I wanted to share with you a story about a special little boy that we have come to love. His name is Devin and he was born with Short Bowel Syndrome. He is Caed's age and has just recently received a life saving bowel transplant. He and his family currently live in New York, and I have surely come to love his Mommy. She has listened to me and given much needed advice. Most of the short gut kids that I am aware of are babies or toddlers. I was SO happy to hear about Devin!
Nightline (10:30 pm -ABC) has been following Devin's story, and has put together a piece that (should) air TONIGHT!! (Apr. 17th). Check your local listings.
April is National Donor Awareness Month and it is only fitting that Devin's story is told now. Please set your DVR's or make a point to watch it!! We love this family and are so glad the media has picked up their wonderful story.
Friday, April 17, 2009
Thursday, April 16, 2009
Home again
We made it home just fine today. The Lord sure had His hand in allowing certain circumstances to fall into place.....we had zero problems. Thank you again Kendall for ALL you do for us when we travel. You're like our own personal travel agent! We love you so much!!! Thank you also for pulling some strings and allowing Caed the opportunity to get in the cockpit. I know he was excited and a little nervous at the same time.
Who would ever think this same little ball player went through what he did the past 2 days? He had a game tonight, and we were able to make it back in perfect time. He "pitched" again this game and made some really great plays. Even caught a hard line drive right in the chest! They won their game again (ha!....actually they don't keep score, but Caed and the rest of his little team don't know that....in their minds, they are UNDEFEATED!!!)
Caed's pitching stance!!! It was so funny. I kept thinking if he got down any further he would tip over. However, at least he's ready!!!! Maybe that's how he was able to catch that hard line drive.
Safe!
Wednesday, April 15, 2009
7 hours and counting.......
I went into today thinking it was going to be "quick and easy" (at least 4 hours). The idea of the small bowel series is to inject the barium into his stomach via g-tube, and then take x-rays every 1/2 hour to monitor how it flows through. At one point (back when Caed was at his worst), it would sometimes take almost 24 hrs! But, the last one we had (Oct), it only took 4. So, I just naturally thought it would be the same again today. Boy was I wrong. 7 hours......!!! That is a long time for anyone, but especially a 5 yr. old. He was actually their 1st patient of the day.....and then became almost their last. Caed was supposed to be NPO for this, so...he went almost 20 hrs. without eating. Finally, even though the test was not over, they let us go up to the cafeteria around 3:00. Todd and I of course did not eat either because we didn't want him seeing us, so we were quite famished as well. It wasn't just the long day in radiology that made it such a hard day. It was also very emotional. There were several dilated loops (which is common for sbs), and then at one point the radiologist began talking about a certain area of Caed's bowel that looked a little constricted. It was very small and thin. My heart just sunk. Oh Lord....please no!!!! I can't continue going through this! For several hours after that.....I just felt sick to my stomach. I was on a high yesterday after hearing all the good reports from the drs, and now this. Why was it taking SO long to go through this time? What was happening? Is that little section of bowel a potential problem?
We still don't know anything. We will fly back home in the morning, and then be in contact with the drs. as soon as the biopsies and other lab results come back. I am exhausted physically and emotionally. This trip has literally worn me out!
Thank you for continuing to pray for Caed!!!
7 hours!!!!! Poor little guy!
Caed's bowel
We still don't know anything. We will fly back home in the morning, and then be in contact with the drs. as soon as the biopsies and other lab results come back. I am exhausted physically and emotionally. This trip has literally worn me out!
Thank you for continuing to pray for Caed!!!
7 hours!!!!! Poor little guy!
