Just wanted to let y'all know that there are a lot of things I would like to share, especially for you other SBS parents and families. I hope to get these things posted soon. In the meantime, here's a list of things I'll be sharing. Check back soon if you have any interest in the topics mentioned. Hopefully, it will help you in some way.
1. Best diaper cream "concoction" for SBS diaper rash
2. How we keep Chase's line from infection
3. A day in the life of short gut
4. SBS-friendly clothing
5. What to pack for a hospital stay
6. Our thoughts on feedings and how to avoid oral aversions
7. Other hospitals that will use Omegaven
8. Future fundraisers for Omegaven study (Aunt Missy, we LOVE you!!!)
Monday, June 29, 2009
Longing for home but thankful for all the blessings!
First off, Chase just has a viral bug that gave him a fever and vomitting. No line infection!!!!!!!!!! To those of you who know about central lines, this is a huge relief. We get to go home tomorrow!!!
BIRTHDAY PARTY STILL ON!!!! YEA!!!!!!!!!!!!!!
Secondly, I want to share with y'all the mental and emotional turmoil I went through on our way to the hospital. Pretty bizarre. Of course, my first reaction was frustration and anger; "I can't believe we are going back to the hospital AGAIN." And of course questions came up like: "what am I doing wrong for him to keep getting infections. Especially since he is getting ethanol locks (more on those later)." "Why is this happening now?" "He's going to spend his first birthday in the hospital." "I can't believe I'm being pulled away from my other son, AGAIN!" You know, thoughts like that. I was royally ticked (for those of you who know me, know it's not a pretty sight)!
So this lasted for about 30 minutes. So I started praying first for strength to get us (me) through this. It didn't take long for me to get the message. And this is where it might seem a little strange for some of you. I started to remember that each time we go to the hospital (which fortunately has been very little but I tend to forget that blessing when I'm headed to the hospital) something wonderful comes out of it. Hear me out:
The first time was here in Ft. Myers in April. It was just a week stay. Not too bad. But out of it came that amazing event that I shared with you all about Chase's first surgeon and how he stated that Chase's story had "renewed his Faith." Maybe not a big deal to some of you, but planting a seed for the Lord in one person...................BIG DEAL TO ME!!!!! Not only that, but we got the word out about Omegaven in this hospital.
The second time we got stuck in Boston just a few weeks ago, actually. The blessings from this?: 1. We got to meet the Brogans (the family who's blog introduced us to Omegaven. www.eleanorbrogan.blogspot.com). (Thank you Brogans!!!) 2. Got to meet another family who were just in the first stages of the whole short-gut experience and gave them some words of encouragement 3. Got to see Chase without a central line...............B-E-A-Utiful!!!!!!!!!!!!!!!!!!!!!!!! 4. Got to see our Boston team (always a blessing. We love you guys!) 5. and last but not least, we found out that Chase will, undoubtedly, be off of TPN and Omegaven all together and his central line will be removed VERY SOON!!!!
So instead of being angry, I knew that God had something good that was going to come out of this hospital stay. I became hopeful, anticipatory, and daresay....excited. I often get excited when I know God's got something in store for us. A wise woman (Carmen Corbitt, I'm talking about you) once said, "God must have something wonderful in store for us because the devil sure is trying to stop it from happening." So, so, SO true. When something good is about to happen, the devil tries to throw things in the way to prevent it, or keep us from realizing it. But I wasn't about to let him have that.
So we got here and it didn't take long for the little blessings to start "pouring down." Here they are:
1. Had numerous nurses come to our ER room to "see the miracle baby."
2. Had one doctor call him nothing short of a miracle, jump to one knee, raise both hands up high, fingers stretched, and called him a "SUPERSTAR!!!!!" Mary Katherine Gallagher fans can appreciate this one. Nanny Beef, you were the first person I thought of. I immediately picked up the phone to tell you about our "superstar doctor." (PS~luv you!)
3.And last but not least!!!!
Dr. Mon, Chase's first surgeon, stopped in for a visit. It was nice to give him a big hug. But that's not the end of it. Dr. Mon told me that they were actually transporting a TPN/lipid dependent patient to Boston for the Omegaven, TODAY!!!!! He had told the family about Chase and they collectively decided to get to Boston ASAP!!!!!!!!!
WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!! So our efforts to spread the news about Omegaven HAS reached someone. Can't really express (or type) how exciting that is for us!!!! We know God is using this Omegaven, just a simple fish oil currently made from anchovies, for good things and we want everyone to know about it.
So yeah, it's tiring to be at the hospital. Sleepless nights, bad food, and noisy nurses. But look what else has come out of this.
