Friday, March 12, 2010
It's been too long since I updated. Things have been busy getting back into the home schedule and getting my older kiddo's nerves calmed down after the MRI, emergency hospital admission, and Cath. Everyone is settling down and things are running as smoothly as you would expect with the stress level. Ethan got to come home the day after his cath but through a comedy of errors (that's the nice way of putting it) we weren't able to get him into echocardiography. So he went home without one. His second x-ray came in beautifully and he is doing well. We did find out when we talked with his cath surgeon that it wasn't just his pulmonary artery that is undersized. HIs whole right lung and all the arteries leading to it are very undersized. This means we have a brand new diagnosis of hypoplastic right lung to add to his already two line long heart diagnosis. This explains why his 02 desaturates with exertion. Now that he has his stent he is slowly getting faster about pinking up for us when he sits down. In the past few days he has started to sit down when he is gasping instead of just keeping on. He's learning his limits. Which makes me happy and sad at the same time. No 19 month old should have to limit his activity. We'll just have to keep a close eye on him like we have done since the day he was born to watch for even small changes in his saturations or his activity. There is really nothing else they can do other than hope that the stint will encourage that lung to grow more now that it has better blood flow. We're now one step closer to his Fontan surgery, but have also staved it off because of the bandaid that we just got in the cath lab. I'm so grateful that he hasn't had to have his Fontan early as his chance of survival at this point is just flat scary. I am also very grateful for the prayers and well wishes that I have received through my internet connections. I couldn't do this without my Heavely Father and you!
Wednesday, March 3, 2010
It got too busy to update last night so I'll do my best to remember everything this morning! The artery ballooned open beautifully...and then it went right back to how small it was before...so Ethan has a brand new stint in the right pulmonary artery. I even have before and after pictures that I will have to post when i can scan them in at home. He came out of anaesthesia really well...minimal fussing and very thirsty. He's swollen because of the IV fluids they pumped him full of and his kidneys are releasing the fluid with a single dose of lasix. We held him in the recovery bay for two hours and then got moved downstairs to our home away from home, 15th floor of West Tower. His pressure bandage was removed a little after one this morning and he finally slept soundly at 4. they came in a little while ago for another chest x-ray and we are waiting for those results now. He will have an echo cardiogram and be started back on his aspirin (which is his only heart medication currently) before we are discharged later today. Hopefully I will be able to update a little later after we know more. For right now we are grateful that yesterday is over and that he is doing so well. Thanks for all the prayers and well wishes you guys!!!
Tuesday, March 2, 2010
Got the update call a few minutes ago..They are now attempting to balloon his pulmonary artery...we are hoping that the artery responds and doesnt' shrink back too small after the balloon is removed. If it shrinks too much they will place a stint. We are starting hour 4 for surgery now...but should have another update within the hour...
We arrived at the hospital this morning at around 8. We left Lufkin at 5. We were back, checked in and in the holding bay for Ethan's heart cath at 9. He was supposed to have his cath around 10. They finally took him to the back for his cath at 3:15 this afternoon. That was a long long wait. He was so good waiting! He played with toys and didn't complain once even though I know he was starving. He hasn't eaten anything since 8:00 last night! At 5:10 we got the update that he has a cath in the femoral artery in one leg, a sheath in the femoral vein in the same leg, and a cath in his coratid (spelling) artery in his neck so they have access to all areas of his heart...I'm thinking they had to come at it from both angles because of his PA band but I will confirm this. Thank you for your prayers for Ethan! Please continue them! And also please add the little girl that was case' # this morning. They had to do twice as much in her cath as they had planned and she is back in CVICU....not a fun place to be. More to come soon...