Ok, here is the rundown of our (Bing's) day, yesterday.
5:20 am they woke Bing up to get showered and ready for the Electro Physiology test.
6:00 am I arrived to smooch on, cuddle with and pray over Bing before he was wheeled off.
6:30 am came and left
7:30 am came and left
8:15 they finally came to get him. Mind you, they told us to be at this place at 6:30 but no one showed up to the office, or answered the phone until 8 am.
Bing had to be awake for the procedure so that they could get an accurate portrayal of how his electrical system works. If he is sedated his heart rate drops and everything is generally skewed.
They inserted several catheters through his groin and up into his heart. They then mapped his heart with electrical impulses. They were able to stimulate an arrhythmia that sent his heart beat up to 300. Unaware that he was still conscious, but unable to speak, they shocked him to regulate his heart. Bing describes this procedure as Japanese torture. He was awake and helpless while they poked, prodded and shocked his heart... I can't even imagine.
About two hours later, they determined that a valve was not yet necessary and that we would go ahead with the defibrillator. They promptly wheeled him back down and began the surgery.
He was awake for this procedure too, although much more comfortable, I believe he described it as going to the spa in comparison to the first procedure. They made an incision just below his left collar bone and manually stretched his tissue into a pocket that could house his new hardware. They gave him the "good" unit that has two leads into his heart, rather than one. The two leads mean that he has less chance of being shocked inappropriately, we like this.
We escaped open heart surgery, and valve replacement, this time around. Eventually, Bing will need his valve replaced but the longer you wait, as long as it is safe, the better. Technology only gets better with time, and replacement valves degrade at a faster rate than your original equipment. So, we are praying for miraculous leaps and bounds in research and development of heart valves.
I have lots more that I could write on the subject of Bing's heart but I'll save some for later.
We thank God for the amazing network of friends and family that have been praying for us and supporting us through this week. We are exhausted and broken but we are also hopeful and on the road to recovery. We love you all and are so very thankful for everything you have done for us.
Tuesday, June 30, 2009
Monday, June 29, 2009
Here we go
Thanks everybody for all of your support, prayers, and well-wishes. I love and miss you all. - Bing
It is the morning of Bing's Electro Physiology test. The kind nurses woke him up at 5:20 this morning, I got here a bit before 6:00.
Mom and Dad Myers are on their way over from Spokane and are picking up Piper on the way. Marcia is back at the condo with Maddox and the phone calls have started. I brought my charger with me, knowing full well the amount of texts and calls that will be exchanged today :)
Bing's older sister, Tiffany (aka Sissy), took Maddox back to the harbor on Friday and brought him back yesterday. Their whole family seems to have really enjoyed the visitor, despite several MASSIVE blowouts. I sent a jar of prunes for Maddox and as it turns out, he only needs a spoonful every couple of weeks. He ate the prunes on Friday and is still having amazing "movements" three days later.
Apparently, Maddox had poo in his neck rolls, armpits and all over his legs. Sissy had poo all over her arms and legs and a nice spot on her carpet :) Better you than me Sis!
Maddox slept with Sissy and her husband Nick, and according to the stories I heard was not a very peaceful sleeper. He slapped, kicked and wiggled and at one point fell asleep with a handful of Nick's chest hair. What a little sweetheart.
Cousins, Adara and Danica, spoiled him with unending affection and playtime and even shared a Popsicle and an apple, only to pull it away with mass quantities of baby slobber all over!
I forgot to pack my camera cable, so I am unable to post pictures, but the second I am able I will share every single one of them.
***********
On another note. One of Bing's doctors graduated with my Cousin, Jarred Freese, some of you might know him. He is kind of a big deal. Anyway, Amanda Shepherd says hello to the Freese Family. She is super sassy and she gets my humor. Smart cookie too, she is only 26!
Amanda is in the front row on the far left.
It is the morning of Bing's Electro Physiology test. The kind nurses woke him up at 5:20 this morning, I got here a bit before 6:00.
Mom and Dad Myers are on their way over from Spokane and are picking up Piper on the way. Marcia is back at the condo with Maddox and the phone calls have started. I brought my charger with me, knowing full well the amount of texts and calls that will be exchanged today :)
Bing's older sister, Tiffany (aka Sissy), took Maddox back to the harbor on Friday and brought him back yesterday. Their whole family seems to have really enjoyed the visitor, despite several MASSIVE blowouts. I sent a jar of prunes for Maddox and as it turns out, he only needs a spoonful every couple of weeks. He ate the prunes on Friday and is still having amazing "movements" three days later.
Apparently, Maddox had poo in his neck rolls, armpits and all over his legs. Sissy had poo all over her arms and legs and a nice spot on her carpet :) Better you than me Sis!
Maddox slept with Sissy and her husband Nick, and according to the stories I heard was not a very peaceful sleeper. He slapped, kicked and wiggled and at one point fell asleep with a handful of Nick's chest hair. What a little sweetheart.
