Wednesday, October 27, 2010

Scar Infection & Halloween Care Bags

The Wednesday night after Evan's Halloween party I noticed a red knot coming up under his scar towards the bottom of it. It didn't feel warm to the touch but I was worried and glad we had a cardio appt. checkup the next day. At the appt. I told the cardio about it and he looked and said to keep an eye out and if it changed at all to call him. That he thought all would be fine but that he might need antibiotics. He mentioned bone infection but said this usually happens much sooner after surgery. His appt. other than that went great and all looks good. His cardio encouraged me to try to quit waiting for the other shoe to drop and that Evan was doing wonderful. That Sunday morning Evan woke up and at the bottom of the red knot it had turned black. This was a change but since it was Sunday and I felt like I'm too big of a worry wart I decided I would call first thing Monday. I called the cardio Monday who referred me to the surgeon. I called the surgeon and talked to his nurse and told them I had taken a picture of it that morning. She asked me to email it to her and that the surgeon was in surgery but she would fwd. it to him and he would look at it and they would call me back. I anxiously awaited his call and when he called at 1:00 and asked if I could have him there be 2:00 I knew it was serious. I got Evan from school and took him down to the hospital and the surgeon and his assistant were both waiting to see him. They both took a look at it and agreed that it wouldn't require re-admission (YIKES didn't know this was a possibility) and that it looked like a superficial skin infection. They started him on 500mg cephalexin every 8 hours. I explained that we had scheduled a vacation in FL and were supposed to leave that coming Sat. morning and did they think we should cancel. Since it was only Monday they said not to cancel it yet and to check in with them on Thur. To text them a picture of what it looked like and we could decide then. I didn't know I would be on texting terms with Evan's surgeon and nurses. It did seem to be getting a little better each day but was slow progress. I texted a picture on Thur. and they said it was improving so that the medicine should be working and that I was just going to have to go with my gut on if we went on vaca or not. They felt he was better and would be fine. I called Evan's cardio and he too felt we should go - and if it ever seemed to not be getting better to come back home. I was a nervous wreck!!! I did not want to be the party pooper and cancel vacation but Evan's health comes first. It seemed much better on Friday and thankfully the salt water must work wonders because after the 1st day of vacation his scar looked like it did pre-infection! I'm so glad we didn't cancel our trip and I'm so thankful Evan's infection is gone! I'll be posting vacation pictures soon! It was much needed and wonderful.

Evan's Scar Monday Morning

Evan's Scar Thursday Morning

When we decided to for sure have our Halloween party this year Evan said, "Hey... I know, for admission to the party people should bring bags of treats and we will put them in bags and take them to the kids in the hospital!" We thought it was a wonderful idea and were proud of him for thinking of it himself. We added that on the invites - that if you would like to bring a bag of goodies we would be making Halloween care bags to deliver to the hospital Halloween week. I put brown paper lunch bags next to each pumpkin so the kids at the party could decorate the bags that would be taken. A few of the older kids at the party volunteered to fill the bags for us during the party so all the work was done and the bags were ready to go. So... the day after coming back from vacation Evan's idea was acted upon and Halloween care bags were delivered to the kids on Evan's floor at the hospital. He did so amazing delivering those. I was so very proud of my little guy. We met with the nurse manager and I pulled a wagon full of the treat bags (they had candy, pencils, erasers, bubbles, stickers, cookies, etc. in them) while Evan walked with her and hand delivered the goodies to each room. Get this... we had 30 kids at the party so 30 bags were made and there were 30 patients that day on the floor! Anyway... Evan was so kind and thoughtful at each room. The nurse manager would knock on the door and say... hello I'm the nurse manager and this is Evan and he is a former patient of ours and he would like to give your child a Halloween treat bag. They would always say yes and Evan would say things like - "I missed my first Halloween while I was in the hospital and I got a treat bag and wanted you to get one too - or - I hope you like your goodies and I hope you feel better soon." He did so so good and when we would leave a room he would say, "Mom this feels so good!" I Love this kid with all I have. We are so blessed with this little guy.

Last thing... there were tornado warnings here yesterday and the school had to go to shelter for 2 hours. I knew Evan would probably be very upset and I was right. He called and told me he cried the whole time and that his teacher made him feel better by patting his back and telling him it would be okay. He said he was so worried that the tornado would hit them or be where me or his Daddy was. He said he kept praying that we would all be okay. Then he said when it was over he cried again because he was so happy!

Next post will be vacation pictures!

Friday, October 01, 2010


I walked into our bedroom this morning and almost walked right into and flipped over this - .

When Evan was born we were handed a cardiologist. We have since switched cardios. This first set of cardios scared me to death. I feel like if we had our cardiologist we have now things would have been much different. I feel he would have reassured me and set me straight on some of my fears. I knew nothing about hearts and loved my baby so much. I was so afraid of TET spells and had anxiety attacks when he wasn't near me. I took an extended leave from work and kept him in my arms day and night. I cradled him in my arms at night and woke up checking his nailbeds and lips - listened to his heart - checked his breathing - all through the night. I was exhausted. We had such big thoughts of how things would go with our first baby. A bassinet in our room and a crib in another room. Of course after a few weeks our baby would be sleeping through the night in his own room. Well... here we are. Our *baby* is 6 and he is still in our room. Honestly, it is as much my fault as it is anyone's. We transitioned to his room a few times. Then he would have a heart cath or a surgery and would be scared and cry. I would find myself being afraid and having panic attacks again. It was so much better to bring him with us and wake up to look over and see him sleeping with pink lips. Evan has always wanted us to be right there. I'm sure this is because I/we always were. After his most recent surgery he seems to need that much more. We even went to counseling recently. The counselor (who is an expert on counseling kids with serious health conditions) told us if we can give him this comfort and reassurance that we are and aren't pushing him than he will do it on his own terms. Evan is now 65lbs. and 47 inches tall. But he is still my baby and I will always do what I think is best for him. Always. No matter what. Another heart Mom recently said it best... "We are our kids advocate. This is not a job for wimps. I'm afraid I've disarmed people in the process but I will ALWAYS let you know what I think my kid needs and deserves regardless if i pisses you off or not. Parents of special needs kids are so often misunderstood. People see us as difficult. Well, maybe we are, but at the end of the day we just want our kids to have the same success in this world and same opportunities as everyone else without feeling like the oddball. It's simple, right? Be kind to us, our days are not easy. Be understanding, have patience and accommodate because someday, it may be you and then you'll wish you would have." Thanks Kelly... well said.