We thought we made it, we thought we might get to say "No SVT episodes since January" come her next Cardiology appointment, we were so hopeful...
Last night was a huge disappointment for us. At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us. When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT. For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all. Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol. We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ. I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat. FYI: if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away. About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death. Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay. Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher. Of course it scared me, it scared me to death, I really don't think I'll EVER get over that. Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart. The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck. Second try was for 10 seconds...Still no luck. One more try for 15 seconds...And again no luck. I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(. Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine. On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed. Needless to say we were quite relieved, but also quite stressed. We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.
Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode. I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.
We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment. My goal is still to get her Amiodarone free before or on her birthday. She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight). So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now. That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.
My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain. I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.
Maybe she'll be off the Amiodarone by her birthday....maybe.
Showing posts with label Adenosine. Show all posts
Showing posts with label Adenosine. Show all posts
4.10.2012
12.28.2011
Primary Children's Medical Center 8-31-11
Talk about disappointment...I've waited ALL morning for the Cardiology team to stop in and talk to me, I started to feel like it was either a really good thing they were taking their time, I thought maybe they were writing prescriptions out and getting ready for release, or that it was a really bad thing, I wondered if maybe they were thinking today wasn't the day...I was hopeful though...bad idea, I totally got my hopes dashed. And I cried, really cried for the first time in 2 weeks. I'm exhausted, I need a break. Miss K is a really good baby but she has moments just like any other baby where she just cries for no apparent reason and holding her and rocking and bouncing and changing her diaper and offering the binky, not feeding her because it's been less than an hour, don't work and she just screams and wiggles and is VERY hard to keep a hold of because she really is a wormy, squirmy baby. This doesn't bother me at home because I usually have help, or at least I know at the end of the day I'll have help, when Daddy is home. I can walk away and lock myself in my room, or go for a walk outside and Daddy will take care of the baby for a few minutes. I can't do that here. The nurses have 4 patients each and on this floor they ask that one adult family member stick around 24/7 to take care of the child, especially infants because the nurses don't have time to take care of them like they need. So I have to deal with everything...alone. I don't get any relief of any kind, I occasionally get to sneak away for one meal a day, but even then I'm gone less than 10 minutes and I almost always come back to find her screaming frantically in her room and nobody doing anything about it. It's frustrating :o(.
So the nurse came in about 1/2 hour ago and gave me the bad news, she had talked to the Doctors and they told her Miss K is not leaving today :o(. I hadn't seen the Doctors yet, I'm sure they were afraid of being the ones to break the bad news since they promised me yesterday that we were leaving here today, they left it up to the nurse to break the bad news. The cardiology team finally came in about 15 minutes after I was told the news, I think they were waiting for me to get it all out and be calm and collected again when they came in, I'm sure by now they are afraid of my reactions, none of them want to deal with my crying, lol!
Yesterday Miss K had a few SVT episodes, the team isn't concerned too much about that but they were concerned about the early morning one that lasted almost an hour before she came out of it on her own, after me blowing in her face multiple times without success and being iced multiple times without success. They didn't like that we had to get out the Adenosine and even think about using it. I agree, I would hate to leave here and end up coming right back, but it doesn't mean I'm taking the news that we have to stay well at all! The Cardiology team is upping her dose of both the Amiodarone and Propanolol and watching her to make sure it works. When I said "so we're going home tomorrow instead", they wouldn't confirm or deny it, they just said that there wasn't much time between giving her her new doses and tomorrow. In other words I think they mean they'll send her home Friday. They said they want to see her doing really great before they release her. I like being safe rather than sorry but I'm more than ready to just take what I'm getting and go home now.
