I almost forgot to post.... We have dates!!!
October 16 is the sedated Echo- this will be at PCMC, hopefully I can talk them into lettting him do an oral sedation and he won't even get an IV poke! If not it is just IV sedation, so no intubation, no leaving Mom and Dad
Surgery Date is November 15 with pre op labs the day before. This is the 3rd Open Heart Surgery that we knew he would need. After this he may need a pacemaker when he is a teenager, or a transplant. Thom asked me how I felt about this date... nothing really... I've asked all the questions I know of. The worry is always there but the alternative to surgery is death and that is exactly what I have been trying to prevent. I never thought Heart Surgery would be so casual to me. The past 2 1/2 years have taught me so much about life, myself, my family, my husband, and our purpose. Severin's heart is telling us it is ready for the next step, and we are on this journey with him, so away we go.
Wednesday, September 26, 2012
Morgan's 18th Birthday!!
all in support of Thoms "get the crap out" plan
Seriously we couldn't ask for a better Daughter/ now Adult. She has mailed in her voter registration info so she can vote in the upcoming election. She has her Senior year of classes scheduled out. ACT in October, college applications in by December. Wow she really is growing up!
oh what to do when the Bebe out grows the crib?
When Morgan outgrew hers it was an exciting rite of passage
When Johnathen was 2ish he would jump out of his crib. So for his own safety we graduated him to a big boy bed.
Neleh never outgrew the crib, she was kicked out when we brought Severin home form the hospital.
Now Sevie is the baby, he isn't jumping out, he isn't getting a new sibling, but he is having a surgery that will make it so we cannot pick him up from under his arms for 6 weeks. I think that is when he will graduate to a big boy bed. For now I will enjoy trapping him safely in his cage.
Thursday, August 30, 2012
Cardiology Appointment Aug. 28 2012
He is being so brave about the EKG stickers.
Look at that lip
In 2 plus years going to Cardiology appointments I forgot his journal this time. So I didn't have my list of questions or anywhere to write his vitals.
He lifted up his shirt so Dr. Su could listen to his heart
So the appointment confirmed what I already knew. It is really nice not to be blind sighted anymore. Severin's heart is telling us it is time for the Fontan. He needs a sedated echo in October, and his surgery will be in November. Now I await that dreaded (but necessary) call from Linda. Dr. Su would like him to gain as much as he can until then. He is doing great all things considered, and I would expect nothing less from this little SuperHERO.
sometimes that Neleh cracks me up!
On this day I brought in Sev. Trash to the garbage and I'm sure my arms were full. But Neleh took a little longer than usual. I looked out and she was still in the van so I let her just work her way in. There is NO rushing this kid or be prepared for a major freak out.
So next time I get in the van, this is my steering wheel.
Note to self do NOT leave foam stickers within Neleh's reach.
When Thom gets in to drive, she tells him "I made it for a surprise, and my neck got so sweaty!"
Thanks for your sacrifice Sis, you put a smile on my face!
nothin' like a summer rain storm in Utah
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