God always has something good for us...........even in the darkest moments. Don't forget to look for them! :)~
BIRTHDAY PARTY STILL ON!!!! YEA!!!!!!!!!!!!!!
Secondly, I want to share with y'all the mental and emotional turmoil I went through on our way to the hospital. Pretty bizarre. Of course, my first reaction was frustration and anger; "I can't believe we are going back to the hospital AGAIN." And of course questions came up like: "what am I doing wrong for him to keep getting infections. Especially since he is getting ethanol locks (more on those later)." "Why is this happening now?" "He's going to spend his first birthday in the hospital." "I can't believe I'm being pulled away from my other son, AGAIN!" You know, thoughts like that. I was royally ticked (for those of you who know me, know it's not a pretty sight)!
So this lasted for about 30 minutes. So I started praying first for strength to get us (me) through this. It didn't take long for me to get the message. And this is where it might seem a little strange for some of you. I started to remember that each time we go to the hospital (which fortunately has been very little but I tend to forget that blessing when I'm headed to the hospital) something wonderful comes out of it. Hear me out:
The first time was here in Ft. Myers in April. It was just a week stay. Not too bad. But out of it came that amazing event that I shared with you all about Chase's first surgeon and how he stated that Chase's story had "renewed his Faith." Maybe not a big deal to some of you, but planting a seed for the Lord in one person...................BIG DEAL TO ME!!!!! Not only that, but we got the word out about Omegaven in this hospital.
The second time we got stuck in Boston just a few weeks ago, actually. The blessings from this?: 1. We got to meet the Brogans (the family who's blog introduced us to Omegaven. www.eleanorbrogan.blogspot.com). (Thank you Brogans!!!) 2. Got to meet another family who were just in the first stages of the whole short-gut experience and gave them some words of encouragement 3. Got to see Chase without a central line...............B-E-A-Utiful!!!!!!!!!!!!!!!!!!!!!!!! 4. Got to see our Boston team (always a blessing. We love you guys!) 5. and last but not least, we found out that Chase will, undoubtedly, be off of TPN and Omegaven all together and his central line will be removed VERY SOON!!!!
So instead of being angry, I knew that God had something good that was going to come out of this hospital stay. I became hopeful, anticipatory, and daresay....excited. I often get excited when I know God's got something in store for us. A wise woman (Carmen Corbitt, I'm talking about you) once said, "God must have something wonderful in store for us because the devil sure is trying to stop it from happening." So, so, SO true. When something good is about to happen, the devil tries to throw things in the way to prevent it, or keep us from realizing it. But I wasn't about to let him have that.
So we got here and it didn't take long for the little blessings to start "pouring down." Here they are:
1. Had numerous nurses come to our ER room to "see the miracle baby."
2. Had one doctor call him nothing short of a miracle, jump to one knee, raise both hands up high, fingers stretched, and called him a "SUPERSTAR!!!!!" Mary Katherine Gallagher fans can appreciate this one. Nanny Beef, you were the first person I thought of. I immediately picked up the phone to tell you about our "superstar doctor." (PS~luv you!)
3.And last but not least!!!!
Dr. Mon, Chase's first surgeon, stopped in for a visit. It was nice to give him a big hug. But that's not the end of it. Dr. Mon told me that they were actually transporting a TPN/lipid dependent patient to Boston for the Omegaven, TODAY!!!!! He had told the family about Chase and they collectively decided to get to Boston ASAP!!!!!!!!!
WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!! So our efforts to spread the news about Omegaven HAS reached someone. Can't really express (or type) how exciting that is for us!!!! We know God is using this Omegaven, just a simple fish oil currently made from anchovies, for good things and we want everyone to know about it.
So yeah, it's tiring to be at the hospital. Sleepless nights, bad food, and noisy nurses. But look what else has come out of this.
God always has something good for us...........even in the darkest moments. Don't forget to look for them! :)~
Saturday, June 27, 2009
oh no!!!!!!!
I can't believe this, but we are back in the hospital. Not sure what it is yet. We're hoping it's not an infection. We'd rather he'd have a bug. We really don't want him to spend his birthday in the hospital. Please, please pray for our little guy.
Thursday, June 18, 2009
Colton's 2nd Birthday
I have made it a tradition to take a picture of our babies the night before their birthday. So this is Colton sleeping with Daddy his last night as a one-year old :(
Colton's new birthday wheels!!!
Too cute not to post!
Luvin' on his cousin, Skylar. Just call him McLovin'!
He just scraped the icing off the cake to eat!
A Veggietales Birthday
And this is what our little boy looks like after he turns 2!
My little boy is growing up!!!Just some pics for your enjoyment!! :)
Glad to be home!
Cruisin' the halls of Children's Boston 10 East!