It's so frustrating to hear that there were somewhere around 7 total SVT babies admitted here the week Miss K came in. It's even more frustrating to hear that a good amount of them went home within 24-48 hours all healthy and ready to go. It's yet even more frustrating to hear that the baby boy Miss K's age that was so very bad off while in SVT, whose SVT was threatening his life (unlike Miss K who's done awesome with it), went through all the same medications and doses as Miss K did except they pushed through them quickly and in less than 48 hours, getting him under control and officially out of SVT within 3 days, he left here 2 or 3 days ago having not gone into SVT in over 72 hours. I hate knowing that because the Doctors have taken their time with Miss K, they've taken over 2 weeks to get her on the right medications and doses and she's still going into SVT occasionally. Now we're doing another dose change...I can only pray this is the last one and we'll really be done for good in the next day or so.
I want to go home. I want to hold both my babies together. I want to be together as a family. I want to be in our routine and enjoying our days together. I want to watch my baby girl grow and change in her own home. I want to put clothes on her! Nothing we bought for her first few weeks home is going to fit by the time we get back, she's surely outgrown most of her cute little outfits she only wore once or not at all. I want to watch my baby boy grown and change, I've missed SO much these past few weeks, he's a very different child than he was when all this began, he's learned so many new things and changed so much without me. I just want all this to be over.
So the nurse came in about 1/2 hour ago and gave me the bad news, she had talked to the Doctors and they told her Miss K is not leaving today :o(. I hadn't seen the Doctors yet, I'm sure they were afraid of being the ones to break the bad news since they promised me yesterday that we were leaving here today, they left it up to the nurse to break the bad news. The cardiology team finally came in about 15 minutes after I was told the news, I think they were waiting for me to get it all out and be calm and collected again when they came in, I'm sure by now they are afraid of my reactions, none of them want to deal with my crying, lol!
Yesterday Miss K had a few SVT episodes, the team isn't concerned too much about that but they were concerned about the early morning one that lasted almost an hour before she came out of it on her own, after me blowing in her face multiple times without success and being iced multiple times without success. They didn't like that we had to get out the Adenosine and even think about using it. I agree, I would hate to leave here and end up coming right back, but it doesn't mean I'm taking the news that we have to stay well at all! The Cardiology team is upping her dose of both the Amiodarone and Propanolol and watching her to make sure it works. When I said "so we're going home tomorrow instead", they wouldn't confirm or deny it, they just said that there wasn't much time between giving her her new doses and tomorrow. In other words I think they mean they'll send her home Friday. They said they want to see her doing really great before they release her. I like being safe rather than sorry but I'm more than ready to just take what I'm getting and go home now.
It's so frustrating to hear that there were somewhere around 7 total SVT babies admitted here the week Miss K came in. It's even more frustrating to hear that a good amount of them went home within 24-48 hours all healthy and ready to go. It's yet even more frustrating to hear that the baby boy Miss K's age that was so very bad off while in SVT, whose SVT was threatening his life (unlike Miss K who's done awesome with it), went through all the same medications and doses as Miss K did except they pushed through them quickly and in less than 48 hours, getting him under control and officially out of SVT within 3 days, he left here 2 or 3 days ago having not gone into SVT in over 72 hours. I hate knowing that because the Doctors have taken their time with Miss K, they've taken over 2 weeks to get her on the right medications and doses and she's still going into SVT occasionally. Now we're doing another dose change...I can only pray this is the last one and we'll really be done for good in the next day or so.
I want to go home. I want to hold both my babies together. I want to be together as a family. I want to be in our routine and enjoying our days together. I want to watch my baby girl grow and change in her own home. I want to put clothes on her! Nothing we bought for her first few weeks home is going to fit by the time we get back, she's surely outgrown most of her cute little outfits she only wore once or not at all. I want to watch my baby boy grown and change, I've missed SO much these past few weeks, he's a very different child than he was when all this began, he's learned so many new things and changed so much without me. I just want all this to be over.
