I woke up this morning dreaming about Corban. I dreamed that I finally got him home, was holding him, and getting ready to feed him. Then a nurse came up and said, "no, actually, I was getting ready to feed him." I argued with her and said that he was my baby and "no, she couldn't have him." So, she started to angrily yank him out of my arms. I pulled him back. The dream ended with us both pulling on Corban, neither of us winning.
I have issues.
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We are thinking and praying about taking Corban up to Philadelphia for his orthopedic care, when he gets out of the NICU. There's a doctor up there who specializes in AMC (arthrogryposis multiplex congenita). May God make it clear to us and make a way for us, if that's what He wants of us.
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Exciting news... Corban is OFF the ventilator! Hard to believe, but such a nice surprise. Hoping he stays off. :) It is CRAZY to hear his voice for the first time!
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Another Day of Battle
Another day of battle. Not people, but medical terminology, risks, benefits, decisions. Things that are beyond us, and even beyond the doctors. Praying that we made the right choice. We really did feel that the Lord was with us though, guiding us. So, we ended up opting out of the procedure to try to repair Corban's lymph duct, and will wait another week or so to see if he improves on his own.
PLEASE everyone pray for a miracle, and that he won't have to have this procedure done! It is not pretty. The surgery would entail going up from under his ribcage, compressing his lung, possibly injuring his lung, probably breaking his ribs, just to possibly fix the possible problem. If his fluid improves this week, then we won't have to consider this painful procedure.
Also, the broviac line went in well, with no complications to speak of. Now that he's out of IV sites, he really needed this central IV line to deliver his pain meds, antibiotics and nutritional supplements. His electrolytes are all messed up and it's a constant battle to keep his sodium, potassium and calcium levels at a safe level. Also, he is battling a bacterial infection, so he's on another round of antibiotics. He's got a lot going on in that little body of his. Pray to the Great Physician for our baby boy!
Surgery Scheduled
Corban is 2 months old today. It's been such a long 2 months. He has an IV site in his knee right now and we're praying that holds until tomorrow. They are completely out of options. Yesterday, the nurses had to stick him 14 times before they could get an IV site that worked!
So, surgery is scheduled for tomorrow at 1:30pm. The surgeon will put in another broviac central IV line and will also check to see if Corban's main lymph duct has been injured. If it is, he'll have to determine if it's fixable and possibly perform surgery on it tomorrow.
So, surgery is scheduled for tomorrow at 1:30pm. The surgeon will put in another broviac central IV line and will also check to see if Corban's main lymph duct has been injured. If it is, he'll have to determine if it's fixable and possibly perform surgery on it tomorrow.
The "You Can'ts"
If all you hear all day is "you can't", you start to believe it. "You can't stand there, you can't park there, you can't touch that, you can't do that, you can't hold him, you can't touch him, you can't have him, you can't you can't you can't." So tired of the "you can'ts"!
The Warfare is Long
"And when the strife is fierce, the warfare long,
steals on the ear the distant triumph song,
and hearts are brave again, and arms are strong.
Alleluia, Alleluia!" (from the song, "For All the Saints")
The warfare is long right now. I need a brave heart and strong arms.
steals on the ear the distant triumph song,
and hearts are brave again, and arms are strong.
Alleluia, Alleluia!" (from the song, "For All the Saints")
The warfare is long right now. I need a brave heart and strong arms.
Out of IV Sites
We are running out of IV sites for Corban. He will probably end up needing the broviac central IV line put back in, which does not make me happy. They are also talking about trying to surgically fix the chylothorax at the same time (what might be causing the fluid on his lungs).
Pray his IV site holds long enough so they don't have to do an emergency broviac line today. That would not be pretty.
Pray his IV site holds long enough so they don't have to do an emergency broviac line today. That would not be pretty.
Ups and Downs
Is everybody still praying for Corban? He had a rough couple days and the doctor had to put a chest tube in today. Definitely feeling like it's another set back.
His head is starting to swell again AND he had to have a blood transfusion last night. I thought we were on the up and up! I don't know if I can take much more of this up and down. He's almost 2 months old. :(
His head is starting to swell again AND he had to have a blood transfusion last night. I thought we were on the up and up! I don't know if I can take much more of this up and down. He's almost 2 months old. :(
MRI Results
Corban had an MRI of his brain yesterday. They didn't see anything too unusual, except that he is incredibly smart! ;) Seriously, it came back normal, which is wonderful news. They do want to show it to a pediatric radiologist at some point though, to get an expert opinion.
Also, he is chest tube free (since Wednesday). But he is still having some fluid on his left side. He was having a really hard time breathing today because of it, so they ended up draining the fluid off with a syringe. Little by little. Inch by inch.
Also, he is chest tube free (since Wednesday). But he is still having some fluid on his left side. He was having a really hard time breathing today because of it, so they ended up draining the fluid off with a syringe. Little by little. Inch by inch.
Philadelphia?
We are thinking and praying about taking Corban up to Philadelphia for his orthopedic care, when he gets out of the NICU. There's a doctor up there who specializes in AMC (arthrogryposis multiplex congenita). May God make it clear to us and make a way for us, if that's what He wants of us.
Catching up on His ZzZzs
Corban is catching up on his sleep now that he has his own room, and doesn't have to experience quite so many obnoxious beeping noises. So thankful for this new blessing.
He still has no chest tube on his right side. Praying the left one good riddance too!
Also, docs are hoping to do an MRI of his brain by the end of the week to check his central nervous system. Really hoping it comes back normal.
He still has no chest tube on his right side. Praying the left one good riddance too!
Also, docs are hoping to do an MRI of his brain by the end of the week to check his central nervous system. Really hoping it comes back normal.
