I see that many of you have already been through this, so I just thought I would reach out for a little support. I'm so scared! Let me tell you a little about our story, and I hope it's not too long...
Last Saturday, we brought our 11 month old son Evan to the pediatrician's office because he had a cold virus he couldn't get over. He was getting better, but then developed a 103 fever, so I wanted to get his lungs/ears checked before the long weekend was over. The Ped did a chest Xray, and it came back showing his heart was enlarged. She wanted us to see the cardiologist first thing on Tuesday. On Tuesday, the cardiologist did an Echo and told us that he has an Atrial Septal Defect (sinus venosus), and Partial Anomalous Pulmonary Venous Return. His lungs and heart have been filling with blood flow, and this is another reason why when he gets sick, it's always worse than when the rest of the family has the same thing.
Evan is our fourth child, and it seems like he has had problems from the get go! He also has a peanut and egg allergy, and possible asthma (although I'm wondering if it's just the heart thing and not asthma that has caused him problems).
We are supposed to be planning his 1st birthday party right now, NOT a date for them to rip open my baby's chest and fix his little heart! I have been trying to research as much as I can about his defect and open heart surgery, and it all looks like the results will be great, but I'm still so scared. Everytime I imagine what he has to go through, I just cry.
Sometimes I think I'm totally fine with it, and then other times a parent at school, or a neighbor will ask me how he is and I'll burst into tears.
We also don't yet know when the surgery will be, and this is driving me crazy. The cardiologist was supposed to send the referral to the surgeons office by the end of last week, but the lady who does that was on vacation, so it won't get done until Monday now! I called the surgeons office and she said that as long as they get that referral over the appt. will be early next week. What happens at the initial appt with the Surgeon? Will they do more tests there? (The cardiologist had menioned that they may need to do an MRI)
He also said he wants the surgery done as soon as Evan is 100% well from the virus he still has going on. I just have a feeling it's going to be done on his birthday because he also said they usually do them on a Thursday, and his Bday (oct 7th) falls on a Thursday.
What questions should I ask the surgeon? Does the hospital always have a crib, or can I request a bed, so I can lay next to him once the wires are all out? Do they let my husband and I both stay in the room over night? We only live about 40 minutes from the hospital, but do they offer a place for us to stay, or is that only if you live further away? How long should I expect us to be at the hospital?
The cardiologist said we should consider taking our children out of school for the 1-2 weeks before and 1-2 weeks after the surgery, to make sure no germs or illness are brought into the house. Has anyone else done this? How difficult was it, etc?
I have so many questions! I'm sorry to ramble on, but I feel like I'm in such a fog. If you have answers for any of them, feel free to answer just one or two. Also, if you have a photo slideshow or something showing your childs journey through this that you wouldn't mind sharing, I would love to see.
Finally, we are in the Sacramento area and his surgery will be done at Sutter Memorial in Sacramento. Any experiences there? Would love to hear about it if so! Thanks for reading.
Last Saturday, we brought our 11 month old son Evan to the pediatrician's office because he had a cold virus he couldn't get over. He was getting better, but then developed a 103 fever, so I wanted to get his lungs/ears checked before the long weekend was over. The Ped did a chest Xray, and it came back showing his heart was enlarged. She wanted us to see the cardiologist first thing on Tuesday. On Tuesday, the cardiologist did an Echo and told us that he has an Atrial Septal Defect (sinus venosus), and Partial Anomalous Pulmonary Venous Return. His lungs and heart have been filling with blood flow, and this is another reason why when he gets sick, it's always worse than when the rest of the family has the same thing.
Evan is our fourth child, and it seems like he has had problems from the get go! He also has a peanut and egg allergy, and possible asthma (although I'm wondering if it's just the heart thing and not asthma that has caused him problems).
We are supposed to be planning his 1st birthday party right now, NOT a date for them to rip open my baby's chest and fix his little heart! I have been trying to research as much as I can about his defect and open heart surgery, and it all looks like the results will be great, but I'm still so scared. Everytime I imagine what he has to go through, I just cry.
Sometimes I think I'm totally fine with it, and then other times a parent at school, or a neighbor will ask me how he is and I'll burst into tears.We also don't yet know when the surgery will be, and this is driving me crazy. The cardiologist was supposed to send the referral to the surgeons office by the end of last week, but the lady who does that was on vacation, so it won't get done until Monday now! I called the surgeons office and she said that as long as they get that referral over the appt. will be early next week. What happens at the initial appt with the Surgeon? Will they do more tests there? (The cardiologist had menioned that they may need to do an MRI)
He also said he wants the surgery done as soon as Evan is 100% well from the virus he still has going on. I just have a feeling it's going to be done on his birthday because he also said they usually do them on a Thursday, and his Bday (oct 7th) falls on a Thursday.
What questions should I ask the surgeon? Does the hospital always have a crib, or can I request a bed, so I can lay next to him once the wires are all out? Do they let my husband and I both stay in the room over night? We only live about 40 minutes from the hospital, but do they offer a place for us to stay, or is that only if you live further away? How long should I expect us to be at the hospital?
The cardiologist said we should consider taking our children out of school for the 1-2 weeks before and 1-2 weeks after the surgery, to make sure no germs or illness are brought into the house. Has anyone else done this? How difficult was it, etc?
I have so many questions! I'm sorry to ramble on, but I feel like I'm in such a fog. If you have answers for any of them, feel free to answer just one or two. Also, if you have a photo slideshow or something showing your childs journey through this that you wouldn't mind sharing, I would love to see.
Finally, we are in the Sacramento area and his surgery will be done at Sutter Memorial in Sacramento. Any experiences there? Would love to hear about it if so! Thanks for reading.
