Updates... Good and NOT Good...

GOOD:
John graduates on Halloween! HE DID IT! I am so proud (PROUD PROUD PROUD) of him... more on that later. (And a huge post following the graduation ceremony, of course!)

House hunting was unsuccessful - - and successful - - all at the same time. The trip with my mom and the kids proved to be a good one, in that we found the area that we want to build our new nest. We did not, however, find a house.

John and I also flew down for the day (really only three hours from the time we picked up our rental to the time we turned it in) to see one house that we thought was the "one." It turned out to be a dump. The trip wasn't a total loss, though, because John spotted a "For Rent" sign on a home that hasn't been heavily advertised. My mom so generously offered to help us look, so we are paying for her travel expenses and she is down south right now checking out that house and some others on our behalf. Fingers crossed, please!

NOT GOOD:
More stressful and concerning than making moving arrangements and setting up our new nest is what is going on with Miss Gracie...

Gracie has always had major GI difficulties... MAJOR. I have posted about them on this blog before. Years of cyclical migraines, gastritis, intolerance to fat, intolerance of significant volume, small bowel lymphoid hyperplasia, slow emptying, GERD... the list is really endless. Anytime she is stressed or sick, it first manifests in her little gut. We have always struggled to meet her caloric requirement for growth & nutrition. Proper hydration is always a concern. On a good day she will barely meet her maintenance requirement... as of late, a good day is rare. And, without proper hydration so many things occur - - headaches, poor digestion, irritability, etc. So it is truly a vicious cycle... and one that we can't seem to resolve.

Since her pacemaker generator replacement, she has down spiraled with her ability to tolerate her feedings. Her weight has plummeted to a a mere 25.4 pounds. No one knows what to do next... and I have truly never been more terrified. It's taken me days to post about this because I was hoping that by some miracle I could post about the problem and the solution, but there isn't one. I fear that her little body is rejecting nutrition, and coupled with Gracie's newest behavioral issues regarding feedings, she is rejecting her feeds. Her brain and her body are working against her...

I have had numerous conversations with her GI doctor... it's so unsettling that she doesn't know what to do next either. I think of all the things we've already tried over the years... a nissen fundoplication, bypassing her stomach (she had a G-J tube for almost two years with no change), drip feeding her nearly 24 hours a day, keeping her G-tube vented so that she constantly can relieve any gas pressure. In general, a slow, constant drip feed seems to be the "best" way to feed her, but hinders her mobility, prohibits her from any gross motor work, angers her to no end because she feels "tethered" to the feeding pump and pole, and offers her little Independence because an adult is always one step behind her with the pole in tow. We've tried bolus feeds (where she gets a large quantity of formula through a tube and syringe over a 20-30 minute period). She has never tolerated a true bolus - - even at 5 1/2 years old, she can't tolerate much more than four ounces over 30 minutes and because her motility is slow, she can't have another feeding for at least three hours. Today and yesterday, she threw up more than she kept down. Her night feedings are not well tolerated at all... we have to dilute the richness of the formula and feed her very slowly in order to keep her from coughing, retching and grinding her teeth in discomfort all night. Unfortunately, we HAVE to feed her at night to 1) try to keep her hydrated and 2) any calories she gets during the night are crucial. These issues coupled with her already "very iffy" sleep pattern results in a very long night in our home. (Gracie is famous for the 'night parties' she has usually several times a week. She has never required much sleep and often gets it in two segments of time at night with a several hour gap of wakefulness in between.)

I worked so hard to get a little weight on her before her surgery... but at that point, she wasn't insisting on her feeding pump being "off." (She signs "food" and "off" and is very insistent about it. Eventually, she will just sign "off off off" over and over until it's disconnected.) And, by "insisting" I am not just talking about her signing. If I tell her "You must eat" or use her timer clock to show her how much more time there is, her behavior becomes more self-injurious. She will bang her head, smack her fist into her mouth or smack her head. She will work herself up into a sweaty frenzy and then throw-up because of it. So, really, I can't win. It seems that she is for most feedings, having either true discomfort and pain - - or significant behavioral issues that result in emesis.

She tolerates the feeding pump much better in the car or the stroller - - I think because she is not hindered by it in those settings. Knowing that, I thought that our road trip down south would allow time to "fatten her up," but because she was sitting up (either in her car seat or the stroller) most of the day, she was really uncomfortable and didn't tolerate feeds well at all. She coughed, had increased secretions and would cry the minute she saw the tubing coming near her. And, she was always so relieved to be back in the horizontal position. She never fussed about being upright as long as she didn't have to eat.