Caed's bowel
Tuesday, April 14, 2009
Bitter...sweet
I have said before that sometimes the unthinkable doesn't happen to someone else....it happens to you! Today we were reminded of that again. We received devastating news from back home that one of our former youth passed away over night in her home. (her family is apart of our church and her mom one of the church secretaries) I honestly can't even find the words to say. We are all in shock and completely devastated. And yet...even now....even trying to sort through the pain and confusion, there is hope! Karley was a believer, and we know is now in the presence of God. I tried my best to explain to Caed why Mommy and Daddy were sad (and preoccupied), and his comment was...."But it's ok, cause she's (pointing upward) in heaven with Pop!" Out of the mouths of babes. Yes! Caed is right! And yet it doesn't take away the utter devastation that a mom, dad, sister and countless friends are engulfed in. Please pray for this precious family, the Sonntag's. Lord.....we need YOU!
Caed's hardest day is over. He was a trooper. It began in the treatment center with lots of blood draws and IV fluids. He has not had an IV without a central line in a very long time. So....this time was a little difficult, but we had a good "talk" and he was incredibly brave. The nurse was extremely complimentary of him, and said he did better than some of her adult patients.
We had a great clinic visit with his drs. They were so amazed at his progress!! Said his labs looked perfect, weight was good, and honestly couldn't be happier with his present condition. We will need to really push his ORS (drink) now more than ever with summer approaching and the amount of time he is out playing. The risk of getting dehydrated will be high. Dr. M also said he could begin drinking some G2 (low sugar Gatorade). Caed will love that. He loves his "special drink" but to give him another choice every now and then will be wonderful. (not to mention help him feel a little more normal) And praise God.....they DID lower his tube feed time by 2 hrs. So, now he will only be hooked up 16 hrs./day! He will continue lab draws/weight checks monthly, and if things continue to look good, we can lower it again in a couple of months. And just continue this pattern. They are also very pleased with the number of stools......3-4. As I was going through his "poop journal" calculating the last 4 months....it was so evident.....he is improving. And to top it all off, they don't want to see him again until OCTOBER!! Yea! Lord willing, this will be the case. (perfect time to come back to the pumpkin patch!)
Next was the scope. It was a little more difficult (physically and emotionally), but we got through it in one piece. Our GI dr. was also very pleased. He said his anatomy is still very "abnormal" (hard getting the scope through his stomach into the duodenum), but it definitely went faster this time than the past several scopes. He took lots of biopsies, but won't know anything for 2-3 more days. The first section of his small bowel continues to be dilated, and I'm sure we will see that more with tomorrow's small bowel series barium test. He doesn't think he has any bacterial overgrowth which is VERY common in short gut patients. Another praise! The lining of intestines "looked beautiful.....crystal clear!" Again, wonderful news! Caed did have trouble again coming out of anesthesia, but I think overall.....it was much quicker than all the previous times. They added some Fentanyl this time to the anesthesia, so possibly that helped out some.
Tomorrow will be the bone scan and the small bowel series. The hard part will be leaving on Thurs. without knowing in detail the results from all these tests (from our drs. viewpoint), but we stay in contact with them weekly, so I'm sure we will hear more soon.
Thank you again for your prayers for Caed today. Overall, he did wonderful!
Spending several hours in the treatment room for labs and IV
Again waiting several hours for the colonoscopy and EGD.
Caed's hardest day is over. He was a trooper. It began in the treatment center with lots of blood draws and IV fluids. He has not had an IV without a central line in a very long time. So....this time was a little difficult, but we had a good "talk" and he was incredibly brave. The nurse was extremely complimentary of him, and said he did better than some of her adult patients.
We had a great clinic visit with his drs. They were so amazed at his progress!! Said his labs looked perfect, weight was good, and honestly couldn't be happier with his present condition. We will need to really push his ORS (drink) now more than ever with summer approaching and the amount of time he is out playing. The risk of getting dehydrated will be high. Dr. M also said he could begin drinking some G2 (low sugar Gatorade). Caed will love that. He loves his "special drink" but to give him another choice every now and then will be wonderful. (not to mention help him feel a little more normal) And praise God.....they DID lower his tube feed time by 2 hrs. So, now he will only be hooked up 16 hrs./day! He will continue lab draws/weight checks monthly, and if things continue to look good, we can lower it again in a couple of months. And just continue this pattern. They are also very pleased with the number of stools......3-4. As I was going through his "poop journal" calculating the last 4 months....it was so evident.....he is improving. And to top it all off, they don't want to see him again until OCTOBER!! Yea! Lord willing, this will be the case. (perfect time to come back to the pumpkin patch!)
