Owen had surgery on Monday. He had a few different procedures at the same time to limit the amount of time he goes under anesthesia. Needless to say, we spend a couple of days in the hospital with him and he came home yesterday around 2:30 pm. I initially thought he would only stay one night, however, after seeing the feeding tube site on the first day, I realized that nurses or not, we were not ready to go home until we all felt more comfortable with it. The other surgery (testicles etc...) left him with many small incisions, but only really require some bacitracin and being left alone. Those I can handle. The feeding tube site is much better now and I won't go into details.
I spent Tuesday during the day, in the hospital attempting to make sure we had all our ducks in a row with respect to nursing, diet, orders for the feeding tube, equipment that was to be delivered for the feedings and oxygen monitoring during the feeds. I spoke to no less than 10 people, who all had it covered. I spoke to the nursing team. Everyone had it covered. Appointments were set up for Wednesday so Nick would be able to get Owen home mid after noon, the equipment was to be delivered at 4pm, the nurses were coming around the same time to do paperwork and then learn the equipment and it was all going to run smoothly.
Yeah right.
I am pretty sure my blood pressure must have been through the roof last night. Discharge went smoothly for the most part. There was the small issue of Nick leaving the hospital without orders for the nurses with respect to the feeding tube, but if that was all that was going to go wrong, I could handle that. I called, things were faxed and everyone knew what the plan was. (Mind you, at 9pm last night, when unpacking the hospital bags, I found the orders folded up and placed in the bag by my husband, but I digress.)
The nurses came and started paperwork with Nick. I come home a little early so we can all learn the pump together. At this time, its the witching hour for the babies. Everyone is crying and Soledad, the babysitter is trying to keep them busy. Gavin is jumping on furniture, so I am alternating between attempting to sternly (but nicely- there are people watching) tell Gavin to stop jumping on my furniture through clenched teeth, while running into the living room to kiss babies from time to time, because they see I have walked in the door and no one is happy that they are not getting my attention (yes, life does revolve around mommy at this age) and giving as much information as I can to the nurses, who have turned my kitchen into nurse central.
This goes on for a while. Dinner is not going to happen unless I order something. At some point, Soledad has to go home. Owen can't sit in the kitchen because he needs to be laying down. So I pace the rooms, answering questions, calling for chinese and smiling at babies and attempting to feed them, while looking for infant tylenol so the nurses can write down all the doses. Apparently, this is all very technical and an order has to be written for everything they do for Owen, including give tylenol.
In the interim, it dawns on us, that the equipment is around 2 1/2 hours late. Nick makes some calls and "Dwayne" (name has been changed to protect his job, because it's rough out there right now and I would not want to be the cause of him getting fired, although he should be) calls to tell me he will be there in 30 minutes, no more. That was at 6:09 pm. At 6:48, Dwayne has not arrived. At 7:10 Dwayne has not arrived. I call Dwayne because there are 3 nurses in my home waiting to be trained on the equipment. The house feels very full. And I like all of the nurses very very much. Its just busy and the least relaxing thing on earth. Dwayne answers his phone and I pretty much yell at him. He is more than 3 hours late...I have a nursing staff waiting for his arrival...He said a half hour, no later...etc. He says he is around the corner. Great.
The next thing that happens is that I hear yelling out on the street. I am on the phone with the feeding therapist, because we have a new one and we need to schedule for the following week, so I was multi-tasking, on top of my multi-tasking. So I hear the yelling and sure enough, Dwayne has pulled up on my one way street and due to the snow banks, just cannot figure out where to put his van. Dwayne. Park. It. Anywhere. You. Can. Find. A. Spot. EVEN IF ITS UP THE F#$*ing BLOCK!!!!!! The man in the van behind him is screaming as many expilitives as I can think of already because he can't get by him. I run to find Nick, who apparently has already went out there due to the yelling.
Eventually Dwayne finds a dug out "area" to shove his van. It's not a parking spot, or else I would have referred to it that way. Nope, its an area. He brings the boxes inside. I hear honking. Rapid, feverish honking. I tell Dwayne that I think his van is blocking traffic. He stares at me stupidly. (I actually think he thinks I am the stupid one! This just amuses me.)
