Thursday, May 27, 2010

It's our 1 year HEART Anniversary.

Yup can you believe it. It is our one year HEART Anniversary. One year ago today Wysdom had open heart surgery for his AVSD. We can not believe that it has been a year. So many things have happened since then. I didn't have a blog at the time of Wysdom's surgery. I can definitely say that Wysdom's surgery experience was the seed that started my blogging. At that time I had no idea of the DS blogging community. Instead I created a care page for Wysdom and journaling about our three week and a half week journey. It was a highly stressful time for us. Wysdom was in Toronto and Blyss stayed with my mom for part of the time at home and part of the time she joined us up at the hospital. To be honest I can't quite put myself back to those days. They seem so hard and unreal to me now. I think you just put yourself in a different mindset and prepare for the battle so to speak. You use all your energy and strength to get through it. For those of you that followed our care pages or followed us on the DS BC boards will remember that this was a really challenging time for us. We had many complications that included his chest being opened up for a second time, problems stabilizing his blood pressure, a huge scar on his forehead(that he still has) from a cpap machine and human error as well as pneumonia and several bacteria infections that originated from the central line. Mmmm let me see, was that it? I think that was it.

Even through all of the heartache and pain that Wysdom went through,we know that we were also truly blessed. We were surrounded by family and friends that supported us and prayed for Wysdom and helped keep our spirits up.(which was hard at times). My family came down to visit and support us and my mom watched Blyss so that we didn't have to worry about her in the hospital. Julian's family supported us with food, company and frequent hospital visits. They were often at our room in Ronald McDonald's feeding us and giving us support. My online supporters listen to my rants and progress reports and lifted us up with comment and poems. For all of this we are greatly appreciative.

I was deeply affected by parents that I met going through similar and different struggles that become our hospital friends. I will never forget two families in particular. Both lost their children while we were there. One from a heart condition and one from cancer. There struggles and faces are embedded in my mind and heart.

We are so proud of Wysdom and today we are really just celebrating that he is here with us and how lucky we are to have him and live in a society where the have the medical knowledge and the skills to repair his heart. His heart is still not perfect and may require more surgery..but right now we don't know and are just so thankful for where we are. We love you Wysdom.

PS. Here is a link to an older post on What I learned from Heart Surgery and also a link to our care pages if anyone wanted to see them.
I can't believe it is still there. My word and journals from a year ago. I just reread them and it is so hard to read. Also I can read all the comments from our supporters. Wow! We really did have a crazy ride.!!!

Sunday, May 23, 2010

Children are sick..but good news

Well the kiddo's have been sick for the last three days. It started on Friday with Blyss being tired and lounging around. Then she felt warm. Friday was an already crazy day with me taking my dad to an appointment and several in home appointments for me. While our last therapist was here and working with Wysdom, Blyss threw up all over herself and the couch. The therapist was like " okay I am going to go now". Crazy day.

We tried to keep them apart but then Wysdom has started coughing and throwing up is fully congested. He also started to feel warm. We had to cut all feeds and do the Pedialyte thing again. We know this protocol well and know when to do it. He just starts coughing and is unable to keep his food down and the reflux goes nuts. Then a yellow bright fluid emerges through the tube. So we did his Pedialyte for the night. When this all happened we were starting off on our blenderized diet that I mentioned in the last post. So when we went to start him back on nutren and it didn't work....we just switched over to all blended foods via the tube. This cold has been a blessing in disguise in a way(not that I would ever welcome a cold). It has allowed us to stop all formula because he wasn't tolerating it and try the blended diet. He is tolerating it very well and there is SOOOOOOOOO much less mucus and reflux. I don't even think he has thrown up in the last 24 hours. We are kind of winging it and it is a little stressful as I like to plan and be prepared. So even though he is sick, we may have solved a problem and learned more than we have about Wysdom's digestion and reflux than we ever have.

It has been so crazy I have not even been able to tell you all my drama about trying to get appointments. Anyways I will fill ya in later

Thursday, May 20, 2010

Blenderized Diet

Well we did it! Reflux has pushed us over the edge the last month or so. So today we got fed up with Wysdom gagging, throwing up, blowing bubbles out of his nose and being totally unhappy after or around his feeds. So we did it. We purchased a Vitamix and fed Wysdom real food via his g tube. It's called the blenderized diet.

We have been researching this and talking about it for a while. We even pitched it to our dietitian and our pediatrician last week and provided them with a package or information. They agreed that we could try it if we were followed by a dietitian. However when push came to shove I have been on the fence as of late. Don't get me wrong I believe in holistic food and nutrition very strongly, but when it comes to Wysdom I have always been a little apprehensive due to his complex medical history. I never want to put him in any harm. So today Julian gave me the little push to do it. Really we were both so tired of Wysdom's congestion and gagging. So I made the food in our new Vitamix. It's a high speed blender like no other. It's cost more than your average blender I am not going to lie, but it can blend any food into a smooth texture or liquid.It is more than a regular blender. Today he had butternut squash, blueberries, flax oil and a rice protein powder with vitamins. After mixing it it turned blue due to all of the blueberries...and I wasn't so sure I wanted to do it. Julian stepped it up and followed through. Guess what? Wysdom was fine. Really I don't know what I thought would happen. It went so well that we did the following feed of blended food instead of formula.

