Tuesday, August 17, 2010

Setting the consult

Mike called the surgeons office this morning, and he is waiting on a call back. They will want to do a consult prior to the surgery itself so we can meet the team. We are going to try to set the surgery for mid September after Jude's birthday. Mike would teeter last night between being alright with the surgery, and still feeling defeated. He said he thought it was better to do this while Jude is young vs when he is older. He said "God forbid he is older and still not communicate he is in pain, so he would just lay there in pain". Honestly, I am not sure Jude's brain properly relays what pain is all the time. Last night I nicked his poor little finger while cutting his fingernails, and he laughed vs cried. That's how he reacts during his seizures a lot, he will laugh hysterically.

Mike also spent some time downstairs with us last night as a family. I got him to look at places we might go off on our vacation February. I told him I wasn't sure I could afford it, but I was going to sell my little heart out at Scentsy for the next few months. He seemed more interested in the idea of us going somewhere, and started investigating places to stay. He also had a large function on Thursday night where he will be able to promote his photography, and I think that will be good for him.

Thank you for the amazing outpouring of support, and advice yesterday. I so appreciate the kind words, and Jocalyns nice phone call. I will take everyone's advice into consideration when we go in for the consult. I did find out that the surgery will be performed at a surgery center vs the hospital. This led me to wonder about Jude's medicaid vs health insurance, this may lead to issues, but I don't want to tell Mike that yet. If that's the case then we will travel to Cook's where I know they can help us out.

One good piece of news. I am down 4 pounds since starting my diet. Bad news is I have a HUGE obsession now with Pei Wei Vietnamese salad rolls. Not the wraps, the rolls. They are 80 calories a piece......and they ate YUMMY!


Reagan Leigh said...

First of all, I think both you and your husband will be overjoyed with the g-tube. It takes a huge weight off the shoulders of the caregiver. I know how your husband feels now, but I think he is going to be so happy afterward. On another note, I would be hesitant to have a surgery performed anywhere but a hospital. This isn't a regular healthy kid they are dealing with...he has seizures and you need someone close by just in case something happens. Texas Children's wanted to do one of Reagan's cataract surgeries at an outpatient surgery center and I told them NO! She just has too many other issues and I wanted her in a hospital setting just in case there were any complications. That's just my opinion.

jocalyn said...

i also second tera's comment...especially since this is the first time he will be under. at the out-patient hospitial will they be able to perform the mri too? it would be silly for him to go under more than once for those two things. cooks will definitely work out the details for you.

Jamie said...

I third Reagan's comment. Anna had multiple EGDs done at the surgery center but we made sure the button was placed at Cook's. Also- they kept Anna for one or 2 days (I can't remember how long) to make sure she was tolerating feedings and that her pain was under control. I would not let them send you home right after. Anna required IV pain meds for about 12-18 hrs. They started her on pedialyte feedings a couple of hours after surgery and then did those overnight and started the formula feedings the next day. I would really push for Cook's!

Holly said...

What they said :-)

I'm glad ya'll made the decision. It doesn't seem like it now, but it really will make life easier.

And the defeated thing....Try not to feel that way. The button can always be removed when Jude gets his appetite back.

Stephanie said...

I don't comment often, but I am going to weigh in here too....I agree with the previous comments. You want to be someplace that is equiped to handle everything - especially with the seizures. Frankly, I'll be surprized if anesthesia would agree to do the surgery in an outpatient clinic. You can go into the hospital on a 23 hour hold - same thing as outpatient - and be assured that there is always somebody there in case....

As for the G-tube, PLEASE pass on to your husband that he should NOT feel like a failure. The tube is a tool - just like AFO's or a wheelchair. Continue with your feeding therapy so Jude doesn't develop any aversions, and once he is getting full nutition for awhile - I am going to bet you are going to see him grow by leaps and bounds. :) My hope is that it will cut down on some seizures too.

Sending good thoughts & prayers your way. :)

Steph and Christopher