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.
6 comments:
I have the utmost compassion for you as well as admiration. keep your chin up, you are doing a fabulous job handeling all of this. God Bless.
My heart aches for you and little Tyler. It would be so hard to see your baby suffer. Sweet little Tyler! Good luck with everything. You are in our prayers.
Often times I feel so blessed to have met someone like you. I honestly can't think of a better mother for your cute little boys than you. I wish I could meet them. Maybe one day. I just wanted you to know that I love reading your blog and even though it makes me cry most of the time, it inspires me to be more greatful, more loving, more patient, and a little more like you. I love you Hermana!!! Hang in there. You're doing a great job!!
He has the cutest little smile! I love that grin, so precious.
I want to thank you for being so patient with your nurses (and doctors). I am a nurse and I know how frustrating it is to try and draw blood on sick, tiny babies with little veins and it's not easy...they are doing their best and don't want to have to poke your baby more than they have to! Just wanted to let you know from another perspective...and NOT to take away anything from what you are feeling...I hope I said it right.
Anyways, you both are so patient with what you have been dealt with. I am seriously in awe! I hope you continue to feel sustainted and blessed for your efforts in sacrificing so much for your child!
Good luck! I hope it gets better soon. I think you are keeping your composure beautifully through this trial. Good for you!
It was so nice to hear from you on our blog. I love how we can reconnect in such an easy way. I just have to say that I am so amazed by you and your family. You are so courageous. I hope for all the best for your little Tyler! I hope it gives you comfort to know that even though we can't do anything for you physically, we are thinking and praying for you out here in St. Louis. -Cari
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