They are still trying to figure out why Julia’s heart is enlarged. On Saturday, they went in with a catheter up a major artery into her heart to take pressure readings at different places within the heart. (Amazing they can do that on a 7-week old baby!) They also took a small sample of heart tissue and are now in the process of biopsying that tissue. (We should be getting the results of that today or Tuesday.) When they went in with the catheter, it was determined that everything was within a reasonable range of what they’d expect for a baby with an AV canal defect (I can’t say that they determined everything was “normal” because her heart is not normal right now.) So it does not appear to be a physical issue causing the enlarged heart. So now they are trying to determine if a virus is affecting the heart. They had to sedate her for the procedure at 1:00pm. She was still rather sedated at 10pm that night. So she had a breathing tube. But she was finally stable enough that it got taken out later that night. Sunday, it was discovered her hemoatocrit was low. (Hematocrit is a blood test that measures the percentage of the volume of whole blood that is made up of red blood cells. This measurement depends on the number of red blood cells and the size of red blood cells.) So they ended up giving her a blood transfusion. I guess she was warmer, looking much more pink and doing better after that. After 2 days of not getting any food (milk,) they started giving her some last night in very small quantities. That had to make her happy! She is on medication to help the pumping of her heart, medication to keep her from blood clotting (after getting the catheter), a diuretic to keep fluids down in her lungs, as well as several others. She is still snotty. Today, they put a higher level of air flow into her nose (CPAP) to help her lungs not work so hard. (She seemed to really like that. She is much more peaceful with it in.) I guess one side of her lungs is a little collapsed behind her heart since her heart is taking up so much room. She has been a bit of a mystery to all the doctors. They have not been able to make concrete conclusions. There will be a huge “pow wow” of sorts with her entire team of medical professionals (surgeon, cardiologist, pediatrician, etc.) on Wednesday to determine if she needs to have surgery right away. She is currently assigned to Dr. Reddy if she was to need surgery and he is one of the best in the world! So I know she is in good hands.
I got to hold her last night as well as today. That was good. But I hate seeing her in the state she is in. She has so many tubes and wires connected to her. Overall, she is doing “better.” But she still doesn’t look great. It is such a helpless feeling. I want her to be better and there is nothing I can do to help make her better. Bob has been such a trooper through this, too. Despite his strong dislike of hospitals and doctors he has been so supportive and involved. He has also been wonderful with Mattie by spending quality time with her and helping out with her. I appreciate him so much.
I will keep updating you all. I have gone back to emailing (vs. only using the blog) since things are changing so often. I will continue to post all emails on the blog. Feel free to pass along this email or share Julia’s blog address with anyone who might be interested. I appreciate every prayer. (Oh, and by the way, Mattie did not have an ear infection. So that was good. Her ear isn’t bothering her anymore.)
Please pray the doctors are able to figure out what is going on and are able to make the best recommendations for her care. Please pray the biopsy of her heart tissue comes back today. Please pray that she can remain peaceful and comfortable.
Much love,
Val, Bob, Mattie, and sweet little Julia.
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