12.27.2011
Primary Children's Medical Center 8-27-11
Sorry, I had to skip a day this time around. I took off Thursday evening and left Daddy here with Miss K and a good supply of frozen milk. I went to my parents house to have cake with Roo for his birthday then I took him home for the night and all day Friday. I don't take my laptop with me when I do this because I don't even want the temptation to be there when I'm trying to spend all the time I can with my little boy. It was a great day and night with him. He was getting very cranky being at my parents, he's decided it's time to be home, I don't blame him at all it really is time to be home. He's starting to freak out a bit when I try to leave him anywhere. Thursday evening he worried I was leaving without him, he kept a close eye on me and when I started gathering things to leave he cried and ran around trying to grab all his stuff as fast as he could to get to the door before I did. It broke my heart, I was so glad I was taking him with me so I didn't have to break his heart and leave him! He was so happy to be home with me! When we got there I asked him if he wanted to get in his bed and he said "Mommy's bed?", I didn't think he'd remember napping with me in our bed last Sunday, lol! Luckily I got him to sleep in his own bed and he slept all night just fine :o). Friday was kind of crazy with him, he was so cranky and easy to make mad! But I enjoyed my time with him and I know he enjoyed it as well. I miss him so much and can't wait to be home as a family again!
Daddy had a pretty good night and day with Miss K. I guess she had to get another new IV Thursday night :o(. She also had a few more episodes of SVT. Friday morning the Cardiology team dropped by and announced they were putting her back on the Amiodarone IV drip for another 24 hours :o(, they weren't happy with how many times she'd been in SVT for the day. Daddy was very vague on any details with me so I really don't know what the real plan is or what's going on as of right now, I'll find out sometime this morning when they come by again.
Miss K has another infiltrated IV :o(, it's her left arm this time, which means we've run out of limbs to put IV's in, she's down to just her right arm :o(. I'm hoping and praying with all my might that she doesn't need the IV's anymore now so we don't have to do a central line, every time she's infiltrated an IV they've thought about a central line but dismissed the thought because she shouldn't be on IV's much longer, if she was going to get a central line it should have been done 2 weeks ago, I'm wishing they had done that in the first place to save her poor little body :o(. Amiodarone infiltrates look horrible, and they can't feel good at all :o(.
Cardiology is very happy with Miss K's latest progress, she's only gone into SVT 3 times in about 24 hours, YAY! But those 3 times were pretty long and she had to have help to come out of it, they don't really like that. But they said they think they've gone as far as they can with the medications and that since she can be brought out of SVT with natural methods that can be done at home they are willing to consider a closer go home date! So, they want her to be kept on the Amiodarone IV drip for 24 more hours just in case it helps steady her even more then they'll take her off of it tomorrow morning! They also said that if she blows another IV or infiltrates or whatever then we should just take the Amiodarone off and forget about the 24 hours, YAY again! Sadly, within an hour of them saying this Miss K's last IV went bad, luckily it's not infiltrated and it had nothing to do with her vein, the IV line itself had a leak in it near the entry so we had to remove it, but she has to have an IV in her just in case it's needed so they will be calling the IV team in again to place a new one, but we're just happy she can have a new one and that it was the IV itself that was having trouble.
The Cardiologist that talked to me today was new to me, I haven't seen him before. He is a great Doctor as far as I can tell. He told me that they would prefer she have some type of heart monitor for her to go home with since she's still going into SVT and they're sure she will most likely still be going into it very occasionally at home. So he suggested we buy a sports Heart Rate Monitor to put on her. Daddy had previously asked about these when talking to nurses and other Doctors but he never mentioned it to Cardiology because the others told him it wouldn't work because she's an infant. Today's Cardiologist told me they've put these monitors on trial in the clinic and that they work just great so he wants us to get one for her so we can monitor when she's in SVT and make sure she comes out of it. Daddy is so excited, it's what he wanted to do from the beginning so he's now currently researching the best of the best out there and we'll be getting one, no matter the cost. This is something we think saving money on an affordable one won't be acceptable so he's been instructed by me to ignore price and look only at reviews and quality, we'll pay what we have to to keep our baby girl safe.
