Well today was Ethan's cardiology appointment. His oxygen saturations were 66%. This is normal for him, but still concerning for the docs since that is his number at rest. When he is moving around it definitely decreases.
We started off the day with an echo. Ethan was a bit cranky and didn't get as much sleep as he needed the night before, but overall the appointment went well. The echo finished and it appears that his pulmonary artery that was worked on during the cath is still open thankfully! This is a big relief so far!
Next we had the meeting with Dr. Zahka. He discussed the fact that cardiology met after his last cath. They all decided that the previous plan for surgery (the shunt connecting his aorta/carotid to his left lower lung) isn't the best option after all. They are concerned about the fact that if any bleeding issues arise with his aorta they wouldn't be able to stop it. That would obviously be disastrous.
Instead of that surgery, the plan is to replace his current homograft. This is basically the same surgery he had at 5 months. They will remove his old homograft that is now too small for him and replace it with a larger homograft. I assume it will be the same pig material that he currently has, but I'm not positive. I also hope that they will fix the aneurysm that is in his heart since it is in the same location as the homograft currently.
This surgery obviously is more complicated than the first plan. This will be open heart surgery where they stop Ethan's heart and put him on a heart/lung bypass machine. This is also going to be cracking his chest again instead of going through his ribs. They'll have the added complications of all the previous scar tissue to deal with during this procedure as well.
The plan is to do this surgery in about 3 weeks. We have an appointment with pulmonology on Monday. We will page Dr. Zahka during this appointment and he will meet with us then. The timing of this surgery is all based on his lungs. If his lungs are too sick he won't be able to come off the vent easily and will make his recovery that much more difficult and dangerous. He is improving a lot so far, so hopefully a few more weeks with his new medications and breathing treatments will make his lungs much better.
They are also considering when to do another bronch. They don't know if we should do one soon before the surgery to see if his lungs are healthy enough, or if we should do one at the start of surgery with the expectation to cancel surgery if his lungs aren't healthy enough. We'll probably have a better idea of that plan after our appointment on Monday.
Please keep us all in your prayers. We pray especially that Ethan's lungs clear up and we can proceed with these procedures. I don't yet know the date of surgery so obviously i don't know how this will coincide with his birthday and/or how it will affect the start of school. He will need a lot of prayers for recovery since this open heart surgery will be much more difficult to recovery from than the "through the ribcage" surgery. There is a lot more pain involved with the healing of his sternum and everything in this. I will keep everyone posted with the official plans once I get them, but we of course appreciate all of your love and support so much!
And by the way...the big news from the other day was Ethan was able to throw out the first pitch at the Indian's game on July 4th! It was so exciting and he did such a great job! I am going to wait to post up a blog about it until I get the pictures from the Indians and a video of him throwing out the ball. :) Needless to say Ethan loved it and had a great time - we all did!
Friday, July 6, 2012
Tuesday, July 3, 2012
The hospital
Here's the recap of our hospital stay last week. Sorry it took so long to finally post up!
Monday morning we went down to the Clinic for Ethan's heart cath and lung bronchoscopy.
We did all the pre-op stuff and discussed the plans for the day with all the docs. Ethan then was able to get his Versed (medicine to help with anxiety). After that things were pretty goofy in the pre-op room and he kept Callie and I laughing until cath time!
The docs did the bronchoscopy first. They rinsed his lungs and found that he is full of mucus and his lungs are very inflammed. They took some samples of the mucus and stuff. These came back showing that he has H-Flu and some blood in his lungs. They don't know the cause of the blood, but they think it's probably due to his heart leaking back into one side (the blood is only in one lung). Either way they started him on antibiotics and a LOT of breathing treatments.
After the bronchoscopy they did the heart cath. They found that his homograft (the same one that keeps clotting off) was almost completely clotted again. Dr. Golden (our cath doc) was able to use a wire to break through the clot, then he ballooned open the area three times. He worked his way up from a small balloon to the biggest balloon he's used yet in Ethan. Hopefully this will keep it open for a while!
This was the shortest cath in Ethan's life! Dr. G met up with us around 2:30 (we started at 8am) saying his part was done. They were now working on getting him off the vent and ready to move to recovery. He had some issues with his blood pressure dropping during the cath, but they were able to resolve that with increased oxygen thankfully. He also slipped into SVT again right at the end of the cath, but thankfully again Dr. G was able to stop that by manipulating his tools around. This time Ethan didn't need any extra medication to keep his heart in rhythm! :)
We went upstairs once Ethan was all stable and had eaten a few popsicles. These path few caths have really been hurting his throat (much more than in the past). Needless to say we go through a lot of popsicles during our hospital stays now!
Ethan did well during the remainder of the day/night and had no complications thankfully! We had to start doing the breathing treatments because of all the mucus and inflammation in his lungs. We also started some new antibiotics.
