Burke passed his swallow study which means that he is not aspirating liquids any more!!!! YIPPEE!!! I could not have asked for a better gift and I know that Heavenly Father had a huge hand in seeing that that blessing came to pass. We are so thrilled. So, this means that Burke can finally drink from a normal cup,
sippy cup, and through a straw again!! He has been drinking non stop since yesterday! We are so excited for Burke to feel like a normal kid again. The only bad thing is that he still has his feeding tube in. Yeah, I know!! The doctors wanted to make sure that he would still get enough liquid during the day, so until he can prove himself the tube stays. I just plan on not using it and feeding him like a regular kid, unless he doesn't eat or drink enough during the day. So, tube is in there for now-which I am okay with-for now!
We got home yesterday about 4:30pm and we were
exhausted!! Burke went down at about 7pm and he only woke up once (which I guess he was up for awhile according to our neighbor who saw Tyler and Burke out on a walk at about 10:30pm). I was out at about 7:30pm so I never knew about this "midnight walk" that was taken. All I knew was that Burke ended up in our bed (I guess after the walk) and I woke up about 1:30 am to put him back in his crib. Ty has been out working in the yard all morning, so I guess I better get the whole scoop on what really went on last night. I am just glad I was asleep through it all (sorry Ty)! Anyways, we woke up this morning about 9am and Burke has been his regular active self since. I am so glad this recovery has gone so well- it was
definitely a breeze compared with open heart surgery!
The doctors put together a plan as to what will happen in the next few months. They want to see Burke back in about two months to see if the left branches of his pulmonary artery have stayed open and have grown since yesterday. They will do non-evasive testing then such as an MRI, a CT scan and a profusion test for his lungs. They will then gather all the results from all the tests over the past few months and in conference with all the doctors put their heads together and come up with the best surgery plan they can. From there, if those arteries are big enough, then they will schedule his full repair surgery (The
Rastelli procedure) a couple of weeks later. So, in short, if his
LPA's grow, then in about 3 months Burke will have his full repair done on his heart and be a new man!!! Isn't that crazy. We have waited for this for a long time. It is obviously not a done deal yet, but we are so hopeful. Thanks for all your comments and prayers offered in Burke's behalf they are so
greatly appreciated and we know they have helped a ton!