The pediatric team came by and they are impressed as well, though less impressed than Cardiology, they aren't as easy going about the SVT as others are. In fact one of the Doctors came and sat through an SVT episode in the night and was on edge the whole time getting ready to call for Adenosine. I got her out of it by blowing in her face, he was impressed that worked, and then he relaxed (See Physical Maneuvers). So they aren't happy with Cardiology telling me just to take her off the Amiodarone drip if she looses her IV, lol! But they are happy with everything else, they're glad to see her on her way to recovery.
I have strict instructions to get her in to the pediatrician as soon as we're home and then in about a month her pediatrician needs to send her in for an MRI to see if she was/is having seizures. None of us think she really is but we need to make sure, better safe than sorry. They're keeping her on the Keppra for at least another 2 weeks just in case then they'll talk about whether she really needs it or not.
Her infiltrated IV locations on her two feet don't look great at all. I'm not happy, her cute little feet look so horrible and painful! But they can't really do anything about it but watch and monitor them. Her little arm that joined the party looks bad too, she has a "Popeye" bulge in it and it's all red :o(. I guess they've had a ton of Amiodarone infiltrates this week but they can't really do anything to help them heal, just watch them. So here's to hoping they heal well and quickly on their own! I haven't been able to get a good picture of them yet but I will post as soon as I do.
Forgot to mention we had a little birthday party for Roo here at the hospital last night. It was nice to have my parents, little sister and 1 brother and Daddy's mom and Grandma Dot come celebrate with us :o). Roo had a blast, he got to open more presents, he got a TON of Mater stuff, lol! Don't know what we'll do with it all! He got an awesome cake made by a friend of a friend and we all loved it :o), these girls are such sweethearts for doing this for me :o). We celebrated outside on the court and had a blast for an hour or so.
We took Miss K off the Amiodarone drip totally today because of the non-working IV, they called the cardiology team and they told us to keep it off, they're confident she'll be fine :o). We got a new IV put in, now it's just there in case they need one for whatever reason, but she's not hooked up to any drips :o).
Around 3:00pm Miss K had her first SVT episode in 12 hours. I had a new nurse who was sort of panicky, she didn't really know exactly how to handle SVT so seeing Miss K in it made her nervous. After 25 minutes she begged me to do something so I blew in Miss K's face...about 10 times...and it didn't work so the nurse pulled out a bag of ice, she started to panic then because Miss K's heart rhythm was coming up as VTACH on the screen instead of regular SVT. She took Miss K from me and applied the ice, it worked for a split second and then she went back into SVT, we went through this about 5 times before she finally came out of it. But, 5 minutes later she went right back into it, as soon as the ice was applied she went into what looked like VTACH again, the nurse then panicked more and after frantically (and not very effectively because she was so freaked out) trying the ice about 10 times in a row (without giving poor Miss K much of a break between) she pushed the Code Blue button. I had no idea she had done this until a whole team of Doctors and nurses came running and whipped open our doors and crowded into the room turning on lights, pushing furniture out of the way, throwing tables and chairs and bringing in equipment! The next thing I knew they had applied the patches for the crash cart to Miss K's little body ready to shock her if her heart stopped! She had an oxygen mask on and was suddenly hooked up to all kinds of things. I was pushed into a corner watching about 8-10 people crowded around my baby girl making it impossible for me to see her or anything that was going on. I didn't panic much though, I knew she was fine but I couldn't understand what the nurse thought was so important to need all that. They started getting out the Adenosine and about that time a calm Doctor applied the ice one more time and Miss K came right out of SVT and fell asleep. She was totally fine. The nurse got a little bit reprimanded by the charge nurse. I felt bad for her, she was a little embarrassed for what she had caused.
The good news is when the nurse and Doctors reported the whole episode to the cardiology team and asked them if we should turn the Amiodarone drip back on the cardiologists all said she was doing as well as expected without it and to keep it off :o). So hopefully tomorrow morning the decision is still the same and we can hopefully be moved back upstairs to regular care and not ever be back in here again! I am worried about what that last episode was though, her rhythm really didn't look good at all to me, it had me a little worried. I really don't want her doing that at home at all!
