First we just want to thank all of you for your thoughts, prayers, meals, messages, etc....it has really meant a lot to us and really helped us through this time. I just thought I would post more details about his experience for those who were curious as we have only been able to get out bits and pieces due to how quickly this has all unfolded.
While Christian was in the NICU he was having trouble breathing and was diagnosed with a PDA (www.childrens.com/HealthLibrary/HealthLibContent.cfm?pageid=P02395). Basically a hole in his heart needed while in utero but expected to close approximately 72 hours after birth. This caused him to have trouble breathing due to fluid that built up on his lungs, a high heart rate and occasional food intolerance. They treated his symptoms with hopes that it would close on it's own as he grew like his sister's did, but at his last Dr. appointment in mid-December it had not. A procedure to close it was then scheduled for Jan 6th. The plan was to close it with a plug like instrument (Amplatzer) via catheter which is non surgical and a next day check out! I noticed on 12/21 that he was wheezing and he had thrown up two feedings that day. I called his doctor and by the end of the day she had the procedure moved to Wednesday 12/23 at 1 pm. She decided to check him in at Children's Medical Center on Tuesday though to start him on fluids and assure he was not dehydrated for his procedure. At this point we were told he was in heart failure, the last thing any parent wants to hear of course.
Flash forward to Wednesday about 3:30 pm. The doctor came out to let us know everything went perfect! The doctor we chose is considered the best of the best so we knew he was in good hands. Christian then went to recovery and we were able to see our little monkey. He at first seemed to be doing fine aside from a little raspy voice. Shortly after arriving in recovery he developed a fever of 101 and something just wasn't right so they ordered a chest x-ray and gave him tylenol. His fever went away very quickly and everything settled down so well that they even called to cancel the x-ray but it was too late so they went ahead with it. The cardiologist went to view the x-ray and discovered the device had come loose! It was sitting in his right ventrical (I think) and they had to go back in and remove it. Fortunately this was performed within about an hour and the retrieval was successful. He finally got back to his room about midnight, 11 hours after leaving for some rest for his 8 am surgery! Keep in mind our poor little munchkin has now not eaten for over 24 hours! (his last meal was at 8:30 pm on Tuesday) Thankfully he was so tired he rested peacefully all night.
The surgery on 12/24 was just going to be more invasive so that is why we went for the other procedure initially. This one involves about a two-three inch incision on his left side, they go in between two ribs and move his lung to the side then clip off this duct and then put him back together! Again, being at Children's we knew we had the best, but needless to say we were all so worried. He was just a little 8 lb baby put under anesthesia three times in under 24 hours! All went well during surgery and about 2 hours after we were able to see him in ICU. We immediately noticed he was still on a respirator which was supposed to be removed within an hour of the procedure. We were told that he would not start breathing on his own. They did a chest x-ray and there was quite a bit of fluid on his lungs and his right lung would not fully inflate. The doctors increased his lasix at that time and decided to have a respiratory therapist work with him every 3 hours. I can't tell you how heart breaking it was to see our little boy on the respirator. They kept him sedated quite a bit, but at times he would cry (of course no sound coming out) and fight it and there was nothing we could do. On top of all of that, it was Christmas Eve!
While Christian was in the NICU he was having trouble breathing and was diagnosed with a PDA (www.childrens.com/HealthLibrary/HealthLibContent.cfm?pageid=P02395). Basically a hole in his heart needed while in utero but expected to close approximately 72 hours after birth. This caused him to have trouble breathing due to fluid that built up on his lungs, a high heart rate and occasional food intolerance. They treated his symptoms with hopes that it would close on it's own as he grew like his sister's did, but at his last Dr. appointment in mid-December it had not. A procedure to close it was then scheduled for Jan 6th. The plan was to close it with a plug like instrument (Amplatzer) via catheter which is non surgical and a next day check out! I noticed on 12/21 that he was wheezing and he had thrown up two feedings that day. I called his doctor and by the end of the day she had the procedure moved to Wednesday 12/23 at 1 pm. She decided to check him in at Children's Medical Center on Tuesday though to start him on fluids and assure he was not dehydrated for his procedure. At this point we were told he was in heart failure, the last thing any parent wants to hear of course.