Chase's EKGChase had his last dose of antibiotics on Tuesday and his stools are already starting to get back to normal. We start the every-other-day schedule of TPN next week!!!! Can't wait!!!
And he's already gained all the weight he lost at the hospital back!!!
Monday, June 8, 2009
We're coming home
It has been decided that the best route to go right now is to put another line back in. The antibiotics that Chase has been taking have been giving him some major diarrhea. With that comes loss of fluids and the possibility of dehydration. The alternative would be to stay here while they run the antibiotics, wait for his gut to "go back to normal", then see how he responds to being off of the TPN and fluids. Now the last time he took antibiotics, it took 2 weeks for his gut to get back to normal. We all decided that it would be best to get him home, get through the antibiotics, push feeds, and aggressively ween him off of the TPN at home.
As much as we love Children's Boston, home is still the best. He has become afraid of the nurses because for a week straight he was getting an IV put in EVERY DAY!!!! Sometimes more than once. We finally got a PICC (semi-permanent IV), but the fear had already set in. And as Dr. Puder says: Parents know what's best for their child. I think I could get him off of this stuff and his line out better than anyone else. I know my son and his needs and what's best for him.......I think :)
The good news is, we are going to be off and free VERY SOON! Our (me, Randall, and Dr. Puder) goal is to get his line taken out during his July clinic visit. So just a little over a month. So he gets the new line in tomorrow and we'll be heading home Wednesday. Colton, mommy's coming home!!!!!!!!!!!!!!!
Prayer requests: 1. no line infections with the new line 2. quick recovery from the antibiotics 3. Chase gains weight quickly 4. Chase successfully weens himself off the the TPN and fluids and the line gets removed in July!!!!
Thanks for everyones support. We are almost there!!!!!!!!!! We were hoping he'd be line free for his birthday and he probably would have if it hadn't been for the infection. But our appointment is July 23rd. Only 20 days after his birthday. We'll take it!!!!!
As much as we love Children's Boston, home is still the best. He has become afraid of the nurses because for a week straight he was getting an IV put in EVERY DAY!!!! Sometimes more than once. We finally got a PICC (semi-permanent IV), but the fear had already set in. And as Dr. Puder says: Parents know what's best for their child. I think I could get him off of this stuff and his line out better than anyone else. I know my son and his needs and what's best for him.......I think :)
The good news is, we are going to be off and free VERY SOON! Our (me, Randall, and Dr. Puder) goal is to get his line taken out during his July clinic visit. So just a little over a month. So he gets the new line in tomorrow and we'll be heading home Wednesday. Colton, mommy's coming home!!!!!!!!!!!!!!!
Prayer requests: 1. no line infections with the new line 2. quick recovery from the antibiotics 3. Chase gains weight quickly 4. Chase successfully weens himself off the the TPN and fluids and the line gets removed in July!!!!
Thanks for everyones support. We are almost there!!!!!!!!!! We were hoping he'd be line free for his birthday and he probably would have if it hadn't been for the infection. But our appointment is July 23rd. Only 20 days after his birthday. We'll take it!!!!!
Friday, June 5, 2009
Oh man! Sit. This is a long one!
Well, what was suppose to be a short visit to clinic turned into an admit into Children's Hospital Boston. That's right. We are stuck up here in Boston. Not that this is a bad thing because if you gotta be stuck in a hospital, this is the place to be.
Still.
We got here Wednesday and Wed. night Chase was acting kinda funny, like he was sick. So at midnight we walk our little boy over to the ER at Children's. Sure enough, 100.2 temp. So after some Motrin, blood cultures, and a dose of antibiotics, they sent us back to our hotel.
Thursday we went to clinic. It was really a great clinic visit, too. But because of the infection (that's what the temp. was telling us at least) we couldn't really enjoy it. They told us that Chase would be taken off EVERYTHING for three nights a week. THREE WHOLE NIGHTS!!!!!!!!! You can imagine the plans that were going through my head.
Friday morning, 1:45 am. The ER calls, the blood cultures came back positive and we have to come back in immediately. Line infection. Seriously?!?!?!?!?
So we go, tons of docs and nurses come in and ask us all the same questions. At 5:00am they admit us into a hospital room.
So here we are a week later.
Why so long??
This is the good part............
It turns out Chase had enterococcus, a type of bacterial infection, and a yeast infection. Result? The central line (permanent IV) had to come out. So Sunday evening about 11:30 pm he goes down to the OR to get his line out.
Why is this the good part you ask????
Because, after speaking with Dr. Puder, we might be able to leave the line out!
Let me repeat.....
LEAVE THE LINE OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
What does this mean????