Tonight I'm going to start having the nurses teach me how to check her profusion efficiently and how to feel her pulse in her ankle to make sure she's pumping blood throughout her body, if I can do this correctly then IF she does go into SVT at home then I will be able to know if she's handling it well enough to ride it out or if we need to bring her back in. It'll make me feel a lot better.
So we'll just keep praying that she's really doing as well as they say she is and that we can all be home together as a family again very soon!
Daddy had a pretty good night and day with Miss K. I guess she had to get another new IV Thursday night :o(. She also had a few more episodes of SVT. Friday morning the Cardiology team dropped by and announced they were putting her back on the Amiodarone IV drip for another 24 hours :o(, they weren't happy with how many times she'd been in SVT for the day. Daddy was very vague on any details with me so I really don't know what the real plan is or what's going on as of right now, I'll find out sometime this morning when they come by again.
Miss K has another infiltrated IV :o(, it's her left arm this time, which means we've run out of limbs to put IV's in, she's down to just her right arm :o(. I'm hoping and praying with all my might that she doesn't need the IV's anymore now so we don't have to do a central line, every time she's infiltrated an IV they've thought about a central line but dismissed the thought because she shouldn't be on IV's much longer, if she was going to get a central line it should have been done 2 weeks ago, I'm wishing they had done that in the first place to save her poor little body :o(. Amiodarone infiltrates look horrible, and they can't feel good at all :o(.
Cardiology is very happy with Miss K's latest progress, she's only gone into SVT 3 times in about 24 hours, YAY! But those 3 times were pretty long and she had to have help to come out of it, they don't really like that. But they said they think they've gone as far as they can with the medications and that since she can be brought out of SVT with natural methods that can be done at home they are willing to consider a closer go home date! So, they want her to be kept on the Amiodarone IV drip for 24 more hours just in case it helps steady her even more then they'll take her off of it tomorrow morning! They also said that if she blows another IV or infiltrates or whatever then we should just take the Amiodarone off and forget about the 24 hours, YAY again! Sadly, within an hour of them saying this Miss K's last IV went bad, luckily it's not infiltrated and it had nothing to do with her vein, the IV line itself had a leak in it near the entry so we had to remove it, but she has to have an IV in her just in case it's needed so they will be calling the IV team in again to place a new one, but we're just happy she can have a new one and that it was the IV itself that was having trouble.
The Cardiologist that talked to me today was new to me, I haven't seen him before. He is a great Doctor as far as I can tell. He told me that they would prefer she have some type of heart monitor for her to go home with since she's still going into SVT and they're sure she will most likely still be going into it very occasionally at home. So he suggested we buy a sports Heart Rate Monitor to put on her. Daddy had previously asked about these when talking to nurses and other Doctors but he never mentioned it to Cardiology because the others told him it wouldn't work because she's an infant. Today's Cardiologist told me they've put these monitors on trial in the clinic and that they work just great so he wants us to get one for her so we can monitor when she's in SVT and make sure she comes out of it. Daddy is so excited, it's what he wanted to do from the beginning so he's now currently researching the best of the best out there and we'll be getting one, no matter the cost. This is something we think saving money on an affordable one won't be acceptable so he's been instructed by me to ignore price and look only at reviews and quality, we'll pay what we have to to keep our baby girl safe.
The pediatric team came by and they are impressed as well, though less impressed than Cardiology, they aren't as easy going about the SVT as others are. In fact one of the Doctors came and sat through an SVT episode in the night and was on edge the whole time getting ready to call for Adenosine. I got her out of it by blowing in her face, he was impressed that worked, and then he relaxed (See Physical Maneuvers). So they aren't happy with Cardiology telling me just to take her off the Amiodarone drip if she looses her IV, lol! But they are happy with everything else, they're glad to see her on her way to recovery.
