My husband A.J. has Tetralogy of Fallot--CHD and so he had a routine cardiology appointment a couple months ago. He was feeling extremely wore down but he wasn't thinking anything about it having to do with his TOF. The Echo cardiogram showed that his Leak in his Pulmonary Valve got considerably worse and so his Cardiologist wanted to perform another type of ECHO called a Trans esophageal echo cardiogram and that showed that his Pulmonary Valve would need replaced, the 2 small leaks around his patch would need stitched closed, his Right Ventricule is enlarged and would need to be surgically re sculpted, and a separation between the 2 Upper Chambers of his Heart would be stitched closed. And, it wouldn't be able to be performed in our hometown or anywhere close to Kansas but up in Minnesota at the Mayo Clinic. There is no medications that will help with his chronic fatigue until Surgery is done.
I am not going to be able to be there for my husband's Surgery and Recovery and it saddens me deeply but my 3 children need me also and it would complicate matters if I uprooted them and left when I know I will need to be away from Amanda and Lucas when Rebekah needs her next surgery. A.J. agrees that I need to stay with the kids and says he'll recover as quickly as possible. My In laws will be with A.J. but I wish I could be in 2 places at once.
The next step for A.J. is a heart catherization. That has not been scheduled yet. We are hoping he'll be able to have his Open Heart Surgery before the end of the year. That would make 2 open heart surgeries in 2010 for my family.
Please send prayers for the 5 members of MY Family; that 2010 will end with Everyone Healthy
Showing posts with label Tetralogy of Fallot. Show all posts
Showing posts with label Tetralogy of Fallot. Show all posts
Sunday, August 22, 2010
Wednesday, July 21, 2010
NICU and DiGeorge Syndrome
Bekah's doctors kept going back and forth with deciding whether or not to send us home before surgery, when surgery would occur, etc. There was so much information thrown at us all at once. It was very confusing at the time.
She was not eating well at all. She was getting sick every bottle so they were needing to NG tube feed her but she would get sick even then. It was very hard to watch her struggle so hard and get so tired so easily. She did not like the NG tubes and kept pulling them out but since she wasn't taking enough by bottle; they needed to keep inserting new ones.
All the tests that they ran for her digestive system came back negative so nothing was wrong there. After many trials and errors; it was concluded that it may just be Reflux and hopefully she will outgrow it. She was also put on the Sensitive-Lactose Free Formula. After a few weeks, she was starting to eat very well and gaining weight.
At one of many ECHOs that she has had, they discovered that her Main Valve is leaking which made them want to do her first open heart surgery sooner than later. We would definitely NOT be going home before surgery. Now it was a waiting game to see when Surgery would be scheduled. And, once again they went back and forth. She was stable enough to wait on surgery BUT we also couldn't go home. It was a little frustrating to say the least.
If that wasn't enough... They had some genetic testing done because of the type of CHDs my husband A.J. and Bekah has co insides with DiGeorge Syndrome. They were both positive for DiGeorge Syndrome(depletion of Chromosome 22q); which also has many other symptoms along with CHDs. ( Tetrology of Fellot and Truncus Arteriosus).
She was not eating well at all. She was getting sick every bottle so they were needing to NG tube feed her but she would get sick even then. It was very hard to watch her struggle so hard and get so tired so easily. She did not like the NG tubes and kept pulling them out but since she wasn't taking enough by bottle; they needed to keep inserting new ones.
All the tests that they ran for her digestive system came back negative so nothing was wrong there. After many trials and errors; it was concluded that it may just be Reflux and hopefully she will outgrow it. She was also put on the Sensitive-Lactose Free Formula. After a few weeks, she was starting to eat very well and gaining weight.
At one of many ECHOs that she has had, they discovered that her Main Valve is leaking which made them want to do her first open heart surgery sooner than later. We would definitely NOT be going home before surgery. Now it was a waiting game to see when Surgery would be scheduled. And, once again they went back and forth. She was stable enough to wait on surgery BUT we also couldn't go home. It was a little frustrating to say the least.
If that wasn't enough... They had some genetic testing done because of the type of CHDs my husband A.J. and Bekah has co insides with DiGeorge Syndrome. They were both positive for DiGeorge Syndrome(depletion of Chromosome 22q); which also has many other symptoms along with CHDs. ( Tetrology of Fellot and Truncus Arteriosus).
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