Friday, November 30, 2012

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.

Wednesday, November 28, 2012

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.

Monday, November 19, 2012

Radiation half way done

Madeleine has had two full weeks of radiation clinic- no eating 6 hours before the treatment, getting up before everybody and silently leaving the house, westside traffic, find parking, fight for a spot in the elevator, wait for anesthesiologist (sometimes), carry our precious girl into the Linac, then hold/play with her till she feels the sedation medication. (If you've ever had the unfortunate experience of holding a small pet being put down, this is very comparable; no matter the frequency, it still feels & looks the same). I rarely watch her face as she goes under just because I literally feel sick to my stomach. I gently close her eyes with my hand give her a kiss and place her little body up into the head pieces made especially for her, and leave, heading back to the exam room. She's usually out of my sight for about 20 minutes until I hear the heart monitor coming down the hall. Then sit and wait another 20-30 minutes for her to wake up from her induced nap. Madeleine wakes up quickly, even moreso than the average afternoon nap- she usually manages to get her knees under her and her face on the sheet in 7 seconds and the Nurse or I better be quick to stabilize her before she rolls to one side as she comes to. She then will nurse before we leave, sometimes falling back asleep in the comfort of mommy.
On Tuesdays our day is 3x as long; after radiation clinic we go upstairs for hem/onc clinic and labs. And that's a whole other story of hurry up and wait. By the time we get home Annalise is usually out of her bed and in mine, waiting for us. She comes running to say hello, "you're back" and give us hugs and kisses, one of my favorite moments, though typically short lived. As a family we're all getting adjusted to yet another new normal, before it changes again in December.
sisters 11/8
Dr Lazareff came Friday morning before treatment to look over Madeleine. He said he's really not concerned about the few things we have noticed, such as her eyes wide open or tilting her head backwards to see. She also still has the minor paralysis on the right side of her face. It's not terribly noticeable unless you know it already. There's a discrepancy over what's causing it, though we've talked it over and decided it's of little significance and best to let it lie until after the treatment is over. She is showing signs of irritability, moments where she is really ticked and not even us holding her relaxes her. She has just recently started eating less, both solids and nursing, though it's something we've expected, the loss of appetite. She started the anti-nausea med last week and that has totally controlled her vomiting. 
The hardest part of this treatment is probably the lack of patience we all have for the necessary parts of our every day. It would seem as though the day would be easily planned: radiation in the morning, drive home,  clean the floors, get everybody fed, clean up kitchen, naps (if we're lucky), clean the floors, prepare for dinner and maybe some sort of laundry or other cleaning. Instead, radiation is always dependent upon the group of patients rather than the individual; waiting on the docs; patience in the traffic (405 is a nightmare), etc. Each of Madeleine's feedings is a production that she and I both have little patience for, though I think we're both trying. She hates taking her medicine anymore, the chemo must really taste yucky even though it really doesn't smell. She has been experiencing itchiness all over her face and rubs quite a bit even with moisturizer as well as during meals so we basically bathe twice a day = more time. Saturday and Sunday she gets a break from the chemo and seems to be when she is the sleepiest and most fatigued; she must be catching up from the beat down during the week, though she really has been handling it well. I think all the time how much harder this could be if she could sit up and yell at me what's bothering her, how everything makes her feel, etc. 
We've got another 13 treatments. Not sure yet exactly what the plan is after that. Keep praying to God this treatment works.

Saturday, November 3, 2012

All's Well

After the antibiotics on Friday, we were allowed to go home because Madeleine's ANC is perfect- meaning her immune system looks good and is fighting the infection so she isn't sick. This course of antibiotics will give her the extra punch she needs to fight it off and keep it from getting worse. She is very happy and active like usual. It was an extremely stressful day on Friday though, thinking we might have to admit her to the hospital and working with the insurance company and the home health. For now, all is well and we're taking it one day at a time. Today the nurse came, cleaned her site and changed the dressing again (this is typically done once per week; she's had 4 dressing changes this week) and gave her the antibiotic infusion. We had a friend over this morning to play.

She will have another dose of antibiotics tomorrow, and if the dressing is messy, we keep changing it. We're back to the hospital on Monday for Radiation treatment #3 and Tuesday she'll also go to clinic for labs.

Thank you to everyone who prayed for little Ian Adams. His family posted the following update.

getting better~!

by friendsoftheadams
Ginger reports:
"Ian's viral panel came back positive for the flu virus. They have discontinued antibiotics and will observe for 24 hours to make sure the fever doesn't come back. The plan is to discontinue fluids tomorrow.

Ian & Papa Steve
He is still off the oxygen and Papa Steve (who was with him today so Joey could go to work) reports that he is eating well, napping well and happy!"
Thank you everyone for your prayers and encouragement!!

Friday, November 2, 2012

Quick Update


This morning's radiation #2 went fine, exactly as planned. However, her central line site looks infected - major bummer. We've been stuck for blood and site cultures, dressing and cap changes, and a 24-hr antibiotic infusion. Hopefully the insurance comes through for us and we can get home infusions over the weekend. If they can't, or if Madeleine develops a fever at any time, we have to be admitted. Praying this antibiotic works and prevents her from getting ill!!!!!

Radiation #1

What a day.... for many reasons not directly related to Madeleine's treatment! Lately Madeleine has been waking very early each morning, anytime between 3am and 7am (just for perspective, this is not particularly a family of early risers; we typically begin our day around 8:30-9am).
playing at 6am
The morning after Halloween and getting to bed around 11:30, she awoke hungry at 3am.....and didn't go back to sleep without a vibrating bouncy chair and baby Einstein until 7:30. 7:30!! I was afraid to go back to sleep and miss the alarm.
We finally got to the clinic and I carried her into the Linac  and held her in my arms as they prepped her for the sedation. She talked and stared inquisitively at the therapists chatting with them as the anesthesiologist began administering the propofol. The second she feels that medication she practically jumps off the table clinging to me and vocalizing whatever it is she feels. Her head begins to roll a little bit, her eyes get heavy. Her mouth slightly hangs open and she squeals just a little. As her eyes roll backwards with her head movement, there is something very difficult to put into words. In the past we have not accompanied Madeleine into the procedure room to see this happen. Now in radiation, I've seen it twice, and it is hard to witness. 
I had a hell of a time trying to get her oral chemo medicine while she was in procedure. I went back to the clinic, knowing she would be finishing up, to find her already out. One of the nurses was checking her over, and noticed the dressing on Madeleine's chest covering her central line insertion site looked a little like muddy water- a potentially very bad thing. The next 20+ minutes, between the two nurses and I we removed the dirty dressing, cleaned the heck out of it and replaced the clear covering. Unfortunately that was not the end of it; Madeleine was sent to see a doc as well as a chest x-ray to ensure the central line has not moved inside her body. Tomorrow morning we'll change her dressing again while she's still sedated and replace it with a gauze dressing. There are pros and cons to this: the site will air out a little bit and we'll watch the skin very closely to see if the irritation clears up, gets worse or what. If she comes down with a fever or shows puss from the site, it's fairly guaranteed we'll be admitted to the hospital for possible infection management. The bad part of this dressing is that the site is more susceptible to infection and has to be cleaned and changed every other day. Madeleine hates having her dressing changed, as do most children. We finally left the hospital about 3 hours after scheduled, extremely tired. We came home, had some lunch and played with our toys before taking a good nap.
Friday is radiation treatment #2 and we'll stop by quickly to see her doc before the weekend. All next week she begins around 7am, and has her check-up and blood work next Tuesday.