I miss my bear

I miss my ShawnBear

In just a few days it will be 5 months since I lost my precious baby boy. Yesterday my son Daniel came home from Washington, where he has been living since shortly after Shawn was born . Now I have my older son home and my house should feel complete but it is still so emty. It always will be without my ShawnBear all these feelings are so overwhelming again . I know life will never be the same without him and I still cant figure out how to live without him I miss him so much. I just want to lay and be curled up in my bed all day every day. I know I have other children who need me and I have neglected them in regard to there feelings and how I should be with them . yOu think I would love and embrace them more but I am just upset that I dont have my baby. I want him back and thats the bottom line. I have never in my life felt such horrible pain. I am going to try and blog here everyday so I can track my progress and hopefully get some help from other that have been down this road.

Shawn Sellers passed away Jan 29th 2011

I am still at a loss for words. I miss my ShawnBear so much. Shawn went into cardiac arrest on Jan 27th at home. The total down time for Shawn was 45 min. So the Drs and nurses were not hopeful that Shawn would make a recovery from this. Due to the lack of CPR administered and the neglagence of the EMT's who responded stopped CPR because they picked up a Rythem from his pacemaker and we told tthem multiple times he has a Pace Maker. Shawn passed 2 days later at  Childrens Hospital due to complications from his arrest =((((. I still cant believe he is gone and at most times dont know what to do with myself. I love you ShawnBear Forever and for Always.

shawn at Sea World San Diego

Shawns doing well. I havent posted in a while because things have been uneventful, which isnt such a bad thing . Thhis is a picture of Shawn with his older brother Daniel

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.