We're a regular family dealing with extraordinary circumstances! Our children are Zachary, Eli, & Charlotte. Eli was diagnosed with multiple heart defects when he was 10 weeks old. This blog is a way to follow the progress Eli & our whole family makes as he lives a whole life with half a heart. We have been blessed in so many ways. We chose the title "With Every Little Beat..." because we've come to realize what a gift every moment truly is.
Friday, February 20, 2015
Hematology Update
If you don't remember, Eli had some preop blood work done that resulted in bleeding times that were longer than expected. That was worrisome because of his upcoming tonsillectomy. So his ENT wanted him evaluated by a hematologist.
Eli's hematology appointment went well Wednesday. It was a long appointment as the doctor had to get a lot of family history from me and Eli got very restless. After a long discussion and a physical exam, he wanted to get some labwork drawn from Eli. They drew seven or eight vials from him :( He cried a lot but didn't fight it too much. They were retesting his bleeding times and checking for a bleeding disorder called Von Willebrand Disease.
Dr. Nakkar (hematologist) said as far as he could tell, he wasn't concerned that Eli had any underlying bleeding issues. Unless the labwork came back showing anything abnormal, he felt we could proceed with surgery as planned.
Today, he called me with some of Eli's results. The preliminaries of Von Willebrand Disease were good so far. The finals of those won't be in for several more days, but Dr. Nakkar doesn't feel that is an issue and we needn't worry about it. Eli was also had two tests of his bleeding times. One was normal and the other was increased. He discussed many different things that could affect it, but his feeling is that Eli has a slight Vitamin K deficiency.
Again, he doesn't feel this is anything that requires major intervention on his part. He wants Eli to take a prescription Vitamin K tablet for five days prior to surgery. That's all. He (or his office) will let the ENT know that from his standpoint, Eli is cleared for surgery. He did ask specifically when the surgery is, just so he can be aware and available if need be. But he was also clear that he doesn't anticipate any problems.
So, we picked up Eli's vitamin K prescription today so he can start it tomorrow (Saturday). Surgery is still set for Thursday and we'll have more details about that soon. As I type this, Eli is snoring away on the couch. It's kind of cute, but now that we know how bad his sleep apnea is, it's actually sad to me. I used to enjoy him waking in the night for snuggles, but now I realize it's because his body won't let him have the rest he needs and deserves. I still hate the thought of another surgery for him, but I know he needs this and will benefit from it. I just don't like that everything has to be so hard for him. Even a "simple" procedure like a tonsillectomy and tubes in his ears has been quite an ordeal and we're not even to the surgery yet!
Please keep him in your prayers. We've not yet talked to him much about this. We'll start more this weekend as we begin packing for several days in the hospital. He's so young, but he's so smart especially about medical events. The poor kid has been through so much and he knows more than he should. Hopefully we can assure him this is good and will help him. In four-year old terms. Thank you for the prayers. We really appreciate them and all of you!
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prayer he has and i hope to get to see you and him when you are up here. Right now it is snowing and we are suppose 6- 8 inches.
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