to a time when that's all Caed did for weeks at a time. Todd and I were speechless. What was the cause? What do we do? By about 11 this morning, I was headed for my phone to call the docs. That's when it happened: Caed has been fighting the normal post-op cough pretty badly. He just couldn't shake it. I had 3 c-sections and remember vividly the horrible pain that came when needing to cough. The nurses would always say to grab a pillow and hold it tightly against the incision. I instead wanted to grab a pillow and SMACK them on the head! So, I knew (somewhat...I had stitches rather than left OPEN) the pain that Caed was having with each cough. This morning, he started crying and coughing....and then threw up really big. We hoped that would help.....and it did.
I left the room for awhile and when I walked back in...a huge surprise was waiting for me. Caed and Todd were sitting at the table and were working on some Legos. He started talking (really for the first time since surgery) and just seemed overall that he had been given great relief in pain. For the remainder of the day, he continued to act more like the Caed we all know and love. He walked more (although very slow and hunched over) and finally really ATE! We took several walks around the hospital (with Caed in wheelchair) and even went outside to get some fresh air. His spirits have been enormously lifted, as well as Todd and I's.
Traveling tomorrow is still going to be hard. 4 different airports and 8 hours. I think if we can stay on top of his medication and make sure we have a wheelchair, we should be ok. It will be hard on him, but hopefully manageable. Yesterday I wasn't sure it would even be possible. Thank you once again for praying for this situation.
This hospital admission completely caught us off guard. Nothing about the last 4 days was what we had expected. This was supposed to have been 'easy.' Tube removal and revision of incision.
However, with what Dr. M discovered while working on incision, along with the decision to leave wound open....took us down a very different path. Ultimately, a good one, but hard.
Today also marked my first solo dressing change. Caed cried obviously, and Mama and Daddy held their breath. Exhaling only after it was complete. He asked Todd if he would cover his eyes for him. Caed is normally one to always want to watch EVERYTHING in detail being done to him. After Thursday's shock of our lives....he may never want to see anything ever again. I don't blame him. I will still have nightmares on that one. Caed's incision(s) are looking "good." Tough to really say that as a Mom. But, comparatively speaking....yes, SO much better.
We have had 4 "bad days." And thus far, 1/2 of a good one. Amazing how you can experience the lowest of lows....and the highest of highs all in 1 single day. We are praising God tonight. He not only heard Caed's cries for help, but ours as well.
...the healing is just beginning
Consider what God has done. Who can straighten what HE has made crooked? When times are good, be happy; but when times are bad, consider: God has made one as well as the other.
Ecc. 7:13-14
I left the room for awhile and when I walked back in...a huge surprise was waiting for me. Caed and Todd were sitting at the table and were working on some Legos. He started talking (really for the first time since surgery) and just seemed overall that he had been given great relief in pain. For the remainder of the day, he continued to act more like the Caed we all know and love. He walked more (although very slow and hunched over) and finally really ATE! We took several walks around the hospital (with Caed in wheelchair) and even went outside to get some fresh air. His spirits have been enormously lifted, as well as Todd and I's.
Traveling tomorrow is still going to be hard. 4 different airports and 8 hours. I think if we can stay on top of his medication and make sure we have a wheelchair, we should be ok. It will be hard on him, but hopefully manageable. Yesterday I wasn't sure it would even be possible. Thank you once again for praying for this situation.
This hospital admission completely caught us off guard. Nothing about the last 4 days was what we had expected. This was supposed to have been 'easy.' Tube removal and revision of incision.
However, with what Dr. M discovered while working on incision, along with the decision to leave wound open....took us down a very different path. Ultimately, a good one, but hard.
Today also marked my first solo dressing change. Caed cried obviously, and Mama and Daddy held their breath. Exhaling only after it was complete. He asked Todd if he would cover his eyes for him. Caed is normally one to always want to watch EVERYTHING in detail being done to him. After Thursday's shock of our lives....he may never want to see anything ever again. I don't blame him. I will still have nightmares on that one. Caed's incision(s) are looking "good." Tough to really say that as a Mom. But, comparatively speaking....yes, SO much better.
We have had 4 "bad days." And thus far, 1/2 of a good one. Amazing how you can experience the lowest of lows....and the highest of highs all in 1 single day. We are praising God tonight. He not only heard Caed's cries for help, but ours as well.
...the healing is just beginning
Consider what God has done. Who can straighten what HE has made crooked? When times are good, be happy; but when times are bad, consider: God has made one as well as the other.
