Monday, April 30, 2012
After an early Friday morning adventure that ended us in CHKD overnight, we are back today(Monday) for Shane's scheduled heart cath. this will map our repair journey for his heart and also determine his tolerance for anesthesia. His hernia became incarcerated Friday and so this has now jumped to priority 1 on the list of repairs. we may be looking at surgery late this week bur the docs think this is best(we agree). They were very impressed with the size of his hernia and difficulty of putting it back where it belonged.
Praising God for great doctors!
Sunday, April 29, 2012
Monday, April 23, 2012
Wednesday, April 18, 2012
I cannot believe we have been home almost 3 weeks without an update! Sorry!! Tom and I both arrived home with a nasty virus and took every bit of a week to finish its course. Then Shane and my mom got it and now Olivia is recovering from it! I guess we brought home some type of Hong Kong Flu-ey. We are trying to find our new normal now. I have such admiration for mothers of many as it's been a while since we had more than one little person. Things like going to the potty alone, getting the laundry washed, dried AND folded, cooking a real meal and , oh yeah, showering and putting on a bit of make-up. I know you think I can do some of those things at night after little people are in bed...HA! I am too tired!
Updates: Tom and I took Shane to a fairly comprehensive check-up with his cardiologist. After echo, chest Xray and long ultrasound of the heart, Dr. C felt he had a great picture of Shane's heart anatomy. He has a large VSD and no pulmonary valve. The pulmonary arteries are there but not in use..at least as they should be. Shane has multiple collateral vessels that are doing a good job keeping his blood oxygenated. His sat levels are average close to 90. We were set for a heart cath 16 April, but we had a hospital stay for high fever and rash. I took Shane to the ER when his temp spiked 105 and the Tylenol wasn't touching it. Thankfully we got permission to use ibuprofen and antihistamine for the itching. He still has a cough which he had when we got him so not sure if this is part of the heart/lung stuff or allergies even.
Our next big hurdle is the heart cath now scheduled for 30 April. Praying he stays healthy for that. Then we'll talk with doctors as to the plan of action for surgery! We are so happy that the doctors are optimistic that his heart can be repaired. Tentatively, we are looking at Children's Hospital Boston. While this is a long way from home, we have friends there since we were stationed there about 10 years ago and there is a PC who is an expert on Shane's type of heart anatomy and at Shane's "advanced" age. We are praying that Langley agrees for us to receive treatment there since it is best for Shane....we hope to hear about that in the next few weeks. If so and the cath shows no huge surprises, surgery will likely be in about 2 months.
At home are making some progress with eating. Shane has decided milk is okay and even some meats. I still feel it is a struggle to find what he will want at any given meal. Olivia was sooo much easier as she pretty much wanted everything we ate. i think Shane is starting to trust us more with what we offer to him. I do try to fix a few things that he remembers from China...that helps. He loves watermelon and strawberries...steamed carrots and several other veggies. HE gets along well with all of the children adn plays pretty well with Olivia. She is super sweet to him...a bit too much for him at times and he'll protest. His walking is improving a lot. Stairs are very scary. Finally, he will crawl up them but he really has no sense of danger so we have to stay with him on the stairs. He would just as soon walk off the top one without a thought which is very scary for this momma! This is where squeaky shoes are a great advantage! I do know where he is as long as he is moving : ). We are scheduled for more doc visits for teeth, hearing, child development, and most likely more blood draws at some point later to see if we really need all the vaccinations. We are going to approach those with added caution.
Thank you to all who have sent words of encouragement! It truly means a lot to us! God has been more than gracious to us as we adjust to our precious little boy! We are so very blessed to have him as our son!