Sedated Echo Oct.16

Sorry no cute picts of  my boy. I knew we had to be there for an hour before our echo was scheduled... I did not however plan on them being an hour behind schedule. I did not bring my bag-o-wonder. I had to entertain a nearly naked diapie boy for 2 hours with what I had in my purse. He couldn't eat or drink anything so there when the majority of the entertainment. He kept saying " ona wink", he was so thirsty. I tried to wake him up and give him a bottle before he had to go NPO, but he'd rather sleep. So by the time the NP who was doing the sedation came in Sev had bows in his hair, and threw a plastic cockroach at her. He went through an entire bottle of bubbles- thanks Tiff! We love Tiff she is a CHDer herself and she works in Cardiology Clinic. I had to chase him around the clinic. The wall is painted with fishies and they had the Halloween decor up. He had to go see the "fifhs" and "bidies" and pumpkin- I really have no idea why he can say pumpkin but not fish or spiders. He was so brave for the IV. It was really hard for me. He kept saying "don't mom" and looking at me with his pleading eyes. We had the whole IV Team singing ABC's and Twinkle, twinkle little star. They were awesome! As hard as it is for me to see him go through painful things I will never leave him alone. We both cry, and hug each other tight after its all done. The echo was great. He has had some decreased function in his left ventricle since his Glen. But it is not worse, and his Glen has great flow. So we are good for the 15th. He MUST stay healthy. He already has a cough and runny nose that will hopefully clear up over the next month.
Afterwards they took us up to recovery in same day surgery. We had kids all around us who had had different surgeries. After about a 1/2 hour of me holding Sev, and drinking a "flushie" and "brite", he perked right up. He wanted me to push him for a ride in his bed again. His nurse told him he could have a wagon ride when it was time to go home. Then it was "wagon, Sev, ride, now" with his finger pointing at anyone who would listen. He discovered the TV remote. He found his way to a football game. He shouted" go, football,go!" and "run, football guys, go!"I guess he is a fan? Sometimes he would say "mom" over and over and over just to hear me say "yes" or " what", I was standing right by him. Then he saw a nurse giving her patient some apple juice in a sippy cup. Oh you bet next time his Mary came by he let her know he wanted "juice, sippy, now". He wanted to know everyone's name, and when we left he said bye to everyone by name. He is a charmer, and everyone who meets him loves him.
Since being home his sats have been in the toilet. His lungs are clear. But I had him on 1.5 liters of O2 last night to keep him in the 70s. I'm going to call Cardiology about that one.

Upcoming Cardiology Appointments

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.

MMHS Homecoming Sept 22, 2012

Happy Birthday cupcakes!

Morgan and Kyle

Morgan's 18th Birthday!!

small travel size toiletries

earrings that match her dress for the dance

firstaid kit and lip gloss

And a lovely luggage set

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. 

Cardiology Appointment Aug. 28 2012

He is being so brave about the EKG stickers.

Look at that lipIn 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 is so very helpful by holding up his shorts for the blood pressure cuff. He sat so good through all FOUR blood pressures.

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!

Neleh always takes her time getting out of the van, well doing anything that is.

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!