Flash forward to Wednesday about 3:30 pm. The doctor came out to let us know everything went perfect! The doctor we chose is considered the best of the best so we knew he was in good hands. Christian then went to recovery and we were able to see our little monkey. He at first seemed to be doing fine aside from a little raspy voice. Shortly after arriving in recovery he developed a fever of 101 and something just wasn't right so they ordered a chest x-ray and gave him tylenol. His fever went away very quickly and everything settled down so well that they even called to cancel the x-ray but it was too late so they went ahead with it. The cardiologist went to view the x-ray and discovered the device had come loose! It was sitting in his right ventrical (I think) and they had to go back in and remove it. Fortunately this was performed within about an hour and the retrieval was successful. He finally got back to his room about midnight, 11 hours after leaving for some rest for his 8 am surgery! Keep in mind our poor little munchkin has now not eaten for over 24 hours! (his last meal was at 8:30 pm on Tuesday) Thankfully he was so tired he rested peacefully all night.
The surgery on 12/24 was just going to be more invasive so that is why we went for the other procedure initially. This one involves about a two-three inch incision on his left side, they go in between two ribs and move his lung to the side then clip off this duct and then put him back together! Again, being at Children's we knew we had the best, but needless to say we were all so worried. He was just a little 8 lb baby put under anesthesia three times in under 24 hours! All went well during surgery and about 2 hours after we were able to see him in ICU. We immediately noticed he was still on a respirator which was supposed to be removed within an hour of the procedure. We were told that he would not start breathing on his own. They did a chest x-ray and there was quite a bit of fluid on his lungs and his right lung would not fully inflate. The doctors increased his lasix at that time and decided to have a respiratory therapist work with him every 3 hours. I can't tell you how heart breaking it was to see our little boy on the respirator. They kept him sedated quite a bit, but at times he would cry (of course no sound coming out) and fight it and there was nothing we could do. On top of all of that, it was Christmas Eve!
Over the next 48+ hours the respiratory therapist worked with him to get the fluid off of his lungs and inflate that right lung. The doctors told me he had been in worse heart failure than originally thought. I shudder to think of what would have happened if we had waited until Jan. 6th. FINALLY on Saturday the 26th they weened him off the respirator. I just thought for sure I would hear a huge scream when it came out, but there was silence...his voice was completely gone! Over the next couple of hours they watched him very close and he was still on CPAP which they continued to ween him off over the next couple of days. (the little oxygen thing that blows air in his nose). The next step was eating. They let him try about 3:30 pm and he did great! He was a little out of practice at first, but he quickly got the coordination down. (no thanks to the feeding therapist, but that is a blog posting of it's own). After that he ate like a horse every 2-3 hours...far more than he ever had! I was thrilled! They kept him under observation for until Monday then moved him to a "regular" room. He continued to eat like a champ and breath great and we FINALLY got to check out on Tuesday...one week after checking in.
Today is January 1st and he continues to thrive and we are so thankful. He is still working to get his voice back and his incision is still healing but he is breathing and eating sooo much better! Today we celebrated our first Christmas with them and we were all so thankful he is "fixed"! He is a big smiler and I swear he is trying to tell us how much better he feels. It was so hard to see him struggle to breath before...now he is so much more peaceful and comfortable!
I will finally draw this to a close, but I have to say our Children's experience overall was mediocre at best. I hate to say this but I expected so much more....again, a whole other blog on it's own.
Well, thank you all again, we are so extremely happy to have our baby boy home and healthy!
Happy Holidays!
Love,
Jennifer and Shelby
Jen, I'm so sorry things were so crazy for you all this past week. I'm very relieved to hear that Christian is doing so well! Please let me know if there is anything I can do for you!
ReplyDeleteHope to see you soon.