Thursday, August 10, 2006

Today's "Damage"



Oh what a day today has been. Things just aren't getting any better for Jack. First, I was able to get CT to put in the broviac. Yeah! I don't think I mentioned in yesterday's update that the ID people noticed some fluid in the area around Jack's left lung, so they asked the CT surgeon if he would drain it so they could culture it. The pulmonary docs said on x-ray it looked like there might be a small amount of fluid, but not enough to justify tapping it, but since he was going to the OR, it made sense to go ahead and do it. Well, in true Jack fashion, the x-ray was very deceiving and there was a lot of stuff that was drained and is still being drained and it is not at all what they were expecting. Although I am somewhat medically literate, I will tell you that what they threw at me today was a bit over my head. I asked Jack's godfather, who is a pediatrician and who is keeping in the loop because he has privileges here at Children's, to write it out for me so that I could accurately explain what is going on. What they are draining out of the space surrounding Jack's left lung (the area between the chest wall and the pleura) is stuff called "chyle" which flows through the lymphatic system. He has what is called a "chylothorax". They aren't sure where the "leak" is or how it happened -- possibly during the spinal surgery, but the CT surgeon can't exactly figure out how to relate what they did during the spinal surgery to the chylothorax. I'm not sure I really understand entirely what is going on, but, the end result is that Jack has a drain coming out of his left chest and they are draining off the "chyle" every 4 hours as of now. Initially, they were getting quite a bit out, but it has tapered off through the evening. So, in addition to the broviac, which they placed on his right upper chest (your left looking at the above picture), he also has the tube coming out the left side of his chest (which you can't see in the picture). To top everything off, we have been suctioniong a lot of blood (clots) from Jack's trach today. For reasons I don't understand, the blood from the trach has no one concerned.

Jack is really hurting today and is having a difficult time breathing. He is back on oxygen and his vent settings have been increased. There is a real possibility that he may end up back in the PICU. He is doing okay as of this very moment (it's 11pm), but this evening was very rough.

What does this all mean? Well, the chyle is not an infection. So, the question remains, is there still a source of infection out there somewhere, or is the chylothorax the source of the fever. They are treating Jack with IV antibiotics in any event and I guess we just sit and wait to see how things fall out. Guess what .... we aren't getting out of here any time soon. Depending on how tomorrow goes, I will most likely fly home on Saturday and fly back out here Wednesday or Thursday. I need to see my other kids, get into the office and, more than anything else ... get out of here for awhile. I'm not a nice person anymore. Mark has plenty of vacation/sick time to spare and he will stay with Jack next week. It will be very difficult for me to not be here, but I don't anticipate any major decisions having to be made while I'm gone and I'll be in touch by phone (every hour on the hour). I think the docs will be glad to be rid of me.

As you can see from the picture, not only is Jack not sharing any smiles, he is downright sad. I feel so incredibly guilty for putting him through so much pain the last 14 days and I'm not convinced it is/will be worth it. I guess time will tell.

Ciao.

21 comments:

Anonymous said...

Bless you, Ann, I have no idea how you've gotten this far without leaving a body count. I've been peeking all day to see how things were progressing and I was SO hoping for better news.

*sigh*

With you in spirit,

Kari

Anonymous said...

Wish I could throw my arms around you right now.

XOXO
Anne

Anonymous said...

I'm praying that things leveled out last night. Hoping that today brings better news. Wishing there was something tangible I could do, but just know you are in our prayers.

Jennie

kathy said...

Anne,
I just dont know what to say. things have been so hard for Jack and you, i was hoping that today would bring better news, my heart goes out to you all and know you are both in our thoughts and prayers, i sure hope things turn around soon thats forsure,
Kathy

Anonymous said...

Oh, Ann, I was hoping to hear that the source of infection was found and that you all would have a date to leave soon :-( Now you have a whole new set of issues. Ugh. I am sorry that Jack has to go through all of this. I will keep praying for strong little Jack and for your sanity.

Michelle

Anonymous said...

I hope today goes better for you and jack. Keeping you and jack in our thoughts and prayers.

becca

Melisande said...

Ann,

I was hoping for better news too. Poor little Jack! (and Mamma too) I wish I had better words or things to do for you guys. My heart is there with you. We'll continue to pray for you all.

