Thursday, September 29, 2011

The port is in!

Yesterday was a completely exhausting, emotional roller coaster of a day- but very successful!  Since Kevin had to take our son to school in the morning, he stayed home while Emily & I got up at 2 A.M. to get ready to leave for the hospital.  We had to be there at 6, and our drive is about 2.5 hours.  We made decent time, and there weren't too many people there yet.  She was so brave, sitting there reading a little, chatting, and watching TV.  When they called us and took us back, she didn't try to run away like I thought she might.  She charged ahead. 

The first thing that I noticed was there were two other kids waiting for surgery.  They were both around her age, maybe just a little younger.  One was having a tonsilectomy and adenoidectomy.  The other was there for tubes and adenoids.  Child Life came in to talk to the kids, prepare them, make them comfortable.  We got the adult nurse that started with "I see you have a history".  While he was very nice, I couldn't help but wish that we hadn't gone through so much that we didn't need Child Life.  As they were about to take her back to anesthesia, the surgeons were called back to an emergency.  So we waited.  They found a TV for her, and she busied herself with Cartoon Network.  By 8:40 A.M., they finally took her back.  I hugged and kissed her, told her I love her, and she gave me a quick "see you soon!"  She told me later that as she got back into prep she started to cry.   ;(    We spoke to many, many people about this.  We were told by most of them that the surgery was pretty much just like getting a blood draw, but in the chest.  No worse than that, right?  I went with that because I didn't want to scare her, and it's easier to think about when the picture is all neat and tidy, right?

The wait seemed to take forever, but finally they called downstairs to say that she was done and she did well.  As I went upstairs, I ran into the surgeon so he took me back to her and explained the situation as we walked.  He said that they tried her upper left- where they normally go- but it just wasn't working.  They ended up in the lower right/ middle area of her chest.  (He made it so she could wear a swimsuit without it showing.)  However, even there the vein wasn't good.  He said that she has really bad veins but, "God willing, this should last her 2 years or so".  Because of the veins being so bad, he had to run the catheter tube up into the main vein in her neck.  So she has 3 areas that were cut into.  She said that the worst of the pain is coming from the neck.  

The only thing that she complained to the surgeon about was the IV in her hand.  She yelled at him that she wanted that OUT.  He told her a nurse would be along after a chest X-ray was done. As soon as the surgeon walked away & I turned to her, she started sobbing.  "This was a bad idea, I want it out!  It hurts too badly, Mommy.  Get it out!"   (About the port)  I started crying with her until a very alert nurse came over to help us out.  I also didn't realize that the surgeon's resident had walked in.  They hooked her up with pain meds very quickly.  Not only did she take the meds with no complaint but she also drank right away- a good sign. As soon as they started to kick in she calmed down.  She started chatting with the nurses a little later about why she needed this and how great it was going to be.  As soon as she got her chest x-ray she was cleared to head upstairs to her infusion. 

For the first time ever she wasn't freaking out when the nurses came over to start her IV.   She told them that this was the easiest ever and she was really happy about getting the port.  Totally worth it. 

We had other things to talk to the doctor about.  We didn't have an appointment but I asked the nurses what we should do.  Em has had blood in her stool somewhat frequently lately.  I've called a few times about it.  I know it's hard to tell what's happening based off of that.  I suspected her Mobic.  This happened to her when she was on Naproxen, too.  She wasn't on Prilosec then, though.  One of the nurse practitioners came in to talk to us about it.  A week or two ago, Em had a bad stomach ache.  I knew that it hurt, but I didn't know how badly.  Up in recovery she had said something about "If I die at a young age"... I don't remember the rest because I stopped her to ask "Do you think you're going to die at a young age?"  She replied, "No, but I did the other week when my stomach hurt so badly."  I had no idea it was that bad, so as far as she's come with informing us about her pain, she still has a way to go.  So, after telling them about that, they agree that it may well be the NSAID doing some damage.  Just in case, they gave us a smear test to take home.  We have to take a sample from any 3 random bowel movements, then take all 3 samples back for our next appointment.  They say that if there's really blood in there, it may not be visible but it will show in the test.  All I could think of was NCIS and Abbie's character.  (I do love forensics...)