Tuesday was pretty uneventful. Ethan watched some movies, did breathing treatments, played puzzles and games, did more breathing treatments, took medicine, and made repeated escapes to the playroom. This time was a bit different since he was so much more tired (most likely due to his lung issues). He couldn't even walk down the M40 hallway to the upstairs playroom. We did one attempt, but ended up having to return to the room to get a wagon. Any amount of exercise just wore him out and made him really start breathing hard.
During one of our trips to the playroom the surgeon came to chat. After that was Dr. Zahka's turn to meet down there. They both told us that the surgery was going to have to be postponed because his lungs just couldn't handle the heart surgery right now. They didn't feel comfortable sedating him and putting him on the ventilator without feeling very confident that his lungs would allow him to come off the vent. Thankfully he's doing so much better now! Honestly I was relieved to hear that news, even though I knew we were just postponing the inevitable. I still hated the thought of him undergoing the surgery. The docs also brought up the fact that they're going to be discussing all the surgical options again. They want to make sure that there's nothing better they could come up with or revisit instead of doing this shunt surgery. They said it is still their number one plan (attaching the shunt from his aorta/carotid to his left lower lung), but they want to go over all the other options since there's a little more time. They said to wait about a month, but they don't want to wait too long since it only took a little over a month after the last cath before his artery clotted off again. They certainly don't want his artery clotted off before surgery actually happens again. This will have made the cath pretty much pointless.
Tuesday night we went down for a chest xray. Ethan did so great for it! He stood calmly all by himself and earned a prize from the basket. He was very excited and picked a blow up ball. Our poor roommates had to deal with Ethan throwing that ball all around the hospital room for the rest of our stay! Well, maybe that'll help remind the hospital to work on getting PRIVATE ROOMS for the patients! Lol! :)
Wednesday morning we met with pulmonology again. He just went over all the plans and new meds for the month. Then we headed over for a sweat test to check for cystic fibrosis. They were concerned about this due to Ethan's chronic bronchitis, his lung inflammation, and the severe amount of mucus in his lungs. Thankfully the tests came back negative for CF! What an immense relief! After the sweat test we went for a CT scan. Ethan panics for these scans for some reason, so anesthesiology had to come and dope him up with some happy medicine. They started off giving him two doses of Versed, but surprisingly he still panicked. They ended up having to give him Propofol and let him just sleep through the scan. By the time that test was done he was finally able to eat! Yay! The poor boy had been starving and wasn't allowed to eat because of the sedation all day! We celebrated with a McDonalds lunch from downstairs. :)
A few hours after that we had all the paperwork together and were able to go home! He's still doing the Lovenox injections (even now) because his INR is too low. Last Wednesday he was 1.4 and his goal range is 3.0 to 3.5. :( Today he goes into the lab to get bloodwork done. Hopefully it'll show a higher level so we can stop these belly shots. It's so hard for him.
We have an appointment scheduled with cardiology this Friday (July 6). We're doing an echo as well as meeting with them to set up the surgery time and make sure he's healthy enough to handle it now. We also have a pulmonology appointment scheduled for Monday, July 9th. The pulmonologist doesn't seem to have as much say in what happens, but he also wants to give his input on the health of Ethan's lungs. He also wants to make sure that they're improving with all the new meds and treatments.
We also have some very exciting news for tomorrow, but I can't share until after the fact. I'll put up another post either tomorrow night or Thursday showing Ethan's latest adventure :)
Please continue to keep us in your prayers! This appointment on Friday will tell us exactly what to expect surgery-wise and when to expect it. Hopefully we get some really good news. I think he's doing much better - his cough is improving and he has a lot more energy. I pray that his vein from the cath is still open and we don't have to worry about trying to figure out about opening that up again. We appreciate all your love, prayers, and support so much! I will post up again soon! Enjoy your July 4th!
Monday morning we went down to the Clinic for Ethan's heart cath and lung bronchoscopy.
We did all the pre-op stuff and discussed the plans for the day with all the docs. Ethan then was able to get his Versed (medicine to help with anxiety). After that things were pretty goofy in the pre-op room and he kept Callie and I laughing until cath time!
The docs did the bronchoscopy first. They rinsed his lungs and found that he is full of mucus and his lungs are very inflammed. They took some samples of the mucus and stuff. These came back showing that he has H-Flu and some blood in his lungs. They don't know the cause of the blood, but they think it's probably due to his heart leaking back into one side (the blood is only in one lung). Either way they started him on antibiotics and a LOT of breathing treatments.
After the bronchoscopy they did the heart cath. They found that his homograft (the same one that keeps clotting off) was almost completely clotted again. Dr. Golden (our cath doc) was able to use a wire to break through the clot, then he ballooned open the area three times. He worked his way up from a small balloon to the biggest balloon he's used yet in Ethan. Hopefully this will keep it open for a while!
