Xander did awesome! They drained approx 325cc's of fluid. There are about 235 cc's in a cup so you can imagine how much there was. I was shocked to see it. When I first saw the liquid in the container, I thought it was a urine sample someone left. It was VERY yellow. The bilirubin causes it to be that color, obviously. They sent a sample down to be tested for infection. They are optimistic there isn't any considering how clear it was. Praying they are right.
They did show us the before and after x-rays. It was amazing to see the change. The pleural effusion was pushing his right lung over which was pushing on his heart. Poor kiddo must have been super uncomfortable. It's no wonder he was working so hard to breath.
Anyway, Xander is resting easy. He's still foggy from the sedatives. I hope he stays that way for the rest of the night and that he gets some good sleep in. Lord knows he needs it.
Please pray the fluid doesn't come back too quickly.
xxxooo
1:19pm
We're sitting here in the PICU waiting room waiting. They haven't tapped him yet. We're waiting for the ultrasound. They want to find the best place to put the needle to drain the fluid. Xander is sleeping right now. He's such a tough little guy. They drew blood and had to put a new IV in and he was giggling shortly after.
More later...
More later...
9:20am
We're off to the PICU (pediatric ICU). It's the only place we can get a tap done in the next hour or two. They want to drain that fluid to make it easier for him to breath and to find out what kind of fluid is in there. I can't say that I disagree with either of those reasons. I'm not psyched about the PICU. It's too depressing. There are a lot of very sick kiddos there.
6:49am
Late last night Ron called. One of the transplant surgeons was going to make the call as to whether or not Xander would get a drain. When I meet this doc I am going to seriously kiss him. He said exactly what I had been thinking. They are NOT putting the drain in because they do not want to risk infection. He also said the fluid on his lung wasn't bad yet and that they'll wait and see what happens. Yes!
I know Ron and I are in control of Xander's care and they can't do anything we don't want but some of these docs get us so riled up over nothing. What's worse is earlier in the day his GI, Dr. Cuffari, said they probably wouldn't drain the fluid unless it got really bad. This is how it is though. Sooner or later you start to learn who to trust.
I am so happy we are at Johns Hopkins though. They do make miracles happen.
I know Ron and I are in control of Xander's care and they can't do anything we don't want but some of these docs get us so riled up over nothing. What's worse is earlier in the day his GI, Dr. Cuffari, said they probably wouldn't drain the fluid unless it got really bad. This is how it is though. Sooner or later you start to learn who to trust.
I am so happy we are at Johns Hopkins though. They do make miracles happen.
September 29 - 6:50pm
I'm all snug as a bug in a rug at the Children's House by Johns Hopkins. We were lucky enough to get a room here. It's a nice, clean place and the families who stay here know where I'm at because they are with me. They have sick loved ones too. But most importantly this place is right next to the hospital. I can get there in a flash.
Before I left, they decided Xander needs platelets if he was going to have the minor procedure to insert a drain. Of course, they had to take more blood to check his current count and to make sure they get a match. (I'm not real familiar with this, so don't quote me on that.) They also decided to put in a second IV. At that point I got angry. I am so sick of seeing my child tortured day after day with needles and whatnot. I left to go cool down.
I went down to the playroom, which we can't take him to because they want him on the monitor at all times. I picked out a nice mobile for him. I thought it would cheer him up. When I went back to his room, Xander was a happy kid. I guess he didn't even bat an eyelash when the lady put the IV in and drew some blood. He was even laughing. I was happy he wasn't upset but at the same time, no kid should be even the slightest bit used to pain. It's amazing how much my kid is putting up with and still managing to be as sweet as ever. We are SO LUCKY!
Well, that's all for now. It's Ron's shift at the hospital tonight. I hope it's a quiet night for him.
Praying for all the liver babies out there.
Sweet dreams...
Before I left, they decided Xander needs platelets if he was going to have the minor procedure to insert a drain. Of course, they had to take more blood to check his current count and to make sure they get a match. (I'm not real familiar with this, so don't quote me on that.) They also decided to put in a second IV. At that point I got angry. I am so sick of seeing my child tortured day after day with needles and whatnot. I left to go cool down.
I went down to the playroom, which we can't take him to because they want him on the monitor at all times. I picked out a nice mobile for him. I thought it would cheer him up. When I went back to his room, Xander was a happy kid. I guess he didn't even bat an eyelash when the lady put the IV in and drew some blood. He was even laughing. I was happy he wasn't upset but at the same time, no kid should be even the slightest bit used to pain. It's amazing how much my kid is putting up with and still managing to be as sweet as ever. We are SO LUCKY!
