Saturday, July 13, 2013
When we were first told that Avery had to undergo open heart surgery, to de-stress, I began making her some custom hospital gowns to wear while recovering from surgery (since I thought that the hospital-provided gowns weren't very cozy, warm or cute). The doctors and nurses went crazy over them because they enabled quick and easy access to check her incision and her pulse...plus, she looked adorable! Other moms asked me where I purchased such cute gowns and a light bulb went off: what a great way to give back to the heart community after they had been so supportive of our family. I started making and donating the hospital shirts (called Peek-A-Boo-Boo™) in August 2013 and have been the recipient of grants from PNC and Hearts of Hope S.E. Michigan, as well as the benefactor of generous donations from family and friends.
The Heal-A-Boo-Boo Project is meant to provide some normalcy for families of babies and toddlers undergoing surgery or other medical treatments. Hospital visits are no fun...especially for little ones. Nothing helps make them more comfortable than soft cotton wrapping them in a warm hug while ensuring they don't miss a stylish, tiny step in these adorable shirts, Peek-A-Boo-Boo™. Please pass along this site if you know of children who could use a hospital shirt and legwarmers: www.sassybambino.com.
Monday, June 3, 2013
In the meantime, here are some pictures of Avery...
Wednesday, May 29, 2013
Monday, May 27, 2013
Saturday: Avery got moved to the regular pediatric cardiology floor exactly 24 hours after her surgery finished...woohoo! Here's a picture of us getting ready to move:
After getting to the main floor, Avery finally got to eat. She had woken up crying for ice cream, so that's what she got. She even fed herself!
Avery's last x-ray came back clear, so we're just trying to get her to nap now. Seems like she's getting back to her sassy ways...God, we love her! ;) Now, if we can just get some rest...
Saturday, May 25, 2013
Last night made for a long night. Thankfully, our social worker was able to get us a room at the PICU Ronald McDonald House, which was awesome. Doug was able to get a good night's rest and we were able to take long, hot showers there this morning. Because Avery is in the PICU bay, there isn't a lot of privacy, so the Ronald McDonald House (just down the hall from the PICU), has been a Godsend...clean, private room, food, snacks and a Keurig!
As for me, I slept on the pull-out chair behind Avery all night. I was so exhausted that I had no problem falling asleep...just staying asleep! The PICU wasn't nearly as noisy as I thought it would be, however, Little Miss Sassy Pants has to have yet ANOTHER uncommon feature: with anti-anxiety meds, she has the reverse reaction..they make her hyper. The medical staff tried several, but nothing worked. Lucky for me, Avery's nurse, Mary, was able to be with her all night so I could get some rest.
She had another chest x-ray in the middle of the night and it showed that her heart was englarged compared to yesterday's post-op x-ray, so she had another ultrasound this morning to rule out fluid around the lungs. Everything looks good for now and all she has is a line in her neck from where the anesthesia went in and a morphine drip. If her last round of bloodwork shows her electrolytes are up, the line in her neck will come out and we'll be able to move to the regular pediatric cardiology floor.
Doug and I can't express enough how appreciative and overwhelmed we are by the love and support we have received. We started this whole website/blog/FB page to make it easy to share info about Avery's diagnosis and surgery without having to retell all of the facts several times over...and it has brought several people into our lives that we have never even met or whom we haven't spoken to or seen in years. So, thank you, from the bottoms of our hearts.
Final picture of the day...here is Avery's posse...our loyal support group of grandparents, uncles, girlfriends and Godparents who have been with us every step of the way...including a 6am start time at the hospital yesterday. We love you all very much and couldn't have done it without you:
Friday, May 24, 2013
This is the toughest day of my life. I barely slept last night and when I did, I had nightmares.
We have a contingent of nine people here with us this morning, but Doug and I are in the family waiting area, just trying to calm down a bit. We met Avery's surgical care team and everyone was wonderfully kind. Dr. Ohye also stopped in to say hi and was reassuring as always.
The main concern is the alternative anesthesia. With the family history of malignant hyperthermia on Doug's side of the family, the anesthesia team has been prepping for more than a week for Avery's surgery. It is incredibly rare to have to treat someone so young as if they have MH and even more rare to do this treatment in a cardiac surgery. So rare, in fact, we were asked for our consent for U-M to publish a case study on Avery. She is one in 100 for her heart defect and 1 in a million for her anesthetic care. I've always said she's one in a million, but no parent wants their child to be THIS rare...