This was the shortest cath in Ethan's life! Dr. G met up with us around 2:30 (we started at 8am) saying his part was done. They were now working on getting him off the vent and ready to move to recovery. He had some issues with his blood pressure dropping during the cath, but they were able to resolve that with increased oxygen thankfully. He also slipped into SVT again right at the end of the cath, but thankfully again Dr. G was able to stop that by manipulating his tools around. This time Ethan didn't need any extra medication to keep his heart in rhythm! :)
We went upstairs once Ethan was all stable and had eaten a few popsicles. These path few caths have really been hurting his throat (much more than in the past). Needless to say we go through a lot of popsicles during our hospital stays now!
Ethan did well during the remainder of the day/night and had no complications thankfully! We had to start doing the breathing treatments because of all the mucus and inflammation in his lungs. We also started some new antibiotics.
Tuesday was pretty uneventful. Ethan watched some movies, did breathing treatments, played puzzles and games, did more breathing treatments, took medicine, and made repeated escapes to the playroom. This time was a bit different since he was so much more tired (most likely due to his lung issues). He couldn't even walk down the M40 hallway to the upstairs playroom. We did one attempt, but ended up having to return to the room to get a wagon. Any amount of exercise just wore him out and made him really start breathing hard.
During one of our trips to the playroom the surgeon came to chat. After that was Dr. Zahka's turn to meet down there. They both told us that the surgery was going to have to be postponed because his lungs just couldn't handle the heart surgery right now. They didn't feel comfortable sedating him and putting him on the ventilator without feeling very confident that his lungs would allow him to come off the vent. Thankfully he's doing so much better now! Honestly I was relieved to hear that news, even though I knew we were just postponing the inevitable. I still hated the thought of him undergoing the surgery. The docs also brought up the fact that they're going to be discussing all the surgical options again. They want to make sure that there's nothing better they could come up with or revisit instead of doing this shunt surgery. They said it is still their number one plan (attaching the shunt from his aorta/carotid to his left lower lung), but they want to go over all the other options since there's a little more time. They said to wait about a month, but they don't want to wait too long since it only took a little over a month after the last cath before his artery clotted off again. They certainly don't want his artery clotted off before surgery actually happens again. This will have made the cath pretty much pointless.
Tuesday night we went down for a chest xray. Ethan did so great for it! He stood calmly all by himself and earned a prize from the basket. He was very excited and picked a blow up ball. Our poor roommates had to deal with Ethan throwing that ball all around the hospital room for the rest of our stay! Well, maybe that'll help remind the hospital to work on getting PRIVATE ROOMS for the patients! Lol! :)
Blowing bubbles in bed
Wednesday morning we met with pulmonology again. He just went over all the plans and new meds for the month. Then we headed over for a sweat test to check for cystic fibrosis. They were concerned about this due to Ethan's chronic bronchitis, his lung inflammation, and the severe amount of mucus in his lungs. Thankfully the tests came back negative for CF! What an immense relief! After the sweat test we went for a CT scan. Ethan panics for these scans for some reason, so anesthesiology had to come and dope him up with some happy medicine. They started off giving him two doses of Versed, but surprisingly he still panicked. They ended up having to give him Propofol and let him just sleep through the scan. By the time that test was done he was finally able to eat! Yay! The poor boy had been starving and wasn't allowed to eat because of the sedation all day! We celebrated with a McDonalds lunch from downstairs. :)
A few hours after that we had all the paperwork together and were able to go home! He's still doing the Lovenox injections (even now) because his INR is too low. Last Wednesday he was 1.4 and his goal range is 3.0 to 3.5. :( Today he goes into the lab to get bloodwork done. Hopefully it'll show a higher level so we can stop these belly shots. It's so hard for him.
We have an appointment scheduled with cardiology this Friday (July 6). We're doing an echo as well as meeting with them to set up the surgery time and make sure he's healthy enough to handle it now. We also have a pulmonology appointment scheduled for Monday, July 9th. The pulmonologist doesn't seem to have as much say in what happens, but he also wants to give his input on the health of Ethan's lungs. He also wants to make sure that they're improving with all the new meds and treatments.
We also have some very exciting news for tomorrow, but I can't share until after the fact. I'll put up another post either tomorrow night or Thursday showing Ethan's latest adventure :)
Please continue to keep us in your prayers! This appointment on Friday will tell us exactly what to expect surgery-wise and when to expect it. Hopefully we get some really good news. I think he's doing much better - his cough is improving and he has a lot more energy. I pray that his vein from the cath is still open and we don't have to worry about trying to figure out about opening that up again. We appreciate all your love, prayers, and support so much! I will post up again soon! Enjoy your July 4th!
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