I have strict instructions to get her in to the pediatrician as soon as we're home and then in about a month her pediatrician needs to send her in for an MRI to see if she was/is having seizures. None of us think she really is but we need to make sure, better safe than sorry. They're keeping her on the Keppra for at least another 2 weeks just in case then they'll talk about whether she really needs it or not.
Her infiltrated IV locations on her two feet don't look great at all. I'm not happy, her cute little feet look so horrible and painful! But they can't really do anything about it but watch and monitor them. Her little arm that joined the party looks bad too, she has a "Popeye" bulge in it and it's all red :o(. I guess they've had a ton of Amiodarone infiltrates this week but they can't really do anything to help them heal, just watch them. So here's to hoping they heal well and quickly on their own! I haven't been able to get a good picture of them yet but I will post as soon as I do.
Forgot to mention we had a little birthday party for Roo here at the hospital last night. It was nice to have my parents, little sister and 1 brother and Daddy's mom and Grandma Dot come celebrate with us :o). Roo had a blast, he got to open more presents, he got a TON of Mater stuff, lol! Don't know what we'll do with it all! He got an awesome cake made by a friend of a friend and we all loved it :o), these girls are such sweethearts for doing this for me :o). We celebrated outside on the court and had a blast for an hour or so.
8-27-11 A New Report:
Whew! What a long day! We hopped for boring as usual but got a little bit of excitement thrown in :o(. We took Miss K off the Amiodarone drip totally today because of the non-working IV, they called the cardiology team and they told us to keep it off, they're confident she'll be fine :o). We got a new IV put in, now it's just there in case they need one for whatever reason, but she's not hooked up to any drips :o).
Around 3:00pm Miss K had her first SVT episode in 12 hours. I had a new nurse who was sort of panicky, she didn't really know exactly how to handle SVT so seeing Miss K in it made her nervous. After 25 minutes she begged me to do something so I blew in Miss K's face...about 10 times...and it didn't work so the nurse pulled out a bag of ice, she started to panic then because Miss K's heart rhythm was coming up as VTACH on the screen instead of regular SVT. She took Miss K from me and applied the ice, it worked for a split second and then she went back into SVT, we went through this about 5 times before she finally came out of it. But, 5 minutes later she went right back into it, as soon as the ice was applied she went into what looked like VTACH again, the nurse then panicked more and after frantically (and not very effectively because she was so freaked out) trying the ice about 10 times in a row (without giving poor Miss K much of a break between) she pushed the Code Blue button. I had no idea she had done this until a whole team of Doctors and nurses came running and whipped open our doors and crowded into the room turning on lights, pushing furniture out of the way, throwing tables and chairs and bringing in equipment! The next thing I knew they had applied the patches for the crash cart to Miss K's little body ready to shock her if her heart stopped! She had an oxygen mask on and was suddenly hooked up to all kinds of things. I was pushed into a corner watching about 8-10 people crowded around my baby girl making it impossible for me to see her or anything that was going on. I didn't panic much though, I knew she was fine but I couldn't understand what the nurse thought was so important to need all that. They started getting out the Adenosine and about that time a calm Doctor applied the ice one more time and Miss K came right out of SVT and fell asleep. She was totally fine. The nurse got a little bit reprimanded by the charge nurse. I felt bad for her, she was a little embarrassed for what she had caused.
The good news is when the nurse and Doctors reported the whole episode to the cardiology team and asked them if we should turn the Amiodarone drip back on the cardiologists all said she was doing as well as expected without it and to keep it off :o). So hopefully tomorrow morning the decision is still the same and we can hopefully be moved back upstairs to regular care and not ever be back in here again! I am worried about what that last episode was though, her rhythm really didn't look good at all to me, it had me a little worried. I really don't want her doing that at home at all!
Tonight I'm going to start having the nurses teach me how to check her profusion efficiently and how to feel her pulse in her ankle to make sure she's pumping blood throughout her body, if I can do this correctly then IF she does go into SVT at home then I will be able to know if she's handling it well enough to ride it out or if we need to bring her back in. It'll make me feel a lot better.