And... in all of this, I have to consider that the more obsessive behavior regarding her feedings is her way of communicating. She might be trying to exert control in her life - - we all want some control, why would she be any different? She has very few things that she truly controls... and really, when you think about it, how incredibly frustrated would you feel if someone were constantly trying to make you eat? Is she expecting that it will be uncomfortable and thus reacting accordingly? For her whole life, we have always said that it would be so much easier and more comfortable for her if we didn't have to feed her. And... the other sad part of all of this is that she wants to eat orally so badly... she loves to taste food and begs to eat when we do... but she cannot swallow. It's a cruel irony.

Then there are all of the changes that have occurred in her life... perhaps increased "gut" sensitivity is how her body is coping with all of the stressers. John's sporadic appearances over the last 6 months, her Papa has been gone since July, Gracie's nurse left in July, one of her home-hospital instructors stopped seeing her, she started school in August, she had surgery in August... these things are all BIG things and BIG changes in her life and it would certainly make sense if her body was reacting to them in this way.

So, between the obvious discomfort with her feeds and the behaviors she's exhibiting, it's incredibly difficult to feed her. One of her medical "team members" actually said to me last Friday, "She is tube fed, so you really can force-feed her if you need to." I was completely flabbergasted by this... I already feel like we are force-feeding her... and it's wrong on so many levels. There is real pain for her and I have to sit there and look into her eyes and make her deal with it... I am actually causing her pain by feeding her. No wonder she has behavioral responses when it's time to eat. If we continue on this path, we will lose her emotionally - - she will not trust us, she will "check out" of the world, I am sure of it. But on the flip side of that, I cannot begin to fathom what we will lose if we can't get this under control. Medically, if something were to come up for her, her little body is so underweight and malnourished that she has no reserves. I am terrified and so is John.

John's Assignment - A Migration of the Flock!

Well, it's official! John has his assignment...
SOUTH LOS ANGELES
The Flock will be migrating south in November.

John did a ride along in Torrance (in what will be his office) on Saturday night and then drove home to get back to the Academy Sunday night. A whirlwind weekend for him. We were supposed to have been down there last week and over the weekend w/ John (my mom, the kids and I) to scout areas (neighborhoods, school districts, proximity to LA Children's and/or UCLA or Children's Hospital Orange County) but both of the little Swanns were sick and we couldn't travel.

Gracie narrowly missed a visit to the hospital last Sunday and Monday... her lungs sounded terrible and between the coughing and sneezing, I was constantly suctioning her trach, her mouth and her nose. Needless to say, she wasn't very fond of me for a couple of days... I was always "bugging" her. All the coughing wreaked havoc on her stomach and her gastritis flared up something terrible. She feels so much better now, thank goodness, and despite being very "junky" with her secretions, she is back to her little sassy self. I missed her!

Since Gracie was kind enough to "share" with her brother, Preston got the "ick," too, although his was mostly in his little nose - - which is now raw from Mommy wiping it all the time. Vitamin E oil works great to soothe, though, and he likes to have it rubbed on... thank goodness for small favors. He does NOT, however, like it when I use Gracie's suction to clean out his nose! It's SO worth the battle, though - - since he hasn't yet mastered the nose-blow, it's really a handy little tool to have! He also is cutting another molar and has a little fluid in one of his ears. The "great" thing was that he could tell me - he pointed to his ear and then signed & said "Ow." I immediately called the doctor and we went in to get his ear checked out... and got some pain relief drops.

I felt on the brink of getting completely nailed by the bug (as did my mom) but we managed to avoid getting the full blown flu like the kids. Now that everyone is on the mend, we are going to try and go down this week to find a place to live. I was originally thinking we wouldn't do this until after John graduates (due to the crazy timing) but with all of the logistics involved in moving (and moving Gracie, specifically), it would be easier to know where we will be landing.

So much to arrange for Miss G... medical supplies/equipment, private therapy services, school placement, home hospital instruction, a new IEP within 30 days of her placement in the district/county, a new Regional Center & caseworker, a new CCS caseworker, re-applying for CCS physical therapy, a new Medi-Cal caseworker, THIRTEEN NEW doctors and specialists... and the list goes on.