Well, that's all for now. It's Ron's shift at the hospital tonight. I hope it's a quiet night for him.
Praying for all the liver babies out there.
Sweet dreams...
4:05pm
Some good news. Xander's ammonia levels are going down. Whew. It's important these levels stay down because if they get too high they could cause swelling on the brain.
Some bad news. He has a pleural effusion. He's had this for a few days now and it isn't helping with his breathing. Today they took an x-ray and it's getting worse. There are two things they can do. 1. drain it with a needle or 2. put a drain in because it may happen again. I don't want them to put a drain in. I worry about infection. He does not need one more thing to fight. I am waiting for their recommendation and then will decide what's best to do.
Ron completed all his testing. Now we just sit and wait for the results.
Xander is being Xander. He's a happy kiddo. I've been taking pictures and videos and will post them when I can.
Keep on prayin'.
Some bad news. He has a pleural effusion. He's had this for a few days now and it isn't helping with his breathing. Today they took an x-ray and it's getting worse. There are two things they can do. 1. drain it with a needle or 2. put a drain in because it may happen again. I don't want them to put a drain in. I worry about infection. He does not need one more thing to fight. I am waiting for their recommendation and then will decide what's best to do.
Ron completed all his testing. Now we just sit and wait for the results.
Xander is being Xander. He's a happy kiddo. I've been taking pictures and videos and will post them when I can.
Keep on prayin'.
10:00am
I just talk to one of the docs. Looks like we won't be leaving here any time soon. I'll be meeting the transplant coordinator today. I'm happy about that.
It will take a couple of days before we know whether Ron is a match or not.
It will take a couple of days before we know whether Ron is a match or not.
All Quiet
It was a quiet night here, well for Xander anyway. Some poor child kept screaming throughout the night. It wasn't a cry of pain. I think she was scared. I wanted to go down there and hold her. This is one of the many reasons why I won't let Xander stay at the hospital alone. I don't want him to be frightened.
We're waiting for the docs to pop their heads in. I'm suprised they haven't already. I see them circling. haha
Ron's off to his first appt. this morning. It's a 3hr MRI to look at his liver. It's going to be a long day.
More later...
We're waiting for the docs to pop their heads in. I'm suprised they haven't already. I see them circling. haha
Ron's off to his first appt. this morning. It's a 3hr MRI to look at his liver. It's going to be a long day.
More later...
What can you do?
People are always asking me what they can do to help Xander or to help us. Here's what we want...
If you haven't already, please sign up to be an organ donor. Do it right now. It doesn't take long.
If you haven't already, please sign up to be an organ donor. Do it right now. It doesn't take long.
One more time
Xander does not have a virus or pneumonia. It is his liver and spleen enlarging and pushing fluid up onto his lungs. Not what I wanted to hear but we have an answer. I'm actually glad his little body doesn't have one more thing to fight but it's hard to see him working to breath. A piece of really good news is that his INR is 1.0!!!! The vit. K shots worked beautifully.
More from the hospital
Sooooooooooooooo, they may have gotten a bunk weight on Xander. Yesterday he weighed in at 19lbs 6oz. I hope it is a true weight and not extra fluid or enlarging of his liver and spleen. They didn't find any ascites in the ultrasound. But his belly IS bigger and I want them to figure out what's going on exactly.
They did get a sample of the mucus in his lungs to see what's going on in there. Hopefully we'll get those results back tomorrow. That could attribute to his labored breathing as I mentioned before. Whatever the reason, we're not leaving the hospital until he's breathing better.
Keep on smiling and don't forget to pray for all liver babies.
They did get a sample of the mucus in his lungs to see what's going on in there. Hopefully we'll get those results back tomorrow. That could attribute to his labored breathing as I mentioned before. Whatever the reason, we're not leaving the hospital until he's breathing better.
Keep on smiling and don't forget to pray for all liver babies.
We're in the hospital
This is going to be quick and dirty.
The appt yesterday wasn't that great. There are a few things going on with Xander we need to straighten out. I won't run down the list but the most important issue is that his nutrition is suffering horribly. He lost some weight and he is vitamin deficient. So they are giving him large doses of vitamins in hopes of correcting that problem. He is on the feeding pump for 24hrs a day now. He has stopped taking formula orally. They are also giving him fat lipids to help pack on the weight. Praying it works.
