Saturday, April 27, 2013

Home from PICU

Finally came home Friday afternoon. So glad to be out of the intensive care. They took him off air flow and watched him for 12 hours before we left the hospital.   We like being back to our routine.  I found it a big challenging to quickly set up  his BBG (baby booger grabber) and  set up the cough machine at first but once things were plugged in and put together, it was no problem.

At first he was breathing at 40 breaths per min and sounded a bit "junky" as our nurse Nathan said at the hospital - but at the PICU they would put him on the CPAP. At home we don't have a CPAP. This made me nervous yesterday but it was nice to have my mom here so we could count his breaths together.  I think through the night he slept more and daddy fed him a couple times. I am relieved  he is breathing now around  30 -35 bpm (breaths per minute). 

There is still slight to mild retraction around his ribs and lower stomach.    Some say this is a natural part of SMA and some say this is part of the process when he is just sick.  We will be home for awhile and I am going to be conservative with  our outings.  This is a great weekend for me to stock up on groceries.

We ordered a pulse oximeter and it should arrive soon. Its a cute frog one that fits over his finger or toe that the care manager suggested. 

here is another video of our play time at home. taken during April.

What a trooper with all those wires  -
Nice to use our feeding chair in ICU beds


Wednesday, April 24, 2013

Running a Marathon

Here a great video. Bryce has learned to say hello. He loves talking and chatting away as well.  This video was taken Monday April 22nd.  Thirteen hours later, we rushed Bryce the children's hospital ER for severe respiratory distress. His little body was breathing so hard and the retractions were frightening for me.  I knew right away we had to get him to the hospital. The training and education from our doctors prepared us for this moment.
Within 24 hours, vitals significantly improved and he seemed accepting   treatments of c-pap and high flow nasal cannula.                           
We plan to stay another 2-3 days as he is improving, they are slowly reducing the oxygen. In order to leave the intensive care unit,  we need to be able to get Bryce breathing on his own and continue to improve. The learning experience for us is that when he fights off this bug, his little body is basically running a marathon.  His vitals initially were 170-220 for heart per min, Oxygen levels were 85 - 90, now he is resting with 90 heart beats per min, 96-100 oxygen level. We are doing c-pap every 2 hours except if he is sleeping they want to keep him asleep.  I am concerned we could be here longer just because his little body has worked so hard to breath. It was very traumatic for him and for us - at least we were prepared and knew what to do when we saw the severe retractions in his rib cage and stomach. 
Our nurses have been really great.  Our initial nurse - so experienced and he knew how to keep us calm and explain details to us well. The night gal, has been consistent and is amazing. Its not a complete break, but being at the hospital is some relief - help with food, changing diapers, moving around his equipment - and I can focus on my sweet boy.
 Our Weekend Prior
Exceptionally Wonderful visit with Family
The weekend getaway was perfect for all of us. A gorgeous stay along the Columbia River - warm sunny weather, and a chance to relax.  Spending time with family is so inspiring and motivational. We really enjoyed meeting Mason and introducing him to Bryce.  Love cousins!!!
Bryce loves watching people - he loves watching birds and the ducks too.


Saturday, April 20, 2013

Oregon Zoo

 Trip to the Zoo. We are so lucky to have a new flock of flamingos from the San Antonio Zoo - a baby elephant, monkey and several newborn penguins.  We love to go to the zoo because its pretty laid back during the week. We figured we better our time in before summer break.  Bryce just loves it there. I think looking and talking about the animals makes him so happy. We are working on sounds and colors.


Sunday, April 7, 2013

I love my family and Friends

Today, we took pictures outside between the rain. What a great chance to get some nice photos.  Me - taking pictures is still such a great hobby of mine. 

What do you think about proactive vs reactive medical professionals? At some point we have to learn to trust those who have the best experience and knowledge to help us make decisions for our son. Recently, I was on online talking with SMA moms and its probably the most useful way for me to learn how to care for Bryce. Not only can I learn from them, but I can have confidence to keep asking questions, keep asking for equipment, and keep asking for ideas outside the box. On the other side, it can be overwhelming because we ultimately as parents have to choose what to do.. some folks might not agree.. some doctors may or may not agree - the more I spend time with other parents and our friends with kids, the more confident I feel about my choices with my sweet darling.  

Our legislatures provides money for programs which have impacted our life significantly. These include  the county nurse who comes to our home usually twice a month, and Early Intervention who loans us  equipment, learning resources, gives us ideas for adapting toys to his age and skill level, provides occupational, physical, and  speech therapists who come to our home.  I love watching Bryce throw his balls, play with his friends, smile and talk to us. He is so fun, loving, and has the best personality.  We had dinner with friends tonight and he  was adorable snuggling and playing with the other little ones.

Our neurologist called us the other night to help me in my endeavor to appeal Bryce's denial of developmental disability services here in our great green pioneering state of Oregon. Interestingly when I went to Salem and spoke in front of the senators about my son's condition and his disabilities I seemed to make a small impact and create some awareness about SMA-1, now when I go to appeal and meet my local representatives in May, I hope they will change the  process of approving a child's DD.

 Fight SMA and Families of SMA are just fantastic folks.  We are getting more support in finding research to support my appeal's hearing for Bryce and all children with SMA-1 in Oregon to be not only qualified but also recognized as developmentally disabled. The resources from  Oregon would help us tremendously and I hope will be a trend for future SMA parents.  

I am off to bed. I am grateful for my friends and for my husband. I love all little children. I love my son so much and am so proud of him.  I love singing, dancing and throwing things with him. Balloons by far are his favorite toy at the moment. Besides the catch me kitty grandma Elaine got him. That puts a great smile on his face too.

 Love and peace to all! Thanks for following us on our blog.  Keep in touch.

Saturday, April 6, 2013

Spring is Here!!

This is one of my favorite seasons. I just love the fresh feeling all around. I love going for walks with Bryce. There is so much more positive energy when the sun is shining. 

Anyways, Easter has come. What joy, what fun!! Love our friends! Thanks dad for coming to visit us. Shaun, Lori, Easton and Emerson too. Bryce enjoyed playing with you and coloring the Eggs.

Easter Sunday we were blessed to be surrounded by such supportive friends - we all had a blast watching all the boys run around and play. They showed their eggs to Bryce, he kinda just looked at them and tried to eat the plastic ones; in any case, the little ones seemed to be helpful and interactive with our little man

Winston Churchill has a great quote that I find appropriate for the struggles of Bryce's weight: "When you are going through hell, never, never, never give up.  I haven't given up. I am actually very proud as a result because finally I see the light - I see and can now embrace the positive aspects of recent endeavors.

Bryce is currently 16.5 lbs. Yes, he has lost weight again. He lost almost a pound since Passover. I can't believe the struggles of getting him to gain weight -   We are becoming more confident in what to do and how to deal with weight loss and his gastro-distress. Our PCP is so kind and patient with us as we seem to always call for help and advice.  They also have been helping me coordinate his care with the developmental pediatrician and dieticians.
What I have learned most recently, no matter what dieticians suggest, its a trial and error.  I am not always clear on the details, but we still are counting his oz of pediasure each day, counting his calories, and trying to provide 2 meals per day with olive oil.   .

The other issue we have been facing, is Bryce has had to wait two months before we can put food into his g-tube, so in May, this will I hope make a huge difference for us and for him.

There are many considerations for the future including when to use a cough machine, biPap, etc.  I am considering traveling to either Wisconsin or Boston for more opinions from SMA experts.