1st clinic visits

We had our first clinic visits back at Stanford on Wednesday. We first went to see the pulmonary doctor who basically just asked how things were going being at home and made sure we didn't have any issues with the ventilator or anything else. She was a little concerned about Caydence's weight gain because she hasn't gained much since we've been out of the hospital, so she had the nutritionist come in and talk to us. We were basically already doing everything that she suggested so all she really told us was to go up a couple more ml's a hour on her feeds. Caydence is still on continuous feeds through her g-tube and one of my questions has been when we can start taking her to bolus feeds, the nutritionist said that she needs to have a more steady weight gain before we take her off continuous feeds. So hopefully she will start gaining a little more weight. While we were there Sarah from pediatric surgery also came by to check on us and see how Caydence's omphalocele was looking. She was very impressed with how it looked, it has gone down so much on it's own and the new skin has grown completely over it. We talked about when we should possibly repair it and there is no hurry. It's not going to hurt to wait a little longer but I'm still on the fence about when I want to go through with it. Since she was there we needed to get Caydence's g-tube changed for the first time so we had her do it and give us a little lesson. Our next appointment was with ENT. The main issue that we are having is that we didn't know how we were going to get Caydence's trachs since Apria is refusing to get them for us. So Dr. Mesner put a scope down her trach to see if she still needed a customized one or if her trachea has grown to put in a normal size trach. But sure enough it hasn't grown that much and she is still 11cm away from using a regular trach. The only way to get the trachs that she needs is to have the clinic order them and who knows if they are even going to get paid for them. At least that is taken care of and is one less thing we need to worry about. Overall everything with ENT went good. They mentioned that she had extremely small ear canals but didn't really go into detail of how that could possibly effect her, we just need to go back in a few months for a hearing test. After our back to back appointments, we walked over to the hospital and visited with our friends in the CVICU. It felt great being back there to just visit with some of the doctors and nurses that we had spent so much time with. I think I was most excited about seeing Julie the NP because she is the one that has taken care of Caydence since her first surgery and she has been the one person that I always trusted to do what's best. Having her see how good Caydence looked and seeing how happy she was to see her meant a lot to me. Caydence was all smiles and showing off which was really exciting. We will be back next month for an appointment with GI, so hopefully we can see some faces that weren't there this time. We were also able to visit with our friend Shelley who is still there with her daughter Chloe waiting for a heart transplant. I don't miss being stuck in the hospital but I sure do miss all the great people we got to know while we were there.  I have some really cute pics I want to share but for some reason I'm having a hard time uploading them, so as soon as I figure it out I will post them..