Quick update on Amber - post 18

Simply put - she is amazing. There have been zero complications from the surgery, aside from infrequent complaints about her incision hurting. If Jamie's ordeal is a sign of things to come, these infrequent pain complaints will not go away. She is currently going through her third cold since the surgery and all three colds have run the normal course of a cold (never thought I'd be so excited over a cold). Big difference compared to the repeated pneumonias, nasal infections, & ear infections of the past.

Though she has not been medically cleared from asthma, I have stopped giving her the Singulair that she is supposed to take, and this was the last asthma medication she was on. I haven't given her any in nearly a month and there is no difference in her. When she plays, she still gets slightly out of breath, but not nearly as bad as it used to be. We haven't even used the inhaler since the surgery. We were told that this may take a year to completely go away, as the cartilage in her trachea needs that much time to expand to normal size. Therefore, she appears to be healing as expected.

Our next step is a visit with the area geneticist in March to see if there may be some sort of genetic link between all of Amber's complications since birth (umbilical hernias, delayed speech & hearing issues, aortic arch, etc.). Unfortunately, we recently found out that my cousin has a genetic condition called Lynch Syndrome - a genetic mutation that significantly increases the risk of a particular group of cancers including colorectal (bowel) cancer; endometrial and ovarian cancer; cancers of the stomach, small bowel, kidney, brain, pancreas, ureter and skin. Most common are bowel and endometrial cancers and the risk can be up to 80% higher than in the general population. This will be a good chance to get Amber screened since we'll already be there, as there are preventative things we can do to prevent this.

We wish everyone reading this post a Merry Christmas & a Happy New Year.

Last posting for long time - Post 17

Amber visited the surgeon's office yesterday for her post-op checkup and we were told that everything is going as planned. Her wounds are healing as they should and much of the glue is starting to come off. In fact, now that she is allowed showers, the glue should all be off within a week. Her progress is going so well that she does not need to ever see the surgeon or cardiologist again, unless something unforeseen comes up. They also predict that she will lose her asthma diagnosis hear in the near future.

We did receive some other good news as well - her swimming restriction is only for four weeks. So, she will be able to go swimming again Labor Day weekend! She will be excited about that :) She still can't ride a bike, jump on the trampoline, or do anything that might put extra strain on her shoulders or put her at risk of taking a violent fall until mid-September. She can however run around, kick the soccer ball, and do most of her normal activities. She spends much of her time riding around in her Powerwheel Barbie Jeep.

Amber has proven to be a beacon of strength and has amazed Jamie and I with her quick recovery. Starting on day two of being home, you couldn't even tell that anything is or was wrong with her. She hasn't asked for pain medication in over four days, though it was given to her one night when she was babysat but I think that was more of a security thing than anything else.

A special thanks go out to Amber & Chris's grandparents for helping with Christopher during all of this and for all the time that they spent with us and Amber the past two weeks (Dad and Sue, your staying with us during the surgery was much appreciated). Also, thank you to the many visitors that stopped by while Amber was in the hospital - I think this really helped Amber work to get better. Finally, thank you to the Boyer family for the meal that helped make the arrival home easier to manage and to the Lutzs for helping to make Chris feel special by bringing him to the Whitecaps game.

Thank you to everyone for all of your support during the past two weeks. I put a tracker on the blog, as I was curious about how many people would check it, and I am astonished that the page has been visited 1,162 times in the past two weeks. Your support and love for our family is appreciated and will never be forgotten. In fact, I am tearing up right now writing this. 

How is this possible? - post 16

Its amazing that three days ago at this time Amber was being sedated for the most part, because you'd have no idea that she had major surgery after seeing her today. She has been up playing all day long, rather than laying (sorry English teachers if I spelled it wrong) around. Earlier this morning she joined me picking green beans and cucumbers in the garden and we checked out the ten pumpkins we currently have. She then drove her Jeep around and has been playing non-stop since then. She ate her dinner well and has rediscovered her favorite snacks. Uncle Bob and Grandpa Swack stopped by and she even lightly rough-housed with them and didn't even wince when she was hugged hard :) She runs (not walks) through the house and is having no difficulty with the stairs. Since she is doing so well I didn't take it easy on her and I whooped her in two straight games of Princess Chutes & Ladders!

Its incredible how quickly she has bounced back from this. Tylenol and Ibuprofen are doing the trick and I'm not quite sure they are even necessary right now (she woke up with all of her medicine worn off and didn't complain about it). Not giving the kiddy vicodin tonight as it made her wiry last night and I finally pulled the plug on the TV at 12:45 am on her :) She is a resilient little girl and our biggest issue right now is how the heck we are going to get the rats' nest out of the back of her hair. Thanks again for all of your thoughts and prayers - they've been working so far.

Amber Happy to be Home & New Pics in Photostream - Post 15

Amber is home resting and doing great. She has watched a steady diet of Max & Ruby (much to Dad's dismay) and is moving around with relative ease. Dad moved her bed out into the living room so she can sit out there and watch movies for the next several days. She is certainly eating up all of the attention and waiting that we continue to do for her. In regards to pain, the ibuprofen and Tylenol mix seems to be doing the trick and she has what I call kiddy vicodin for nighttime. She is also taking a liquid water pill for a few weeks to help flush out her system.

Amber will now be limited for about six weeks. During this time, no swimming or bathes, jumping on trampolines, riding bikes, etc. or any other activity that might cause her internal stitching to split. So, Amber can't do any of the activities that she loves to do. It will be interesting to see what happens once Jamie and I have to start holding Amber back from doing things.

I've included some pictures of her incision just to give you an idea of what they did cut-wise. Its essentially the same incision as what Jamie had when she had her pneumonia surgery.

Several people have asked about visiting and that's fine. Just call or text ahead of time to make sure we will be home. We plan on staying home Sunday. Now that things are settling down, updates to this blog will be fewer and farther between, but I will update as progress is made. Thank you again for all of your support everyone.

Amber is going home - post 14

Everything is good and after paperwork is finished she is going home. I'll give a more thorough update when I get home

Amber's Slowly Getting Better & video - post 13

Amber continues to make some progress, but is still struggling with staying comfortable. Today's been a roller coaster of pain control again. She has spurts where she does great and then she goes through periods of pain (like right now). She has eaten some today and has been talking some with visitors. She was very happy to see her best friend and cousin Maddi today, and has been visiting with Christopher the past several hours as well. Her Grandma Tortellet is here as well, and she got to see her Aunts Colleen & Heidi as well as Uncle Jason. The visitors have been good for her because it causes her to move a little out of excitement and the more she moves, the better she's going to feel in the near future (though it hurts her at the present).

Dr. Hillman is on his way up to remove her chest tube which will help her feel more comfortable, though he told me it will "not be well liked by Amber".

Thanks for all of the comments and checking out the blog. I can't beleive it has been visited nearly 800 times in the past 48 hours. Amber is blessed to have the support group that she has from all of you. Jamie and I appreciate it, too. Check out the short video I was able to record of her earlier:

Two lines out, three to go - post twelve

Amber is sleeping through lunch time due to the benedryl she received for her itching. She had her catheter and arterial line removed two hours ago. Now she only has two standard IVs and a chest tube in her, and hopefully the chest tube will be out later this afternoon. Dr. Hillman still wants her to eat a few more fatty foods before he pulls that out so amber will be happy to have a lunch of Mac and cheese and ice cream :) They have also dropped her pain meds a bit and are using Tylenol and ibuprofen alternately with the iv meds.

Sorry for all of the typos; I've been posting all of these with in iPod.