Xander is also laboring hard to breath. It's scary to watch him work so hard. They seem to think it's viral, which would be good. If not, than they'll be running more tests to figure out why he's having a tough time breathing. His oxygen levels are great! That's the good news. Oh they didn't see any ascites but did find a pocket of fluid on his right lung in the ultrasound. Ugh. They believe that's liver related but I haven't heard what exactly that means. I looked at the doc when he said that and said, 'Isn't it all pretty much liver related?' I mean, what kind of answer is that?
That's it for now. Oh, a bit of good news. Ron will be evaluated on Monday to determine if he's a good match for Xander. HOPING, PRAYING HE IS!!!
Thank you for all your thoughts and prayers. Xander needs all he can get.
The appt yesterday wasn't that great. There are a few things going on with Xander we need to straighten out. I won't run down the list but the most important issue is that his nutrition is suffering horribly. He lost some weight and he is vitamin deficient. So they are giving him large doses of vitamins in hopes of correcting that problem. He is on the feeding pump for 24hrs a day now. He has stopped taking formula orally. They are also giving him fat lipids to help pack on the weight. Praying it works.
Xander is also laboring hard to breath. It's scary to watch him work so hard. They seem to think it's viral, which would be good. If not, than they'll be running more tests to figure out why he's having a tough time breathing. His oxygen levels are great! That's the good news. Oh they didn't see any ascites but did find a pocket of fluid on his right lung in the ultrasound. Ugh. They believe that's liver related but I haven't heard what exactly that means. I looked at the doc when he said that and said, 'Isn't it all pretty much liver related?' I mean, what kind of answer is that?
That's it for now. Oh, a bit of good news. Ron will be evaluated on Monday to determine if he's a good match for Xander. HOPING, PRAYING HE IS!!!
Thank you for all your thoughts and prayers. Xander needs all he can get.
Xander Listed
My emotions are going in a million different directions. I am terrified but also excited we're making that next step. One step closer to a healthier Xander! He has a PELD score of 25. That's pretty high. Who knows when we'll get THE CALL.
We're hoping Ron will be the donor but if we get a call between now and before Ron's eval is finished, we're taking it.
Keep Xander in your prayers.
HUGS!
We're hoping Ron will be the donor but if we get a call between now and before Ron's eval is finished, we're taking it.
Keep Xander in your prayers.
HUGS!
Messages for Xander
Leave a special note, poem, song, joke, prayer or whatever you want for Xander. We will read each and every one of them to him as he recovers.
Angel Gavin
Gavin lost his battle yesterday. My heart is hurting. Pray his parents find peace during this terribly difficult time.
I can't make the tears stop.
-----
One of the parents on the Liver Families posted this poem the other day. It seems appropriate right now. It brings me comfort to read and know that all little angels go back into the beauty of where they came from.
If Tomorrow Starts Without Me
by: David M. Romano © 1993
If tomorrow starts without me
And I'm not there to see,
If the sun should rise and find your eyes
all filled with tears for me;
I wish so much you wouldn't cry
the way you did today,
While thinking of the many things,
We didn't get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you'll miss me too;
But when tomorrow starts without me,
Please try to understand,
that an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I'd have to leave behind
all those I dearly love.
But as I turned to walk away,
A tear fell from my eye,
For all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
So much left yet to do,
it seemed almost impossible,
that I was leaving you.
I thought of all the yesterdays,
The good ones and the bad,
I thought of all that we shared,
And all the fun we had.
If I could relive yesterday,
Just even for a while,
I'd say good-bye and kiss you
and maybe see you smile.
But then I fully realized,
That this could never be,
for emptiness and memories,
would take the place of me.
And when I thought of worldly things,
I might miss some tomorrow,
I thought of you, and when I did,
My heart was filled with sorrow.
But when I walked through heaven's gates,
I felt so much at home.
When God looked down and smiled at me,
From His great golden throne,
He said, "This is eternity,
And all I've promised you."
Today your life on earth is past,
but here life starts anew.
I promise no tomorrow,
But today will always last,
and since each day is the same way,
There's no longing for the past.
So when tomorrow starts without me,
don't think we're far apart,
For every time you think of me,
I'm right here, in your heart.
Be at peace, angel Gavin. Fly high!
I can't make the tears stop.
-----
One of the parents on the Liver Families posted this poem the other day. It seems appropriate right now. It brings me comfort to read and know that all little angels go back into the beauty of where they came from.
If Tomorrow Starts Without Me
by: David M. Romano © 1993
If tomorrow starts without me
And I'm not there to see,
If the sun should rise and find your eyes
all filled with tears for me;
I wish so much you wouldn't cry
the way you did today,
While thinking of the many things,
We didn't get to say.