In order to do this right we have a lot more planning of meals and organization. (which is really hard when you are so busy) However we are going to try to do a blenderized feed or two everyday in hopes of reducing the reflux-/mucus/congestion and constipation cycle that we are in. (Trust me it's not fun). We are also hoping that this will help Wysdom get used to food. We hope that he will digest this food quicker and also get used to burping up real food and recognizing the taste. So wish us luck on our new exciting journey.

P.S. Big thanks to the blenderized diet yahoo group and a very special dietitian who got us started.

Saturday, May 15, 2010

Medication change up.

Oh gosh I remember when I first came home from the hospital with Wysdom and how overwhelmed I felt with the list of medications to give him. We had this weird iv sodium bottle that we had to use. I remember they showed that to me about 10 minutes before we left the hospital and the nurse could not even get it right. Oh yes and we also had the ng to contend with. Wow how times have changed. Medication don't seem so hard to do now. Yes changes still take a day or two to get used to, but nothing feels like that first couple of days right out of the hospital. Do you remember those?

Well this week we went to see Wysdom's Pediatrician. We have been having a terrible time with reflux for the last month. We are not sure what has triggered it off again...but it is back. Maybe teething? Maybe constipation? Or something else. So we are changing a few things again in hopes that it calms down. We will continue on our motility med's to speed up digestion and just increase the dose to meet Wysdom's requirements. Then stop the Zantac and instead we are going to try Prevacid( I know many of you mom's mention this one). Next...stop the lactolose because it causes to much gas and switch to PEG. Oh yes and bump his feeds up by 20mls too. Lastly, the one that we are really excited about is adding in a blended diet through the tube. Our pedi approved for us to try the blenderized diet as long as we are followed by our dietician. We are really looking forward to it, but we are not starting that until we get all the other changes down pat. We may have to experiment with the PEG and the dosages a little as we have had several messy diapers and poop up to Wysdom's arm pits. Ha. Really. I am not joking at all.!!!

So with all of these changes we are hoping less constipation, less reflux and thus less congestion. It really makes the day hard when Wysdom can't breath through his nose and is gagging every minute. Try bringing him to a baby group like that. Everyone thinks he is sick. I have to declare that he is healthy as soon as I walk in the room and explain the that it's just reflux!!

Anyways if anyone is using PEG and Prevacid I would love to hear how you like it or not and especially how you are dosing the PEG. Wysdom is 21 pounds and a bit and we are giving him 7 grams which maybe a little much. I guess only time will tell.

Sunday, May 9, 2010

Happy Mother's Day

Just wanted to wish all of my friends out there a Happy Mother's Day. Hope you have a great day with your family!!!

Tuesday, May 4, 2010

Eye patch in the tub??

This was my question to Wysdom today. Do you want to wear your eye patch while your in the tub?? Mmmm...probably not. Okay so that is really not going to work. However while making dinner I actually thought about it for a few minutes. Let's just say that we were pretty busy today. Wysdom had a Baby Group at 9:30am -11:15am. We then did some errands and came home for lunch where we met my Aunt who helped me out by planting some flowers in my backyard. Then off to Blyss's activity group at 2-3pm. Then off to see my dad, mow the lawn for him and then back home. So by the time I got home I had to do dinner, give the children a bath, patch Wysdom's eye for an hour or two and also get him into his stander for a little bit. So I thought it was a really good idea to try and double up on things. Julian and I had a few laughs at the thought of that endeavour.

So yes the patch may not work in the tub...but hey it may work on the drive to a group or while he is in the stander. A little strange but it may work. Wysdom will let me know if he likes it or me. So in the grand scheme of things we accomplished a lot today. Not everything got done and I am learning that is okay(or at least trying to). We had some fun, socialized and had a little therapy. Check Check and Check.!

Sunday, May 2, 2010

Finally some pics..Handsome Boy!!

Forgive me as I have not been keeping up my blog as good as I would like. Still trying to get back into the swing of things and always seem to be busy. Right now it's 3 am and I am monitoring Wysdom's breathing (congestion), so I thought I might as well be productive while I watch Wysdom.

I love these new pics of Wysdom and Blyss. It really shares their special bond and also how big Wysdom is. ENJOY!!

I have many more updates to share that will come in the future. Here is a quick previous. We are enjoying some new baby groups and music therapy. We continue to work on eye patching, oral feeding program from Talk Tools and trying to develop leg strength. I am sure there is more but those are the biggies. We are really busy....But having a blast with Wysdom and Blyss these days. I am sure one day they will form their own little music group...they spend most of their time dancing and swaying to music. Promise to share more soon!!