I unpack the boxes and expect Dwayne, even through the honking, to show us how to use the stuff, because that's what he is supposed to do. On more than one occassion, Dwayne picks up the feeding pump and says, "this is not a feeding pump." To which the nurses say, "Yes it is." So much for Dwayne educating us. Honking continues. Dwayne unpacks our suction machine. WHAT SUCTION MACHINE???? WE DO NOT NEED A SUCTION MACHINE!!! We need a pulse-oximeter, which measures Owens oxygen saturation through his pulse. I know it's difficult, but as someone who is supposed to deliver these products and "EDUCATE" the people who are receiving these items, you would think Dwayne would know what that is. He doesn't and there isn't one to be found.
Honking continues. Nick tells Dwayne, that he must move the van, there is a woman outside having a coniption. Dwayne goes outside. The line down our street is 6-8 cars long. Dwayne gets in the van and IT IS STUCK in the snow (Oh Dwayne, this would because you failed to park your van and chose to instead, shove it in an "area".) A few angered drivers get out and help Dwayne get his van moving. He parks and comes back inside and wants me to sign off on the equipment so he can "get going". I can't do that Dwayne. I am a lawyer. What kind of sense would it make for me to go and sign things that allow you to leave, when I have the wrong equipment. Hey, I have an idea. Dwayne, if you are supposed to deliver things at 4PM, when your company is open and these things can be addressed and recified, THEN DO IT. So I refuse to sign and Dwayne leaves anyway.
Why don't I want to get this man fired, you wonder? Me too. Me too. Anyway, it now takes the nurses another 45 minutes to get the pump working and only because its a new type of pump that they have not used often. I am glad they are there and also worried about what that means for Owen on his first night home with it, without oxygen monitoring.
But in the end, the pump works, the nurses leave (except the one staying the night), the house settles and I finally sit down with my cold chinese food at 9pm for dinner.
The End (of our random Wednesday night).
Thursday, December 30, 2010
Wednesday, December 22, 2010
Random things...
O's surgery is moved to Monday the 27th, so please pray. We go in at 10:45 and it will be a few hours before he is out.
All three of my boys love to dance. Gavin break dances, Caleb does the bounce while waving his hands and Owen lays on his back, waves his arms, kicks both feet and shakes his head no. Its hysterical. When I left for work this morning, this is what they were doing to a song on the disney channel. I will attempt to catch it again and have the sense to videotape it for everyone's enjoyment.
There is a documentary being done about Arthrogryposis. Its called "The Sweetest Gift- Living with Arthrogryposis Multiplex Congenita". As you all know by now, Escobar is a form of Arthrogryposis. Here is the link:
http://www.amcdocumentary.org/
Please take a look. I am now friends with some of these people on facebook or by email and they are truly inspiring, as I know my little O will be.
Its finally here. Christmas is finally here! We have such fun things happening over the next few days! I will soon add the December pics to our picture site, so take a look sometime in the next week.
MERRY CHRISTMAS TO ALL!!! God Bless, be safe and happy!
All three of my boys love to dance. Gavin break dances, Caleb does the bounce while waving his hands and Owen lays on his back, waves his arms, kicks both feet and shakes his head no. Its hysterical. When I left for work this morning, this is what they were doing to a song on the disney channel. I will attempt to catch it again and have the sense to videotape it for everyone's enjoyment.
There is a documentary being done about Arthrogryposis. Its called "The Sweetest Gift- Living with Arthrogryposis Multiplex Congenita". As you all know by now, Escobar is a form of Arthrogryposis. Here is the link:
http://www.amcdocumentary.org/
Please take a look. I am now friends with some of these people on facebook or by email and they are truly inspiring, as I know my little O will be.
Its finally here. Christmas is finally here! We have such fun things happening over the next few days! I will soon add the December pics to our picture site, so take a look sometime in the next week.
MERRY CHRISTMAS TO ALL!!! God Bless, be safe and happy!
Tuesday, December 14, 2010
Owen update, date changes and stuff
Just a quick update for those keeping track. Owen was supposed to have surgery yesterday 12/13 for testicle repair and his feeding tube. Due to a scary respiratory infection, we moved surgery to 12/28. This is better, if you ask me, because nursing starts on the day we come home and it will be nice to not to have to juggle the nurse and the holidays. The nurse will come from 8pm-8am for night feedings among other things, but will afford us the chance to sleep during all the surgeries coming.
Yes, nursing was approved.
Spinal cord surgery has been scheduled for January 20. The good news is that O's spinal cord, where its tethered does not have a fatty deposit, so the neuro-surgeon thinks that it won't re-tether. He said the ones that have issues with re-tethering are usually the ones with a fatty deposit and he has none. So hopefully it will be a smooth surgery and we don't have to ever do it again.
