Gabe has his cardiac cath yesterday. The procedure was supposed to last an hour, but it ended up lasting three hours. They had a hard time getting the wire around his shunt. We have decided that when they give us a time frame, we just need to multiply it by three. That seems to be the formula so far. We were at the hospital for eleven hours and we were all so tired when we got home. Gabe has been a little cranky today, which is to be expected. The worst part of the whole thing is that he has to lay flat and he can't move his leg for six hours after the procedure. If anyone has any ideas for how to keep a toddler still that long, I am all ears.
The doctor said that the pulmonary artery has grown, but he doesn't expect it to get any bigger with this shunt. That leaves us with a couple options; the first is that they put in a bigger shunt and way for the artery to grow or they go ahead and do the repairs. He thinks that the repairs will allow more blood flow to the right PA, which will encourage growth, although, they will never be equal. He thinks the larger shunt won't make much difference and it will, obviously, add another surgery. The team conferences on Monday morning, so they will discuss it and call us. I am really hoping for just one more surgery for now, but I also want to do what is best for Gabe. It is looking like January for the procedure. I thought I was ready, but after seeing him yesterday, I don't know. He was more upset than I have EVER seen him during recovery. It was really hard to watch. It was even harder to hand him off to a the nurses this time. I just keep thinking about how much better he will be when this is all over. The doc said that we can expect NO blueness and we shouldn't see him getting so out of breath anymore. I completely trust the doctors and I feel that he is in great hands.
All in all, there is so much to be thankful for this year. Gabe still has a tough road, but he is going to be ok. We are so blessed that he is our son. We are also so blessed to have so many family and friends supporting us and loving our family. Thanks to all! Enjoy the holiday!!!!
Ludlums
Wednesday, November 25, 2009
Friday, November 13, 2009
Next step
Things are going pretty well here. Gabe has now added dog (or duck, we aren't sure) and ball to his repetoire. Speech therapy starts next week, so I am sure we will be hearing much more very soon. We are so excited for his first holiday season. Not to mention, he turns two the week before Christmas.
As far as his health goes, he continues to gain weight and grow. The last time we were at the doctor, he made it to the charts. Before, he was too small and the last visit he was at 10th percentile for height and 25th percentile for weight. He is still getting really winded, which concerns the doctors. He is scheduled for another angiogram on November 24. They will know more about how things are going at that point. Then we will work on a plan for his big surgery. They still want to hold off until after flu season, so assuming things are going ok, he will have it in the spring.
Not much else to report at this time. I promise, I will put up some new pictures this weekend. I will also post as soon as we get the information from the angiogram.
Thanks for the thoughts!
As far as his health goes, he continues to gain weight and grow. The last time we were at the doctor, he made it to the charts. Before, he was too small and the last visit he was at 10th percentile for height and 25th percentile for weight. He is still getting really winded, which concerns the doctors. He is scheduled for another angiogram on November 24. They will know more about how things are going at that point. Then we will work on a plan for his big surgery. They still want to hold off until after flu season, so assuming things are going ok, he will have it in the spring.
Not much else to report at this time. I promise, I will put up some new pictures this weekend. I will also post as soon as we get the information from the angiogram.
Thanks for the thoughts!
Sunday, November 1, 2009
Still progessing
I have been terrible about posting! It is nice that some people have asked for more, so here goes. Yesterday was our first Halloween and Gabe was the cutest penguin ever. We went to a few houses of friends, but I don't really think Gabe "got" the trick or treating. He enjoyed seeing friends, but was very glad to get out of the costume at the end of the night.
We went to see the cardiologist on Friday because Gabe is still having problems with getting winded. The doctor says that there is no reason for him to be so winded and the echo cardiogram they did on Friday looks good. His right pulmonary artery has benefited from the shunt put in during the August surgery. It started at 2.7 mm and the last time, it was at 4.1 mm. Friday is measured 4.9 mm. The cardiologist still wants to put the big surgery off longer, so Gabe will get bigger and stronger. Not only that, he would like to wait until the flu season is over. He and the surgeon do want to have another angiogram done within the month. That way, they will know exactly what is going on and we can come up with our plan. Gabe is thriving and it doesn't seem like this next surgery is as pressing as it was before the shunt was put in. I am guessing we will be doing this in the spring. Gabe now weighs 24.2 pounds, which is almost 7 pounds that we have put on him in 4 months.
It is amazing to see how great he is doing. Not only is he growing like a weed, he is learning so much. He says more words everyday. Brian and I are always singing to him and yesterday in the car, he just starting with "row row row" just like the beginning of Row Row Row Your Boat. The first three words were as far as he got, mostly because he couldn't stop clapping and cheering for himself. He has also gotten very lovey. He likes to give hugs and kisses to everyone. He will occasionally grab your face with two hands and give you the biggest kiss. That is the best!
