We are still waiting for an opening in the surgery schedule. A transplant became available on Friday so that bumped everyone back a bit. We will be able to be in surgery at the earliest next Tuesday, but the doctors constantly tell us to not be surprised if we are bumped back later in the week or even the beginning of the next week. It's getting long but we are used to the idea of not going anywhere. We also decided that if he still has the IV in his head for Halloween that we are going to paint the IV cover grey and get a copy of the Jaws theme music to carry around when I get to take him for a walk in the halls during the day.
I got a mobile from the playroom today for his crib. Kind of made me sad. Around here, you aren't considered a "resident" until there is a hospital owned mobile hanging over your bed. He loves it though and it gives momma a break from holding him when he is fussy...he just looks and the mobile and starts smiling and cooing. You can't help but love the little turkey...just wish he didn't hav eto go through this. A mom I talked to today told me something that didn't make sense to me until I thought about it for a while. She said, "Heart kids carry the scar, but the moms feel all of the pain". While that is not true of the physical pain of open heart surgery, it is completely true of the inner pain that you feel when your child is going through this. I do feel blessed that he will have no memory of going through any of this. When he is a "big kid", he will have his scar, but the pain will be in my memory not his. I wouldn't have it any other way.
Sunday, October 12, 2008
Thursday, October 9, 2008
Cath...
Cath was cancelled at 11:30. Dr. Fraser thought it unneccesary and feels comfortable taking him into surgery asap without the cath. We don't have a surgery date yet. You will know as soon as we do!!!
Wednesday, October 8, 2008
Cath tomorrow
After the IV was put in and he had calmed down. He loves the swing, but he still looks a little worried
before the IV was put in...notice how happy he is...Well...we are going to have the cath procedure tomorrow. There was a cancellation so Ethan is the second case of the day. He will be in the procedure between 10 and noon. He was placed on fortified milk this morning to "fatten him up" for surgery so he is allowed to eat that until 2 am, regular breastmilk until 4am, pedialyte until 6 am and then they will start IV fluids. His IV closed last night (of course) so they had to start another IV today. They tried both feet with no success so he has an IV in his head (his hands and arms did not present a good enough vein even to try to catch today). So we're starting Halloween early by dressing up like Frankenstein (notice my humor to keep that positive outlook going). They estimate that his cath will last 3-4 hours and that he will be in recovery for at least that long. So, long day tomorrow...
The cath will measure the pressures in his heart and give the surgeons a better idea of what types of surgery Ethan will be eligible for. We are still hopeful for a bi-ventricular repair, but we will have to wait and see. We have faith that whatever surgery we have it will be what is best for Ethan.
The cath will measure the pressures in his heart and give the surgeons a better idea of what types of surgery Ethan will be eligible for. We are still hopeful for a bi-ventricular repair, but we will have to wait and see. We have faith that whatever surgery we have it will be what is best for Ethan.
Tuesday, October 7, 2008
Nolan and Ethan updates
Nolan had his appointments with Ears, Nose, Throat (ENT) and audiology this morning. ENT recommends tubes in his ears and removal of his adnoids (spelling) so we will be doing that in two weeks on the 22nd. He is on antibiotics because his left ear is still infected. His audiology visit determined that he has hearing loss in his left ear most likely from the ear infection. They will do another hearing screen after his tubes have been in place for a few weeks...on Nov 10th.
In the meantime, this evening the got a urine sample from Ethan so they can check for infection pre-op. His IV is still flushing so I am happy...they don't have to stick him again as long as that is open. They will do a cath on him as I mentioned previously either Fri or early next week. We will have surgery most likely mid to late next week. I'm not ready for this. I don't think you can be ready for this. The urine sample caught me by surprise. I knew that they needed one but I didn't know it was coming down to this close.
I am tired of everything being up in the air. I hate this waiting game. I know that we are working around pre-op procedures and also surgery schedules, but I'm almost ready for this to just be over. I am relishing every minute I'm getting to spend with Ethan because I can't help but think that I won't get to snuggle with him like he likes for a while...He likes to be held chest to chest snuggled up on your shoulder. With a sternotomy, he will not like that for a while and might not again...it might irritate him too much. I just want a magic pill...
No one should have to go through this...especially a baby who has done nothing to cause such great amounts of heart disease...
In the meantime, this evening the got a urine sample from Ethan so they can check for infection pre-op. His IV is still flushing so I am happy...they don't have to stick him again as long as that is open. They will do a cath on him as I mentioned previously either Fri or early next week. We will have surgery most likely mid to late next week. I'm not ready for this. I don't think you can be ready for this. The urine sample caught me by surprise. I knew that they needed one but I didn't know it was coming down to this close.