The neuro-surgeon has brought on appointments with the plastic surgeon who will close the wound and the urologist who needs to see how his system works now since the surgery is close to the base of the spinal cord where all your nerves that work the lower part of your body are.
Owen finally got his RSV shot, not that it prevented us from a respiratory infection, however, let's hope it prevented us from having a worse one.
Other than that, its the regular ortho, pulmonary and therapy appointments as usual.
Owen O is doing much better now and has gotten back to his happy little self. He is not eating right yet, but this whole respiratory infection has confirmed for us that a feeding tube over the next few months is necessary. He has lost weight over the week and refused to eat for the most part, drinking 1 ounce here and there. He refused bananas yesterday, with his lips sealed and shaking his head no. He never refuses bananas.
Our pulmonologist had a nebulizer delivered and that has been working well. He is on a low dose of steroids from now through surgery to make sure we don't have this issue again.
Oddly enough, Owen hates Amoxicillan. Who hates the pink medicine? Gavin and Caleb would drink it by choice if they could. But again, I am met with pursed lips and shaking head. Owen shaking his head no is very very cute. It doesn't help with the administration of needed antibiotics, but it is cute.
And that's all folks...for now.
Yes, nursing was approved.
Spinal cord surgery has been scheduled for January 20. The good news is that O's spinal cord, where its tethered does not have a fatty deposit, so the neuro-surgeon thinks that it won't re-tether. He said the ones that have issues with re-tethering are usually the ones with a fatty deposit and he has none. So hopefully it will be a smooth surgery and we don't have to ever do it again.
The neuro-surgeon has brought on appointments with the plastic surgeon who will close the wound and the urologist who needs to see how his system works now since the surgery is close to the base of the spinal cord where all your nerves that work the lower part of your body are.
Owen finally got his RSV shot, not that it prevented us from a respiratory infection, however, let's hope it prevented us from having a worse one.
Other than that, its the regular ortho, pulmonary and therapy appointments as usual.
Owen O is doing much better now and has gotten back to his happy little self. He is not eating right yet, but this whole respiratory infection has confirmed for us that a feeding tube over the next few months is necessary. He has lost weight over the week and refused to eat for the most part, drinking 1 ounce here and there. He refused bananas yesterday, with his lips sealed and shaking his head no. He never refuses bananas.
Our pulmonologist had a nebulizer delivered and that has been working well. He is on a low dose of steroids from now through surgery to make sure we don't have this issue again.
Oddly enough, Owen hates Amoxicillan. Who hates the pink medicine? Gavin and Caleb would drink it by choice if they could. But again, I am met with pursed lips and shaking head. Owen shaking his head no is very very cute. It doesn't help with the administration of needed antibiotics, but it is cute.
And that's all folks...for now.
Friday, December 10, 2010
Thank you....
It's a time of reflection for me. Christmas time is emotional for me because its always been such a happy time of year. Family is all around and everyone is thinking of each other, getting gifts for one another and sharing meals. I have so much to be thankful for this year. I cannot tell you how many people have reached out to us, near and far, some family, some friends, some strangers. People from high school, people from law school, people who have kids with similar disabilities or who don't. I cannot even stop myself from crying while I write this because I am just so overwhelmed by the good people in our lives. Thank you doesn't seem adequate. I am not sure there are any words that can accurately express my or our gratitude.
Not one kind act has been unnoticed by us. I am not sure if we expressed it at the time. Sometimes we are so involved in what is going on, that after we get through a procedure or a crazy day, I wondered, did I seem grateful enough. Or after a letter was written or an email sent, I wondered if I was appreciative enough. If not, I apologize. I am so thankful, so grateful, so appreciative.
Over the summer, my wonderful mother-in-law, not only dropped everything and came more than once (and cooked and cleaned and held babies), but called all of her sisters and set up weeks where they came, one sister a week to stay with us and just be another set of hands. They did laundry or cleaning or dinner or holding babies. It was always holding babies. Kate Sedey came, for what was one of my most fun weeks that summer. And fun was hard to come by. Ma and Joe, thank you for all your support. For dropping things, rescheduling things. For everything. And I know, if you were closer, you would be there every single day. Kate I know you would be as well.
My mom and dad, for coming to appointments, for sleeping over, for letting us nap. For handling appointments. For everything too.
Everyone has done too much for me to list. Really.
