We have had quite an eventful few weeks. I am grateful for everyone who prayed for Bentley, who offered help, those who did help, and cards and packages! We feel so blessed with all the love and support we have received!
As we were preparing for Bentleys heart surgery one of the things that is important is to get a dental clearance. Because if you have any untreated cavities there is bacteria that can get into your blood and cause infection during heart surgery. So we went to the pediatric dentist and Bentley had some cavities that needed to be addressed. We couldn't do it in the dental office because they wanted to put him under because he was so little. However, to be put under anesthesia he had to do it at a hospital under a cardiac anesthesiologist because of his heart condition. It took three dentists, and three different hospitals before we found one that could treat him. We got into UCSF children's and we had it scheduled for a week before his surgery.
We are not at the same hospital where Bentley was scheduled to have his surgery. So our choice was to get the Doctors and surgeons at UCSF review his case and start a new plan before having surgery, which could take 1-2 weeks, while bentley stays in the hospital, or they could transfer us to Stanford where his surgeon and cardiologist is and if there are any openings then Bentley has priority and try and have to have the surgery sooner. So we stayed the night at UCSF and by the next afternoon they had arranged for a medical transport to Stanford.
At Stanford they kept Bentleys heart closely monitored and they found patterns of tersauds. Which is something I don't completely understand, but it is usually a genetic condition called long QT syndrome. There is no history of having this in either of our families so they thought it could be because of his heart block. Either way the pacemaker that was planned on going in the next week would control it so it doesn't cause him to go into V-Fib, It won't fix it, but it will keep his heart steady. (We did have him tested to see if he has long qt syndrome, but we won't find out for another month or two).
At this point we are stuck in the CVICU (cardiovascular Intensive Care Unit) until he has his surgery. We did have one scare where the electro physiotherapist (Pacemaker Doctor) thought that he needed to have the pacemaker placed before his PA banding, which would mean two surgeries. This was because of the Tersauds pattern and she wanted to make sure that his heart was stable enough to have the surgery. However he was given several doses of magnesium which kept his levels up high enough that he could just have the one surgery.
Unfortunately a surgery slot didn't open until his scheduled one and we stayed the whole week in the CVICU just hanging out and trying to keep Bentley comfortable and happy.
 |
| Watching Minions getting ready for his Dental procedure |
The day arrives to get the cavities filled, we were one of the first ones and we are supposed to finished by noon home by two. However, during the procedure Bentley went into V-Fib three separate times, they were all about to 2.5 seconds and it would resolve itself so the surgeons didn't have to intervene at all. But it still is a scary thing to happen, If the V-fib lasts long enough you can go into cardiac arrest. At this point they weren't going to discharge him because there was a good chance he could have another episode of V-fib, so they admitted him:/ Bentley and I sat in the recovery area until we were the last ones there as the Doctors were collaborating with our cardiologist and trying to get him a bed at the hospital.
We are not at the same hospital where Bentley was scheduled to have his surgery. So our choice was to get the Doctors and surgeons at UCSF review his case and start a new plan before having surgery, which could take 1-2 weeks, while bentley stays in the hospital, or they could transfer us to Stanford where his surgeon and cardiologist is and if there are any openings then Bentley has priority and try and have to have the surgery sooner. So we stayed the night at UCSF and by the next afternoon they had arranged for a medical transport to Stanford.
At Stanford they kept Bentleys heart closely monitored and they found patterns of tersauds. Which is something I don't completely understand, but it is usually a genetic condition called long QT syndrome. There is no history of having this in either of our families so they thought it could be because of his heart block. Either way the pacemaker that was planned on going in the next week would control it so it doesn't cause him to go into V-Fib, It won't fix it, but it will keep his heart steady. (We did have him tested to see if he has long qt syndrome, but we won't find out for another month or two).
Unfortunately a surgery slot didn't open until his scheduled one and we stayed the whole week in the CVICU just hanging out and trying to keep Bentley comfortable and happy.
Surgery Day. Everything went well during the surgery, they put in the pacemaker first, then they placed his PA band on his artery. The surgeon came and talked to us after he finished and was pleased with how well he did. The next couple days were scary for me. It makes me anxious thinking about it, and I won't put details here, except that he was intubated with a breathing tube for a 24+hours. He was sedated, but not completely out because they didn't want his heart rate to be too slow (which is one reason we had the surgery, to seed up his heart). His recovery actually went really well.( I just don't think I was ready for the recovery and didn't really know what to expect.) All the doctors told us that the soonest he would be discharged was 7 days, and he was discharged after 5. Part of it is because he was so determined to go to the playroom. The nurses kept telling him when he was better he could go to the playroom, so he got himself better so he could go play! He truly is our miracle boy and I know that prayers were answered on his behalf.
 |
| An X-Ray taken after his Surgery! He really loves his Hot Wheels |
We still have a long recovery, pain management is hard, because he doesn't express how he is feeling. If he says something hurts he knows he will get medicine. (Which is one of my biggest battles by the way, sometimes it will take me an hour to get the medicine in his mouth without him spitting it out, I'm pretty sure I have tried every trick there is!) So I just try and figure it out by his body language and how whiney he is. The first two weeks he is supposed to stay home and rest, then for another four weeks take it easy and avoid large groups of people. But after the 6 weeks he should be feeling like himself again.
But Bentley is home! That is all I could ask for right now. I have been so blessed to have good friends, my mom and Alex's mom come to stay with us and take care of Hadley. I don't even know how to thank everyone! We don't know what is next, there could be two more surgeries in the next year. But right now we are just taking it one day at a time!
Love Always,
Alex, Lezlie, Bentley and Hadley
P.S. Bentley is now deathly afraid of the dentist.... He went in to have cavities filled and came out two weeks later having heart surgery! He has told me almost everyday since we have been home that he does not want to go to the Dentist!
Comments
Post a Comment