Love,
Melisande

Julie Worthington said...

Oh Ann, I am so sorry, I am crying reading this. Poor Jack looks so fed up, and who can blame him, I bet a pic of you would look the same. I just want to be able to hug you both. I hope that they can get to the bottom of this soon. Have a restful weekend (probably won't, when I leave the hospital to come home I generally spend hours washing and cleaning!!)
I suppose it would probably be better if Jack did go back to the PICU (though I know you would rather he was heading for the door!), but at least then you could both take a break.

Love Julie

Cindy said...

Can't tell you not to feel guilty, as a mother's guilt simply goes with the territory. But I can tell you that you did make the right choice for Jack. Honestly, it was an easy call. He needed the spinal fusion. The added complications are beyond your control which is incredibly frustrating. Life just is not fair sometimes. :-(

Barb said...

Oh, Ann. I was checking the page all day yesterday and I knew something was wrong when you hadn't posted. I'm glad you are going to go home for a bit. I hope you can feel the support and love from all of us.
-Barb

Anonymous said...

Oh Ann, I was hoping to see good news this am. I am so sorry that you and Jack have to go through this horrible time. I am still saying prayers for you guys.
Keep your chin up, but also cry as much as you want as well.
Lots of love,
Teresa

Anonymous said...

Poor Jack. He's had a lot to go through and you've had a lot to watch him go through - both incredibly hard. As hard as it is for you to leave, it's time to give the reins over to Dad. I hope and pray the mountain doesn't get any higher and that Jack will be back to smiling soon.
XOXO
Evy

Anonymous said...

I'm hoping and praying for some "smooth sailing" for you guys! I've never seen (only read about) Jack's new development. That lymph system is tricky. He looks very sad indeed and I can't imagine what he's feeling.

You made the best decision you could for him. I know your second guessing now, but hopefully things will look up very soon.

Hugs,

Dawna

Carrie said...

{{{HUGS}}}
Oh Ann ~
I hope today is a little brighter for both of you.
XOXO
Carrie

Anonymous said...

That sad face Jack has in the picture just breaks my heart! Mommy guilt is tough....but he needed the fusion...I know there is nothing anyone can say to make things better right now... I just hope today is a better day.
Karen

Gloria said...

I think a big dose of bear hugs from Eric and the girls will do you wonders!! I'm so sad that Jack has to go through all this and so sorry you have had to deal with all this. You have so much love and support, and I hope you're able to gain some strength from that--and knowing that Mark will take over for a while. Remember that you have to take care of you too--so try not to feel guilty about leaving Jack, or missing WORK, or not cleaning your house when you get home...Take care and I'll see you soon! Gloria

Anonymous said...

Ann -

I'm sorry this has been so difficult. Remember that you insisted on the CT group for the broviac, and it was a good decision since they found the fluid issue. Chest tubes (or this similar thing that isn't into the lung) are tough. Any cough makes it hurt, so of course Jack has it worse. I hope you can get some rest at home and come back to a healed little man. Prayers for you.

- betty

Anonymous said...

I'm so glad you are going to go home for a few days and turn Jack over to Daddy. You need a break, even if it includes work. I'm sorry that things are not going easy. Savor those hugs from your other kiddos.

I'm continuing to pray.

Love, Sandra

Lora G. said...

Ann,
I am praying that the next days only bring good news. Those pics just tore my heart out. Please have a safe trip home, maybe a few days home will recharge you a little bit? You are constantly in our thoughts and prayers.
Lots of love and hugs,
Lora

Anonymous said...

Ann :o(
I wish you and sweet Jack didn't have to endure such difficulties. I hope they can isolate the cause of the fever. I know it will be hard to leave Jack, but I think you need the reprieve. Lots of prayers and well wishes coming your way for Jack to start improving quickly!! Hugs and love, Whitney

Shannon said...

Anne:

Your post today brought tears to my eyes. This is not what you signed up for, I know! How scary and devastating for Jack. I guess if he ends up in the PICU you'll get a little more privacy, less exposure to germs and better care, right?!? I'm sure it is hard for you to leave, but it is better for your sanity. Please let me know if there is anything I can do. (Smuggle beer in, shots, you name it!:)

Take care,
Shannon