I know how much you love me,
As much as I love you,
And each time that you think of me,
I know you'll miss me too;
But when tomorrow starts without me,
Please try to understand,
that an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above,
And that I'd have to leave behind
all those I dearly love.
But as I turned to walk away,
A tear fell from my eye,
For all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
So much left yet to do,
it seemed almost impossible,
that I was leaving you.
I thought of all the yesterdays,
The good ones and the bad,
I thought of all that we shared,
And all the fun we had.
If I could relive yesterday,
Just even for a while,
I'd say good-bye and kiss you
and maybe see you smile.
But then I fully realized,
That this could never be,
for emptiness and memories,
would take the place of me.
And when I thought of worldly things,
I might miss some tomorrow,
I thought of you, and when I did,
My heart was filled with sorrow.
But when I walked through heaven's gates,
I felt so much at home.
When God looked down and smiled at me,
From His great golden throne,
He said, "This is eternity,
And all I've promised you."
Today your life on earth is past,
but here life starts anew.
I promise no tomorrow,
But today will always last,
and since each day is the same way,
There's no longing for the past.
So when tomorrow starts without me,
don't think we're far apart,
For every time you think of me,
I'm right here, in your heart.
Be at peace, angel Gavin. Fly high!
What a weekend!
We had a mega busy weekend. It was exhausting but loaded full of fun. It took all day yesterday for me to recover. Seriously.
On Friday, my brother and his girls came down. Gracie's birthday was last week. She turned 1 so we had a little cake to celebrate. She was having fun with her birthday presents and really loved the cake. You can see where she was putting her fingers into it.
Linc enjoying some 'nummy cake'.
Xander enjoying a 'nummy paper plate'.
On Saturday we went to the zoo! It was such a beautiful day. The sun was shining and the temperature was perfect.
Linc taking a timeout from looking at the elephants to look at the camera.
Who cares about cheetahs when there are golf carts around? The kid loves anything with wheels. If only the animals had them.
Linc was 'hungee'.
Xander being sweet.
My beautiful sister-in-law.
My handsome brother.
Another pic of my bro. haha
Last pics of the day. Linc was exhausted.
The ONLY pic of me and the boys that was in focus and, of course, I was making a silly face. Look at that big mouth! haha
I didn't get any pics of Sunday. We headed to Grandpa's house for a big BBQ. We met some terrific people. It was another perfect day.
Ahhh...life just doesn't get any better than this.
On Friday, my brother and his girls came down. Gracie's birthday was last week. She turned 1 so we had a little cake to celebrate. She was having fun with her birthday presents and really loved the cake. You can see where she was putting her fingers into it.
Linc enjoying some 'nummy cake'.
Xander enjoying a 'nummy paper plate'.
On Saturday we went to the zoo! It was such a beautiful day. The sun was shining and the temperature was perfect.
Linc taking a timeout from looking at the elephants to look at the camera.
Who cares about cheetahs when there are golf carts around? The kid loves anything with wheels. If only the animals had them.
Linc was 'hungee'.
Xander being sweet.
My beautiful sister-in-law.
My handsome brother.
Another pic of my bro. haha
Last pics of the day. Linc was exhausted.
The ONLY pic of me and the boys that was in focus and, of course, I was making a silly face. Look at that big mouth! haha
I didn't get any pics of Sunday. We headed to Grandpa's house for a big BBQ. We met some terrific people. It was another perfect day.
Ahhh...life just doesn't get any better than this.
More prayers
Please don't forget Gavin in your prayers today. He's still having a hard time.
I pray for Gavin's little body to heal and for his health to be restored. I pray for Gavin's angels to watch over him and bring him comfort during this time. I pray Gavin never gives up the fight. I pray Gavin's parents' faith brings them the strength they need to get them through this terribly difficult time.
I pray for Gavin's little body to heal and for his health to be restored. I pray for Gavin's angels to watch over him and bring him comfort during this time. I pray Gavin never gives up the fight. I pray Gavin's parents' faith brings them the strength they need to get them through this terribly difficult time.
September 17, 19...not going there
It's my Mom's birthday. Woohoo! Time to eat some cake. lol I found some great gifts. What are they you ask? I'm not telling. I'm keeping them a secret for now.
Isn't the paper and bag pretty?
The cake! It's from my favorite bakery, Heidelberg Pastry Shoppe.
Wait for it.
Oooo. Ahhhh. This is the Steinway Cake. It's chocolate devils food cake and yellow cake layered with chocolate and vanilla buttercream. How good does that sound?
Look who came creeping around as soon as I got the cake out.
I don't blame him. I'm ready to dive in too.
