Hi everyone,
Christian's surgery was approved through our insurance so yesterday I was able to talk with the scheduling lady and set a date for his surgery. It was sort of a crazy thing because I was actually right in the middle of shopping at Hobby Lobby when I got the call. I guess I should have went back out to the car so I could talk to her more freely but she was just giving me the date and time so there really wasn't anything more than that that we needed to discuss.
The surgery has been scheduled for June 26,2018. I was hoping to get it a bit earlier, but I wanted the boys to be finished with school first. That was the earliest they could do it for summer time. It also gives us a little more time to prepare and get things together that we may need. I'm going to be calling the Chest Wall Center today and scheduling a Family Education Session. I'm guessing that's where we will go to learn about the surgery and get information about the things that will be going on before, during, and after the procedure.
Please continue to pray for my boy. I think he's feeling a bit nervous at times about it. But, he doesn't let on like he is. I talked to him about it the other day and was asking him how he was feeling. He told me he doesn't feel nervous or scared but he's not mad that he has to have surgery. I think he really wants to get his chest fixed. I think it bothers him a lot. Not physically but just knowing his chest looks so different from other people's. I can't wait until this is all over and he can start healing and getting back to normal!!
Thanks for reading,
Emily
Thursday, March 29, 2018
Tuesday, March 13, 2018
Our Journey with Pectus Excavatum: The Second Tests and Update
Hey guys,
I'm terrible with this blogging thing. I'm so sorry I haven't updated sooner. If you read the blog post before this you will see that Christian went for his EKG, PFT's, and Allergy Patch Test. Three days later we returned to Children's Hospital for his Cardiac MRI and to have the Allergy Patch Test read. He did great with the MRI. He had to lay very, very still for about 45 minutes. He was able to watch a movie during that time which was so cool. I had no idea how that worked, but he told me he wore a pair of goggles and that is where he could see the movie. But, because he couldn't wear his glasses he said it was blurry. lol I think he was watching Green Lantern and he obviously didn't get to watch the whole thing so we will probably rent it at some point. Unless of course it's on Netflix.... 😛
After the MRI was finished we went to have the allergy patch read. They were all negative which is awesome!! So, that cleared him for surgery if he in fact needs it.
I didn't hear anything from his Dr for about a month afterwards. That was a mistake on my part. I got out the papers they gave me and it said that I needed to call them to find out the results.... Whoops!! So, I called yesterday and got in contact with the Dr's assistant, aka the sweetest lady on earth!! She went over each of his tests and y'all, his numbers are scary!! Now, I'm not exactly sure what all of these numbers mean so please bear with me. She was reading off the MRI results and told me that a normal range is 2.2-2.5 (again, I'm not sure what unit of measurement that is.....) If it's greater than 3.3 that's when they consider it significant enough for surgery.... Christian is at 5.7. Another measurement they took is normal at less than .2, Christian is at .6. They looked at how much they will need to lift his chest. Anything over 10% needs surgery. Christian is at 30%. His sternal torsion is deeper on the right side. The MRI didn't show any compression on his heart but the assistant told me she thinks there is some due to the other tests he had which I will get into soon. His aorta looks normal but his ejection is low. The ejection is how much blood his heart is pumping through his body. Normal is 60-65%. Christian is slightly low at 59%. His z-score was -1.46. She said they do not want it to go below -.7. 😟
Now for his PFT's. The regular breathing exercises he did all came back normal. But, the exercise test showed low oxygen saturation which could be cardiac compression. His heart isn't able to pump as much oxygen through his veins as it's supposed to which is why the assistant believes there is some cardiac compression. His EKG was normal.
As of right now they are sending it through the insurance and we should hear something within 1-6 weeks. He may be having surgery within a few months from now. It really is such a worry on this Mama's heart, but I do know God has got this. I trust Him and know He will get my boy through all of this. I'd really appreciate any prayers and words of encouragement for my boy. I'll update more as I can!! Thanks for stopping by and reading!!
xxoo,
Emily
I'm terrible with this blogging thing. I'm so sorry I haven't updated sooner. If you read the blog post before this you will see that Christian went for his EKG, PFT's, and Allergy Patch Test. Three days later we returned to Children's Hospital for his Cardiac MRI and to have the Allergy Patch Test read. He did great with the MRI. He had to lay very, very still for about 45 minutes. He was able to watch a movie during that time which was so cool. I had no idea how that worked, but he told me he wore a pair of goggles and that is where he could see the movie. But, because he couldn't wear his glasses he said it was blurry. lol I think he was watching Green Lantern and he obviously didn't get to watch the whole thing so we will probably rent it at some point. Unless of course it's on Netflix.... 😛
After the MRI was finished we went to have the allergy patch read. They were all negative which is awesome!! So, that cleared him for surgery if he in fact needs it.
I didn't hear anything from his Dr for about a month afterwards. That was a mistake on my part. I got out the papers they gave me and it said that I needed to call them to find out the results.... Whoops!! So, I called yesterday and got in contact with the Dr's assistant, aka the sweetest lady on earth!! She went over each of his tests and y'all, his numbers are scary!! Now, I'm not exactly sure what all of these numbers mean so please bear with me. She was reading off the MRI results and told me that a normal range is 2.2-2.5 (again, I'm not sure what unit of measurement that is.....) If it's greater than 3.3 that's when they consider it significant enough for surgery.... Christian is at 5.7. Another measurement they took is normal at less than .2, Christian is at .6. They looked at how much they will need to lift his chest. Anything over 10% needs surgery. Christian is at 30%. His sternal torsion is deeper on the right side. The MRI didn't show any compression on his heart but the assistant told me she thinks there is some due to the other tests he had which I will get into soon. His aorta looks normal but his ejection is low. The ejection is how much blood his heart is pumping through his body. Normal is 60-65%. Christian is slightly low at 59%. His z-score was -1.46. She said they do not want it to go below -.7. 😟
Now for his PFT's. The regular breathing exercises he did all came back normal. But, the exercise test showed low oxygen saturation which could be cardiac compression. His heart isn't able to pump as much oxygen through his veins as it's supposed to which is why the assistant believes there is some cardiac compression. His EKG was normal.
As of right now they are sending it through the insurance and we should hear something within 1-6 weeks. He may be having surgery within a few months from now. It really is such a worry on this Mama's heart, but I do know God has got this. I trust Him and know He will get my boy through all of this. I'd really appreciate any prayers and words of encouragement for my boy. I'll update more as I can!! Thanks for stopping by and reading!!
xxoo,
Emily
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