Ecc. 7:13-14
Friday, February 17, 2012
Pain
....that basically sums up Caed's day today. He has not been himself and has cried at least 50% of the time. Just walking a few feet does him in. He can barely make it. He was moving better the day of and after surgery than he is currently. We are guessing since they have begun "messing" with his incision (dressing changes), that is the main cause. (and also because he had some high powered drugs in his system helping out after surgery that we no longer have access to)
Speaking of his incisions, today was a good day for Todd and I. We had hit an unexpected low yesterday after the 1st 2 changes. There was just so much blood. Come to find out, that was not normal. They were concerned with him bleeding out....so this morning Mercer's PA wanted to take a better look herself. We all held our breath as the gauze was pulled out. Wow! Once again, shock hit Todd and I, but this time in a positive way. The main difference was the amount of blood. Don't hear me wrong, there is still something very wrong seeing inside your little boy (2 places), however...we were able to look at it simply from a wound standpoint, and it looked so much better. Thank you for your prayers specifically in regards to the incision.
Our spirits were immediately lifted, and we were finally able to exhale. However the pain issue has now got us feeling deflated again. I guess we were expecting the same Caed post-op from this summer's gallbladder removal. He bounced back from that so much quicker. He is currently on the max dose of pain med.....but we are eager to see some improvement so we can begin the weaning process.
Despite the pain issue, we were discharged to the Lied Transplant Center (literally our second home), and our plan is to stay tomorrow and do nothing but rest up. We fly out Sun at noon, and spending all day in airports (post-op) can be really hard. PLEASE begin to pray specifically that Caed can have a much improved day tomorrow (pain control), and be able to "comfortably" get home on Sunday.
I look at him today and just want to cry right along side him. Tough reminders of painful days....not too long ago resurface. I received a text from my dad with a simple lyric from an old song: "He didn't bring us this far....to leave us." I completely agree and needed to be reminded of just how far Caed has come in these last 4 years. I know he will get through this too!
Speaking of his incisions, today was a good day for Todd and I. We had hit an unexpected low yesterday after the 1st 2 changes. There was just so much blood. Come to find out, that was not normal. They were concerned with him bleeding out....so this morning Mercer's PA wanted to take a better look herself. We all held our breath as the gauze was pulled out. Wow! Once again, shock hit Todd and I, but this time in a positive way. The main difference was the amount of blood. Don't hear me wrong, there is still something very wrong seeing inside your little boy (2 places), however...we were able to look at it simply from a wound standpoint, and it looked so much better. Thank you for your prayers specifically in regards to the incision.
Our spirits were immediately lifted, and we were finally able to exhale. However the pain issue has now got us feeling deflated again. I guess we were expecting the same Caed post-op from this summer's gallbladder removal. He bounced back from that so much quicker. He is currently on the max dose of pain med.....but we are eager to see some improvement so we can begin the weaning process.
Despite the pain issue, we were discharged to the Lied Transplant Center (literally our second home), and our plan is to stay tomorrow and do nothing but rest up. We fly out Sun at noon, and spending all day in airports (post-op) can be really hard. PLEASE begin to pray specifically that Caed can have a much improved day tomorrow (pain control), and be able to "comfortably" get home on Sunday.
I look at him today and just want to cry right along side him. Tough reminders of painful days....not too long ago resurface. I received a text from my dad with a simple lyric from an old song: "He didn't bring us this far....to leave us." I completely agree and needed to be reminded of just how far Caed has come in these last 4 years. I know he will get through this too!
Thursday, February 16, 2012
Don't judge a book by its cover
This was Caed's 6th abdominal surgery. You would think we've seen it all by now, but apparently not. Today Todd and I got a big surprise. We knew during rounds they would want to take the surgical bandages off and get a good look at the incision(s). Caed is always nervous with this part, but we gave him a big pep talk beforehand and reassured him it would be "easy." As Dr. M began removing the outer dressing, he told us in more detail what the incision looked like. He said he left them "open" to avoid more infection. With all the trouble we have had these past 8 months, he felt this was the best choice for ultimate healing. Todd and I agreed.
