Update

Hello All-

I am so sorry that I haven’t been updating this much. We’ve been at the hospital all day, every day, and at night when we return to the hotel, we’ve been crashing from exhaustion!!

This week has been filled with lots of highs and lows. Craig’s parents stayed with us until Sunday morning, and our friends Matt and Michelle came up for a few days and will be leaving in the morning. It has been so nice to have people here. Hannah has been fighting food since this adventure began, so having people to help us with bribes, etc has been wonderful!!

Rather than give a blow by blow description of the week, here’s where we are right now. Tomorrow Hannah is scheduled for a cardiac catheter. This is the same procedure that she had done last winter. Her O2 saturation is sitting in the 70s, and it needs to be higher. There are two possible reasons for this, both of which can be fixed via cath. The first potential issue is that she may have more collaterals forming, which are bypassing the necessary parts of her heart, and mixing blue and red blood. If this is the case, they will need to coil them off. The second option is that when they put a fenestration in Hannah during her Fontan, it might have been too big, and rather than working as an overflow valve, it is continuously letting the blue and red blood mix. If that`s the case, they will need to temporarily plug the hole, see what happens, and if she tolerates and responds well to that, they will plug it permanently.

Another ongoing issue is Hannah`s eating. We have created a mini-mart in the hospital room fridge, and nothing is appetizing to Hannah. So, tomorrow when they knock her out for her cath, they will be putting in a feeding tube. Hopefully is won`t last long, and will just get her over the hump and on the road to recovery.

The next new development is that Hannah has somehow caught RSV. Apparently many of the children in the PICU have caught it, and some of the medical staff has been sent home for being sick. Both Hannah and the 5 week old baby in her room have caught it, and though neither child is showing the true symptoms, they are now isolated from the other children. When we go in, we now have to wear masks, gowns, and gloves...IT SUCKS!!!! I am so mad that I cannot kiss my baby goodnight or hold her hand without a mask or gloves getting in the way. It is so not fair!!!

On the brightside, Hannah has been able to go for walks with us in her stroller, stand and play at the indoor play area, and we were able to wheel her outside for a bit today!! Unfortunately because of her RSV, we won`t be able to do this anymore, but it was wonderful while it lasted!!!

Aside from all of that, Hannah is now breathing room air and doesn`t require oxygen. She has also had her IV line disconnected, and had her central chest tube removed. All that is left are two chest tubes that drain her lungs, an arterial line that will be replaced by a venus line tomorrow, pacer wires that are connected to her pacemaker (which is still using when she is sleeping...grrr), and an IV in her hand that isn`t being used. All in all, not bad.

Thank you all for your continued support. We have been getting asked a lot when we`ll be going home, and we have no idea. Her lung issues (wet lung that was partially collapsed), and some other issues are cleared up, but as long as she isn`t eating and is testing positive for RSV, we`re stuck here. As soon as we are closer to busting out, I`ll be sure to post.

Hannah getting an echo done of her heart...

Standing up and fishing at the Beach Playroom...this is her nurse Aurora...we LOVE HER!!!  We're all bummed that she has tomorrow off!!!

Thanks again!!!

Love,

Sharon