So we'll just keep praying that she's really doing as well as they say she is and that we can all be home together as a family again very soon!
Primary Children's Medical Center 8-23-11
Yesterday started a whole new list of things wrong with Miss K :o(. It wasn't an easy day for me, and today isn't going to be much easier until it's over and we've figured out what's going on.
First off I'd like to acknowledge the fact that I had a good nurse but she wouldn't listen to me at all. She just didn't get the Mommy thing at all, because she was the nurse and what she thought was what mattered in her mind, not what I thought at all. She obviously wasn't a mom, I don't think she was even married.
Miss K started her day acting like she had a tummy ache, being a mom I know what the tummy ache signs are in babies and I'm sure that's what she had. I told the nurse and asked her for something for it, Miss K wasn't eating well because of it and I was getting kind of worried. The nurse just looked at me and said she looked fine to her but she'd ask someone if there was something we could give her. She then proceeded to tell me she really didn't think Miss K needed anything, argh! Needless to say I never saw her put in a request for tummy medicine for her and we never got any. Then Miss K's diapers started to look kind of worrisome to me, I know what a newborn's poop is supposed to look like and Miss K's just didn't look right to me, not mustard colored but rusty colored. I showed the nurse the first diaper, she just took it and weighed it and threw it away, I was so mad! The next diaper was worse so I asked her to look at it again, she looked and shrugged then told me she would ask someone about it. I never saw or heard her ask anyone about the color. The third diaper looked like there was blood in it and it was mucusy, she took this one a little more seriously and charted it then when a Resident happened to come by she asked her about it, describing it as seedy and red, I had to correct her and tell the Doctor she is breastfed and it's supposed to be seedy but not rusty red like it was, the nurse glared at me and said she didn't like the seedy part about it, well I'm sorry but maybe you just haven't paid much attention to breastfed babies! The Resident made the nurse further mad when she agreed with me that if there was no formula in the diet then the seedy part was normal. Her diapers started to look a little better over night but it took a shift change and a new nurse who'd been a mom and a nurse for over 30 years to come in and send in a stool sample to see if there was blood in it. We also got a belly x-ray to make sure everything's moving right. So far the stool sample came back very positive for blood :o(. I haven't heard about the belly x-ray yet. Miss K also had a jerking problem yesterday, I was holding her and her right arm suddenly started jerking uncontrollably, kind of like a large muscle twitch. It went away fast but she did it again a few minutes later and her leg joined it as well. I told the nurse and she just shrugged! When it happened a few more times I happened to catch the nurse while it was happening so she could say she saw it, she still just shrugged her shoulders at me! So I started grabbing Residents and Attendees and pulling them in to ask about it, we finally got a Neurology consult. We're hoping it's just newborn twitching but they've put her on an anit-seizure medication just in case and they're going to do an EEG on her brain to make sure everything is OK. And to top things I noticed a nasty, red sore on Miss K's arm where an IV had been before. The nurse agreed with me and said it didn't look good but she waited a few hours before doing anything, the wound started to look worse and it was after hours for the "wound team" so we couldn't call anyone to come in to look at it anymore. This morning her arm looks much better, the new day nurse put some Neosporin on it and thinks it will be OK. But then we noticed a huge hard, red and angry looking bulge on the top of Miss K's left foot where another previous IV had been. So we're calling in the "wound team" after all to come in and look at that.
The Cardiology team just stopped in and delivered the bad news...they still don't like how often she's going into SVT, which is down to about 10 times in a 24 hour period but only lasting about 30 seconds each time. They are upping her Propanalol dose and holding off on putting her on the oral Amioderone one more day, ARGH! So that's pushed us back yet another day on going home. Looks like Saturday is our nearest projected home date :o(. I'm really getting sick of this, it's so frustrating.
I'm going to take a few minutes to have my cry about yesterday's stress and worries and today's new bad news and stressful worries...more updates as they come!