But, when the last layer was lifted off.....our jaws dropped. Definitely NOT what we expected. I had seen the g-tube hole many times (and hated it every time!), but the vertical abdominal incision proved to be WAY MORE than this Mommy could take. As they unpacked it, and we saw what lay underneath that beautiful white bandage...I felt like I was watching some Friday the 13th movie from the 7th grade. In my opinion, we might as well have been standing there in the O.R. It was truly one of the most horrific things I have witnessed over these past 4 years. I did not have the option of turning my head and running out of the room, but rather had to sit inches away and be given a crash course in open wound care. That in itself was uncomfortable enough. I did not go to nursing school for a reason. (I have been known to pass out in a hospital simply visiting others). Not only was it WAY too graphic....but it was on my baby! I literally had to block his face out of my view, and concentrate solely on the job at hand. The g-tube site (when tube was out) always reminded me of a gunshot wound. The other one looked as though someone took a knife and sliced him open. Deep. (which I guess is the reality) "Surgery" just has a nicer ring tone. Caed was scared. Giant tears filled his eyes and he whimpered several times, but was so incredibly brave. Today has been one of those days, he's been too brave. The nurse even commented and tried to explain to him it was OK to cry. It was ok to be honest with his pain level. He's absolutely amazing!!
After it was over, Todd went to grab some lunch, and I....melted. (in the privacy of the bathroom away from Caed of course). I couldn't believe what I was forced to witness. That image will forever be engraved in my head. An image that will be added to the long list of nightmares from the past 4 years.
Now for the 'good news'....this has to be done everyday, twice a day BY ME....for the next several weeks. I am fully aware it will only get better as the wound begins to close and heal up, and know I will slowly get used to it (just like everything else I've had to do over the years). I am reminded of one of my favorite quotes: "You don't know how strong you are until being strong is the only choice." That's it! I have NO other choice. It has to be done. But I know God will give Todd and I exactly what we need...each and everyday.
Today was tough. Emotionally for Todd and I. Physically for Caed. He did not have the day we expected. He has been overall pretty sad. Uninterested in just about everything. He did however get up a few times and walk. Currently he is having quite a bit of anxiety due to the next dressing change (coming up in the next few minutes). PLEASE pray for him. Pray for me. I am supposed to do it tonight (with assistance from the nurse). Caed will spend another night in the hospital, but our plan is to get discharged tomorrow. We will play that by ear as well. He just has not had a good day.
Thank you again for all your thoughts and prayers!!! We need them.
Wednesday, February 15, 2012
An answer was found!
This morning Caed was in an unusually good mood...did not seem the least bit stressed, but rather was very occupied with his latest obsession (learning to juggle). However as surgery time inched closer, he became very quiet. Never made as much as a whimper, but rather turned completely mute. The different doctors and nurses even commented several times at how impressed they were with his 'bravery.' Caed told me this morning as we were getting ready that it wasn't the surgeries that he didn't like.....but rather when they wheeled him away from us. I couldn't agree with him more. That part is very torturous.
The surgery lasted about an hour and 1/2. Dr. M came out and said he thinks he discovered the culprit to our stubborn 8 month long incision issue. Apparently part of his intestine became attached to the underlying tissue...and he also of course found lots of infection. We were completely shocked. But....should have known those ornery intestines had a role in it. We have high hopes though now that healing can finally take place.
Caed has been in quite a bit of pain since surgery. Dr. M had to cut (and dig around) more than originally expected since he was trying to find the cause of the incision trouble, but again Caed is being super strong. If we can get through these first 24 hours....he should be back to his normal crazy self in no time.
The "no feeding tube" really hasn't hit me yet. I guess since we haven't seen it or the other 2 incisions yet. Hopefully they will remove bandages tomorrow during rounds.
Thank you all once again for your outpouring of support during this time. LORD WILLING, this will be the last surgery for a very, very long time.
Tuesday, February 14, 2012
Now you see it....
....tomorrow you won't!
The reality of what is taking place tomorrow leaves me......speechless. Thoughts and memories are spinning wildly in my head of the past 4 years. Yes, that's right. Almost 4 years to the day. March 1, 2008. The day that changed our lives completely.
Or did it?
During my senior year in high school I was introduced to this "new doctrine" called the Sovereignty of God. It was exciting. It was mind-boggling. And yet brought abundant amounts of joy and peace over the next 17 years. Then it happened. That's when the rubber truly met the road, and we were tested. Did we truly BELIEVE what we said we did? Was God really in control of all things? Even the unspeakable...?