Next was the scope. It was a little more difficult (physically and emotionally), but we got through it in one piece. Our GI dr. was also very pleased. He said his anatomy is still very "abnormal" (hard getting the scope through his stomach into the duodenum), but it definitely went faster this time than the past several scopes. He took lots of biopsies, but won't know anything for 2-3 more days. The first section of his small bowel continues to be dilated, and I'm sure we will see that more with tomorrow's small bowel series barium test. He doesn't think he has any bacterial overgrowth which is VERY common in short gut patients. Another praise! The lining of intestines "looked beautiful.....crystal clear!" Again, wonderful news! Caed did have trouble again coming out of anesthesia, but I think overall.....it was much quicker than all the previous times. They added some Fentanyl this time to the anesthesia, so possibly that helped out some.
Tomorrow will be the bone scan and the small bowel series. The hard part will be leaving on Thurs. without knowing in detail the results from all these tests (from our drs. viewpoint), but we stay in contact with them weekly, so I'm sure we will hear more soon.
Thank you again for your prayers for Caed today. Overall, he did wonderful!
Spending several hours in the treatment room for labs and IV
Again waiting several hours for the colonoscopy and EGD.
Monday, April 13, 2009
Stranded
....in Omaha and St. Louis.
We have had quite a day...to say the least! Oh...goodness, where do I begin? First of all, I want to say a HUGE thank you to Wayne and Kendall our dear SW friends. They have gone above and beyond for many, many months and today was no exception. What would we have done without them!
Our day began before the crack of dawn at 4am. Todd, Caed, and I drug ourselves out of bed......and if we had only known what this day was going to look like....we probably would have just crawled right back in.
We were graciously given 3 free passes for our trip to Omaha which is such a God-send! However, with that....means you have to fly stand-by. We knew that and were perfectly ok. It's a FREE flight. I don't care how long or how many flights we have to take....just as long as we get there. We took off at 6:30am from Dallas and got to St. Louis around 8:45. As we landed, the flight attendant came over the speaker and said, "we need the Hollingsworth family to get off the plane when we reach the gate" (probably wasn't exactly in those words.....much nicer). They said the next flight on to OMA was looking full, so we needed to wait until all the passengers boarded and then see if there were any extra seats available. There were only 2! So...in a matter of about 20 seconds.....we had to make some quick decisions. I grabbed Caed....all our carry on bags, and threw Todd my cell phone. (another important detail to this fun day!.....Todd realized as we were going through security he had forgotten his phone) I knew he would need one more than Caed and I. We were boarding a plane straight for Omaha.....once we got here, we would be fine. So I thought.......
Kendall would be in touch with Todd the rest of the day trying to get him to OMA as well. As Caed and I boarded back on the plane it was clear that this was a FULL flight and that we were the last 2 passengers. Now...put 2 and 2 together and you'll know just why I began to worry.
The flight attendant told me we would have to sit separately. I guess it was from the way things were already going. I got a little teary-eyed thinking my little 5 yr. old (with a medical condition) would have to sit with strangers and I wouldn't be able to see or help him. So, I knelt down and tried to explain to my little wide-eyed boy that these nice gentlemen would be his friends and take good care of him during the flight. (with tears in my eyes of course) One of them quickly stood up and very politely offered to give me his seat next to Caed. I definitely wanted to cry then.
