Shawns Pacemaker Surgery

Shawn has made it through his pacemaker surgery and is doing excellent. This surgery was a little tougher on him being 2 years old just a few days ago so he was more aware of what was going on and he just wanted to go home. But he is now 2 weeks post op and getting back to his normal little spoiled self. Finally sleeping through the night without waking up crying and that is a relief for mom and dad. Shawn also had a great christmas.

Pacemaker Update

Shawn is doing well. We have had several cardio visits and a few holter monitors since my last post. Not to mention a stay a CHOC for a few days in the CVICU. The month after Shawns last RSV shot he got it. We had been battling colds all winter and didnt get RSV then when we think the coast is clear BANG. He tested postative for it =(. So we got to see alot of the nurses that havent seen Shawn since he was 3 months old, because our last surgery was at CHLA. It was nice to see them I just wish it would of been on better circumstances. During that hospitalization they decided to put him on a heart medication called Amioderone to try and help with his rythem issue. Well he was on it for a month and a half and they did another Holter monitor and cardio Dr said there were no changes so they took him off that med and will repeat the Holter in one month. So that is where we are at for now and Shawn is still his jolly ol self. Cranky on some days and draging like he is so tired some of the time, but mostly just being a kid. I will update again soon.

Pacemaker Update

So we ended up not doing the pacemaker as our cardio doc had planned. When we got to CHLA to meet with the Dr about it and do preop labs, they decided to wait because they are unsure if Shawn really needs it. Its a month later and we just repeated a holter monitor this weekend so we will know the results this friday at his cardio appointment. I think they might be trying to hold off so they can put it in at the time of the Fontan so I am thinking that might come sooner than later. The docs over at CHLA seemed to be concerned about opening him up again in such a short period of time. Because of his tricupid repair he has had 3 open heart surgeries in only a year. I hope that we can get some more answers this week at his cardio appointment to put my mind at ease a little. Other than that Shawns doing great and being a normal little one year old that has almost mastered walking now. I am posting a pic from easter with this update .

Shawn walking

Shawn walking

Pacemaker Surgery

So the doc's from CHLA called and we will be going for pre-op work up's and to talk with the surgeon tomorrow morning and then surgery on Tuesday for Shawns pacemaker. I feel a little better about the whole thing now hearing from all the great moms in my group and that there kidos seem to do so much better after the pacemaker is put in. I am so scared for Shawn this time because he is so much older and is more aware of his surroundings and whats going. I feel so unprepared for all of this to. Thinking that we werent looking at surgery until April of next year. I will post an update after surgery . Everyone please pray for Shawn .

Cardio Appointment

Shawn had a cardio appointment yesterday. Well let me start by saying that we had a Holter monitor test done in the end of February because when Shawn was in the hospital last time his cardio doc seen something on the tele that wasnt normal. Well the results of that we got today.
Shawn will have to have a PACEMAKER put in because when he was sleeping his heart rate went down into the 30's. When I found out this is another open chest thing that he was going to have to go through I was saddened. Not just once but every time they need to replace the wires as he grows because his anatamy doesnt allow them to do it any other way. So there are looking to do the surgery as soon as they can get him in. My cardio doc will be calling today with the details. I will post more soon.

Shawns 1St Ambulance Ride=(

Last night was our first ambulance ride. I have always known whenShawn wasn't feeling well I could get him to the ER on my own.Yesterday Shawn woke up with a little fever and I thought since hewas teething it really wasn't anything to worry about. So I gave himsome Motrin and he was fine for about six hours. He woke up from anap and had a bad fever, he was hot to the touch so I tryed coolinghim down in the sink with some luke warm water. While I was doingthat he started shaking and his lips, hands and feet started turningblue. Well this was a very dark blue some blue I have seen before andits not concerning .So I instantly called 911. When they got therethey started oxyagen and got him to the hospital. The chest xray wasclear and no RSV =). They say that he probably has a VIRUS. they cannever really tell what it is .My biggest concern is that they seen his heart missing a beat andthey have now done and EKG and the put him on a halter monitor. Hasthis ever happen to anyone before or something similar with themissed beat or halter monitor? I have heard a few people talk abouthaving one but not why or what the outcome was . thank youShawn seems to be doing ok and is in good spirits so hopefullyeverything is ok . I will post again as soon as I know anything

Shawns 2nd Haircut

Hi all. Shawn just got his 2nd haircut yesterday. He looks so cute. Like a little mini marine. Shawn is doing great. He had a clinic appointment today for a well baby check . He had to get four shots today and one more in a month and then hes all caught up. RSV in about a week and those seem to be the worst. Shawn was never circumsized because of his surguries they didnt want to risk infection to his heart but the doc noticed it doesnt look right so there sending us to the urolagist to follow up and make sure everything is ok. Shawn still hasnt started walking yet, probably because I want him to soooo bad =). Everything is fine according to the docs its normal for kids not to walk yet. I hope that everyone has had a great week. God Bless.

Kisses

Hi all . Shawn is doing fantastic. =) . He has more and more attitude every day but he is still the cutest baby ever. Shawn has been handing out kisses like crazy. All is well around our house right now. I just started school recently in hopes to get through my gen ed classes so I can start my RN program in January 2010. I am so excited. Shawn has RSV next week and choc clinic for immunizations. I will post again soon. I hope every one is having a wonderful year so far. God Bless

Jennifer

New teeth

Well I thought Shawn was starting to get sick again but to my suprize he has 2 new teeth coming in on the top. There is one on bolth sides, poor thing thats probably why he has also been so cranky. Besides that all is well. Shawns older cousin Stephanie just had her baby on January 9th. He is at home and doing well. As for Shawn when he was in the hospital they started him on one of the meds he was taking a while back Enalapril. Its for blood pressure . The carido doc says it helps the heart function better without having to work as hard. So were looking at the Fontan surgery in spring of next year as long as everything goes well. I am sure it will he has done so great this far . He really is miracle baby and I am thankful for every moment that I get to spend with him. Shawn hasnt started walking yet but he is getting close = 0

WERE HOME =)

We made it home . Just being at the hospital for a couple of days seems like forever. Plus Shawn wasnt getting the much needed rest he needed so he can get better. They come in at least once every four hours and in the middle of that there is nurse assistants, people changing trash bags,and not to mention if you have a neighbor. So many distractions. So still not back to his self yet but he is well on his way. Right now we are battling with Shawn about his wanting to be in mommy or daddys arms all the time. Hes not so happy about that. His Dr says its not good to pick him up every time he crys and that letting him cry will not hurt his heart,so were trying not to pick him as much. Its so hard =(

Shawn admitted to CHOC =(

=(
I am sitting in the hospital with Shawn today . We came into the emergency room yesterday at about 9 pm because of respitory distress and blueness in his hands, feet, and lips. So they did some blood work and his CRP came back elevated with means that he has an infection. They are unable to tell me exactly what type of infection he has so they are treating him with antibiotics. They did some other blood test but they say it takes two dayss to get those tests back . Being in the hospital is always hard especially for Shawn. Not having his brother sister or daddy with him. Not to mention he is pretty close to nana and grandpa since they were kind enough to take us into there house. He is very spoiled. In my eyes he deserves it. So now were just sitting around waiting to see what happens.

I will update soon