Cousins, Adara and Danica, spoiled him with unending affection and playtime and even shared a Popsicle and an apple, only to pull it away with mass quantities of baby slobber all over!
I forgot to pack my camera cable, so I am unable to post pictures, but the second I am able I will share every single one of them.
***********
On another note. One of Bing's doctors graduated with my Cousin, Jarred Freese, some of you might know him. He is kind of a big deal. Anyway, Amanda Shepherd says hello to the Freese Family. She is super sassy and she gets my humor. Smart cookie too, she is only 26!
Amanda is in the front row on the far left.
Friday, June 26, 2009
UGH
The Electrical Physiology test has been postponed until Monday. Bing gets to come stay at the condo with us for the weekend as long as he is never alone and refrains from anything fun. Monday morning at 6:30 we head back to University of Washington Medical Center for Bing's test which takes a minimum of 3 hours and could go as long as 6 hours. This will answer a lot of questions such as: will they replace his pulmonic valve, will he need a pacemaker, will he need a defibrillator, how much longer will we need to be here etc...
The good news is that they feel he is stable enough to leave the hospital for several days and that this is less of an emergency than they originally let on. Sure, it needs to be dealt with, but they have the luxury of taking their time and testing him to be sure they are doing what is best and what is needed.
We continue to be grateful for everyone's prayers and support.
We love you all!
The good news is that they feel he is stable enough to leave the hospital for several days and that this is less of an emergency than they originally let on. Sure, it needs to be dealt with, but they have the luxury of taking their time and testing him to be sure they are doing what is best and what is needed.
We continue to be grateful for everyone's prayers and support.
We love you all!
No Emergency Yet
So... they are taking their time and doing lots of tests. All of the tests, although time consuming, make certain that they don't perform a surgery that isn't needed. After meeting with three doctors (one of which saw Bing the last time he was flown into Seattle), we got some fuzzy answers and a plan for tomorrow. His heart is no worse than the last time he was seen. Since his condition hasn't progressed, they are hesitant to do a valve replacement, as it is a major surgery and not necessarily the answer to our problems.
They will be doing a test tomorrow where they insert some "wiring" in through his groin, up the veins, and to his heart. This allows them to deliver shocks and monitor how his heart is wired. Because he has had corrective surgery (at 14 months old) he has some scars in his heart, these scars can act as a short circuit, where the "electricity" goes round and round the scar and doesn't make it to it's destination. During this procedure, if they find such issues, they can make, what is essentially another scar, to close the circuit so that the "electricity" is routed in the right direction.
If this goes well, and they determine that Bing's issues stem from "electrical" problems and not from his valve, they will not replace it. He may or may not be getting a pacemaker and/or a defibrillator.
This test will answer a lot of questions as far as how long we will be here, and what they will ultimately do to Bing. If he doesn't have to have his valve replaced we may be out of the hospital as soon as Monday.
Bing's former Aunt has an amazing apartment overlooking downtown and the Space Needle and has made it available to all of us, and has agreed to accommodate me when everyone else has to return to work. It is ten minutes from the hospital and she even has a cute little porto-crib so I didn't have to bring my pack-n-play.
For all of you Medical people that read this... don't judge me for my terminology and limited understanding of all of this. I took notes and everything but I am in a pitch black room with Maddox relating all of this from memory. Feels like college!
I know and believe that God is bigger than all of this, he has a plan that is better than anything we could have dreamed. I believe that this is a blessing from which Bing will enjoy a better quality, and much longer life. We truly appreciate all of the love, support, and prayers that have been extended to us. Thank you for being available, even if I haven't called you back.
They will be doing a test tomorrow where they insert some "wiring" in through his groin, up the veins, and to his heart. This allows them to deliver shocks and monitor how his heart is wired. Because he has had corrective surgery (at 14 months old) he has some scars in his heart, these scars can act as a short circuit, where the "electricity" goes round and round the scar and doesn't make it to it's destination. During this procedure, if they find such issues, they can make, what is essentially another scar, to close the circuit so that the "electricity" is routed in the right direction.
If this goes well, and they determine that Bing's issues stem from "electrical" problems and not from his valve, they will not replace it. He may or may not be getting a pacemaker and/or a defibrillator.
This test will answer a lot of questions as far as how long we will be here, and what they will ultimately do to Bing. If he doesn't have to have his valve replaced we may be out of the hospital as soon as Monday.
Bing's former Aunt has an amazing apartment overlooking downtown and the Space Needle and has made it available to all of us, and has agreed to accommodate me when everyone else has to return to work. It is ten minutes from the hospital and she even has a cute little porto-crib so I didn't have to bring my pack-n-play.
For all of you Medical people that read this... don't judge me for my terminology and limited understanding of all of this. I took notes and everything but I am in a pitch black room with Maddox relating all of this from memory. Feels like college!