I remember like it was yesterday. The early early morning of March 2. We had been in the ER for many hours trying desperately to come up with a "cause" to Caed's excruciating pain attacks. Then....the surgery. 5 hours. 5 very long hours in the middle of the night. We were the only family left in the waiting room. A small group of 5-6 of us. At times we tried to be normal. We attempted small talk even though none of us were really interested. We got up and walked the cold, dark empty hallways. I remember going into the stall of the nearest restroom many times just to cry. To pour my heart out to a God who seemed a million miles away. Then, I would dry my eyes, walk out and pretend to be brave again. After Dr. G finally came out and explained what she found and ultimately was forced to remove, we stood in the hallway and watched them wheel him away. He didn't look like Caed. His face was abnormally swollen, a giant tube placed down his throat (breathing for him), and another dozen tubes/wires covering his tiny 4 year old body. Once we got to see him for the first time in PICU, they told us he obviously could not respond, but encouraged us to talk to him. Todd was wonderful. He was so sweet, kind, and loving and told Caed how good he was doing and how much he loved him. Then it was my turn. Awkwardness filled the dark little room. I didn't know what to say. This was not normal. How could I talk to my little boy and tell him he was doing good and looked good?....when I knew he wasn't. I couldn't look at his frail, trauma induced body. They were telling me it was Caed. It was not. I forced out a few words...trying to hold back the flood of tears that were ready to roll at the slightest blink of an eye. It was all so foreign to me. Completely unnatural and made me sick to my stomach. An hour later, our parents told us we needed to go get some rest (6 am). Since Todd's mom lived just blocks from the hospital, her house would be the ideal spot. Once we finally got there and got settled into bed (still wearing the exact clothes we had been wearing almost 24 hours prior), we lay there in silence. Our bodies screaming for rest (physical and emotional), and yet all we could do was stare intently at the ceiling. Stunned. Finally, Todd reached over and grabbed my hand and began to pray. I squeezed my eyes shut wanting desperately to tune out what he was saying. Hearing Todd pray like that only validated the seriousness of the situation we had unexpectedly found ourselves in.
Fast forward 50+ days. We were still in the hospital and Caed had just had his 3rd bowel resection. After this particular surgery the words "multi-organ transplant list" were brought up several times. A few days later, Todd and I were forced into a "conversation" that no parent should ever have to experience. I have blocked out most of what was said that awful night....except 2 little words. "Burial plot."
Since that day, we have experienced many highs and lows, and have plenty of material for our very own "made-for-tv-movie." (but then again, who doesn't these days?) To sit back and contemplate it all.....where we were 4 years ago, to where we are now, is truly amazing. It makes nights like this one tough. Tomorrow is a HUGE milestone for Caed. One that will not soon be forgotten. In a way, it represents his "healing day." Even though we have not used his g-tube for several months, it's still there. It is a constant reminder. Honestly, I'm not sure how I will really feel with it gone. Caed has had it 1/2 his life! It has made Caed who he is today. And yet, SO much joy floods our hearts. I look at Caed's future now.....and smile.
It's easy to see the ways Caed is different when we are back home with all his friends. Outwardly, no. He is as normal as they come. Thank GOD for that! But, there has been a list of things Caed can't do. Most have been easily accepted and understood over the years. Others, not so much, and tears and heartache usually come. As hard as it is coming back to the hospital (for whatever reason these days), it is here that we are continually reminded of God's grace. Here at UNMC, some kids call this "home." On a daily basis, these drs operate and care for very sick children and try to manage their long-term care. But, it is HERE....that the tables are finally turned, and Caed gets to be the "Intestinal Rehab Rockstar." Here, he gets to be the poster boy. And it is here, where we are constantly reminded of just HOW FAR he has come.
Today in our pre-op anesthesia meeting, it hit me. The doctor began asking, "...so he isn't currently on ANY medication?!?" The answer no. "He hasn't used his g-tube in several MONTHS?!?" The answer no. "Does he still have any home health care?" The answer no. "Does he still have his central line?" The answer no. "Does he eat entirely my mouth?" The answer....Y-E-S! (and then some...) "Is he active?" The answer....you don't want to know. There were days/months/years in which our answers to those questions would have been quite different. I sat staring at Caed (beyond bored at this point) and wondered if he really knows how SPECIAL he is. The God of this Universe has held him in the palm of His Hands. In His own perfect timing, He has brought Caed to this very day. Todd and I will never understand why He chose to have mercy on our son 4 yrs ago....and all the days that have since passed. BUT...without a doubt, we recognize it! We SEE His Handprints all over his little body! And they are beautiful.
Take a deep breath, close your eyes.........for tomorrow Caed will have a BIG surprise to show the world!
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