Tuesday, August 12, 2008
Lets add a concussion to the mix
Going Back
I think I had talked about it before but I knew that Evan would need time to process what was going to happen at the hospital and that we would need to explain it to him a few days before to give him that time. I dreaded telling him and struggled with what to say. There really isn't much to say to make a cath. sound good. I was able to tell him when he had his scan that we would be with him the entire time and that if he was brave we would go home and not have to stay. On the way home the Monday before the cath. I secretly hoped Eric would work late so I could blame not telling him on that I wanted him to be there, no such luck. After dinner I was still sending silent prayers of what in the world I was going to say.
Then it just came to me. I remembered a book and hat Evan had received from the hospital at his OHS called Hero Club - http://www.happyhatsforkids.com/intro.html . Evan likes to pull this book out every once and a while and is very proud reading it - knowing the book will tell him that he is a member of the hero club. This little book tells about a child going into the hospital scared and is given a hat which all the other kids say has magical powers and to put it on. It goes on to explain certain hospital procedures (x-rays, blood draws, IV's, medicine, etc.) and what to expect. The hat comes to life while the child is asleep in surgery and they go on an adventure and he explains that it isn't the hat that is magical at all but that the child was a hero because he was brave and so on. After reading this to Evan I told him there was a reason I had read it and that he was going to the hospital for a cath. He didn't cry... he did ask several questions. One question was, "why does my heart need help?" I looked at him for a moment and remembered the straws I just saw in the kitchen drawer and went and got one and told Evan to blow through it. Then I pinched it and told him to blow through it again. I told him he has an artery that is like a straw that takes blood to his lungs from his heart and it is a little pinched and that they needed to blow through it. Evan seemed okay with this although he did share with a few people that he was going to the hospital to have his straw blown into.
The next few days were full of behavioral issues. It was hard seeing him be so aggressive (more so than usual) and struggle to deal with emotions. Evan's side of one situation was that before T-Ball he and a few friends were running and they started chasing him, he asked them to stop and they didn't so he was starting to cry and they laughed. All we saw was Evan with his arms around the kid taking him down. He said they hurt him and that he was in turn hurting them. He doesn't know how to "play" the game back, he only knows how to respond physically. He doesn't get that at all - he's very aggressive but very tender hearted. We spent an evening this week role playing and using words instead of actions to stop someone from getting a kick out of him crying.
I'll post again later with pictures on how we spent the night last night. He is going to send me to the looney house I'm sure.
Tuesday, August 05, 2008
Unsuccessful Cath = Surgery #2
We are so thankful for our Brave little boy. Evan is doing well - he woke up and wanted to go home but had difficulty peeing as he had been cath'd during the procedure and it burned. Once he did that through tears, we were able to leave. We got home late last night, carried Evan to bed and slept. Evan woke up at 5am and got sick. By 7 this morning we were showering and trying to remove the nasty bandages and packing from both legs as it seems both were attempted. I believe it took an entire hour but he is feeling much better now.
As I said, the board will be discussing Evan's case, I believe, next Monday. I know that there is a reason for all of this, although it doesn't seem fair at this moment. One of the options that were discussed yesterday could in fact make it possible for this to be the only surgery Evan has to face, the other options would require another surgery at adulthood. Please pray for the decisions being made by the team. Please pray for us to remain strong in our faith. Please pray for our hope to not diminish as we have been given all reason to believe the outcome of this to be fine although the road will be hard.
Wednesday, July 23, 2008
Cath. Date
So... I guess on Monday evening we'll tell Evan and begin preparing him. He did so well with the scan but, we were able to promise him things with the scan. We were able to tell him if he was brave and got the IV he could go without the Versed up the nose (which he hates) and that we would be able to leave and do something fun. There is nothing to promise him with the cath. All I'll be able to tell him is what will happen not options that if you do this it will be better. He knows now what a cath. means and will immediately begin asking I'm sure about Versed. I believe Versed will be necessary as without it would be mean walking into the cath. lab with no meds if he didn't have it and although he is strong I'm sure that would be hard. He will ask if he has to be without us and yes he will when he wakes up in recovery. He'll ask if he has to stay the night and yes, he will have to stay 24 hrs. in ICU. He is 4 though and I have to prepare him, I can't walk into the hospital and him be blindsighted by what will happen. This is going to be tough.