It means: no more line infections, no more TPN, no more Omegaven (white gold us SBS moms like to call it.) Chase would be free!!!!!!!!!!!!!!
FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
No more hook-ups to his IV at night. No more tube hanging out from under his right arm. One less hole in his beautiful body, AND
BATHS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! If the line stays out, we can give Chase a real bath. And we can let him go swimming with his brother in the kiddie pool, and we can squirt him with a waterhose, and we can take him to the beach!!!!!!!!!!!!!!!!!!!!!
SO EXCITING!!!
We're not out of the water just yet. Chase has to prove that he can maintain and gain weight without the help of TPN and Omegaven and his electrolytes have to stay stable. So far, he is doing GREAT!!! We had a bout of "the squirts" which did cause him to lose some weight. But this morning, the squirts were gone, and his weight went up!!!!!!!!!!!!!!!!!!!!!!!!
The answer: Prayer.
And we are asking for as much prayer as possible right now!!! This is a GINORMOUS step for Chase, and short-gut in general. We really want this for him. This is just one step closer to a normal (oops, sorry Brogans, typical) life for Chase.....and what more could parents ask for.
It's going to be another two weeks before we are done running antibiotics to get rid of the infections which means two more weeks up here. But if the end result is no line, we'll take it. But it also means that much more time away from my Colton. The little ray of sunshine that always brightens the worst of days. I'm not asking for prayer for strength or comfort, just peace while being away from my other son. It's TORTURE.
So get ready for some celebrating, because.............
WE'RE COMING HOME WITHOUT A LINE, THANK YOU LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
GO, CHASE, GO!!!!!!!!!!!!!!!!!!!!!!!!!!
"I CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS ME." Phillipians 4:13
Still.
We got here Wednesday and Wed. night Chase was acting kinda funny, like he was sick. So at midnight we walk our little boy over to the ER at Children's. Sure enough, 100.2 temp. So after some Motrin, blood cultures, and a dose of antibiotics, they sent us back to our hotel.
Thursday we went to clinic. It was really a great clinic visit, too. But because of the infection (that's what the temp. was telling us at least) we couldn't really enjoy it. They told us that Chase would be taken off EVERYTHING for three nights a week. THREE WHOLE NIGHTS!!!!!!!!! You can imagine the plans that were going through my head.
Friday morning, 1:45 am. The ER calls, the blood cultures came back positive and we have to come back in immediately. Line infection. Seriously?!?!?!?!?
So we go, tons of docs and nurses come in and ask us all the same questions. At 5:00am they admit us into a hospital room.
So here we are a week later.
Why so long??
This is the good part............
It turns out Chase had enterococcus, a type of bacterial infection, and a yeast infection. Result? The central line (permanent IV) had to come out. So Sunday evening about 11:30 pm he goes down to the OR to get his line out.
Why is this the good part you ask????
Because, after speaking with Dr. Puder, we might be able to leave the line out!
Let me repeat.....
LEAVE THE LINE OUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
What does this mean????
It means: no more line infections, no more TPN, no more Omegaven (white gold us SBS moms like to call it.) Chase would be free!!!!!!!!!!!!!!
FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
No more hook-ups to his IV at night. No more tube hanging out from under his right arm. One less hole in his beautiful body, AND
BATHS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! If the line stays out, we can give Chase a real bath. And we can let him go swimming with his brother in the kiddie pool, and we can squirt him with a waterhose, and we can take him to the beach!!!!!!!!!!!!!!!!!!!!!
SO EXCITING!!!
We're not out of the water just yet. Chase has to prove that he can maintain and gain weight without the help of TPN and Omegaven and his electrolytes have to stay stable. So far, he is doing GREAT!!! We had a bout of "the squirts" which did cause him to lose some weight. But this morning, the squirts were gone, and his weight went up!!!!!!!!!!!!!!!!!!!!!!!!
The answer: Prayer.
And we are asking for as much prayer as possible right now!!! This is a GINORMOUS step for Chase, and short-gut in general. We really want this for him. This is just one step closer to a normal (oops, sorry Brogans, typical) life for Chase.....and what more could parents ask for.
It's going to be another two weeks before we are done running antibiotics to get rid of the infections which means two more weeks up here. But if the end result is no line, we'll take it. But it also means that much more time away from my Colton. The little ray of sunshine that always brightens the worst of days. I'm not asking for prayer for strength or comfort, just peace while being away from my other son. It's TORTURE.
So get ready for some celebrating, because.............
WE'RE COMING HOME WITHOUT A LINE, THANK YOU LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
GO, CHASE, GO!!!!!!!!!!!!!!!!!!!!!!!!!!
"I CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS ME." Phillipians 4:13
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