Caed and I made it to Omaha, but the trouble just continued. You see...in St. Louis when we had seconds to decide who was going where with who.....I didn't even realize Todd had the credit and debit cards. So, when I went to get our car rental, I was told NO. Even though I had more than enough cash.....they still needed "the evil card!" So, there we were. No cell phone.....no credit or debit card.....just me and a 5 yr. old (exhausted) little boy who didn't understand where Daddy was and why Mommy was crying (again). The only thing I had was my laptop. I immediately got on Facebook b/c I knew that was best chance of contacting someone...anyone who might help me think! It worked. I was flooded with comments. Even found a friend who called my mom. Finally...after a few more hours and several times being paged over the airport loudspeaker, I just decided to go get a taxi and get Caed and I to the hospital (at least). We still didn't know about Todd or our luggage.
Immediately before I went to find a taxi, I received a fb message from my good friend Bethany in Edna. It was a simple but very heart felt prayer.....asking God to provide....and to protect us. I cried again knowing it would all be ok. As Caed and I made our way to the empty taxis outside, my heart began beating out of my chest. Without going into too much detail, let's just say....it was NOT a very safe situation I was placing myself or my child in. I literally prayed OUT LOUD as we got into the backseat. "Lord please protect us....in JESUS name!" It was the most surreal 15 minute drive I've ever experienced. I knew the way precisely to the Lied....and with every correct turn the driver made I thanked God. Then, as I handed him my money and quickly grabbed Caed and ran to the door....the tears began flowing once more. Tears of total fear......and then tears that I was finally HOME....safe! The Lied was our home for 3 months in the fall. Everything about it is familiar, the sights and smells....and I love them!!
Our dilemma...our stressful day was still not over. We needed to get a room, our luggage, and our Daddy! They did not have one available, so we went to our regular waiting spot (the transplant clinic lobby). I got back online (and was blessed beyond measure) by IM-ing some of my best friends (who were all together). Oh...I was literally laughing out loud. Lesli, Holly, Marnie....I needed you right at that moment. Thank you! Caed of course went straight to the playroom and found some good friends just his age. They played and played. Finally, 2 hrs. later they informed me our room was ready. THANK YOU Lied for taking cash!!!!! Wish more places did the same.
So, here I sit. My only source of communication, this crazy ole' computer....and facebook of all things. I was finally able to talk with Todd a few moments ago. He went ahead and bought a ticket on the next flight to Omaha (to ensure he gets here and doesn't have to sleep in the terminal....ha!) He should be arriving around 8pm. Now, we just pray our luggage is safe and sound.
I am exhausted and have the worst headache. This has definitely been one of those days I will not forget. I remember at one point while Caed and I were in the airport and I was feeling utterly helpless. I had NO clue what to do. I was quite honestly angry and began asking God,"why? why? why?.....why are you allowing this? what is your purpose? enough is enough." I knew the answer even as the thoughts crossed my mind. CHARACTER! How are you supposed to build character when everything is always easy in your life? When everything always goes just as planned. When there are no disappointments or setbacks? I believe He uses them. Not that He enjoys seeing us suffer or struggle or even cry. He doesn't. But what potentially can come from those moments I believe gives Him incredible joy. To see His children come upon a mountain (no matter how big or small it seems)....and tackle it....to see the "good" in it......to persevere....to "rise above".....and to trust that it is actually HIM who is carrying them....US!...over it anyway.
Thank you all SO MUCH for praying for us today. I absolutely felt it! How awesome is our God that He uses the prayers of others (no matter how far we are) to help us get through tough days.