Since she just missed a week of school from being sick, I feel a bit guilty pulling her out again to go find a place to live. But when I look at that list, I realize that this is what's necessary... and if I don't make arrangements ahead of time, it will be Thanksgiving before she is placed anywhere in school... then it will be difficult to get things (especially an IEP) accomplished before the Christmas break and before you know it, it will be January. So... I am trying to get over the "pulling her out of school guilt!"

Wish us luck in our house hunt... we are picky... and since we will be keeping our house here and (hopefully) renting it out, we will be broke! NOT a good combination!!!

On the bright side (and it IS bright!!!):
We will be VERY close (perhaps even the very same neighborhood) as the Dodd family, our dear friends in CHARGE. Preston and Reuben are exactly one week apart and, I have a hunch, will be great pals! Gracie will LOVE the climate and be able to be outside more - - it won't be too cold or too hot (Goldilocks?!). I'm sure once Preston sees the beach, he will turn into a mini beach-bum! It will be an adventure... and we will make the most of it!

Odd Coincidence: John and I have always moved this time of year. We bought our first house together 10 years ago this month. We bought our current home 7 years ago this month - - the longest I've ever lived in a house. And now, we are moving again in the fall...

In loving memory of Lucas Weindorf

It is with a very heavy heart that I post...
Our CHARGE community is mourning the loss of Lucas Weindorf who passed away yesterday, October 2, just shy of 17 months. He lived a very short, but immensely love-filled life. While we don't know the Weindorfs personally, we follow their journey through the Blogger network and CHARGE listserv. Their loss is unfathomable... and yet there is some peace to be found in the grief, knowing that he no longer suffers and no longer struggles. He is, to quote the family's post yesterday, "Resting in such sweet peace now and patty caking with the angels forever..."
Whether you pray, send positive thoughts or meditate... whatever your faith... please think of them as they bury their sweet son on Saturday and begin the healing process.

Some people dream of angels,
the Weindorfs held one in their arms.

The "Dream Sheet"

The "Dream Sheet" is the list of available office locations and the number of positions in those offices for new officers. The cadets have a few days to put them in order of preference. If any of the locations are within 60 minutes from your home (per MapQuest), then certain other factors are considered... whether you own a home, whether you have a school age child, whether you have children of any age. We have all of these things... not to mention a few other major "considerations"... but since none of the 150 available positions (in 31 different cities) are within the 60 minute rule, it doesn't matter. We knew that this was a possibility from the start. It was part of our dozens of late-night-into-the-morning heart-to-heart talks regarding John pursuing this career path. So... for us, the "dream sheet" is really no "dream" at all. It was just a fact sheet.

For John, the placement will be based on two things: his class ranking and the last four digits of his social security number... and we'll just go on record saying that his SSN is really low and the high numbers get priority. John received the list last Monday (the 15th) and we met for dinner during his Wednesday night liberty to finalize our pickings. (We had to prioritize all 31 locations.)

We find out Monday morning (the 22nd) where he will be assigned. It's so surreal. We will know Monday where we will (likely) be moving. My (slightly) educated guess (based some info we have from more than half of the cadets in his class) is that it will be the Oakland office or somewhere in Southern California. I really don't think that any other part of the Bay Area is a possibility.

We'll see... my motto on this particular subject is... "It is what it is."

Filling in some blanks (catching up)

While I've been very detailed on some posts (you can say it... I've been wordy!), I have left out some key updates. Some by choice at the time, some due to lack of time to fit it all in. So, in no particular order, here are some of the "blanks."

JOHN:

With his return Sunday, he starts week 22 of 27 in the Academy. For the most part, it has flown by - - for both of us - - for different reasons. It's a weird phenomenon, actually. The days are long, but the weeks are fast. Does that even make sense?!

I haven't updated much on him - - he's just taking it day-by-day. He's not really over-enthused about me sharing too much at this point - - he doesn't want to jinx anything as he still has several very crucial weeks to go.
The guys that he knows (other cadets and current officers) who've also been through actual Marine and Army boot camp say that the Academy makes boot camp look a little more like summer camp. It's definitely the hardest thing John's ever done voluntarily... he'll be the first to tell you that. (I say "voluntarily" because some of the events in our lives since Gracie was born have been equally difficult, but in vastly different ways, of course.)

