Our Heart Journey: Things I've learned

Wysdom had his surgery for an AVSD on May27th and it was quite the ordeal. At the time I didn't have this blog, but instead used a care page from our hospital. In reality I guess it was writing on the care page that got me interested in blogging. Attached is the link to my posts from the day "prior" to his surgery to the day we came home....3 weeks in total. Keep in mind Wysdom had a lot of complications that included things like pneumonia, bacteria infections and heart complications that don't happen to most. I also have pictures posted for any of you that are preparing for surgery and would like to take a look. I found that looking at pictures of recovery from other children, prior to Wysdom's surgery really helped me out.

http://www.carepages.com/carepages/WysdomElijah

(you have to sign into the above to read my old posts)

What helped me survive my son's surgery?

• Writing a Journal
• Taking a break( mine was a Starbucks green tea latte- my break time ritual)
• Reading books ( mine was 800 pages and I read it all at his bedside)
• Taking short walks
• Connecting with other parents who have gone through it or are soon to have their child going for surgery
• Writing a care page
• Getting sleep when I could
• Looking at pictures post surgery prior to our surgery date
• Asking the surgeon and medical team all possible questions (during pre op)
• Researching OHS procedures
• Taking vitamins(B vitamins help with stress and keep energy up)

Useful things to have?

• Hand cream!!! Your hands get dry after sanitizing so much
• Tea bags( you can always find hot water)
• Books, pens, paper
• Phone cards
• Loose change for parking
• Camera
• Stuffed animals, musical toys for your child
• Pictures of other family members to post on bed/crib
• Sweater
• Friends and family visiting you
• Baby socks as their feet get cold
• Your advocating attitude
• Cd's and cd player (especially if your child gets jumpy with all of the commotion in the recover room such as nurses entering in and out.)

My Hospital Tips

Since we have spent over 3 months in total at three different hospital since Wysdom's birth, these are things that I found that worked for me.

• Be an advocate for your child. Speak up if you are not sure of something or someone
• Have everyone clean their hands
• Sanitize the crib/bed rails and also ask staff to do so
• Ask staff to sanitize stethoscope
• Central line management is crucial in managing bacteria
• Beware of pressure points from cpap masks on child's forehead(trust me on this one)
• Advocate if you do not like or get a bad feeling about a staff
• Praise the staff that do a great job. Thank them, treat them to cards, coffee etc. and appreciate how they take care of your child with the love of a mom.
• Cry when you need to..you usually feel better afterwards
• Ask for help if you need it
• Make sure to ask about medications and times, read labels on medication
• Check your breast milk label if you are still breastfeeding
• Read discharge summary for accurate information

I hope something in here helps someone who is going for an upcoming surgery with their child. You can do it. You may think that you can't....but you can and you will find a strength that surprises you. The outcome is sooo worth it. The energy that Wysdom has now is amazing compared to how he was pre surgery. So so worth it!!!

ps I love this picture of pre op...he reminds me of superman in his cape!!!