Isolation Room
Every time Corban would nod off to sleep tonight, the alarm from the baby next to him would start beeping and startle him awake. So, I prayed that the Lord would make him well so he could come home and be able to sleep! On the way home from the hospital, his nurse called me and said they were going to move him into the isolation room tonight. Wow! The Lord heard my prayer, just answered it in a way I would have never expected!
God Was Good. God Is Good.
Well, God was good on Thursday, when Corban came off the ventilator. He was good yesterday, when Corban had a chest tube taken out. And He's good today, even when Corban had a collapsed lung, had to go back on the ventilator, and had to stop his feeds.
"The Lord is GOOD, a refuge in times of trouble. He cares for those who trust in him." -Nahum 1:7
"The Lord is GOOD, a refuge in times of trouble. He cares for those who trust in him." -Nahum 1:7
Chest Tube Is Out!
Bam. Bam. Bam. More good news! The doctor took Corban's right chest tube out today!! Woo-hoo! It's been dry since Monday. SUCH good news. The left one still has some fluid, but not like it used to. Also, we started him on milk today. No more formula! I can hardly believe these last two days have brought such good news for our little boy. Thank you, Lord.
We definitely appreciate all your prayers for Corban. I think he's going to be ok. :) Now, let's pray that other chest tube out forever and those broken bones to heal!
Oh, to Hear Him Cry!
Exciting news... Corban is OFF the ventilator! Hard to believe, but such a nice surprise. Hoping he stays off. :) It is CRAZY to hear his voice for the first time!
Back to the Drawing Board
Sigh. Back to the drawing board. Corban filled up his new atrium today with 200 ml. of fluid from his left side. Removing the broviac line didn't seem to work. This is disappointing for sure. Also, we found out today that Corban's lower right leg is fractured. It looks like it happened at the same time that his femurs and left arm broke. AND we discovered that he has a recently fractured rib (from one of his chest tubes being put in). Does it ever end?
Overall, he is doing fairly well, considering all the pain he should be in. For the last 2 1/2 weeks, he's been alert, active, and looking around. So that is good news. He's up to full feeds now (using a feeding tube and low-fat formula). That was a requirement for them to take the broviac line out.
God Speaking to Me
N just showed me a card she wrote and then "read" it to me. "Dear God, I love you that you give us strength always." Felt like God was speaking to me through her.
Broviac is Out
Broviac line is out. Praying the drainage stops now.
I got to hold him today. He did beautifully, too! He didn't have his hip brace on today, but even without it, he didn't even wince when they moved him from the bed into my arms. I got to hold him for over an hour. It was completely and thoroughly wonderful.
Game Plan
Game plan for Corban. . . take the broviac IV line out sometime in the next couple of days and see if that stops the chest tube drainage. The doctor is wondering if the broviac is resting on the lymph gland, causing it to overproduce fluid. Please pray this will work! This drainage has to stop.
A New Medicine
The biggest issue for Corban right now is the fluid on his lungs. He's on a new medicine today that is supposed to help dry up the fluid, but like everything medical, there are risks. Prolonged use of the medicine can damage his kidneys. So, please pray the fluid dries up quickly, that no damage will be done, and that he could avoid having to have surgery to fix this fluid problem.
Juggling Everything with the Kids
I'm finding it hard to juggle things these days. Spend half my day trying to find childcare and the other half talking to doctors using big words I don't understand. My head is spinning! Who has time for laundry or grocery shopping?
Not to sound ungrateful. I've been so blessed with all the help we've gotten. It's still overwhelming at times. Finding help with J and N has been one of the greatest challenges lately. It is a constant source of stress for me to try to scrounge someone up to help, so that I can go be with Corban. It's also hard on J and N for me to be gone so much. They were used to having me home ALL the time. Now, I'm hardly home at all.
It was novel at first to have different people come every day to play with them. Now, they just miss their mommy. When I'm getting ready to leave in the mornings to see Corban, J starts freaking out, crying, screaming, stomping his feet and shaking his head. N frequently says, "Mommy, but I don't want you to go! I will miss you!!" When I give them hugs and kisses goodbye, I have to pry myself out of their arms. This makes it even harder on me to go, as I a feel like I'm abandoning them. It kills me, but I need to be with Corban. What can I do?
All I know is that I'm ready for him to come home! This experience is hard on all of us, in more ways than one.
Not to sound ungrateful. I've been so blessed with all the help we've gotten. It's still overwhelming at times. Finding help with J and N has been one of the greatest challenges lately. It is a constant source of stress for me to try to scrounge someone up to help, so that I can go be with Corban. It's also hard on J and N for me to be gone so much. They were used to having me home ALL the time. Now, I'm hardly home at all.
It was novel at first to have different people come every day to play with them. Now, they just miss their mommy. When I'm getting ready to leave in the mornings to see Corban, J starts freaking out, crying, screaming, stomping his feet and shaking his head. N frequently says, "Mommy, but I don't want you to go! I will miss you!!" When I give them hugs and kisses goodbye, I have to pry myself out of their arms. This makes it even harder on me to go, as I a feel like I'm abandoning them. It kills me, but I need to be with Corban. What can I do?
All I know is that I'm ready for him to come home! This experience is hard on all of us, in more ways than one.
Medical Interventions
I'm wondering if medical intervention will end up saving Corban or be his demise. We found out today that the fluid collecting on Corban's lungs was probably caused by his central line being put in, injuring his main lymph duct. I'm definitely feeling like his problems are caused from the solutions.
Right now, we are just waiting to see if he can recover on his own or if he'll end up needing surgery.
A Collapsed Lung
Well... Bad news. Corban had a collapsed lung this morning. It probably happened from the fluid putting pressure on it, causing him to work too hard to breathe. He's ok now. Just keep praying, praying, praying that the fluid on his lungs would go away - FAST! It is very taxing on his little body.
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