Caed has a busy 2 days ahead of him. Tonight he will start a liquid diet (bowel prep for the scope). I will have to shut off his feeds at 5 am, then at 8 we head down to the treatment center for IV fluids and lab draws (lots of sticks....ouch). Then, our clinic appt. is at 10 where we talk to his drs. about how he's been doing and the plan for the future. (Please pray for more time off feeds!) Then, at 1:00 he'll have a scope (colonoscopy and upper endoscopy....going in through both ends). I know this is so necessary, but it's one of the tests that I dislike the most. Caed will be under complete anesthesia, which is so hard for me to watch. (going limp in my arms) He also comes out of it awful!!! Crying, yelling, growling, you name it....ha! Hopefully it won't be too bad and we can immediately come back up to the room and let him sleep it off. Then..... Wed. will just be a bone scan and small bowel series. Should be done by noon if the barium flows well. If he feels ok and the weather is decent, we might try to join one of our fellow short gut friends at the zoo. We will attempt to get back home (in one piece) on Thursday. Again flying stand-by. Please also pray for this. Caed has a t-ball game that night. Not a big deal if he misses.....but I sure hope we can be home for it.
Todd just called the room and he is finally ON THE PLANE!!!!!! Hallelujah! Should be here in another hour. Hopefully all the "drama" is over....................................
We have had quite a day...to say the least! Oh...goodness, where do I begin? First of all, I want to say a HUGE thank you to Wayne and Kendall our dear SW friends. They have gone above and beyond for many, many months and today was no exception. What would we have done without them!
Our day began before the crack of dawn at 4am. Todd, Caed, and I drug ourselves out of bed......and if we had only known what this day was going to look like....we probably would have just crawled right back in.
We were graciously given 3 free passes for our trip to Omaha which is such a God-send! However, with that....means you have to fly stand-by. We knew that and were perfectly ok. It's a FREE flight. I don't care how long or how many flights we have to take....just as long as we get there. We took off at 6:30am from Dallas and got to St. Louis around 8:45. As we landed, the flight attendant came over the speaker and said, "we need the Hollingsworth family to get off the plane when we reach the gate" (probably wasn't exactly in those words.....much nicer). They said the next flight on to OMA was looking full, so we needed to wait until all the passengers boarded and then see if there were any extra seats available. There were only 2! So...in a matter of about 20 seconds.....we had to make some quick decisions. I grabbed Caed....all our carry on bags, and threw Todd my cell phone. (another important detail to this fun day!.....Todd realized as we were going through security he had forgotten his phone) I knew he would need one more than Caed and I. We were boarding a plane straight for Omaha.....once we got here, we would be fine. So I thought.......
Kendall would be in touch with Todd the rest of the day trying to get him to OMA as well. As Caed and I boarded back on the plane it was clear that this was a FULL flight and that we were the last 2 passengers. Now...put 2 and 2 together and you'll know just why I began to worry.
The flight attendant told me we would have to sit separately. I guess it was from the way things were already going. I got a little teary-eyed thinking my little 5 yr. old (with a medical condition) would have to sit with strangers and I wouldn't be able to see or help him. So, I knelt down and tried to explain to my little wide-eyed boy that these nice gentlemen would be his friends and take good care of him during the flight. (with tears in my eyes of course) One of them quickly stood up and very politely offered to give me his seat next to Caed. I definitely wanted to cry then.
Caed and I made it to Omaha, but the trouble just continued. You see...in St. Louis when we had seconds to decide who was going where with who.....I didn't even realize Todd had the credit and debit cards. So, when I went to get our car rental, I was told NO. Even though I had more than enough cash.....they still needed "the evil card!" So, there we were. No cell phone.....no credit or debit card.....just me and a 5 yr. old (exhausted) little boy who didn't understand where Daddy was and why Mommy was crying (again). The only thing I had was my laptop. I immediately got on Facebook b/c I knew that was best chance of contacting someone...anyone who might help me think! It worked. I was flooded with comments. Even found a friend who called my mom. Finally...after a few more hours and several times being paged over the airport loudspeaker, I just decided to go get a taxi and get Caed and I to the hospital (at least). We still didn't know about Todd or our luggage.