Here's the latest: He has recovered from his two fractured ribs. Yes... fractured ribs from the mandatory boxing! He did great during the wrestling event that they had a couple of months ago... (the "old" man that he is - - only three or four other cadets are older... out of a starting class of 212) so he felt good about that. But the boxing... well... he got matched with the only guy in his company who has formal boxing experience. Need I say more? Anyway - - the ribs kept him out of PT for about 10 days. He requested to go back to full activity and they allowed him after carefully reviewing a second set of x-rays.

He has dropped 15 lbs in the Academy and a total of 30 lbs since we started our own "Biggest Loser" (friendly) competition last summer.

GRACIE:

Due to some changes and "issues" with her IEP, she is now considered a Kindergartner. So... I feel a little robbed that what was thought of in my Mommy Brain for the last month as her "first day of Preschool" was actually her "first day of Kindergarten" but, to keep her current level of services, I will get over it. Her grade placement will be discussed again in April... so maybe my Mommy Brain will get a second chance!

She's had a whole bevy of appointments! Cardiology, CardioThoracic Surgery follow-up(with another follow-up needed as she appears to be rejecting a stitch), Pulmonology, Dentist (she LOVES this!). She will have a much needed GI follow-up this coming week - - she's now lost all of the weight I managed to put on prior to her surgery. Several issues contributing to this: the stress of the surgery wreaked havoc on her gut (but she's handled it marvelously) and she's REFUSING to be hooked-up to her feeding during the day. This "refusal" is at home only... she is FINE in the car or in the stroller. "Stinkery" behavior... and a real battle to fight considering she needs every drop of fluid for hydration and caloric intake... UGH. Wish me luck on that one.

Drum roll, please... Miss Gracie has officially started sleeping in her room again! (Thanks in GREAT part to Nana... the "Gracie Whisperer!") For those of you not-in-the-know on this particular subject, Gracie has not slept regularly in her room since late in the summer of 2006. We have had what we referred to as "nightly slumber parties" in our family room. It's a very long story as so many factors contributed to this "family room/bedroom" situation... so I won't go into it! But, the fabulous, miraculous news is that it's FINALLY over! :-) Now I sleep (ON AN ACTUAL) bed in her room... I haven't slept on a real bed in my own home (with the exception of two nights) since I was two months pregnant with Preston! No more couch, floor or airbed for me! WOO HOO! Nana is my (and my back's) hero! And I am so proud of my big girl!

And, more news on Miss Gracie - - she has her first loose tooth. This is also very "big girl" of her and terrifying for me! I have feared this day since she stopped all functional swallowing. The dentist reassured me that once it's loose enough, I can dab a little Orajel on her gums and grab the tooth with some gauze and twist away. Knowing Gracie and her affinity for deep oral pressure (loves flossing, tooth brushing, the dentist, jaw input... you name it!) she probably would like it better without the Orajel! Anyway, there is a loose tooth and I will update here when the tooth fairy books her appointment at our house!

At the dentist... it may be difficult to tell from the photo, but she really enjoys herself!

PRESTON:

While on the subject of teeth... he had his first dentist appointment. Unlike his sister, he did NOT enjoy it. He was perfectly happy both before and after, but definitely not during! See...


Both kids are in the no cavity club :) just like Mommy! Hopefully, they will continue on that path!

Anyway, back to Preston. His vocabulary is expanding each hour, it seems - - both sign and verbal. He just went to the doctor and at 16 months weighs in at 23 lbs, 6 oz. and is 32". His pediatrician thinks he's going to be tall. We'll see! He comes from tall stock... on both John's side and mine many of the men are/were over 6 feet... several of them well over six feet! Only time will tell and I am not anxious to rush that! After Preston did a bit of "showing off" and I answered all of his questions, he looked at me and said, "I have absolutely NO developmental concerns." Music to my ears :-). (Not that I have any... it's just a really nice thing to hear!)

He had his first haircut (which he LOVED!) back in June at 13 months. The shop we took him to has chairs that look like cars and airplanes for the kids. Preston thought he was Mr. Cool and couldn't get enough of looking at himself "driving" in the mirror! I had asked for just a trim and it ended up being a true "little boy" haircut. I was sad... and vowed to let it grow out and look "babyish" again. It's getting a little long and "flowy" and probably time for me to give in to the scissors (at least over his ears)! The pictures from that impromptu first haircut are on John's cell phone which hasn't been transferred to our computer. Perhaps sometime this winter I will get to that!