I know and believe that God is bigger than all of this, he has a plan that is better than anything we could have dreamed. I believe that this is a blessing from which Bing will enjoy a better quality, and much longer life. We truly appreciate all of the love, support, and prayers that have been extended to us. Thank you for being available, even if I haven't called you back.
Wednesday, June 24, 2009
Please Pray
After collapsing into convulsions and a trip to the ER, Bing was flown to Seattle to undergo emergency heart surgery. Maddox and I are still in Billings waiting to find a flight out to be with him. I'll try to keep you posted either here or through Addie's blog. Please pray for Bing's safety and recovery, and my wild emotions.
Tuesday, June 16, 2009
Mobile Maddox
Maddox was playing nicely in the living room so I went to the kitchen, ten feet away, to get a cup of coffee. When I turned back around, Maddox had dumped my purse, and all of the Milk duds that were in it. He smacked his lips a couple of times, indicating that the dud in his mouth was making him salivate even more than usual. I felt around in his mouth for the dud and found nothing, but he continued to work his mouth and drool sweet caramel. I finally pried what looked like a caramel retainer from the roof of his mouth.
About half an hour later I found Maddox laying on his back with his feet propped up, looking at a magazine! Unfortunately I didn't get a picture, but Maddox sure showed me a sassy side today.
About half an hour later I found Maddox laying on his back with his feet propped up, looking at a magazine! Unfortunately I didn't get a picture, but Maddox sure showed me a sassy side today.
Monday, June 8, 2009
Well Baby Visit
We had Maddy Max's 9 month visit today and he is perfectly wonderful.
Stats:
Length 28 1/2 inches... 55th percentile
Weight 19 lb 13 oz... 45th percentile(yes, lighter than last Thurs)
HEAD 18 3/4 inches... 96th percentile...Yikes!
Stats:
Length 28 1/2 inches... 55th percentile
Weight 19 lb 13 oz... 45th percentile(yes, lighter than last Thurs)
HEAD 18 3/4 inches... 96th percentile...Yikes!
Thursday, June 4, 2009
Where to start?!
Since it has been so long, there is a lot to update you on!
Maddox has both of his bottom front teeth.
He weighs 20lbs 2 oz
He refuses to crawl, and is no closer to walking...good for me!!!!
He loves the baby swing at the park
He love, love, loves animals, fire, and water. All of these make him wiggle and squeal with delight.
He is a wonderful camper. This point gets extra emphasis because Bing and I were there for the twins first attempt at camping and it did NOT go well. We were nervous that he wouldn't like the tent, the new sounds and smells, dad's snoring etc... He was a champ the first time, waking up twice but settling back down. The second time, he slept for 13 hours straight, not a peep, a grunt, or a cry. We actually checked him several times to be sure he was breathing!
I bundled him up in a footed sleeper and his snowsuit with hand flaps to keep every little bit covered and warm. He was sleeping on his stomach and looked like a kid that had fallen down with arms outstretched and then couldn't get up. It was very funny, yet sweet.
He eats solid food at every meal and is weaning himself from breastfeeding. He only wants me in the morning and right before bed. He does, however, love to bounce his face off of my chest which makes me laugh and then he looks at me with a scrunched up face and kind of snort/laughs.
Bing is really enjoying the construction business and seems to be quite good at it. I am working 3 to 4 days a week at the wine bar while Bing stays with the boy. We are seriously hoping that we will win the Lottery so that we can afford to do more of the things that we love, but mostly so that we would be able to jet back and forth between MT and OR. We've been missing all of our family out west and Bing longs for more temperate weather:)
More pictures to come!
Maddox has both of his bottom front teeth.
He weighs 20lbs 2 oz
He refuses to crawl, and is no closer to walking...good for me!!!!
He loves the baby swing at the park
He love, love, loves animals, fire, and water. All of these make him wiggle and squeal with delight.
He is a wonderful camper. This point gets extra emphasis because Bing and I were there for the twins first attempt at camping and it did NOT go well. We were nervous that he wouldn't like the tent, the new sounds and smells, dad's snoring etc... He was a champ the first time, waking up twice but settling back down. The second time, he slept for 13 hours straight, not a peep, a grunt, or a cry. We actually checked him several times to be sure he was breathing!
I bundled him up in a footed sleeper and his snowsuit with hand flaps to keep every little bit covered and warm. He was sleeping on his stomach and looked like a kid that had fallen down with arms outstretched and then couldn't get up. It was very funny, yet sweet.
He eats solid food at every meal and is weaning himself from breastfeeding. He only wants me in the morning and right before bed. He does, however, love to bounce his face off of my chest which makes me laugh and then he looks at me with a scrunched up face and kind of snort/laughs.
Bing is really enjoying the construction business and seems to be quite good at it. I am working 3 to 4 days a week at the wine bar while Bing stays with the boy. We are seriously hoping that we will win the Lottery so that we can afford to do more of the things that we love, but mostly so that we would be able to jet back and forth between MT and OR. We've been missing all of our family out west and Bing longs for more temperate weather:)
More pictures to come!
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