And tomorrow we have another special birthday...
Isn't the paper and bag pretty?
The cake! It's from my favorite bakery, Heidelberg Pastry Shoppe.
Wait for it.
Oooo. Ahhhh. This is the Steinway Cake. It's chocolate devils food cake and yellow cake layered with chocolate and vanilla buttercream. How good does that sound?
Look who came creeping around as soon as I got the cake out.
I don't blame him. I'm ready to dive in too.
And tomorrow we have another special birthday...
Sweet Gavin
I am asking for anyone who reads this blog to keep Xander's liver friend, Gavin in your thoughts and prayers. He is having a really tough go right now and needs all healing energy we can send him. He is such a sweet little baby and his parents are very worried right now.
Gavin ~ Xander and I are praying hard for you to feel better soon. You are so brave. Keep on fighting, litte boy. xxxooo
Don'ts
Don't leave your pen laying on the edge of the table.
Don't let your child stir the brownie batter...that is if you want any brownies.
:-} ~ Muah ~ Love you Mom!
Don't let your child stir the brownie batter...that is if you want any brownies.
Don't let your Mother trim your child's bangs.
:-} ~ Muah ~ Love you Mom!
The Results
His ammonia levels are.......NORMAL!!
---------------------------------------------------------
t-minus 3 days until Daddy arrives.
---------------------------------------------------------
t-minus 3 days until Daddy arrives.
update...update...update
Last night we were at the ER. Linc got nursemaids elbow again. He got it about a year ago. Ron was trying to talk me through how to fix it but I didn't want to mess with his arm. He would cry out in pain every time I touched it. Poor baby. It has to be painful. At the ER, they showed me a really easy way to fix it. I think if it happens again I won't have any qualms trying their technique. The ER visit was suprisingly quick. I say we were there for no more than 45 minutes. I think that's the fastest ER visit in the history of the world. I had seriously prepared myself up for a nice, long evening. Glad it wasn't.
Today we had a visit with the folks at Johns Hopkins. Xander is doing great. He's 18lbs. 12oz. The new formula is working! I am so psyched. He keeps getting closer to the 20lbs goal. He's doing much better now that he's on the antibiotics for the c diff. They drew blood to check his ammonia levels again. When they put the needle in, he didn't cry. I was so proud of him yet felt terrible at the same time. No little baby should be used to pain. He's my tough kid.
Another bit of good news is Ron will be here on Tuesday for a nice, long stay. Yipeeee!
Happy days!
Today we had a visit with the folks at Johns Hopkins. Xander is doing great. He's 18lbs. 12oz. The new formula is working! I am so psyched. He keeps getting closer to the 20lbs goal. He's doing much better now that he's on the antibiotics for the c diff. They drew blood to check his ammonia levels again. When they put the needle in, he didn't cry. I was so proud of him yet felt terrible at the same time. No little baby should be used to pain. He's my tough kid.
Another bit of good news is Ron will be here on Tuesday for a nice, long stay. Yipeeee!
Happy days!
Spaziergangen
Linc and I went out for a walk Sunday morning. It was so beautiful. The day before we were experiencing Hanna and were trapped inside for the majority of the day. It was time to get outside for a while.
He's walking or rather running in the neighborhood.
We saw geese!
Trying his hardest to catch the geese.
He gave up. They are just too fast for him.
Walking on the benches. Careful! he kept saying.
Hanging out against a wall.
Linc! Over here!
He looked! Well at least he looked in my direction. This turned out to be my favorite pic of the day.
He fell on the stairs near the rails and got a boo-boo.
There was a father and his daughters playing on the tennis courts. Linc couldn't take his eyes off the game. The next Federer??
We got back on the bench because it was so much fun the first time. He fell. Yes. Again. Then it wasn't so much fun.
But he found a stick and forgot all about the fall.
We had a good time. He loves walking and exploring and I love taking pics of him. Perfect.
He's walking or rather running in the neighborhood.
We saw geese!
Trying his hardest to catch the geese.
He gave up. They are just too fast for him.
Walking on the benches. Careful! he kept saying.
Hanging out against a wall.
Linc! Over here!
He looked! Well at least he looked in my direction. This turned out to be my favorite pic of the day.
He fell on the stairs near the rails and got a boo-boo.
There was a father and his daughters playing on the tennis courts. Linc couldn't take his eyes off the game. The next Federer??
We got back on the bench because it was so much fun the first time. He fell. Yes. Again. Then it wasn't so much fun.
But he found a stick and forgot all about the fall.
We had a good time. He loves walking and exploring and I love taking pics of him. Perfect.
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