In May we had a joint birthday party for the kids... a fabulous day at McKinley Park in Sacramento. The weather was beautiful, as was the day. In my attempt to thank our family and friends (many of whom had traveled so far to be there), I stumbled all over my words and got so very emotional (big surprise). We waited a long time to have a "real" party that Miss Gracie could attend. While she didn't have the greatest day (nothing like the day she had on her actual birthday in April), she did really well for where she was at that time. It was incredibly special to have so many of the people who have lovingly supported us throughout the years there with us to celebrate.

I hardly took any pics because I was too busy! Thankfully, family and friends all shared theirs. Hundreds of great photos... too many to post... but I had to share this one of Gracie (actually one I did take!) and a collage of Preston that I have titled, "How To Eat a Birthday Cake."

Bidding farewell to summer

Gracie's feet and Preston's feet.
Hers with fading tan lines... His with dirt and grass...
as they should be!

I can't believe that summer is almost over. The crisp, cool mornings and nights and the (finally) moderate days are a welcomed change. The kids love being outside and, since it's not so blazing hot, Gracie can hang out for a long time without overheating.
We spent a couple of hours outside on Monday morning playing and doing chores. Preston wasn't even dressed yet... still in his pajama shirt and no pants! I couldn't help but grab the camera for a little photo shoot.
As I have been reminded by posts of other bloggers, they will not be this age next summer and my memories of the minute specifics will fade as time passes and my mind alters them. So, I need to soak up the little details... their laughter, their sounds, the way their feet look, the way they play - - all of these things will be different next summer because they won't be five and one. Kind of sad... makes me want to freeze time.
So, since I can't literally freeze time, here are my attempts to capture the last few moments of summer and the sparkle it made in my kids' eyes.


Gracie's favorite backyard activity - - scooting over to any shaded area where she can reach into the planter (or wedge herself up the edge of the brick) and then pick up a handful of dirt and sprinkle it across her face. NOT SO FUNNY... this creates panic and mess for Mommy! Clearly this isn't good for her trach (goes without saying), her mouth (she can't swallow the dirt) or her eyes (she can't blink it out). Nevertheless, she LOVES to do this and it makes her laugh. Again... NOT SO FUNNY! She also thoroughly enjoys doing this with bark at the school and park playgrounds... not quite as dangerous... and still NOT SO FUNNY! Her second favorite thing is to play with any trimmings that she's given. Flowers, little twigs with leaves, small branches... You name it, if it's green, she loves it! Oh... and I can't forget how she loves the misters. She can lie under them forever, giggling and voicing over her trach as the gentle mist cools and tickles her skin. She absolutely LOVES that and doesn't care how soaking wet she gets!


Preston loves all parts of being outside. Watering, riding his tricycle, pointing out dog poopies that need picking up (by literally pointing at them and saying "ew"), smelling the flowers, picking the flowers, climbing the things he's not supposed to (this is an exhausting workout for Mommy!), giving flowers to Gracie, bringing any discovery or tool he's used over to her so that she, too, can partake (which melts Mommy's heart and almost makes her forget that he just climbed something he wasn't supposed to!).
He loves to "help" and doesn't really know that he's just a toddler. He thinks he can lift and move things five times his size... and he makes the cutest grunting noises in the attempt to accomplish impossible tasks. (Picture Olympic weightlifter grunts coming from a 16 month old!)
If he were allowed, he would stay outside all day. He is highly allergic to grass, though, and if he doesn't have on shoes, his little feet break out and get raw. Ouchie. Like his sister, he loves the misters and they make him squeal and giggle with delight in the way that only a child can.

A day at the zoo with my "monkeys"

As my mom and I strolled through the Sacramento Zoo with the kids today, this sign caught my eye and I had to take a picture of it!
And watch out, because sometimes I do "bite" to defend my family!

It was the 3rd Annual "Deaf Day" at the zoo and since the weather was reasonably cool until the late afternoon, it ended up being a really nice way to spend our day. (It also gave John a chance to study at home for a change, given that our house was very quiet for most of the day!)

This was the first zoo visit where Gracie enjoyed herself and really took notice of some of the animals. Preston was very excited about the monkeys (lemurs, actually) and, since he could hear many of the primates throughout most of the small zoo, he spent a lot of time saying, "Ooh, ooh, ahh ahh" and bobbing his head!
Favorites (easiest to see, too) were the zebras and the giraffes. Both kids also liked the small turtle that was near the grass where we sat and had lunch. We topped off the afternoon with a stop for some yummy treats at Freeport Bakery... a perfect way to end any day!

