Mary is feeling much better today, we were able to wean her down to room air (21% O2) yesterday and she stayed on it through the night. The plan is to extubate (pull the breathing tube out) tomorrow (Wednesday). Mary is in good spirits and was happy to have a few visitors today, her nanny, Shelby and one of her nurses, Lisa. She was also able to Skype with her brother, Jackson last night, and with her aunt, Angie (in Ukraine) and he uncle, Bill, (in Texas) today. She doesn't care to Skype right now, because she can't talk with the tube in her mouth, but she was happy to see the familiar faces.
Please pray that the extubation goes well and we can get home before Halloween!
Tuesday, October 25, 2011
Sunday, October 23, 2011
FLU + SMA = NOT a good combination
Hello all! So Mary and Jackson had been sailing along this fall, both growing like weeds, and going (back) to pre-school. Kate and I were feeling very fortunate because both of the kids have been very healthy until this week. Mary and Jackson even had a minor cold or two that we were able to manage well from home for Mary (this is a good thing). So we were very surprised on Wednesday when Mary started having more secretions, because nobody in the house had been sick and we've really been limiting our exposure to sick people. We had even decided to pull Mary out of school and begin home-school at beginning of last week, because so many kids in her class had been sick.
So by Wednesday night/Thursday morning, Mary woke us up, crying, needing suction and desaurating. At first, we didn't think it was too big of a deal, given her past 2 colds were pretty light. We immediately stated increasing her BiPap pressures, and treatments to keep her lungs clear. On Thursday, we decided to take Mary to the local Army hospital to get a chest x-ray and see what was going on in there. On the way to get the x-ray, Mary desaturated in the van, we raced to the hospital and were able to get the x-ray, but then headed immediately to the ER. They were great, aleady knew we were on our way. We were able to stabilize Mary, but we releaized that we might be dealing with more than just a light cold. The ER staff decided to transport Mary via helicopter to UMDNJ in Newark. She was probably stable enough to transport via ground Ambulance, but given it was approaching rush hour out of NYC on a Thursday, it would have turned an 1 hour ambulance ride into several hours.
When we got to the hospital, we found out Mary has Influenza A. We continued to do aggressive airway clearance, but we just weren't getting that much out of her lungs. However, we could tell that there was still mucus in her airway, because we could hear it, and her O2 SATS weren't that great, even after treatment. Mary's mucus (from the flu) is very think and sticky and we've had a very hard time getting it completely out of her lungs and upper respiratory tract. This sticky mucus caused her to desaturate last night, even while bleeding 100% O2 into her ventillator, we tried to clear her all night long, but finally this morning we had to make the decision to intubate her, to give her body, lungs, and nostrils a break from hours of continuous coughing and suctioning.
The intubation went fine, but she has still be having some trouble with low O2 saturations, so she had been on 60-80% O2 all day. But she is resting comfortably now, and thankfully there is no pneumonia in her lungs.
Please keep up the prayers for Mary!
So by Wednesday night/Thursday morning, Mary woke us up, crying, needing suction and desaurating. At first, we didn't think it was too big of a deal, given her past 2 colds were pretty light. We immediately stated increasing her BiPap pressures, and treatments to keep her lungs clear. On Thursday, we decided to take Mary to the local Army hospital to get a chest x-ray and see what was going on in there. On the way to get the x-ray, Mary desaturated in the van, we raced to the hospital and were able to get the x-ray, but then headed immediately to the ER. They were great, aleady knew we were on our way. We were able to stabilize Mary, but we releaized that we might be dealing with more than just a light cold. The ER staff decided to transport Mary via helicopter to UMDNJ in Newark. She was probably stable enough to transport via ground Ambulance, but given it was approaching rush hour out of NYC on a Thursday, it would have turned an 1 hour ambulance ride into several hours.
When we got to the hospital, we found out Mary has Influenza A. We continued to do aggressive airway clearance, but we just weren't getting that much out of her lungs. However, we could tell that there was still mucus in her airway, because we could hear it, and her O2 SATS weren't that great, even after treatment. Mary's mucus (from the flu) is very think and sticky and we've had a very hard time getting it completely out of her lungs and upper respiratory tract. This sticky mucus caused her to desaturate last night, even while bleeding 100% O2 into her ventillator, we tried to clear her all night long, but finally this morning we had to make the decision to intubate her, to give her body, lungs, and nostrils a break from hours of continuous coughing and suctioning.
The intubation went fine, but she has still be having some trouble with low O2 saturations, so she had been on 60-80% O2 all day. But she is resting comfortably now, and thankfully there is no pneumonia in her lungs.
Please keep up the prayers for Mary!
Tuesday, September 13, 2011
Mary Returns to School!!!
So Mary started back to pre-school for the 3rd year in a row!! Yes, she is absolutely ready for Kindergarten, but since she isn't 5, she gets another year of pre-K. I think Mary could probably teach the class!! This picture is actually of Jackson's first day of preschool, but it was so cute, I couldn't resist posting it!!
A picture of Mary with her class out of the Nature Observation Deck!
Mary and her friend Aoife!
Mary doing some fishing for letters during OT out on the playground...
Mary is the new JennSwing with Aoife pushing her!
Mary riding on the school bus at the new playground, she loves it!
Driving the bus!!
