It's been a kind of bumpy weekend! You know already that we had thought we were going to get discharged on Friday, and then again on Sunday...as I sit on my little perch in our hospital room, I can very positively tell you that it didn't happen that way =D
I guess I forgot to explain this in previous posts (it's hard to remember what's been said and what hasn't, so seriously, ask questions if I forget something!), but a kid with a heart condition is never going to have the same oxygen saturation as someone with a normal heart. In fact, they don't want a kid with a heart problem to have "normal" sats, because it can actually screw things up in the long run. Since Brandt's blue and red blood mixes in his heart, some of the volume that gets sent to the lungs is already oxygenated. If it were up in the 95-100% range, it would be hard on the lungs, as they tried to get more oxygen into something that's already so saturated. There's more to it than that, but I haven't asked for a detailed answer, so I can't break it down any further.
Anyway, every heart kid is different. Even between two kids with the exact same deformities, the range that they sit at comfortably could be very different. Brandt tends to sit in the mid-to-upper-seventies. Sometimes he jumps into the 80's, and even occasionally (when he's on oxygen) the 90's, but that's too high of a mark, so at that point, they generally turn the flow off or down. Even after his final surgery, Brandt's sats will probably be no higher than 90 on a good day; that's high enough to play like a normal kid, but he'll probably never be an Olympic athlete. (With his genes, that wasn't likely anyway!)
This past week, Brandt's sats have looked great. That's why they were planning to send us home on Friday. But then he dipped for a little bit while I was out to dinner, and was put back on oxygen to get him back up where he needed to be. I was upset, as that little oxygen canula was now the only thing keeping us from going home. Sometimes, looking at the big picture isn't my strong suit. It seemed, at first, that my irritation was justified, because after he came off of the oxygen the next day, he hung out at the high end of his average for a good day and a half with no issues at all. It had to have been a fluke, and I was convinced that, had I been there, I could have prevented the use of the oxygen and gotten us discharged earlier.
Sunday morning, however, he started dipping again. First to the low 70's, then the upper 60's, and then suddenly, he hit the mid-50's! I had never seen that happen before, and regardless of every trick I had up my sleeve to get the sats to rise, his stayed stubbornly too low. At best, they reached his low range, and our chance of leaving that day was suddenly out the window.
Friday, I was obviously disappointed (I know I came off pretty grumpy in my last post). Things had been going so smoothly, and then the one time he had a little hiccup was the one time it actually counted and kept us from going home. This time, however, the disappointment at not getting to go home only crossed my mind for a split second. Instead, I was having flashbacks to the day our "perfectly healthy" little boy was born. Everything was going great, until we found something wrong, and life suddenly took a left turn without hitting the brakes. Sunday, everything was going great, until they realized that all this de-satting was actually caused by something. There was still something wrong with the baby that we thought was doing perfectly well. We went from making plans for home care to talking about x-rays, echos, and a possible trip to the cath lab, in the space of a five minute conversation.
I was preparing myself for another open heart surgery, but the echo seemed to only show a small narrowing of the shunt that they had put in, where it connected to the PA, possibly caused by scar tissue that had formed during the healing process. That, at least, would only require a trip to the cath lab, where they would run a catheter up a vein in his leg, thread a camera through, and then a tiny little balloon to expand that opening, and allow the blood to flow through to the lungs like it should, thus stabilizing his saturations. If the balloon didn't work, they would place a stent, instead, which is essentially a wire mesh tube that holds the vessel open.
Even aside from fixing this problem, there's another up-side to having this catheterization done today: while they're taking care of the problem, they'll be able to totally explore the heart, better than an echo can do, and make sure that there's nothing else wrong before they send us home! We'll be going home with even more peace of mind than we had previously.
Anyway, he's currently in having that procedure done. He should be out in an hour or so, and then has a few hours of down time to recover from the anesthesia. I'll post again tomorrow when we know more about what has happened!
P.S....thanks for sticking with me and my mood swings! I promise, I'm as back to normal as I can be for the time being =D
I guess I forgot to explain this in previous posts (it's hard to remember what's been said and what hasn't, so seriously, ask questions if I forget something!), but a kid with a heart condition is never going to have the same oxygen saturation as someone with a normal heart. In fact, they don't want a kid with a heart problem to have "normal" sats, because it can actually screw things up in the long run. Since Brandt's blue and red blood mixes in his heart, some of the volume that gets sent to the lungs is already oxygenated. If it were up in the 95-100% range, it would be hard on the lungs, as they tried to get more oxygen into something that's already so saturated. There's more to it than that, but I haven't asked for a detailed answer, so I can't break it down any further.
Anyway, every heart kid is different. Even between two kids with the exact same deformities, the range that they sit at comfortably could be very different. Brandt tends to sit in the mid-to-upper-seventies. Sometimes he jumps into the 80's, and even occasionally (when he's on oxygen) the 90's, but that's too high of a mark, so at that point, they generally turn the flow off or down. Even after his final surgery, Brandt's sats will probably be no higher than 90 on a good day; that's high enough to play like a normal kid, but he'll probably never be an Olympic athlete. (With his genes, that wasn't likely anyway!)