I didn't take as many photos as I would have liked - - and unfortunately, none of Nana, who often manages to get behind the camera instead of in front of it. But here are a few!


These next photos aren't all "zoo" photos - - some were taken at our zoo-like home on Thursday! At the zoo, it was difficult to get clear pics of the chimps grooming each other, as they were behind some very "finger-printed" glass. But, the photos I took on Thursday of Preston trying to suction Gracie and then kiss her reminded me of how the animals today were so lovingly caring for each other. No... I am not comparing my children to chimps... but do look and judge for yourself!!! :-)

Pacemaker

This is a photo of the actual pacemaker generator that was implanted into Gracie's abdomen in 2004. This might seem a little "creepy" to some that we have it. And, truth be told, I shuddered a bit when Gracie came out of the OR a couple of weeks ago and they said, "Here's her old pacer." (It has been cleaned/sterilized for those of you who are wondering...)

It's most definitely a surreal thing to hold in your hand the actual device that has literally been keeping your child's heart beating. But, in addition to surreal, it's absolutely wonderful to know that this little tiny device (a computer, essentially, that measures approx. 1.5"x2") did it's job so very well. I will keep it for her... someday she (or even Preston) might want to show it to friends!

Her new pacemaker is an adult size - slightly bigger, has even more capabilities (technology advanced within the last four years) and should last her at least twice as long. So, hopefully, her leads (the wires that go from the pacer to her heart) and the generator can be replaced at the same time in approximately 8+ years.

We had a little "drama" regarding her pacemaker while she was in the hospital. I didn't post about it when she came home... it's a little "topic" all in itself.

About two hours after she came out of the OR, she started having what appeared to be pauses (or skips) in her heart rate and it appeared that the pacemaker wasn't fully functioning. The representative, who was in the OR when the new device was implanted, quickly came back to the hospital and spent over an hour with us and the on-call cardiologist. The pacemaker settings were adjusted, the rep gave the doctor a short "education" on the new technology, helping us all understand that she wasn't actually heading toward heart failure and then spent some time with just John and me answering more of my questions about what had just happened. Really, it wasn't a "big deal" but, until we knew that, we were nervous. What was uncovered in the rest of our conversation was where we found the true drama.

On August 5th, Gracie was to have her pacemaker checked at the cardiologist's office. Upon our arrival, it was discovered that the office staff failed (for the second time in a row) to coordinate the appointment. It just so happened that there was a rep in the office from another company who was there to meet with another patient. It just so happened that the individual used to work for our Pacemaker company and that there was a computer available in the office that belongs to our company. (I am not naming the companies involved... there aren't many... and if you look at the picture of her pacemaker, you already know that company's name! There is a lot of hospital hoopla aka: politics going on in our area between these companies and our hospital group... so rather than trash in public forum, I will provide info about the "lesson" we learned and if anyone wants more info privately, I will happily share there.)

All that should have happened is a check of Gracie's pacemaker generator life... no changes should have been made to any of her settings. Additionally, any changes made must be ordered by the physician, approved and printed for the patient's chart. At that visit, we learned that Gracie's generator had a one to eight month generator life and just under a four month mean. In other words, depending on settings and her body's use of the remaining generator life, there would be an expected "just-under" fourth month life. Worst case scenario... a month. That was August 5th. Fast forward to August 28th - - surgery day and the rep from Gracie's company coming into her room and talking to us.

She said, "She was in back-up mode when she came into the OR..."
I said, "Really... are you certain?"
"Yes... I interrogated the device before she even went under anesthesia."
My concerned and confused reply, "Well, on August 5th she still had a one to eight month range. How was she already in back-up mode when no changes were made?"

She looked stunned and asked if I had been given the device. I gave it to her... and she "linked to it" (still a "live" device until the generator is completely out of juice... wild, eh?) and informed us that the amplitude setting had been changed on August 5th from 3.0V to 5.0V and that is what ran down the generator's life so quickly. Never in the history of her use of the pacemaker had her body required that setting to be above 3.25V. She printed it out for me and I held it... studying it... and I realized that something terribly frightening and inexcusable happened on August 5th. Had we waited any longer for the surgery (which was the initial intent of the cardiologist because we had a "little time" still), we would have ended up in the ER with Gracie showing signs of heart failure.