One very happy girl!!!!
Sunday, August 28, 2011
Mary Turns 4 and 1/2!!!
Mary turned a big four and a half on the 28th!!! Mary said she wanted a dragonfly cake and she wanted to help make it, so here are some pictures of her and Jackson helping decorate the cake.
Notice the flashlight in the picture as we were preparing for "Hurricane Irene" which really just turned out to be a tropical storm.
The finished product:
Big SMILES!!!
Jackson wants to help blow out the candle...
I love this picture of Mary getting ready to take a bite of cake!!
Finally a picture of the whole family!!
Sunday, June 12, 2011
On Bull Pond . . .
So it is mid-June and it has been SO long since we've updated Mary's blog or the website, www.miracleformary.com, so he is a quick update!
Mary has been extremely busy this summer! She started off the summer by playing baseball! Her team is the Pirates and Mary was super excited to get started. For the opening day, Kate and I had decided not to take Mary in her Powerchair, because we wanted to get a feel for things... well, Mary woke up that morning and said, "I get to play in my powerchair, right?" She was determined to do it, and we all know that when Mary is determined to do anything, there is no changing her mind!!! So, she got her way:
The summer, we've also had lots of trips to the zoo and spent many days in the backyard, swinging and playing in our new pool!
This past weekend, Mary's Grandparents came in from Michigan and her cousins came all the way from TEXAS to join us at the lake cabin we had rented. Here are some of our favorite pictures from the weekend:
Mary has been extremely busy this summer! She started off the summer by playing baseball! Her team is the Pirates and Mary was super excited to get started. For the opening day, Kate and I had decided not to take Mary in her Powerchair, because we wanted to get a feel for things... well, Mary woke up that morning and said, "I get to play in my powerchair, right?" She was determined to do it, and we all know that when Mary is determined to do anything, there is no changing her mind!!! So, she got her way:
The summer, we've also had lots of trips to the zoo and spent many days in the backyard, swinging and playing in our new pool!
This past weekend, Mary's Grandparents came in from Michigan and her cousins came all the way from TEXAS to join us at the lake cabin we had rented. Here are some of our favorite pictures from the weekend:
Wednesday, March 9, 2011
Visiting the Rifton Factory!
Since Mary started school over a year ago, we've been searching for a suitable seating system that will allow Mary to sit up in the classroom and be able to interact with her peers and do her schoolwork. We needed something that can offer Mary enough support in both the head and trunk to allow her to sit upright, but at the same time allow her to recline if she starts to have respiratory trouble.
As you can imagine, this is no small task... there are many chairs out there, but few of them meet the specific needs of an SMA Type 1 child. Many kudos to my wife Kate for not giving up the search, despite many roadblocks along the way. Recently, one of our physical therapists at Inspire, named Debbie Engle recommended we contact a seating specialist named Jean Minkel, who suggested we look into the Rifton Activity Chair for Mary. Kate made contact with Rifton (www.rifton.com) which specializes in adaptive equipment for children and adults. It turns out that the company is located less than an hour from our house!!! So, they invited us up to let Mary see the chairs being built and to try one on for size...
Well, Mary did great in the Rifton Activity Chair and loved meeting the friendly people at the factory!
Here is a video of the chair:
Here are some pictures of Mary in the chair:
Here is a picture of Kate, Mary and I with the Physical Therapist and one of the VP's of the company.
As a mechanical engineer, it was a treat for me to see all of this amazing equipment being designed, built, and assembled on-site by amazing dedicated and talented workers.
We were all blown away by the kindness and generosity of the people at Rifton and in turn the workers at the factory were very excited to see someone like Mary using one of the products they've worked so hard to design and build. At the end of our visit, they offered to let Mary to take chair that she tried home!! Again, we were absolutely blown away!!
Thanks to Joe, Deborah and everyone at Rifton for your kindness and generosity!
As you can imagine, this is no small task... there are many chairs out there, but few of them meet the specific needs of an SMA Type 1 child. Many kudos to my wife Kate for not giving up the search, despite many roadblocks along the way. Recently, one of our physical therapists at Inspire, named Debbie Engle recommended we contact a seating specialist named Jean Minkel, who suggested we look into the Rifton Activity Chair for Mary. Kate made contact with Rifton (www.rifton.com) which specializes in adaptive equipment for children and adults. It turns out that the company is located less than an hour from our house!!! So, they invited us up to let Mary see the chairs being built and to try one on for size...
 |
| From Rifton |
Well, Mary did great in the Rifton Activity Chair and loved meeting the friendly people at the factory!
Here is a video of the chair:
Here are some pictures of Mary in the chair:
 |
| From Rifton |
 |
| From Rifton |
Here is a picture of Kate, Mary and I with the Physical Therapist and one of the VP's of the company.
 |
| From Rifton |
As a mechanical engineer, it was a treat for me to see all of this amazing equipment being designed, built, and assembled on-site by amazing dedicated and talented workers.
We were all blown away by the kindness and generosity of the people at Rifton and in turn the workers at the factory were very excited to see someone like Mary using one of the products they've worked so hard to design and build. At the end of our visit, they offered to let Mary to take chair that she tried home!! Again, we were absolutely blown away!!
Thanks to Joe, Deborah and everyone at Rifton for your kindness and generosity!
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