Regardless, we know she is in good hands. They gave her some medicine to get sleepy and although she acted like she was dozing off, every time the doctors or nurses left, she popped her head back up, started jammering and tried to get up and run away. Hmmm...I think we know how she will be as a teenager... ;)
I will update more later, but thank you all again for you support and prayers!
Wednesday, May 22, 2013
When we got to the hospital, we were promptly whisked to a room to get her weight and height, but were then told that an echo wasn't ordered. After half-an-hour of waiting, I went to find someone to figure out what was going on because the little boy in the room across from us, who had just come in a few minutes earlier, was already getting his EKG. Meaghan, a Mott social worker, happened to be walking by and I think she sensed I was upset, so she came into our room to go over all of the "extras" for Friday's surgery: where we will be going, sleeping arrangements, procedures, facilities, etc. She also arranged for us to have a tour of the ward after Avery was done with her appointments. Meaghan was a definite blessing!
Finally, Avery was brought in for her echo and EKG. She was SUCH a good girl. I cuddled up with her on the bed to watch Shrek and as a whirlwind of people came in and out (research study rep, social worker, child life specialist, radiologist), the only time she got upset was when someone stood in front of the TV or talked over her movie. Ha! At one point, the radiologist came in to take some additional images, which worried us...we had been afraid that they would find additional issues during this echo...
We had a bit of a wait to meet with her new cardiologist, Dr. Fifer, who was wonderful. Avery got to see her favorite nurse, Veronica, and was quite happy to play with the Matchbox cars in the room (the Chaborek in her). Click here for a video of Avery checking out the view...she sure loves looking out the window!
The wait was well worth it, though, as Dr Fifer had excellent news: one of the holes in Avery's heart actually decreased in size, therefore, decreasing the pressure on the walls of her heart...the main reason for the immediacy of her surgery. The largest hole (4 mm) had not decreased, but we were so happy to hear that the pressure wasn't as high. Dr. Fifer also talked about how this surgery should be the end of her heart issues and that she will be able to do all of the things other kids can do...even play soccer and hockey like her mama. :) In addition, she said that because Avery is so fair-skinned, it is very likely that her scar will fade almost completely and that in the years to come, it will be almost unnoticeable. I'm glad the fair complexion I passed on to her--that I often curse for making me look pasty--is actually an advantage in this situation.
After meeting with Dr. Fifer, Child & Family Life Services took us to the ward where Avery will be staying once she is out of the ICU. Each child has his or her own nurse solely dedicated to them, which is amazing. The ward was very nice and Avery was soooo excited to see the great playroom stacked with toys, books and art projects...I think she thought we were at Toys "R" Us! All of the nurses and doctors were going crazy over how cute she was in her little Puma track suit and bows, so I am sure she'll have no shortage of new friends!
We then we down to the anesthesia/pre-surgery department where we spent close to an hour. With Doug's family history, they will be taking extra precaution with Avery's anesthesia and will likely be giving it to her through an IV versus gas. This can create some complications in heart surgeries, so please keep in your prayers not only the surgeon's hands, but also the anesthesiologist's expertise. Again, we are incredibly blessed to not only have Dr. Ohye as her surgeon, but she will also have the head anesthesiologist working on her team!
Unfortunately, our day of testing and meetings was not over, so we headed to radiology to get a chest x-ray and then off to the lab to get blood work. What a way to end a long day for the poor nugget: getting strapped to a chair with her arms above her head for an x-ray and then getting poked for blood! Interesting side note: the x-ray showed three more teeth coming through in the back, so that would explain her picky eating habits lately.
So, right now, Avery's surgery is scheduled for 8:30am on Friday, provided there aren't any emergency surgeries that would bump her. We'll find out for sure late Thursday afternoon. Here are a couple of photos of our little cutie yesterday:
Thank you for your continued support and prayers. I know the power of prayer has helped shrink one hole, so let's pray for a successful surgery and easy recovery!
Also, happy birthday to my wonderful hubby, Doug...what a way to spend your birthday, but you sure are a dedicated husband and father. We love you!