Al and Bri. For being us, when we couldn't be. For all of your time that you have given to us over the last 8 months. So we could nap, so we could leave the house, so we could take G somewhere. For taking G to movies or for sleepovers. For trying to make up for some of the attention he missed from us. For the meals, the relief, the karate trips (to both schools), the friendship. You guys have become our best friends. We cannot describe how much all of this has meant to us.
For all of you who have babysat or come to hold a baby, Carla, Markus, Maureen, Erika (for wine and baby holding). Thank you so much.
For those who lend an ear when we needed to cry or talk. For those at KIPP for understanding and for making things easier instead of harder.
For all the moms who reached out to me to tell me I am doing a good job, or to hang in there, it gets better. For those who walked me through his treatment. For those who said prayers, sent good thoughts, who crossed their fingers and toes.
This year has really opened our eyes to all of the support we have out there. Before now, we probably didn't need it, we never even had to consider needing it. As soon as we did though, you all came out of the woodwork and offered whatever you could to help and I am not sure we would have made it through this year without you.
So thank you. Thank you. Thank you. Thank you. For everything! For all listed here and for all thats not. Every single act of kindness, we appreciate.
Not one kind act has been unnoticed by us. I am not sure if we expressed it at the time. Sometimes we are so involved in what is going on, that after we get through a procedure or a crazy day, I wondered, did I seem grateful enough. Or after a letter was written or an email sent, I wondered if I was appreciative enough. If not, I apologize. I am so thankful, so grateful, so appreciative.
Over the summer, my wonderful mother-in-law, not only dropped everything and came more than once (and cooked and cleaned and held babies), but called all of her sisters and set up weeks where they came, one sister a week to stay with us and just be another set of hands. They did laundry or cleaning or dinner or holding babies. It was always holding babies. Kate Sedey came, for what was one of my most fun weeks that summer. And fun was hard to come by. Ma and Joe, thank you for all your support. For dropping things, rescheduling things. For everything. And I know, if you were closer, you would be there every single day. Kate I know you would be as well.
My mom and dad, for coming to appointments, for sleeping over, for letting us nap. For handling appointments. For everything too.
Everyone has done too much for me to list. Really.
Al and Bri. For being us, when we couldn't be. For all of your time that you have given to us over the last 8 months. So we could nap, so we could leave the house, so we could take G somewhere. For taking G to movies or for sleepovers. For trying to make up for some of the attention he missed from us. For the meals, the relief, the karate trips (to both schools), the friendship. You guys have become our best friends. We cannot describe how much all of this has meant to us.
For all of you who have babysat or come to hold a baby, Carla, Markus, Maureen, Erika (for wine and baby holding). Thank you so much.
For those who lend an ear when we needed to cry or talk. For those at KIPP for understanding and for making things easier instead of harder.
For all the moms who reached out to me to tell me I am doing a good job, or to hang in there, it gets better. For those who walked me through his treatment. For those who said prayers, sent good thoughts, who crossed their fingers and toes.
This year has really opened our eyes to all of the support we have out there. Before now, we probably didn't need it, we never even had to consider needing it. As soon as we did though, you all came out of the woodwork and offered whatever you could to help and I am not sure we would have made it through this year without you.
So thank you. Thank you. Thank you. Thank you. For everything! For all listed here and for all thats not. Every single act of kindness, we appreciate.
Thursday, December 2, 2010
It's beginning to look a lot like....
CHRISTMAS!!!!!!!!!!!!!!!!
Finally, Christmas-time has arrived! This is my most favorite time of year. For those who know me well, you know I start singing Christmas carols in October. I plan our annual Christmas tree cutting get together (except this year I notice attendence is suffering, ah hem, let's get it together people), I plan cookie baking, plan my office holiday party and have something doing every weekend.
And it's Gavin's birthday! Gavin Sedey was born December 2, 2004 at 8:13pm. He took his sweet time getting here and arrived like hell on wheels. When the nurses put him on the table he tried to push up on his arms. They said to me, "Oh, you are in trouble!" And I have been ever since. But what a wonderful gift my Gavin is. He is hysterical. Lately he says the funniest of things. He is 6 going on 36. For instance, he is going to marry a billionnaire, she is going to work and he is going to stay home, unless they have kids. Then he is making a job for himself. (Because who wants to take care of kids!) He is a trip. Over the last 6 years nick and I have watched him grow into a thoughtful, happy, energetic, smart, intuitive, resilient, loving and caring little boy and we are so proud to say that he is ours. So our December starts off with a very special celebration, this year in the form of a lego party. Happy birthday G, we just love you to pieces.
