I heard back from the cardiologist's office yesterday afternoon regarding Levi's x-ray results. The chest x-ray showed that he has "mild pulmonary vascular congestion", which means that the blood vessels in the lungs are mildly enlarged. The nurse said this is to be expected after open heart surgery and at this point in Levi's recovery. She said he's still moving in the right direction and not to worry unless I notice any major changes in his demeanor (breathing rapidly, not eating, unusually fussy).
At his next appointment he'll have a limited echo, and then at the appointment following that he'll have a complete echo and another x-ray.
Yesterday and today all of the glue and scabs on his incision fell off! I think it looks pretty good considering he's just two weeks out.
So all is well. We hope and pray the rest of his recovery will go just as smoothly as it has thus far.
Saturday, July 9, 2011
Friday, July 8, 2011
Cardiologist Appointment - Two Weeks Post-Op
It's been two weeks since Levi had his open heart surgery. He's doing great and yesterday had his first follow-up cardiology appointment since returning home. It looks like his incision is healing well. He also had a chest x-ray taken and I'm waiting to hear detailed results this afternoon. Preliminary results show that his chest isn't totally clear of fluids, which I was hoping it would be. Though from what I understand, his results aren't abnormal for this point in time post-surgery. I'll know more later today, but I don't think it's anything to worry about.
No echo at the appointment, just an EKG and check of his vitals. The doctor is very pleased with his progress so far. She said his heart sounds much different than before, in a good way. I certainly hope so!
Levi will go in for another cardiology check-up and limited echo on July 19. Then again for his six week post-op appointment in early August which will include a complete echo. If everything looks good at that appointment, he won't be seen for another six months! Wouldn't that be nice!
Levi has been practicing his walking a lot more the past few days. I think it may become his preferred mode of transportation very soon!
We're loving being home as a family and are definitely loving this summertime weather. We're expecting James' mom and cousin to come into town today for a visit. Should be fun!
No echo at the appointment, just an EKG and check of his vitals. The doctor is very pleased with his progress so far. She said his heart sounds much different than before, in a good way. I certainly hope so!
Levi will go in for another cardiology check-up and limited echo on July 19. Then again for his six week post-op appointment in early August which will include a complete echo. If everything looks good at that appointment, he won't be seen for another six months! Wouldn't that be nice!
Levi has been practicing his walking a lot more the past few days. I think it may become his preferred mode of transportation very soon!
We're loving being home as a family and are definitely loving this summertime weather. We're expecting James' mom and cousin to come into town today for a visit. Should be fun!
Wednesday, July 6, 2011
Fourth of July
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| enjoying Grandma Valerie time |
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| A week and a half post surgery. He gets the one chest tube stitch out tomorrow. The outer skin layer of the chest incision was glued together. The glue and scab will flake off over the next couple weeks. |
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| Happy 4th of July |
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| 4th of July boys |
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| What a difference a year makes! |
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| making friends with a bearded-dragon |
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| festivities at Drake Park |
Saturday, July 2, 2011
Post-Op Day 5 (Discharged!) & HOME
This is our third day back home and I think we're finally starting to feel semi-normal again. I can hardly believe that it's only been a week since Levi's surgery. And what a crazy, tiring, emotional, and miraculous week it was.
Dr. Frank Hanley is a phenomenal surgeon. We would go back to him in a heartbeat. He has given Levi what we hope is many more years before needing another heart surgery. The surgery went so much better than we ever expected. Levi's recovery at Lucile Packard Children's Hospital was nearly flawless. What an amazing hospital. Everyone we met was kind and helpful, the nurses were excellent, and the facility and it's surroundings were beautiful. I'm so glad we ended up down there. I can't imagine having gone elsewhere.
I'm going to rewind a few days and go back to how our hospital stay ended. The morning of post-op day 5, we received Levi's chest x-ray and echo results. The x-ray showed his lungs were clear and the echo results remained unchanged from the one done right after surgery. He now has trace to mild leakage and mild stenosis. Levi's heart rate, which had been running high the day before, was now lower and closer to where it should be. So Levi was good to go and the doctors wanted him discharged by 10 am! It's hard to believe open heart surgery was on a Friday and we were out by Wednesday morning. Totally amazing.
Once we received the final discharge orders, we tried to find a direct flight home. But with the holiday weekend, there weren't any flights available for several more days. So we rented a car and made the 9.5 hour drive instead. We packed up, checked out of the Ronald McDonald House, and hit the road by early afternoon. We made one stop for dinner at In-N-Out (yum!!!!) and arrived home at about 11 pm. It was a long drive, but we were so glad to be home. Totally, totally exhausted, but so happy to sleep in our own beds. Levi didn't sleep well in the hospital but once he was in his own crib, he slept like a champ, right through the night. He's almost totally back to his normal sleeping schedule, which is awesome.
Noah and Jacob were excited to see us the next morning. Boy how we had missed them too! I was still super tired and felt like I was walking around in a fog that day and the next. We've been going to bed early to try to get caught up on sleep. Today I feel much more normal.
Levi's doing great. He's crawling and cruising all over, taking some more steps, and generally back to his normal routine. I've noticed he tires a little more easily and is a little more cautious in his movements, which I'm glad about. I don't want him to be in pain from over-exerting himself. It will take about six weeks for his sternum to heal. We're also supposed to keep Levi away from crowds for about two weeks to avoid illnesses. As far as medications, he's on Tylenol as needed for pain. That's it for pain meds, which is amazing to me. He's also taking Lasix twice daily for a few weeks to help with fluid retention following surgery.