The individual from the "other company" had changed her settings... whether by accident or not is unknown. Regardless... it's inexcusable. What we learned from the rep the afternoon after surgery is that no one should be checking that device that isn't from the company who makes it. Period. Our doctor had okay'd the check by the other person... as had I... because everyone said it was fine to do... so who was I to think that it would be a problem. Additionally, it would have been the second time in three months that the office neglected to coordinate the appointment and I knew that it was imperative to check the remaining life.

I wasn't made aware of any changes to her settings and neither was Gracie's cardiologist. Come to find out that our hospital was (at the time of that appointment) in negotiations to contract with this other company exclusively... and that Gracie's device was the last implanted at our hospital from that company... and that nurses/docs had to fight to get it done as scheduled... it's all a bit suspicious. This was a terrible "education" to get, but one that I needed in order to protect my daughter. Needless to say, that mistake will not be made again and I have an appointment with the cardiologist's office to discuss the events further. I don't know what, if any, action can be taken, but I intend to continue making noise about it... not to be litigious, but to prevent this from happening again to someone else. We were very lucky - - the outcome was good... others might not be so lucky.

Happy to be home

First of all, thank you so much to each and every one of you for your emails, texts, calls and posts. Your support is appreciated beyond words.

I am happy to report that Miss Gracie came home just as her fabulous surgeon, Dr. Mainwaring, anticipated! She was discharged almost exactly 48 hours after coming out of the OR! This was, by far (and including the surgery, believe it or not) the easiest hospitalization she's ever had. She only needed Tylenol to manage the pain and we came home with Tylenol w/ codeine just in case she was sore from being more active. TROOPER!

She went into the OR smiling - - this was not "goofy juice" induced, either - - the fact that she was happy and calm actually made me very nervous as it has never happened before. I literally started to panic as we walked away from her with her arms and legs happily flitting about on the gurney and we could hear her laughing over her trach. Thank goodness John was there to calm me down and assure me that she was going to be fine. As she woke, we were frantically trying to figure out if she was trying to sign "hurt" or "medicine" (she was pointing her finger and trying to touch her other hand... both arms with IVs in, so it was hard for her to move and hard for us to tell) but I quickly realized that her pulse ox probe was taped to her finger (she is used to it being on her toe) and I promptly moved it for her. She immediately relaxed and went back to sleep. She woke later, smiling, signed "happy" and was in a pretty good mood. She napped periodically and then had a wonderful night's sleep (as hospital stays go) on Thursday night. Friday was Gracie's more "typical" hospital behavior... despondent, non-communicative, staring into space. The only actual response I got out of her were a few smiles in the morning as I gave her a sponge bath and she gave nurse Nicole (not her nurse that day, but who has cared for her before and she came in to say "hi" to her) a big grin. Otherwise, with the exception of telling me "all done" a couple of times, she just wasn't "there." And, boy did I miss her. She slept a total of maybe three hours between 8pm and 8am... we were both exhausted.

Saturday morning was busy with discharge activity and included the most difficult part of the stay for Gracie - - removing the IVs so excessively taped on each arm. It felt as though it took hours as nurse Sarah so gently tried to remove the adhesive and get the tape off of her skin. This was not pleasant... the most unpleasant it's ever been actually, and I made a note to myself to discuss with each anesthesiologist in the future... use more cotton or gauze under the tape so as to save my little peanut's skin and arm hair... OUCH.

Then, we were sprung. Gracie's been happy, fairly busy and pretty much her normal self... just a little slower and more hesitant with Preston - - you can actually see her brace herself when he is near. We kept her ankle bracelet on (Nana's brilliant suggestion!) because Preston is very aware that it's there and he says ouch whenever he sees it. It seems to be helping remind him that he needs to be careful.

A big thank you to the staff sergeants at the Academy who generously and compassionately gave John liberty from Wednesday night until after surgery on Thursday. I knew I could get through it without him if necessary, but was so incredibly grateful to have "my rock" and my "PIC" (Partner in "Crime", Partner in Children, Partner in Craziness, Partner in Chores, etc.) by my side. He is the reason that Miss Gracie was so calm as we waited for surgery.

And a super big thank you to Nana who took such good care of Preston while I was with Gracie. It gave me such peace of mind knowing he was in the best hands in the world.

(More to follow on the pacemaker itself...)