This past week, Brandt's sats have looked great. That's why they were planning to send us home on Friday. But then he dipped for a little bit while I was out to dinner, and was put back on oxygen to get him back up where he needed to be. I was upset, as that little oxygen canula was now the only thing keeping us from going home. Sometimes, looking at the big picture isn't my strong suit. It seemed, at first, that my irritation was justified, because after he came off of the oxygen the next day, he hung out at the high end of his average for a good day and a half with no issues at all. It had to have been a fluke, and I was convinced that, had I been there, I could have prevented the use of the oxygen and gotten us discharged earlier.
Sunday morning, however, he started dipping again. First to the low 70's, then the upper 60's, and then suddenly, he hit the mid-50's! I had never seen that happen before, and regardless of every trick I had up my sleeve to get the sats to rise, his stayed stubbornly too low. At best, they reached his low range, and our chance of leaving that day was suddenly out the window.
Friday, I was obviously disappointed (I know I came off pretty grumpy in my last post). Things had been going so smoothly, and then the one time he had a little hiccup was the one time it actually counted and kept us from going home. This time, however, the disappointment at not getting to go home only crossed my mind for a split second. Instead, I was having flashbacks to the day our "perfectly healthy" little boy was born. Everything was going great, until we found something wrong, and life suddenly took a left turn without hitting the brakes. Sunday, everything was going great, until they realized that all this de-satting was actually caused by something. There was still something wrong with the baby that we thought was doing perfectly well. We went from making plans for home care to talking about x-rays, echos, and a possible trip to the cath lab, in the space of a five minute conversation.
I was preparing myself for another open heart surgery, but the echo seemed to only show a small narrowing of the shunt that they had put in, where it connected to the PA, possibly caused by scar tissue that had formed during the healing process. That, at least, would only require a trip to the cath lab, where they would run a catheter up a vein in his leg, thread a camera through, and then a tiny little balloon to expand that opening, and allow the blood to flow through to the lungs like it should, thus stabilizing his saturations. If the balloon didn't work, they would place a stent, instead, which is essentially a wire mesh tube that holds the vessel open.
Even aside from fixing this problem, there's another up-side to having this catheterization done today: while they're taking care of the problem, they'll be able to totally explore the heart, better than an echo can do, and make sure that there's nothing else wrong before they send us home! We'll be going home with even more peace of mind than we had previously.
Anyway, he's currently in having that procedure done. He should be out in an hour or so, and then has a few hours of down time to recover from the anesthesia. I'll post again tomorrow when we know more about what has happened!
P.S....thanks for sticking with me and my mood swings! I promise, I'm as back to normal as I can be for the time being =D
Oh Kara you are doing so good under the circumstances!! No need to apologize for your mood swings! You are going through a lot. I am amazed that you are keeping us all posted! We love following along and think of you and the baby so much! Sending lots of love for a good outcome today and that you can soon go home.
ReplyDeleteI agree with Nan. You are doing wonderful and you shouldn't expect to not have emotional ups and downs. We understand. It is great that you are able to blog about it and we surely enjoy reading it, even if the news isn't what you hoped it would be. Hang in there, girl. Hugs.
ReplyDeletePsssh. Mood swings, schmood swings. You're still only 2-1/2 weeks postpartum, love. The hormones will ease off eventually. A long warm hug to you, my love.
ReplyDeleteMy thought to Shirley! This amazing Mama is still recovering postpartum! Baby Brandt and Wade have an amazing Mama.
DeleteMy thought to Shirley! This amazing Mama is still recovering postpartum! Baby Brandt and Wade have an amazing Mama.
DeleteYou're doing so well, Kara, under all of this stress! If you need to vent, please know that we're all here as a shoulder to lean on! Love to you all.
ReplyDeleteHoney I think you are awesome! Thank you SOOOOOOO much for keeping us abreast of what is happening. I think of you so often. Hugs to you both!
ReplyDeleteI think you are nothing short of AMAZING!! I can't even imagine what you've been through and you still have your sense of humor - give yourself a break, you are doing fantastic and so is your little fighter!! Best wishes
ReplyDeleteEeesh. Eaze of the hormones, would ya?
ReplyDeleteJOKING! I have worse mood swings in a normal day. .. you're doing amazing! Thanks for taking the time and energy to write for us all!
Kara--YOU and BABY BRANDT are doing wonderful! Remember healing is not always an uphill climb, but a process of 2 steps forward & 1 step backwards or even just 1 step forward and 2 steps backward. I had heard you would be gone 4-5 weeks when you left, so anything short of 4 weeks is miraculous for what Brandt has gone thru with his surgery & recovery. Thank you for continuing to share with all. Love you and your baby whenever we see him. I hope all the comments are encouraging to you as you are doing SUPER thru all of this. Love & hugs, Judy
ReplyDeleteI'm so impressed by the amazing spirit you have through all of this! I've never met you (that I know of) but as a fellow Mama who went through tough/unexpected lots of time a the hospital.....I think you're doing amazing. my prayers are with you!
ReplyDeleteI'm so impressed by the amazing spirit you have through all of this! I've never met you (that I know of) but as a fellow Mama who went through tough/unexpected lots of time a the hospital.....I think you're doing amazing. my prayers are with you!
ReplyDelete