After G's party we cut down our tree. I love the whole ordeal of it. We go to a farm, tailgate with our family before boarding the big red tractor pulled hayride to the top of the hill where the big trees grow. Most of our family and friends find their tree in the first half hour, while our tree always hides from me until everyone is losing their patience and anxious to get out of the cold. I am sorry. Blame my tree!!! We go home and get the tree up and I spend lots of time piling the lights on while cursing under my breath, because it hurts for f*cks sake! Then we decorate and spend the next hour or so admiring our work from the couch. This year we will have to figure out how to hide the tree from the babies since Caleb has bypassed crawling and now pulls himself up and as of this morning was taking steps to the left and right depending on what he wanted to touch. So ideas on how to hide the tree from them are appreciated.
From there we are onto Christmas concerts both at church (Gavin is the little drummer boy) and at school. Holiday parties, NYC windows and the Rockefeller tree viewing and then last minute shopping.
Most of all, besides the lights, gift giving, wrapping paper, I just love seeing all my family over and over. It starts at Thanksgiving, which we got to spend in St. Louis this year with Nick's parents, Kate, Erik, Heidi and Dan and continues through Christmas. I love all the time we spend and all of the fun and laughs we have. We are so lucky to have an amazing family and lucky to keep adding to our family with such amazing people. For the last few years we have gotten to spend Christmas Eve with my new brother-in-laws family, hopefully starting a fun tradition of eating and drinking and being Merry with their family. My in-laws are coming to our house for Christmas this year and we are having dinner with my parents and sisters. It really is what makes this time so special.
It's the twins first Christmas. I cannot wait to see them stare at the tree, or attempt to eat wrapping paper.
This is the best time of year!
Finally, Christmas-time has arrived! This is my most favorite time of year. For those who know me well, you know I start singing Christmas carols in October. I plan our annual Christmas tree cutting get together (except this year I notice attendence is suffering, ah hem, let's get it together people), I plan cookie baking, plan my office holiday party and have something doing every weekend.
And it's Gavin's birthday! Gavin Sedey was born December 2, 2004 at 8:13pm. He took his sweet time getting here and arrived like hell on wheels. When the nurses put him on the table he tried to push up on his arms. They said to me, "Oh, you are in trouble!" And I have been ever since. But what a wonderful gift my Gavin is. He is hysterical. Lately he says the funniest of things. He is 6 going on 36. For instance, he is going to marry a billionnaire, she is going to work and he is going to stay home, unless they have kids. Then he is making a job for himself. (Because who wants to take care of kids!) He is a trip. Over the last 6 years nick and I have watched him grow into a thoughtful, happy, energetic, smart, intuitive, resilient, loving and caring little boy and we are so proud to say that he is ours. So our December starts off with a very special celebration, this year in the form of a lego party. Happy birthday G, we just love you to pieces.
After G's party we cut down our tree. I love the whole ordeal of it. We go to a farm, tailgate with our family before boarding the big red tractor pulled hayride to the top of the hill where the big trees grow. Most of our family and friends find their tree in the first half hour, while our tree always hides from me until everyone is losing their patience and anxious to get out of the cold. I am sorry. Blame my tree!!! We go home and get the tree up and I spend lots of time piling the lights on while cursing under my breath, because it hurts for f*cks sake! Then we decorate and spend the next hour or so admiring our work from the couch. This year we will have to figure out how to hide the tree from the babies since Caleb has bypassed crawling and now pulls himself up and as of this morning was taking steps to the left and right depending on what he wanted to touch. So ideas on how to hide the tree from them are appreciated.
From there we are onto Christmas concerts both at church (Gavin is the little drummer boy) and at school. Holiday parties, NYC windows and the Rockefeller tree viewing and then last minute shopping.
Most of all, besides the lights, gift giving, wrapping paper, I just love seeing all my family over and over. It starts at Thanksgiving, which we got to spend in St. Louis this year with Nick's parents, Kate, Erik, Heidi and Dan and continues through Christmas. I love all the time we spend and all of the fun and laughs we have. We are so lucky to have an amazing family and lucky to keep adding to our family with such amazing people. For the last few years we have gotten to spend Christmas Eve with my new brother-in-laws family, hopefully starting a fun tradition of eating and drinking and being Merry with their family. My in-laws are coming to our house for Christmas this year and we are having dinner with my parents and sisters. It really is what makes this time so special.
It's the twins first Christmas. I cannot wait to see them stare at the tree, or attempt to eat wrapping paper.
This is the best time of year!
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