Immediately before I went to find a taxi, I received a fb message from my good friend Bethany in Edna. It was a simple but very heart felt prayer.....asking God to provide....and to protect us. I cried again knowing it would all be ok. As Caed and I made our way to the empty taxis outside, my heart began beating out of my chest. Without going into too much detail, let's just say....it was NOT a very safe situation I was placing myself or my child in. I literally prayed OUT LOUD as we got into the backseat. "Lord please protect us....in JESUS name!" It was the most surreal 15 minute drive I've ever experienced. I knew the way precisely to the Lied....and with every correct turn the driver made I thanked God. Then, as I handed him my money and quickly grabbed Caed and ran to the door....the tears began flowing once more. Tears of total fear......and then tears that I was finally HOME....safe! The Lied was our home for 3 months in the fall. Everything about it is familiar, the sights and smells....and I love them!!
Our dilemma...our stressful day was still not over. We needed to get a room, our luggage, and our Daddy! They did not have one available, so we went to our regular waiting spot (the transplant clinic lobby). I got back online (and was blessed beyond measure) by IM-ing some of my best friends (who were all together). Oh...I was literally laughing out loud. Lesli, Holly, Marnie....I needed you right at that moment. Thank you! Caed of course went straight to the playroom and found some good friends just his age. They played and played. Finally, 2 hrs. later they informed me our room was ready. THANK YOU Lied for taking cash!!!!! Wish more places did the same.
So, here I sit. My only source of communication, this crazy ole' computer....and facebook of all things. I was finally able to talk with Todd a few moments ago. He went ahead and bought a ticket on the next flight to Omaha (to ensure he gets here and doesn't have to sleep in the terminal....ha!) He should be arriving around 8pm. Now, we just pray our luggage is safe and sound.
I am exhausted and have the worst headache. This has definitely been one of those days I will not forget. I remember at one point while Caed and I were in the airport and I was feeling utterly helpless. I had NO clue what to do. I was quite honestly angry and began asking God,"why? why? why?.....why are you allowing this? what is your purpose? enough is enough." I knew the answer even as the thoughts crossed my mind. CHARACTER! How are you supposed to build character when everything is always easy in your life? When everything always goes just as planned. When there are no disappointments or setbacks? I believe He uses them. Not that He enjoys seeing us suffer or struggle or even cry. He doesn't. But what potentially can come from those moments I believe gives Him incredible joy. To see His children come upon a mountain (no matter how big or small it seems)....and tackle it....to see the "good" in it......to persevere....to "rise above".....and to trust that it is actually HIM who is carrying them....US!...over it anyway.
Thank you all SO MUCH for praying for us today. I absolutely felt it! How awesome is our God that He uses the prayers of others (no matter how far we are) to help us get through tough days.
Caed has a busy 2 days ahead of him. Tonight he will start a liquid diet (bowel prep for the scope). I will have to shut off his feeds at 5 am, then at 8 we head down to the treatment center for IV fluids and lab draws (lots of sticks....ouch). Then, our clinic appt. is at 10 where we talk to his drs. about how he's been doing and the plan for the future. (Please pray for more time off feeds!) Then, at 1:00 he'll have a scope (colonoscopy and upper endoscopy....going in through both ends). I know this is so necessary, but it's one of the tests that I dislike the most. Caed will be under complete anesthesia, which is so hard for me to watch. (going limp in my arms) He also comes out of it awful!!! Crying, yelling, growling, you name it....ha! Hopefully it won't be too bad and we can immediately come back up to the room and let him sleep it off. Then..... Wed. will just be a bone scan and small bowel series. Should be done by noon if the barium flows well. If he feels ok and the weather is decent, we might try to join one of our fellow short gut friends at the zoo. We will attempt to get back home (in one piece) on Thursday. Again flying stand-by. Please also pray for this. Caed has a t-ball game that night. Not a big deal if he misses.....but I sure hope we can be home for it.
Todd just called the room and he is finally ON THE PLANE!!!!!! Hallelujah! Should be here in another hour. Hopefully all the "drama" is over....................................
Saturday, April 11, 2009
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