Surgery this week... and an anniversary of sorts

On August 25, 2004, Gracie was admitted to the hospital for scheduled open heart surgery - - an ASD repair and mitral valve repair. As heart surgery goes, not too complicated (although when that surgery is for your child, it's all too complicated). We were told the average hospital stay was 5 days... we braced ourselves for "more than average" given all of the intricacies of CHARGE Syndrome and expected that Gracie would be inpatient for about 10 days. Ten weeks later, she was discharged... with a 'repaired' heart, an internal pacemaker and a tracheostomy. All things, for the most part, went as planned on August 25, 2004... but the days that followed brought many twists & turns, few ups, many downs, excruciatingly terrifying moments and agonizing decisions. I don't dwell on the date of August 25th (it does live in my memory) and I am not particularly superstitious, but I do have a "thing" with dates.

So, when I met with Gracie's surgeon two weeks ago to discuss her pacemaker generator replacement (I always called it a "battery"... who knew? ) and he gave me two dates - - August 25 or August 28, I jumped on August 28. He noted my preference and said his office staff would call and let me know. I did not tell him that it was the "anniversary" of her first surgery, although he had her chart in front of him and quite possibly realized. I just explained that it would be better for Gracie and school, therapy appts, John's ability to be around more over the weekend, etc. I did not breathe a word about my sheer terror of having another "August 25" surgery... but in the back of my mind, I was thinking, "why on earth should we tempt the 'date fate'"? So, when talked to his office and they confirmed "Thursday, August 28th," I was so relieved. And, to be totally frank, I am not sure why. The 28th was no picnic four years ago either. But, I associate the 25th with "before her surgery" and "after her surgery."

The bulk of Gracie's complications were not related to her heart at all. In fact, the issue was her delicate airway that was further damaged by the ET tube (the ventilator tube) and once she went into respiratory failure, she became completely dependent on the external pacemaker and, thus, was implanted with a silver-dollar sized pacemaker on September 8th, 2004. The trach followed on September 15th.

I will always wonder in the back of my mind what that 10 week stay did to alter her path... how much different would she be developmentally had she not been deprived of oxygen so many times? Or had toxic CO2 levels? What if she hadn't been so heavily sedated for three weeks? What if she hadn't needed her trach? Would she still have needed yet another and another open heart surgery? What if... what if...? I will never forget the four failed extubations, the look of sheer terror in my husband's eyes when he was always my pillar of strength, the crash cart that sat next to her crib and then just outside her room for over two weeks. I will never forget holding her as she slowly turned a dusky grey and started slipping away from me... over and over... as we tried to put off the inevitable trach (the trach that was supposed to be "temporary" and is now, based on three opinions, a likely "life sentence"). I will never forget not seeing her face for three weeks because she was intubated and covered in tape to hold the tube in place. I will never forget any of it. But I don't think about it too regularly... if I did, I'd be certifiable.

I think of it just enough to remember how far she's come. I think of it to remember how we got to the other side of it all. I know that I can't change any of the things that happened. I can't turn back the clock and make people do things differently than they did then... and there were some mistakes made, I am quite certain. Nothing will change that, though. Instead, I marvel at where she is today given what she's been through in her life - - her birth, the NICU, the PICU (repeatedly) and what she's been through since those ten fateful weeks. Her road has been bumpy at best... with many other medical struggles, both GI and neurological.

I marvel at where she is today because TODAY (Sunday) she spent over an hour in her gait trainer... happily. TODAY she wore her glasses for over twenty minutes before she threw them off. TODAY she wore her hearing aid and sat independently on the floor while we played finger games. TODAY she played at her bar and bench, side-stepping back and forth, standing up and sitting back down for over a half an hour. TODAY she protested because I gave her (what I thought was) much needed down-time and she was bored. TODAY she gave me some doses of "challenging" behavior because now that she's doing more, she's got more attitude! TODAY, she blew (actually, threw) Preston and me kisses. And, TODAY, when she was saying "bye" to her daddy for the week, she signed "I Love You" without any prompting - - she just waved and signed "I love you." She's happy, she's super loving and social, and she's growing, changing and making great strides each day. I choose to dwell on that.
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Please think of her this Thursday as she goes in to have her pacemaker generator changed. For all intents and purposes, this is a fairly "routine" procedure (a surreal thing to say about my five-year-old and her pacemaker) and barring any complications with the leads (the electrical wiring that goes from the pacemaker to her heart), she should be in surgery less than an hour and in the hospital two days.