New Power Port central line

What a full Thursday!!! But luckily everything came together beautifully for Madeleine's surgery, it was just the 18 hours leading up to it that were pretty tough on all of us.

Nighttime in the hospital just isn't what it used to be. Madeleine made it very clear she knew it wasn't home and her bed. She fought hard to stay awake most of the night after little power naps between people waking her. 4:30 am I was finally able to get her into the crib and lay down myself. By 8:45 we were heading to radiation. Thankfully we kicked up enough dust the day before that we got the call while she was under RT that the surgeons were ready for her (this was about 9:30). Awesome!! Even better was that our clinic nurse and the anesthesiologist elected to help us by transporting her while still under sedation through the tunnel back to the hospital and up to the surgery floor - so, so cool of them because they really didn't have to do that and it's very likely we could have lost that add-on spot if they hadn't. I turned her over about 10:00 (see how fast it happened!?) and grabbed a coffee to wait. Around 12:30-1ish we got the call she was moved to recovery and we spent over an hour with her in the PACU until the docs could confirm the line placement was not having any effects on her heart. They later came and explained that the end of the line is slightly deeper in the left atrium and that it will allow her to grow with the line, though at the same time they have to make sure the lung is safe and the line is not causing irregular heartbeats or bothering her in the least. Everything appears to be a-ok. She was released to the floor and then discharged by about 5pm. We hurried to pick up sister and go home to relax. Mama, Daddy & Madeleine are all exhausted, and poor Sister is a ball of energy!! It's a bit difficult for her to understand why she has to be gentle playing with Madeleine because she is likely sore across her entire chest area. They removed the double lumen from her right side and installed the port back on her left where the very first CVC was. So 7 surgeries in 11 months - our baby girl is amazing!

We still had to wake up for radiation Friday morning and they used the new port without any issue. I also got to see it when they removed the needle and it looks like nothing :)

This afternoon she has been playing more and chatting away so it's likely she's not experiencing any pain. It's raining today and most of the weekend so we'll spend most of it resting, recuperating, baking and watching movies in our jammies - these are the weekends memories are made of, spending quality time together as a family.

Surgery Thursday?

Waiting in admissions today

It's still a little bit up in the air; Madeleine is an add-on to the surgery schedule, and we did everything this afternoon to plead and demand that she be put on tomorrow without question. It turns out there was a pretty big miscommunication. There is absolutely no reason for Madeleine to be inpatient. This kind of surgery is almost always an outpatient procedure, unless of course you're already here for other things. They decided to admit her in order to get her in the operating room faster than scheduling her for outpatient, except that she's not scheduled! We went round and round with this, down to us basically saying we're leaving today if she's not guaranteed a spot Thursday since Friday's schedule is already overbooked. We may be difficult, but ultimately we will never apologize for being Madeleine's advocate. It is completely unreasonable for a 13-month old infant/toddler to go all day without eating to accommodate a coordination schedule. Period.
We have urged surgery to please take into consideration her age and the fact that she couldn't eat a double cheeseburger before fasting as a means of making her the priority add-on case to get her in as early as possible. Please pray they are able to do this for her. When a baby's entire life is to eat, sleep and play, and all of these things are disrupted, it's disappointing, frustrating, all around upsetting. We are definitely keeping our fingers, legs and toes crossed we've pleaded our case enough that they want to make Madeleine a happy baby tomorrow.

Curve Ball- Surgery this Week

A few weeks ago, Madeleine had some "muddy water" under her clear dressing cover, indicating something wasn't quite right and we did a course of antibiotics and changed to a gauze dressing to prevent infection. Over the last few weeks, we've continued to change her dressing every other day. The problem is, the little girl is on the move! - you can't hardly contain her long on your lap or in any one space, she has to find her way to her bedroom from the living room, from her room to the kitchen - she's always exploring (side note: Jeff and I don't exactly believe in "babyproofing;" of course we make the house safe but we don't put up baby gates and confine the kids to any one area...though I think we might be changing that soon...) As a result of her mobility and activity, as well as being picked up and/or trying to wiggle out anyone's arms, the cuff that was previously under the skin holding the catheter of her central line the last 8 months slipped out last week, and as of this weekend, is all the way hanging now and the catheter itself basically slides in and out of her bore hole in her chest, not making for the most sterile of situations. In clinic yesterday the docs and nurses took a look and debated all afternoon: she needs the line replaced. It's just far too vulnerable now.

double lumen catheter

Mama will take Madeleine into radiation tomorrow morning and wait for the call from the office. Most likely the insurance will authorize the surgery and she will be admitted sometime on Wednesday and have the surgery on Thursday. If all goes well she could be discharged Thursday or Friday, all the while still attending her radiation therapy sessions and receiving the chemo. They are also strongly considering switching to a port instead of the double lumen that she has now, very similar to a Broviac, which is most common. This is probably the best photo I have of her line after it was placed.

March 2012

This surgery will be Madeleine's 3rd central line; the first one was placed last January on her left side and was removed after the sepsis; the current and 2nd central line replaced the "dirty" one she had and they moved it to her right side and into the jugular vein; I'm not sure exactly where this next one will go. The benefits of the port seem to be much better than the double lumen in that we don't have to clean it every single day, it will be under the skin and she can take a bath (yay!) and not worry about it getting wet, and be a more "normal" kid. Bummer it has to happen now but ultimately probably the best thing she could have if she has to have it at all. So what's a few more days in the hospital after everything else? Piece of cake. Which we'll actually be missing since it's her Nina's birthday on Wednesday :( but I guess we can just make up for it this weekend. More info to come.

Madeleine doing work

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