We drove back up to Philadelphia Thursday
and spent the night at the Philadelphia Ronald McDonald house. What a wonderful program they run! We had called the day of arrival, as instructed, to see if they had any open rooms, and we were incredibly fortunate to get the last room available. It’s a simple room in the “Carriage House” section, with the bathroom located across the hall. Upon check-in, Sean was able to choose a book, a stuffed animal, and a toy from a huge bin of donated items; after he found a “talking” Thomas-The-Tank-Engine book, he never made it to the toys and stuffed animals… ‘peep-peep’ was all he wanted to hear. (Again, and again, and again, and over again...) We were then given a mini tour of the house. We saw where the kitchen is, with its fully stocked pantry, and where a donated dinner is provided each evening. There are also play rooms, a playground, lounges, and laundry areas. And there is a model train set up in the dining room area that Sean fell in love with....
he was so sad when we finally made him say goodnight to the train so we could all go to bed.
The house is mainly run by volunteers, and only charges $15/night for each family. You are welcome to stay as long as you need, until the day your child is discharged from the hospital. This particular Ronald McDonald House was the first ever, and is housed in a former mansion that has had several additions over the years. The mansion area is gorgeous, and if I ever get a chance, I’d love to take a more detailed tour (Michael did). But I digress... we headed to our room and pretty much went straight to bed. We needed to get up at four-thirty and we knew we would need our sleep for the next day. I’m sure I did sleep for an hour here and there, but it felt as though I simply watched the clock all night long. Sean was snuggled in between Michael and I (a very rare treat for him), and he slept very peacefully.
Since Sean couldn’t have anything to eat or drink after 11:00 pm, we let him sleep until it was time to go, leaving a few extra minutes to visit the train downstairs before leaving.
When we got to the hospital (a few blocks away), we signed in and were taken back to a room where Sean changed into a hospital gown and was given a sedative to help relax him and eventually make him sleep. It worked like a charm. Around 7:30, we met with the anesthesiologist and then followed her and Sean (asleep in his rolling bed) down the hallway to the outside of the operating rooms. We gave him a kiss, and off they went. I can honestly say at that point, I have never been more nervous in my life. I knew he was in good hands, but still, handing your child over to strangers for heart surgery is terrifying. As Sean went off to be prepped for surgery, we were taken up to Dr. Spray (the surgeon)’s office to meet with him. We had been told he is a “tall man of very few words”, and that pretty much sums it up. No idle chit-chat, there's work to be done; a heart that needs fixing. He explained the surgery and the risks (so many! becoming a paraplegic?!), asked if we had any questions (we didn’t), then off he went to get scrubbed up. We were then taken on a tour of the cardiac floor where Sean would come after surgery, and finally, we were shown to the family lounge just outside the area where Sean would be recovering (also sponsored by Ronald McDonald). The nurse promised hourly updates. By 9:30, we were told that the repair was done and they were closing him up, and by 10:00 we were told and we could go to the consult room to meet with Dr. Spray again. He told us that the surgery went very well, and after a brief visit back in the lounge, we were told we could go to Sean’s CICU (cardiac intensive care unit) room to see him. All cardiac patients go directly to the CICU following surgery. Sean was sleeping peacefully when we came in.
He was hooked up to lots of different tubes and machines (a chest drainage tube, one arterial & two vein IV lines, EKG leads, a blood pressure cuff, and oxygen). But he had good color. He would half open his eyes every now and again, but he was pretty much out of it. Until the sedative meds wore off. Then he raised hell. He was already on morphine for pain, but after he ripped out one of his IVs, the nurse (who’d been with Sean since before surgery) gave him “anti-anxiety” medicine (a sedative). That chilled him out for awhile. He went through a cycle where he would rest peacefully, but then freak-out every 2-3 hours when his pain meds wore off. Sean’s surgery required a thoracotomy, which means that instead of accessing the heart from chest, they access it from his side under his arm and around to his back. From what the doctors & nurses have told us, this is one of the more painful surgeries you can have because they have to cut through so much muscle and tissue). So he was pretty out of it the first day. By Saturday, he was off of the supplemental oxygen and was able to go a little longer between morphine doses. By afternoon, they backed off on the sedative as well. By evening, Sean was able to stand, but not really walk around. He also started to eat a little more, but was still on IV fluids because we could not get him to drink very much. He had a good night, and by Sunday morning, he was up and walking around. His full appetite was back, and he was hungry! He was (as he should be) incredibly protective of his incision- he would not use his left arm, or even lift it above waist level. Other than that, he was back to his old self. He was up out of bed, singing songs, playing with his trains,
and eating very well. Amazing. In fact, we had to settle him down a few times because he'd get excited playing with trains and his heart rate would shoot up to almost 180 beats per minute... a little time-out with a train book calmed him down, then back to playing.
At this point it was time to transfer him from the CICU to the CCU (cardiac care unit). So Sunday afternoon, we moved down the hall, and Sean continues to do well, improving almost hourly, eating and playing:
The only concern right now is that his blood pressure is still high. This is not uncommon after a coarctation repair. Basically, his body has had high blood pressure due to the narrow part of the aorta. Once that was cut out, his body is in a bit of shock and overcompensates by raising the blood pressure. This should regulate itself over time (weeks to months), but for now, he has to take blood pressure medication. They are now working on fine-tuning the dosage. Once that is figured out, I think we will get the all clear to go home! Sean has been an amazing little trooper through all of this. He has remained in good spirits through all of the poking and prodding and pain. And the nursing staff here at CHOP has been fantastic. They have all fallen in love with Sean, and work very hard to keep him happy. We could not be more pleased. God heard all of our prayers, and has taken very good care of our little man. For that, I am forever grateful.