To top off the day, she shared with me that Emily's last labs showed that her IgG had dropped to 550.  She said that if they dropped below 500 then they would order an IViG for our next Remicade infusion.  Now, to backtrack to when we first started the Rituxan, at first it seemed like it was magically reversing her series of illnesses.  She had been sick constantly until we tried it, which is ridiculous since it's an immune suppressor.  Then she got my cold.  Between the cold and the surgery, I knew her counts would be low.  I even told the nurse to plan on it.  I got a copy of her labs last night before we left.  IgG: 459.  They haven't called me to tell me that yet, but they had said that if they were low they were going to try her on the 5 hour IViG infusion, which will mean another very early day for us, and likely closing the place out.  I expected a call today, actually.  Maybe the rest doesn't mean too much, and I never got around to looking it up today, but she's off on a LOT of things.  Her chloride, Monocytes & Red Cell Distribution Width are high; the RDW is always off, but I don't know why.   Protein, IgG, IGM and Lymphs are low.     I know the meds are working on her inflammation because the general inflammatory markers are awesome!  Her C- Reactive Protein (CRP) is <0.2!  Her Sed Rate is 9.  When she was kept inpatient last year, her Sed was 74 or 79.  Ouch!!!  And her muscle enzymes all look fantastic!  Her ALT & AST are 31 & 32.  I want to say that high starts at 40.  Her ALK looked good, too.  ALD wasn't back yet.   These meds are leading us in the right direction, I'm sure.

The best part of the day?  Hanging with friends in the infusion room  :)  Little Sadie was there, too! I had no idea they were going to be there, but it was so nice to just sit back and chit chat like the day hadn't been an emotional roller coaster.  The girls are sooo funny.  They are both so shy that they won't really talk to each other.  They ask us to ask their questions for them.  Too cute!!!  However, when it came to "Tangled", they chatted like they had known each other a while.  It was a nice end to a very long day.  We finally left around 4:30, making it the fastest infusion EVER for us.  And that was with getting upstairs about 1/2 hour after her noon appointment.

So much has happened that my mind is still whirling.  I'm probably missing a bunch, but I'm so exhausted still.  I was completely worthless today.  I think I've lost everything at least once today.  She's doing great.  They sent her home with about 2 days worth of Oxycodone.  I was a little shocked at that, but I know she needs it.  I was expecting Percocet or Vicodin, Demerol, something not as heavy-duty.  She's slept a lot, and she's having a bit of a hard time doing normal things, but she knows that it won't be long before she's healed.  The incisions look fantastic!!!  I was expecting much worse.  It almost looks like they used a clear glue over the stitches.  That makes the wounds look nicer.  Tonight, despite the pain she's feeling good about it.  She knows that this will make her life better.  No worries, no stress, no anxiety every month.  Thank you, Lord!!!  She amazes me so much.  Most kids would have freaked, but she's calm, cool and collected.  She's so sweet, so smart and so adult-like.  That makes me a little sad.  I'd love for her to be rambunctious, running around, a little ditzy even.  At least then she'd be a kid.  She's never really had that chance.  I am unbelievably proud of her.  I'm a rock for my family, at keeping things going, but she's my little reminder, telling us what we're forgetting, keeping track.  She's so strong, so amazing!!!  Yes, the situation really sucks, but we are so blessed with these kids.  <3  I couldn't have asked for better children.  All of them are amazing! 

I appreciate the prayers from anyone that took the time to pray for us.  I never thought that we would ever need prayers like this, but obviously they are working.  This could have been way worse.  As tired as we are, I feel like a weight has been lifted off of me with this.  I know to lean on Him when I need strength.  He is my strength, He is my refuge.  Thank you for your prayers.  <3


  1. Em is amazing young lady. I wish I could read this and not cry! Those pictures to the right don't help any! She is one tough gal! I am so glad the day is over and the port is placed and on its way to healing. Im sorry placement was difficult - what is easy for poor Emily? The drive to Shands will be so much easier not having to worry about IV pokes! I sure hope & pray port makes IV days a bit easier and no infections. You now have another job- "Port Police"! You have the right to be picky and make sure the person who access her port is nothing but the BEST! Nice to hear inflammation markers are better than they were last year. That is confirming you are on the right track!
    Hang in there...Get some rest! i hope the pain is decreased each hour for Emily and the port heals beautifully! Hugs to your sweet Em and entire family!

  2. Danielle, I cannot thank you enough for posting this blog. Being a mom with RA I worry so that my youngest daughter is going to follow me on this path. Through your blog Emily's courage has made me realize if she can do it with such grace so can I. Should my daughter have to go down this path then she too will manage...we all find a way. I am so happy for Em knowing that the infusions are going to be so much better for her in the future. It sounds like it was a very long and emotional day. You are all so very lucky to have each other. Em chose wisely when she chose her parents. She chose the ones who were the strongest and most compassionate to help her through all that was to come. I hope she heals quickly and is back to her cheerful bouncy self! ((HUGS)) for you both.