Tyler's Cardiac Appt

Danny and I get these bills in the mail and we don't even know what they are for. Makes health insurance really easy to pay. We are very grateful that we asked for money to help with Tyler's medical expenses this year for Christmas instead of material things. Giving the opportunity to have better health is the best feeling. I am so grateful we live in a country that allows Tyler to receive the treatment and surgeries that he needs.

Our Cute Boy. He is such an inspiration to me. He smiles amidst all that his little body is going through. I so wish I could trade places with him at times, but know that he is such a special little guy that is teaching me so much with his strong spirit and desire to fight. For that I love him that much more and am so grateful he is our son.

Well, Tylers oxygen sats hung out in the 60-70's, but got into the 80's after much coaxing and encouraging. That could have been better. His weight was 10.1 lbs so that was not good news. We could tell his weight has not been doing well. Basically we had a child who was not thriving to really not thriving...degressing. I was promised that there was a GREAT pediatric tech to draw blood, which I am sure she is but had a hard time with Tyler. One art line collapsed, second line collapsed in his wrist which are really uncomfortable. I was told after waiting to see if they had enough blood that they had enough and I could leave....2 hours later. I got the results back, which are better, but still not very good and there was no bilirubin result which I thought was weird. Got called at 415 on my way to work and a banquet I was in charge of for 200 people to tell me to bring Tyler back because there wasn't enough blood to run bilirubin levels. I felt SOO bad for him. It is just so sad to see your kid all bruised up and so sad. His sats aren't doing well and his weight gain isn't doing well which most likely indicates he needs his Glenn procedure. I was told that Hypoplastic kids generally plateau prior to this surgery because their hearts are working harder and need that surgery to get a little break. Basically the calories other kids use to gain weight are used by his heart working extra hard for his little body. Not to mention that he is often uncomfortable which doctors say can very well be linked to his gallbladder/bile issues. I have never had junk in my gallbladder, but people have told me it is really uncomfortable. Our poor little man. Hopefully next weeks appt goes well and we will be able to go ahead with the Glenn in a month. We go see Dr. Rosenthal at UCSF next Thursday. Better day tomorrow.