Archive | November, 2012


11 Nov

Cameron is a walking champ now and we are soooo proud of him! An independent little man and he really gets around, no really he’s everywhere and we love it, a true blessing! Now we had a few super tough falls once a busted lip from a slide accident and recently a forehead plow to the street. He got super brave and excited tossing himself down slides and as I waited at the bottom (for once not taking a picture) he leaned forward catching his face to the side rail. I thought his mouth would never stop bleeding and I thought his teeth might have gone through his lip. After some Dr. Daddy care he was good but Mommy was pretty upset. The street accident I thought was because of the new shoes but he’s done it since with just socks. He gets a little excited about being so free to run and bam fast ground contact! I had to watch his head bounce off the ground just an arms length away in slow motion then pick the tiny gravel out his skin. Anyway the tough guy keeps going no fear well maybe a little hesitant on the slides actually he’s going the safe belly routes now. Also, he’s pretty good about holding on to our hand when coming to big steps or changes in the path from concrete to grass etc. He is tough enough to take on the sand but he thinks he can do full stairs on his own (not really because his legs aren’t long enough to make it). Cam even looks for something to hold onto like a railing when exploring on his own. Whenever he walks out his bedroom/playroom he holds the gate to step over the floor bar. It’s great that he shows these problem solving skills. We had Early Steps come out to re-evaluate him but we don’t have results yet maybe next post.

Cam was Frankenstein for Halloween Daddy thought it was appropriate due to his funny walking technique holding the arms out for balance and the fact he’s already scared up and put together by bits and pieces. It was a struggle to keep the hat on but he really did well with the costume. Cam wouldn’t eat any candy we/I tried to pass him but our sweet neighbors on 2nd Street made special baby goodie bags even gave him a pack of gerber graduate puffs, it was most thoughtful! We did Boo at the Zoo but Mommy was super freaky about germs and him touching anything! I had to hold my face just to let Daddy let him explore, I was a nervous wreck but we all enjoyed it.

The Echo appointment last month was difficult as the sedation rules at Chnola no longer allows oral sedation and are locked to sedation via iv lines. I’m not a fan of iv lines seeing as he really doesn’t need more holes in him or trauma. The nurses even called to talk me down about it apparently there is a note in his chart saying Mommy is against iv line sedation. We tried to go with his nap time in an attempt to avoid sedation but the appointment went bad from the second he saw the white table. I mean red faced, silent cry, crazy Cam upset to tears about being in the room with the white Doctor table. It’s from all the vaccination shots since we had them spaced out he’s picked up on the situation and is apparently traumatized now (if he only knew which I’m glad he doesn’t). Anyway he cried a lot and as much as I tried to get him to calm down he wouldn’t unclaw me long enough for them to do anything. However, since the Echo a few months ago was done with sedation along with the EEG we can wait longer to get more clear pictures.

Cam’s medications are minimal now! I’m excited not to do 8 hour meds hoping to gain a better sleep pattern for both of us. We stopped the sildenafil completely and the Cardiologist said we don’t have to do Zantac unless we see signs of reflux. The Enalapril is just a precaution to give him some assistance with his heart function so it’s not over working all the time. There is a mild leak with his tricuspid valve but all normal people have some leak so it’s really ok from what I understand out of the conversation. Aspirin will always be a daily medication and he is on half a children’s tablet. There is a daily multivitamin but that’s normal kid stuff. Three meds wow what a triumph for Cameron!

The food situation has changed too. We are no longer doing formula instead straight pediasure which is specifically designed for weight gain. The Doctors would prefer Cam at a weight of 30 or more pounds by age 3 when considering the third Hlhs procedure called the Fontan. The bigger the better to work with I’ve heard. Cam doesn’t do too much with meals I think he’s just picky. Sometimes he chows down surprising me by self feeding himself things he wouldn’t let me get near his face. Anyway he has a hilarious signature move when he’s finished eating… He won’t tell you when he’s done eating and will be watching tv or looking away then all sly and quite like slips his thumb under the plate and flips it on the floor! The dogs love it but Mommy doesn’t ever find it funny. Daddy has a great way to tell the story with expressions and all, a real riot!

We are almost caught up on vaccinations just a few left on the slow list. Two of the routine live vaccinations are coming up next mmr and chicken pox. I’m nervous because they are live but the cardiologist said its fine treat him like a normal child with vaccinations.

When we were coming off the sildenafil last month I was told to check his oxygen saturation levels or O2Sats to monitor any problems. We are at a point now that we understand it when the doctors tell you ‘you will know if something is wrong with him just by looking at him’ After the pleural effusions and experiencing the blue baby visuals I don’t check his O2sats around the clock anymore only when I see or sense him having problems. They were his normal 80s awake but 90s sleeping. Daddy was concerned about the high 90s considering any possibility of internal complications. The Cardiologist cleared things up saying if there was any internal problems his o2sats would be too high or too low all the time not just during high or low activities. This explanation made Mommy feel better actually took a load of worry off my chest I was carrying for a few days. When Daddy mentioned the possibility of more complications I lost it…. broke down in tears considering Cam could be in trouble again facing more testing or corrections. Not my finest moment I know, we are always trying to stay positive and keep tough game faces in front of Cam. It was just a brief peek at my emotional attachment to the little man, I really cannot help it. The compassion and love is unmeasurable like any mother especially a mother with a sick child. It just got away from me for a second made me crazy upset, but things are fine it was a false alarm.

The Cardiologist said his heart function looks good from what they had on the last Echo. I went into this appointment with a list of questions for the cardiologist about vaccinations, high o2sats and other medication questions. However, when we sat down to talk about it he stressed to me the good heart function results. I realized that I was completely in denial, avoiding those results, focusing on other questions or maybe trying to be positive hoping there couldn’t be anything bad about his heart function or just trying not to hold my breath praying against anymore bad news. He mentioned that sometimes families aren’t so lucky and some even need to consider transplants just because the heart cannot make it up to the Fontan the third Hlhs procedure due to the extra hard work it takes for them to handle every day. It was a flush of reality for me, hit me like a sandbag, brought me to tears when I was able to grab a moment in the car alone. There are many Hlhs warriors who get their angel wings and our hearts and prayers go out to all the families who endeavor such a loss.