The house is mainly run by volunteers, and only charges $15/night for each family. You are welcome to stay as long as you need, until the day your child is discharged from the hospital. This particular Ronald McDonald House was the first ever, and is housed in a former mansion that has had several additions over the years. The mansion area is gorgeous, and if I ever get a chance, I’d love to take a more detailed tour (Michael did). But I digress... we headed to our room and pretty much went straight to bed. We needed to get up at four-thirty and we knew we would need our sleep for the next day. I’m sure I did sleep for an hour here and there, but it felt as though I simply watched the clock all night long. Sean was snuggled in between Michael and I (a very rare treat for him), and he slept very peacefully.
Since Sean couldn’t have anything to eat or drink after 11:00 pm, we let him sleep until it was time to go, leaving a few extra minutes to visit the train downstairs before leaving.
When we got to the hospital (a few blocks away), we signed in and were taken back to a room where Sean changed into a hospital gown and was given a sedative to help relax him and eventually make him sleep. It worked like a charm. Around 7:30, we met with the anesthesiologist and then followed her and Sean (asleep in his rolling bed) down the hallway to the outside of the operating rooms. We gave him a kiss, and off they went. I can honestly say at that point, I have never been more nervous in my life. I knew he was in good hands, but still, handing your child over to strangers for heart surgery is terrifying. As Sean went off to be prepped for surgery, we were taken up to Dr. Spray (the surgeon)’s office to meet with him. We had been told he is a “tall man of very few words”, and that pretty much sums it up. No idle chit-chat, there's work to be done; a heart that needs fixing. He explained the surgery and the risks (so many! becoming a paraplegic?!), asked if we had any questions (we didn’t), then off he went to get scrubbed up. We were then taken on a tour of the cardiac floor where Sean would come after surgery, and finally, we were shown to the family lounge just outside the area where Sean would be recovering (also sponsored by Ronald McDonald). The nurse promised hourly updates. By 9:30, we were told that the repair was done and they were closing him up, and by 10:00 we were told and we could go to the consult room to meet with Dr. Spray again. He told us that the surgery went very well, and after a brief visit back in the lounge, we were told we could go to Sean’s CICU (cardiac intensive care unit) room to see him. All cardiac patients go directly to the CICU following surgery. Sean was sleeping peacefully when we came in.
He was hooked up to lots of different tubes and machines (a chest drainage tube, one arterial & two vein IV lines, EKG leads, a blood pressure cuff, and oxygen). But he had good color. He would half open his eyes every now and again, but he was pretty much out of it. Until the sedative meds wore off. Then he raised hell. He was already on morphine for pain, but after he ripped out one of his IVs, the nurse (who’d been with Sean since before surgery) gave him “anti-anxiety” medicine (a sedative). That chilled him out for awhile. He went through a cycle where he would rest peacefully, but then freak-out every 2-3 hours when his pain meds wore off. Sean’s surgery required a thoracotomy, which means that instead of accessing the heart from chest, they access it from his side under his arm and around to his back. From what the doctors & nurses have told us, this is one of the more painful surgeries you can have because they have to cut through so much muscle and tissue). So he was pretty out of it the first day. By Saturday, he was off of the supplemental oxygen and was able to go a little longer between morphine doses. By afternoon, they backed off on the sedative as well. By evening, Sean was able to stand, but not really walk around. He also started to eat a little more, but was still on IV fluids because we could not get him to drink very much. He had a good night, and by Sunday morning, he was up and walking around. His full appetite was back, and he was hungry! He was (as he should be) incredibly protective of his incision- he would not use his left arm, or even lift it above waist level. Other than that, he was back to his old self. He was up out of bed, singing songs, playing with his trains,
and eating very well. Amazing. In fact, we had to settle him down a few times because he'd get excited playing with trains and his heart rate would shoot up to almost 180 beats per minute... a little time-out with a train book calmed him down, then back to playing.
At this point it was time to transfer him from the CICU to the CCU (cardiac care unit). So Sunday afternoon, we moved down the hall, and Sean continues to do well, improving almost hourly, eating and playing:
The only concern right now is that his blood pressure is still high. This is not uncommon after a coarctation repair. Basically, his body has had high blood pressure due to the narrow part of the aorta. Once that was cut out, his body is in a bit of shock and overcompensates by raising the blood pressure. This should regulate itself over time (weeks to months), but for now, he has to take blood pressure medication. They are now working on fine-tuning the dosage. Once that is figured out, I think we will get the all clear to go home! Sean has been an amazing little trooper through all of this. He has remained in good spirits through all of the poking and prodding and pain. And the nursing staff here at CHOP has been fantastic. They have all fallen in love with Sean, and work very hard to keep him happy. We could not be more pleased. God heard all of our prayers, and has taken very good care of our little man. For that, I am forever grateful.
4 comments:
So glad to hear that Sean's surgery went so well and that he's back up playing, eating & flirting with the nurses! :) I love that you have this blog so that we can check on his progress. Please don't hesitate to call if you need anything at all. Love, Mel
I'm 28 years old, was recently diagnosed with coarctation, and found your blog via Google. Soon I'll be undergoing something very similar to your son. Thanks for sharing the experience, and know that a full life is indeed possible even with a "defective" heart!
Thanks, Mel!
Casey- Good luck with your surgery. Please let me know if there are any questions I can answer for you. You are right- a "defective" heart does not mean a defective life! Best wishes!
wonderful
ELLA
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