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.

Amber is recovering well - post 11

Good news. Everything is going as well as planned and even better. The pain issue was finally controlled in the middle of the night and everybody finally rested well from about 3-6am. Amber had an X-Ray at 6am and everything looks good. She got to eat breakfast and ate Fruit Loops (see the picture reel to the right of the blog) and they are going to test how her body does with the fat, and if it goes right she'll be put onto a regular diet. If her body doesn't absorb the fat properly, she'll need to be on a low-fat (aka no flavor) diet for a few weeks.

Amber has been awake most of the morning and has been quite talkative with Jamie and I, but not Dr. Hillman (it is as if she recognizes that he did this to her). She even talked to Christopher on the phone this morning.

The plan is to remove her arterial IV and catheter soon and hopefully her chest tube later tonight. That will leave her with just two standard IVs. They are also going to start working on transitioning her pain meds to something we can administer at home. If this goes well, SHE WILL BE GOING HOME TOMORROW :)

Amber awake and talking - post ten

Amber was just awake for about an hour and was talking with Jamie and I. She was doing pretty good for about ten minutes when the pain really started bothering her and she then cried for the past forty five minutes. We are all encouraged by her being awake as long as she was, but discouraged by how uncomfortable she became. They are increasing her continuous pain med to try to make her more comfortable when awake. We'll find out if it worked once she awakes again.

Nothing new to report - post nIne

Amber continues to sleep due to her medicine. In fact, she is dreaming well as she keeps making cute sleeping sounds. She has been waking up in pain every so often and they give her more pain meds and she falls back to sleep. They tried removing her oxygen mask earlier, but her o2 levels dropped so they put it back on. Brother Chris came to visit with grandma and grandpa swack for a little while and amber woke up briefly to see them.

Christopher was full of questions about everything in the room and the stuff hooked up to his sister. I think we have another life science guy in the making :)

Amber in room - post eight

Amber is now in her room resting. She will be kept asleep most of today so she doesn't move around much. She is up on the eighth floor in the ICU. She is sleeping and told Jamie to "leave me alone" because she is sleepy and hurts :(

Visitors are welcome but it's best to wait til Friday because she will be sleeping most of today and they want the room to stay low key today. She can have two visitors in her room at a time, but no kids.

Now we start the slow road to recovery. So far, everything has gone according to plan. Next step is to get rid of the oxygen mask which will hopefully happen soon.

Surgery is over - post seven

Well, everything went as it was supposed to and the operation is over. They are now waking her back up and will hopefully be removing the breathing tube before moving her to her room upstairs. We will get to see her in about an hour. Dr. Hillman said the ring was pretty tight so it's good that it has been removed and he saw an immediate difference in her esophagus. The trachea will take a little longer to expand because it is made of cartilage. Amber's asthma has hopefully been cured :)

Amber in surgery update - post six

Just got an update from Sarah saying everything is going as planned. Dr. Hillman is at the point where he is ready to cut the piece out that is causing the problem. Next update in an hour. So far, so good :)

Amber is in surgery - Post Five

Amber is officially in surgery now. Sarah just informed us that they needed two less IVs than anticipated so she won't have a chest line or an IV in her foot. So far, so good. Posted some pics too and I'll add new ones as I have time.

Amber is in surgery prep

Jamie, grandma and grandpa and myself just left Amber's side and she is now being cared for by the staff. She was given a sedative with us present that made her pretty loopy and she is now getting officially anesthetized and prepped for the surgery. Now we get to play the three hour waiting game. I'll post again when we get an update in about an hour.

Surgery delayed - post three

Just spoke with Sarah, amber's NP, and Amber's surgery is delayed until 7:30am tomorrow. The patient they are working in right now is in worse shape than they thought so that surgery is taking longer than expected. Please keep the little guy in your thoughts.

We'll try it again tomorrow bright and early.

Details We Learned Today - Post Two

We now know when everything is on. Today we met with Amber's nurse practitioner (Sarah) and surgeon (Dr. Hillman) as well as the child health specialists who did a great job of showing Amber what is going to happen to her.

Amber's surgery is scheduled for 1:00pm tomorrow at the children's hospital on the "A" level. We were told that it should take about three hours from start to finish and that she will be asleep before they do anything (even inserting IVs). They used a doll to show Amber where she will find tubes when she wakes (possibly 6 total tubes sticking out of her), and they showed her where her room will be.

Amber will be pretty much out of it all day Wed and into Thu with the hopes that she is ready to go home on Sat. She will be in the ICU so only two visitors will be allowed in her room at a time up on the 8th floor. No children other than Christopher are allowed in the ICU. We were also informed that only one of us parents will be allowed to stay the night with her (which really sucks!)

Probably a sleepless night for us. Your thoughts and prayers are appreciated :)

What is a Vascular Ring?- Entry Number One

Welcome to Amber's blog. Let's begin by looking at exactly why Amber is having this surgery and what it involves.

Amber has what they call a vascular ring that formed at some point during her early development. A vascular ring is the result of the aorta (your body's biggest artery that feeds into the top of the heart) not forming properly, and this can result in several different types of vascular rings. Amber's actual condition is a right turning aortic arch, but the picture below shows the problem well.

Amber's particular ring is a result of the aorta turning the wrong direction (right instead of left). This results in the aorta and some of the other vessels around it wrapping around the esophagus (food tube) and trachea (wind pipe) - as you can see below.

 The picture above is not Amber's exact problem but very similar. What they will do is cut the green piece shown above out and it should remove the pressure on Amber's trachea and esophagus. Removing this piece is pretty simple according to Dr. Hillman because there is not much blood flowing through this area. In fact your body no longer needs that piece once you are born, as it was only needed during development in order to deliver nutrients from the umbilical cord to the newly forming baby.

The symptoms of a vascular ring include:
Acid reflux (Amber's first year had more food coming up than staying down)
Persistent coughing (another one Amber is good at)
Troubled breathing/asthma symptoms (Amber is on three asthma medications)
Repeated pneumonia's (ONLY three so far this year)

Our doctor discovered this accidentally at her last post pneumonia check where they did a chest X-ray to make sure it was cleared up. The radiologist noticed something weird in a corner of the picture, and an upper GI test, CT Scan, ECG, and more X-rays confirmed this was the case.

For those of you who have the stomach to watch it, the video below shows the actual procedure she will be having. It is even of a patient with the exact same diagnosis as Amber.