We are so excited for the holidays this year. It is going to be so exciting to experience them through his eyes. We also have his birthday coming up the week before Christmas. It sounds like the cardiac cath will be around Thanksgiving and I will keep everyone posted. I will also make sure that I get some more pictures posted. Additionally, I will try to not be such a stranger. Thanks for all of the continued thoughts and prayers.
Ludlums
We went to see the cardiologist on Friday because Gabe is still having problems with getting winded. The doctor says that there is no reason for him to be so winded and the echo cardiogram they did on Friday looks good. His right pulmonary artery has benefited from the shunt put in during the August surgery. It started at 2.7 mm and the last time, it was at 4.1 mm. Friday is measured 4.9 mm. The cardiologist still wants to put the big surgery off longer, so Gabe will get bigger and stronger. Not only that, he would like to wait until the flu season is over. He and the surgeon do want to have another angiogram done within the month. That way, they will know exactly what is going on and we can come up with our plan. Gabe is thriving and it doesn't seem like this next surgery is as pressing as it was before the shunt was put in. I am guessing we will be doing this in the spring. Gabe now weighs 24.2 pounds, which is almost 7 pounds that we have put on him in 4 months.
It is amazing to see how great he is doing. Not only is he growing like a weed, he is learning so much. He says more words everyday. Brian and I are always singing to him and yesterday in the car, he just starting with "row row row" just like the beginning of Row Row Row Your Boat. The first three words were as far as he got, mostly because he couldn't stop clapping and cheering for himself. He has also gotten very lovey. He likes to give hugs and kisses to everyone. He will occasionally grab your face with two hands and give you the biggest kiss. That is the best!
We are so excited for the holidays this year. It is going to be so exciting to experience them through his eyes. We also have his birthday coming up the week before Christmas. It sounds like the cardiac cath will be around Thanksgiving and I will keep everyone posted. I will also make sure that I get some more pictures posted. Additionally, I will try to not be such a stranger. Thanks for all of the continued thoughts and prayers.
Ludlums
Monday, September 7, 2009
Updates
It has been awhile since our last post. We are just getting used to being a family. We just celebrated our 2 months since we got Gabe. It is amazing to think that in such a short time, we have accomplished so much. It really seems like he has been here for so much longer than that.
We went to the surgeon and the cardiologist last week. We don't need to see the surgeon again until we plan the surgery. Both doctors want to wait a little longer until the next surgery. It looks a little more like February or so for the next one. The doctors want to give his artery more time to grow and more time for him to get stronger. His surgeon also wants us to continue to keep him a little isolated during the flu season. I was hoping that he would be able to have his surgery and recover during the flu season. That way, by spring, he would be able to do "normal" kid things. However, it might be more like summer until that happens. It is difficult for someone, like myself, who likes to go a lot. However, I do know that we are lucky that we will probably only have to be this cautious for a few months. It will just be nice for him to be able to play with other kids and experience new things outside of the house.
As far as his recovery, he is doing amazing! It is so incredible to see how quickly he has bounced back. He is doing so many new and funny things. He is saying a couple more words and he is signing for more things also. He is an absolute joy and I almost can't remember what things were like before Gabe.
I have gone back to work, which was a little difficult. Luckily, Brian and I are on opposite schedules, so we don't need much help with Gabe. He will be with my parents for a few days a month. Their first day with him is tomorrow. They are pretty excited about having him. I am so blessed that they are willing to help us out.
We will keep posting periodically as we approach the next surgery. Again, we appreciate all of the love and support for Gabe. Take care!!
We went to the surgeon and the cardiologist last week. We don't need to see the surgeon again until we plan the surgery. Both doctors want to wait a little longer until the next surgery. It looks a little more like February or so for the next one. The doctors want to give his artery more time to grow and more time for him to get stronger. His surgeon also wants us to continue to keep him a little isolated during the flu season. I was hoping that he would be able to have his surgery and recover during the flu season. That way, by spring, he would be able to do "normal" kid things. However, it might be more like summer until that happens. It is difficult for someone, like myself, who likes to go a lot. However, I do know that we are lucky that we will probably only have to be this cautious for a few months. It will just be nice for him to be able to play with other kids and experience new things outside of the house.
As far as his recovery, he is doing amazing! It is so incredible to see how quickly he has bounced back. He is doing so many new and funny things. He is saying a couple more words and he is signing for more things also. He is an absolute joy and I almost can't remember what things were like before Gabe.
I have gone back to work, which was a little difficult. Luckily, Brian and I are on opposite schedules, so we don't need much help with Gabe. He will be with my parents for a few days a month. Their first day with him is tomorrow. They are pretty excited about having him. I am so blessed that they are willing to help us out.
We will keep posting periodically as we approach the next surgery. Again, we appreciate all of the love and support for Gabe. Take care!!