Tuesday, July 15, 2008
Mom's 65th B-day Getaway (C.D.)
P.S. something funny we saw in a store that I can't quit laughing over (I said I wouldn't post this and here I am, posting it) - "Some people skinny dip, we chunky dunk" OMG... isn't that the funniest thing.... Michael, your laughing, aren't you??? Every laugh seemed to have to do with chunky dunk...
Thursday, July 10, 2008
Advice Please...
Evan is a rowdy, lively & crazy 4 year old who when it comes to feelings is ultra sensitive. I attribute this to his sheltered life - especially in the first few years before preschool. He is still mostly only around our immediate family and a few close friends other than during school that he started this year.
Evan is very sensitive of me, his Daddy and his Mamaw. We are his. He is known to get mad it me if I look at a picture of another kiddo and say, "awwhhh." He pouts and asks me if I like them more than him. We have had many long conversations about this and how it isn't nice and that I'm always his Mommy and he is always my boy and how much we Love him. It never seems to help.
If you are Evan's friend, you are his friend always. He doesn't understand why you would ever be his friend today and then not want to play with him tomorrow. We were in a situation recently (if you are reading this and you were there, kids are kids and no hurt feelings. Just trying to get advice for my own kid to handle these situations better) where we were at the park with a big group of friends and acquaintances. One few of Evan's closest friends was there but for whatever reason was not wanting to play with him. I'm thinking that since they see him more they wanted to play with new kids or just the classic version of 3 is a crowd. I don't know. Evan could not understand this and wasted his park time running around after this friend asking, "why are you not playing with me?", "can I play with you?", "what's wrong?" He went on to get this kid's dad and said please tell him to play with me. The kids would be told to include Evan and then according to Evan run off once the adult was gone without him. Evan cried. He sat on the bench and cried. (I was in a meeting just outside the playground and had friends inside the playground watching him. I could see this going on but couldn't leave the meeting.)
Last night I wanted to talk to him about it. I told him that when someone isn't being nice or doesn't want to play to walk away, find someone else to play with or play by yourself. I also said that I'm sure had he done that, that these friends probably would have joined him eventually. That because he cried it turned into a game for them. That kids will think he is a crybaby if he does this. Evan got so upset with me. Told me that I don't understand him. He said he is not a normal boy who can walk away (where did he get that?).
I'm so not this way and almost feel like maybe I'm being cruel trying to get him to be tough when it comes to feelings in public. But... I hate to see him being the kid running, begging for someone to play with him.
Advice?
Wednesday, July 09, 2008
Sneak Peak
Monday, June 30, 2008
Thursday, June 26, 2008
Back to the cath. lab
He said the same thing we talked about before... he doesn't want to miss out on time when they might regret it in the future... Dr. Kim thought that the decrease in %'s the scan showed (80-20) needs a cath. to check things out and either dialate the stent or insert another one, Dr. McOmber agrees. He said Dr. Kim is very busy, summer surgeries trying to get in before school starts and before cold/flu/RSV season for little ones.... But that, Dr. Kim's office will be calling me to schedule it. Dr. Kim wants to review Evan's file, past cath's and past scans before scheduling the cath, so he wasn't sure when I would hear from him but soon.
So... the waiting begins again. I was mostly expecting the cath. but was going to be super happy if they thought it could wait. As always I just want the best for Evan and have to trust God and our beloved Dr. that this is what is best.
In the meantime... we will continue to enjoy summer. Hope all of you are as well.
Monday, June 23, 2008
Baseball weekend


Sunday, June 15, 2008
Happy Father's Day!