I am tired of everything being up in the air. I hate this waiting game. I know that we are working around pre-op procedures and also surgery schedules, but I'm almost ready for this to just be over. I am relishing every minute I'm getting to spend with Ethan because I can't help but think that I won't get to snuggle with him like he likes for a while...He likes to be held chest to chest snuggled up on your shoulder. With a sternotomy, he will not like that for a while and might not again...it might irritate him too much. I just want a magic pill...
No one should have to go through this...especially a baby who has done nothing to cause such great amounts of heart disease...
The next step
The questions about surgery are as follows:
Where: Texas Children's
Who: Dr. Fraser
When: will be decided soon
What: most likely a Glenn procedure and a correction of the pulmonary veins
How: that's up to Heavenly Father and the surgeon!
All kidding aside, during rounds this morning they will be setting up a time to come in a do Ethan's blood work for surgery as well as scheduling his cath to determine his anatomy anomalies and his pressures within his heart. Surgery date to come soon!
Basically, his pulmonary veins form a sort of pouch then one common vein stems off and goes around his pulmonary artery that leads to his right lung, then it goes back down and into his heart. They are worried about restrictions within these vessels and it would be better if they just hooked up to the heart like normal, so that's what they are going to try to do. His anatomy is too complex to be able to do a full repair unless they see something different with the cath...so we will be looking at a Glenn. Basically, they take his superior vena cava and detach it from the heart and connect it to the pulmonary vein so that he gets straight blue blood to his lungs instead of a blue/red mix. I don't know if they have decided to disconnect his pulmonary vein from his heart or leave it as it has got a lot of blockages and stuff that could get nasty. I have a picture that Dr. Altman drew to explain his anatomy to me and as soon as I can get it scanned in I will.
More updates soon...we're coming down to it now...
Where: Texas Children's
Who: Dr. Fraser
When: will be decided soon
What: most likely a Glenn procedure and a correction of the pulmonary veins
How: that's up to Heavenly Father and the surgeon!
All kidding aside, during rounds this morning they will be setting up a time to come in a do Ethan's blood work for surgery as well as scheduling his cath to determine his anatomy anomalies and his pressures within his heart. Surgery date to come soon!
Basically, his pulmonary veins form a sort of pouch then one common vein stems off and goes around his pulmonary artery that leads to his right lung, then it goes back down and into his heart. They are worried about restrictions within these vessels and it would be better if they just hooked up to the heart like normal, so that's what they are going to try to do. His anatomy is too complex to be able to do a full repair unless they see something different with the cath...so we will be looking at a Glenn. Basically, they take his superior vena cava and detach it from the heart and connect it to the pulmonary vein so that he gets straight blue blood to his lungs instead of a blue/red mix. I don't know if they have decided to disconnect his pulmonary vein from his heart or leave it as it has got a lot of blockages and stuff that could get nasty. I have a picture that Dr. Altman drew to explain his anatomy to me and as soon as I can get it scanned in I will.
More updates soon...we're coming down to it now...
Friday, October 3, 2008
Preliminary Results
The cardiology team met with me briefly today and although all of the results of the MRI are not back yet...meaning that they haven't gone over them yet...the preliminary findings are that the pulmonary vein conflusion enters the heart in the center of the heart after being somewhat restricted by the bronchus. They were also able to see the positioning of the pulmonary artery better and it looks like the artery is overylying the VSD and partly coming out of the left ventricle. Which means that we don't have DORV, we have complete transposition. This may or may not make his heart easier to repair. We will have to wait for the surgical conference on Monday. Dr. Altman is the floor cardiologist this weekend of which I am grateful. I feel so comfortable with her...we've worked with her since February and I can read her doctor speak better than anyone else's. I don't know what is going to happen next week. I am trying to prepare myself for anything.
Thursday, October 2, 2008
We made it!
MRI is over and Ethan is back in his room with us resting comfortably. He was agitated when he came out of anesthesia but quickly went back to sleep...we are looking forward to a happier baby when he wakes up...although he will definitely be hungry! They got between 800 and 1000 pictures and are processing them now...initially it looks as if his pulmonary vein running between his bronchus (spelling...sorry) and another harder structure that I can't begin to remember the name of and in some positions the vein is being compressed and causing desaturations. We will know more tomorrow after the cardiology team looks at the images. We don't know if they will wan to do a surgery before he goes home or not...hopefully that question will be answered tomorrow...anyways...we are back in waiting game mode and are just grateful that Ethan's first experience of "being under" went well. Until tomorrow...
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