Wednesday, August 26, 2009
Getting Better
Things here are steadily progressing. We had a little scare last Friday when Gabe's oxygen saturation was low and he just wasn't acting like himself. I called his cardiologist's office and they had him come right in. They did a quick echo cardiogram and put him back on a particular medication. That has made a difference and things have been better since then. We go back to the surgeon and the cardiologist on Monday and hopefully we will learn more about the next surgery. I am afraid that they will have to perform another cardiac cath to find out if the shunt is working. That means one more time of being "put under" before the big surgery. I know that it is necessary and I trust his doctors, but it all makes me a little uneasy. I am just hoping that by spring, we have all of these procedures and recoveries behind us and we can be a "normal" little toddler for awhile.
You would never guess by looking at him that he had an open heart surgery only 3 weeks ago. He is back to walking and being super active. He is so amazing! We are still pretty locked down in the house. He has only been a couple places and only a handful of people have seen him since he has been home. Walks are good for us and we take 1 or 2 a day. We are both getting pretty bored of the house! If things keep progressing as they are, I hope to get back to work in a week or so. I am starting to miss it. Plus, I know that I will need even more time off when we have the next surgery. I haven't told my mom about the new earlier start time for District 150. That means that she will have to be at my house to babysit at like 6:00 or 6:15 a.m. Yikes! I am so lucky that she is going to be our babysitter and she is really looking forward to it.
Not much else is going on here. Gabe is just learning all kinds of new tricks. He still isn't saying anything but mama and dada. Hopefully, that will start to pick up pretty soon.
We will post again after our appointments, as we should have more to report at that time. Until then......
Brian, Angela and Gabe
You would never guess by looking at him that he had an open heart surgery only 3 weeks ago. He is back to walking and being super active. He is so amazing! We are still pretty locked down in the house. He has only been a couple places and only a handful of people have seen him since he has been home. Walks are good for us and we take 1 or 2 a day. We are both getting pretty bored of the house! If things keep progressing as they are, I hope to get back to work in a week or so. I am starting to miss it. Plus, I know that I will need even more time off when we have the next surgery. I haven't told my mom about the new earlier start time for District 150. That means that she will have to be at my house to babysit at like 6:00 or 6:15 a.m. Yikes! I am so lucky that she is going to be our babysitter and she is really looking forward to it.
Not much else is going on here. Gabe is just learning all kinds of new tricks. He still isn't saying anything but mama and dada. Hopefully, that will start to pick up pretty soon.
We will post again after our appointments, as we should have more to report at that time. Until then......
Brian, Angela and Gabe
Monday, August 17, 2009
First Check Up
Things are so much better now that we are home. Gabe is sleeping much better at this point, almost back to his normal schedule. The eating is a little slower, but we saw quite a bit of progress today. It is tough to see a kid who was such a GREAT eater be so picky, but we will get back to where we were.
We spent the morning at the hospital today getting yet another chest xray, labs, and seeing the surgeon. Everything looks good and we go back in 2 weeks. We will also see the cardiologist on the same day. It looks like if things continue to progress as they are, we will be having the next surgery in 2-3 months. This one should be about the same length of around 9 hours, and we will likely be in the hospital about the same amount of time. I think going into it and knowing what to expect this next time will make it a little easier.
The PICU (the unit where he stayed after his surgery) drew his blood today and it was nice to see familiar faces. Everyone was happy to see Gabe passing through and they all commented on how healthy he looked. They made the process much easier for Gabe and me. The PICU has been amazing through this whole thing. I am so grateful for the wonderful care and compassion they have shown us.
Everything else is going great. We will continue to post as Gabe progresses and as we approach the next surgery.
Brian, Ang, and Gabe
We spent the morning at the hospital today getting yet another chest xray, labs, and seeing the surgeon. Everything looks good and we go back in 2 weeks. We will also see the cardiologist on the same day. It looks like if things continue to progress as they are, we will be having the next surgery in 2-3 months. This one should be about the same length of around 9 hours, and we will likely be in the hospital about the same amount of time. I think going into it and knowing what to expect this next time will make it a little easier.
The PICU (the unit where he stayed after his surgery) drew his blood today and it was nice to see familiar faces. Everyone was happy to see Gabe passing through and they all commented on how healthy he looked. They made the process much easier for Gabe and me. The PICU has been amazing through this whole thing. I am so grateful for the wonderful care and compassion they have shown us.
Everything else is going great. We will continue to post as Gabe progresses and as we approach the next surgery.
Brian, Ang, and Gabe
Friday, August 14, 2009
Yipee!!!!!!!!!!
We are taking Gabe home! We have to wait a few minutes to make sure that the place where his lead was isn't going to bleed. We have only 6 more minutes to wait. I will post more very soon. Yeah!!!!!
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