Levi has a follow up appointment with his cardiologist here in town on Thursday and then another one at the six week mark for a complete echo. Other than that, we're just trying to take it easy, catch up on rest, and get back into the swing of things. My mom is in town till tomorrow morning and it's been wonderful having her here. Jacob and Noah had SO much fun with her while we were away and it's been so helpful for us to still have her with us as we adjust to home life again. I'm keeping a closer eye on Levi and he wants to be held a little more than before, so it's not as easy to get things done around here. I'm thankful for the holiday weekend too, which means James is here till Tuesday.
I can't tell you just how relieved I am to have this behind us. We've spent the past year adjusting to Levi's heart defect, researching it, going to numerous appointments, finding a surgeon, and then just waiting and waiting to find out when surgery would be necessary. Now we're all breathing a little easier and it feels like such a huge weight has been lifted off of us. Levi will still see his cardiologist on a regular basis, but the time between visits should lengthen, and hopefully another surgery is way, way off in the distance. I'm looking forward to a break.
Again we want to thank all of our friends and family, and even those we didn't know, for praying for us, supporting us, and helping us in both Bend and Palo Alto. That was huge. We couldn't have done it alone. Thank you for lightening our load.
We give God the praise and glory for Levi's successful surgery. So many things worked together just perfectly. Even in the weeks proceeding the surgery, little things that I was frustrated by had a greater purpose that I couldn't see at the time. God's plan is so much bigger and better than any of us can see at any one point in time. That gives us hope in the midst of all of the difficulties we've experienced. For now, being on this side of Levi's heart surgery, we are finally able to sit back and soak in the goodness of it all. It's time to relax and breathe.
.............
A few extra pictures...
It was a very long drive home, but the views that evening were amazing. This was the start of being able to relax:
............
Yesterday, while I stayed home with Levi, James and my mom took the older boys to Petersen Rock Garden just outside of Bend. The boys loved looking at the rock creations, peacocks, and other animals roaming the property. A fun outing for a warm summer day.
Dr. Frank Hanley is a phenomenal surgeon. We would go back to him in a heartbeat. He has given Levi what we hope is many more years before needing another heart surgery. The surgery went so much better than we ever expected. Levi's recovery at Lucile Packard Children's Hospital was nearly flawless. What an amazing hospital. Everyone we met was kind and helpful, the nurses were excellent, and the facility and it's surroundings were beautiful. I'm so glad we ended up down there. I can't imagine having gone elsewhere. |
| Aunt Jani helping us prepare for discharge |
I'm going to rewind a few days and go back to how our hospital stay ended. The morning of post-op day 5, we received Levi's chest x-ray and echo results. The x-ray showed his lungs were clear and the echo results remained unchanged from the one done right after surgery. He now has trace to mild leakage and mild stenosis. Levi's heart rate, which had been running high the day before, was now lower and closer to where it should be. So Levi was good to go and the doctors wanted him discharged by 10 am! It's hard to believe open heart surgery was on a Friday and we were out by Wednesday morning. Totally amazing.
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| Leaving LPCH with our sweet baby boy |
Once we received the final discharge orders, we tried to find a direct flight home. But with the holiday weekend, there weren't any flights available for several more days. So we rented a car and made the 9.5 hour drive instead. We packed up, checked out of the Ronald McDonald House, and hit the road by early afternoon. We made one stop for dinner at In-N-Out (yum!!!!) and arrived home at about 11 pm. It was a long drive, but we were so glad to be home. Totally, totally exhausted, but so happy to sleep in our own beds. Levi didn't sleep well in the hospital but once he was in his own crib, he slept like a champ, right through the night. He's almost totally back to his normal sleeping schedule, which is awesome.
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| At Ronald McDonald House just before we left. |
Noah and Jacob were excited to see us the next morning. Boy how we had missed them too! I was still super tired and felt like I was walking around in a fog that day and the next. We've been going to bed early to try to get caught up on sleep. Today I feel much more normal.
Levi's doing great. He's crawling and cruising all over, taking some more steps, and generally back to his normal routine. I've noticed he tires a little more easily and is a little more cautious in his movements, which I'm glad about. I don't want him to be in pain from over-exerting himself. It will take about six weeks for his sternum to heal. We're also supposed to keep Levi away from crowds for about two weeks to avoid illnesses. As far as medications, he's on Tylenol as needed for pain. That's it for pain meds, which is amazing to me. He's also taking Lasix twice daily for a few weeks to help with fluid retention following surgery. |
| so glad to be back together |
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| hardly even pausing after open heart surgery |
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| always on the go |
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| you'd never know what happened a week ago unless you lifted up his shirt |
We give God the praise and glory for Levi's successful surgery. So many things worked together just perfectly. Even in the weeks proceeding the surgery, little things that I was frustrated by had a greater purpose that I couldn't see at the time. God's plan is so much bigger and better than any of us can see at any one point in time. That gives us hope in the midst of all of the difficulties we've experienced. For now, being on this side of Levi's heart surgery, we are finally able to sit back and soak in the goodness of it all. It's time to relax and breathe.
.............
A few extra pictures...
It was a very long drive home, but the views that evening were amazing. This was the start of being able to relax:
............
Yesterday, while I stayed home with Levi, James and my mom took the older boys to Petersen Rock Garden just outside of Bend. The boys loved looking at the rock creations, peacocks, and other animals roaming the property. A fun outing for a warm summer day.
And a video from today. My mom taught Jacob this little song...
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