Vent. Scan Results

Evan's Vent. Scan went better than it ever has last Thursday. He knew the minute we pulled into the parking garage where we were and began asking the questions, "Am I'm going to get a shot", "Will they squirt stuff in my nose?" The older he gets the more my heart aches at his little questions and eyes, he asked me, "Mommy, why do you and Daddy bring me here?" Oh little braveheart, if I could keep from bringing you here I would but how do you explain??? I just told him that to keep well sometimes you have to have tests and see doctors to stay well. He perked up once we got inside and sang all sorts of songs for the nurses - he LOVES to sing - don't know where he got that from *wink*. He use to love Bear and the Big Blue house when he was little and we found a dvd of it that has all to do with doctors, appointments, shots and hospitals way back. Weird but Evan found that dvd and asked to watch it on Wed. night and he learned a song, "just say ouch, say it now, just say ouch and it's over" he sang that through tears during his IV, which by the way amazingly the nurse got with one stick! I could have kissed her! When the nurses came in to give him the Versed up the nose he said, "Stop right there, I do not like doctors, I do NOT like doctors, I DO NOT LIKE DOCTORS!" Poor thing - he just wanted to make sure they knew. The actual test only takes about 15-20 min. and about 10 min. into it Evan's blood pressure dropped to 104/33 - they believe he just had a reaction to the meds so they turned it off and it came back up. They used Dex. to sedate him they gave him Versed up the nose and a shot of it before they started the Dex. and I remember him having a blood pressure drop after his surgery when they used Versed, so I'm going to say something to the pc. Since they turned the sedation off before the test was over Evan woke up almost as soon as the test was over and we went home within the half hour. Usually Evan is pretty "drunk" and sleepy for the rest of the day, I'm not sure if they used less meds or if turning it off early made a difference but Evan acted like nothing had happened. He begged to ride his bike when we got home - they told us he would sleep for 3-8 hours. I kept trying to keep him quiet and watch tv but it was obvious that he was fine - running, jumping and so we just quit trying - I was calling giving grandparents the news of the day and they were like, "what's Evan doing?" - "oh just riding his bike" I could not believe it!
Evan's pc in on vacation but another pc in his office called and said that the pressure have dropped 5% since the stent - after the stent the right side was taking 71% of the pressure and the right side 29% and now it is 76% to the right and 24% to the left. The pc that called said that he is not concerned with these results and that he would turn them over to Dr. McOmber when he returns and that Dr. McOmber will be calling to let us know. I'm not sure when it will be time for the cath. again as the left side before the stent was only taking 15% of the pressure - so it has been worse - how far does it drop before the stent needs to be expanded? I'm not sure. My anxiety and worry tends to get the best of me and I hate that I let my worries steal my joy and I'm trying really hard to live for today - it's so hard. After the results came in I called and cancelled a cruise that my husband and I had scheduled for our anniversary - I just can't - I dont' know who we were kidding that we could leave him for a week when we have never even left him overnight. I hope that I didn't disappoint Eric too much, I just couldn't go through with it.

Bye Bye Juice

I can't believe I'm sharing this BUT... here goes. Evan is very attached to his "juice" (4 oz. Avent Bottle with water in it) he asks for it every nap time and bedtime also if he is scared or upset. He gave up the milk bottle pretty easily and on time but loved I mean LOVED his "juice." I talked to his pedi. about it and his pc - and everytime they would say that we needed to get him off of it he would have a procedure coming up and they would say to keep letting him have it. Like last April we were going to take it away and then the pc said to keep letting him have it as he knew that is the ONLY thing that calms him down and wanted something to calm him after his cath. So.... it's almost one year later and yeah, he still loves his "juice." I had decided that we would throw away all extra's so we wouldn't be tempted and just let the current "juice" wear out. Last Thursday I went to pick Evan up after work and my mom just stood there - looking very tired holding the "juice" with the nipple hanging by a thread and Evan crying at her feet pitifully. He said so sadly, "Mommy look, look at what happened to my juice." I felt so sad for him, Mom later told me she thought of going to get a new one but knew I would be able to tell. He has gotten much enjoyment from that little bottle - I'm putting a slide show together to prove that he was in LOVE with it. Anyway, no turning back huh? That night at bedtime I got out all his usual sippy cups and reminded him that "juice" was broke and that he needed to pick something else out to drink "juice" aka water in (we had tried this before but, he did not see the evidence and did not go for it). He picked out a Nuby cup from Wal-mart and although he has talked about his broke "juice" he has not asked for it since! I'm amazed and cannot believe that we are actually through with "juice!"
Evan's Vent. Perf. Scan is next Thur., the 22nd. Pray for a good outcome and some more time before another procedure needs to be done. Mostly for wisdom of the Dr.'s, whom we love, and their finding the right time that's needed for Evan to expand the stent and repair the leaky valve. Pray for us too - as this will be the first procedure without "juice" LOL.