Monday, June 09, 2008
Dr.'s thoughts on scan
Just talked to Dr. McOmber.... he said he wasn't really surprised that the LPA's % of pressure that it sends to the lungs had gone down again... Evan is growing - everything is growing except for that Left Pulmonary Artery - which is the same size since they stented it in Mar. 2006. He is not sure if it is time for another cath. so he is taking it to the board to get the other Dr.'s, especially Dr. Recto the angio specialist in our areas that did his stent, opinion. He said the reason for this would be to prevent Evan's health from ever being less than his 100%.... that we should not see Evan get worse b/c they are keeping on top of things with the tests/scans and caths. He also said this continious drop of 4-5% pressure a year is normal since his is growing and does not mean the conduit/valve replacement surgery is sooner than they originally hoped, that they still hope to hold off until his is larger and could possibly get an adult size with 1 final surgery - or who knows how technology could change before he needs that. That as long as they stay on top of it with scans and caths we can delay surgery and hope for a less invasive approach by the time it is required. He said he thinks Dr. Recto will want to do another cath. maybe not tomorrow but, maybe in 6 months or after next years scan and either dialate the stent or place a stent inside of the old stent expanding it... He said he would be talking to me later this week after he presents Evan's scan to the board at their weekly.
We spent a nice weekend together, playing T-Ball and going to the Circus. I had a not so nice ear infection and at my follow up for broncitis got more meds for that and also told broncitis had gone into pneumonia... Am I ever going to get over all of this??? Dr. said something about rest... drinking lots of fluids... staying out of the heat... I'm wondering if we live in the same town with how hot is has been and also if they have any children, LOL.
Friday, June 06, 2008
Vent. Scan 2008 Results
I just got the results last night, (was beginning to get worried that the hospital lost the test since they took so long to forward it to the cardio - oh how mad I was going to be, after what he went through if he had to do it again.) right before Evan's first T-Ball practice for the year, man it was so hot. I'm not sure what the results mean as another Dr. called and gave them to me b/c Dr. McOmber is on vaca. until Monday. The results were 80-20.... they were 85-15 before the stent and then the stent raised it to 71-29 and then last year is was 76-24. So... it has been worse - right before the stent in '06 but... they were concerned last year with the 76-24 and it is another 4%... seems to decrease on the left side 4-5% every year.... although they did a cath. last year and didn't do anything so maybe this will be okay... I really have no idea until I talk to Dr. McOmber.
This hasn't been the best of weeks for me.... I've been full of anxiety waiting on these results and now that I have them, I can't talk to Dr. M until Monday. We also got more upsetting news that the house we had held a contract open on since our house contract that fell through, in hopes that when our house eventually sold we could move in, asked us to release them from the on-going contract. I can't blame them as it has been since March but... disappointing for us. I know this means there is something better for us... that maybe this house wasn't meant for us, it is still hard once you set your heart on something.
This is also Eric's busy time of year and we practically haven't seen him since last Friday. We miss him and it is hard for Evan when he isn't home at night.
We have planned lots of family time this weekend! We are taking Evan to the Ringling Bros. and Barnum & Bailey Circus tomorrow!!!
Saturday, May 31, 2008
He's Brave
Thursday, May 22, 2008
Last Day of Pre-School & Vent Scan #4
Tuesday, May 13, 2008
I'm too old for Slumber Parties & Mother's Day
Friday, May 09, 2008
House on the market, Puppies and Kidney Stones, oh my!
Tuesday, April 22, 2008
Greatest Munc
I have learned a lot during this process, maybe that was the point. I worked myself up so much - to the point last week that everything crashed and I became very sick. I was in bed for 3 days - 2 of them with a fever of 103.8 - the absolute worse case of strep throat I've ever had. My anxiety always gets the best of me and I'm thankful for the lessons I've learned and am feeling at peace trusting that Jesus will makes things right and just what we need.
This Friday is my brother's birthday and we got to celebrate with him and his family this past Sunday. When I was feeling better late last week Evan and I went with my Mom shopping and Evan wanted to get Munc (his nickname for his Uncle Michael) a card just from him. He picked it out and was very excited. On Saturday we wrapped his gift and Evan got out his crayons and decorated the card and signed his name to it. He wanted me to find some stickers but, I couldn't find any other than the Hallmark sticker to close the envelope with - Evan wanted more so he asked for his crayons again and decorated the outside of the card. As he was coloring he said, "Mommy, this looks like scribbles, will Munc like it?" I answered of course that his coloring was beautiful. He continued to color and said, "For my Munc, the greatest Munc I've ever had!" With that he was done and handed the card over with a smile, knowing, especially after the story was shared that his card would be Munc's most beloved present.
Sunday, April 06, 2008
Isn't he the cutest?