As for Roo's birthday...it's obviously going to have to happen here in Salt Lake. As of right now I think we're going to shoot for Friday afternoon/evening to party. We're most likely buying a cake instead of home made. And we're trying to decide if we will party here or if we'll go to a nice restaurant, it will depend on how Miss K is doing.
I have complained about the nurse's reaction to my observations yesterday to about every Doctor and nurse who's come to talk to me today. They finally sent the charge nurse in to talk to me, I let her know everything that concerned me yesterday, they said they'd advise and train the nurse better to acknowledge parents concerns immediately, even if it's only to make the parent feel better, which in my case they felt it should have been done because there really was a serious issue going on.
Throughout the day Miss K and I have had a lot of visits from various Doctors and technicians. We've been through 2 belly x-rays, the first one they decided looked normal but had what they thought was poop in the intestine (which is totally fine) but sometimes it's easy to mistake a bad bubble for poop so they sent them in for a second x-ray just barely, we'll find out soon what it says. Her poop is looking much better but they're still keeping an eye on her. They will continue to do periodic belly x-rays until they're satisfied that she's fine. They are encouraged by her good looking poop though. We've also been through an EEG to check her brain waives and see if she's having seizures, this came back mostly normal with a slight "variance" in it that suggests normal newborn brain activity but could be something worrisome :o(. So they're keeping her on the seizure medication called Keppra, they want an MRI but can't do one until she's got her SVT completely under control, which could be a few weeks or months, they aren't in a hurry as long as she's on the Keppra and responding well.
So Miss K now has a team of cardiologists and a team of neurologists working with her as well as a team of regular PICU pediatricians. It's getting confusing as to who's with who and what they all do.
She has been doing pretty good with her SVT today, she's only had 3 or 4 episodes of it, but 2 of them lasted 20-25 minutes and the last one lasted over 30 minutes. Two of them have also worried the nurse into a panic at one point because she had a bad rhythm with it. The 30 minute one took some work to get her out of it, she wouldn't convert back to normal rhythm on her own so I had to blow in her face and make her catch her breath, thankfully this worked and prevented them from using Adenosine pushed through her IV like they've done before. They are going to be watching her more closely now.
It's going to be a long week this week. I feel like Daddy needs to be with Roo more than me but I so want to be selfish and make him come be here, lol! It's so hard being here alone through this.
First off I'd like to acknowledge the fact that I had a good nurse but she wouldn't listen to me at all. She just didn't get the Mommy thing at all, because she was the nurse and what she thought was what mattered in her mind, not what I thought at all. She obviously wasn't a mom, I don't think she was even married.
Miss K started her day acting like she had a tummy ache, being a mom I know what the tummy ache signs are in babies and I'm sure that's what she had. I told the nurse and asked her for something for it, Miss K wasn't eating well because of it and I was getting kind of worried. The nurse just looked at me and said she looked fine to her but she'd ask someone if there was something we could give her. She then proceeded to tell me she really didn't think Miss K needed anything, argh! Needless to say I never saw her put in a request for tummy medicine for her and we never got any. Then Miss K's diapers started to look kind of worrisome to me, I know what a newborn's poop is supposed to look like and Miss K's just didn't look right to me, not mustard colored but rusty colored. I showed the nurse the first diaper, she just took it and weighed it and threw it away, I was so mad! The next diaper was worse so I asked her to look at it again, she looked and shrugged then told me she would ask someone about it. I never saw or heard her ask anyone about the color. The third diaper looked like there was blood in it and it was mucusy, she took this one a little more seriously and charted it then when a Resident happened to come by she asked her about it, describing it as seedy and red, I had to correct her and tell the Doctor she is breastfed and it's supposed to be seedy but not rusty red like it was, the nurse glared at me and said she didn't like the seedy part about it, well I'm sorry but maybe you just haven't paid much attention to breastfed babies! The Resident made the nurse further mad when she agreed with me that if there was no formula in the diet then the seedy part was normal. Her diapers started to look a little better over night but it took a shift change and a new nurse who'd been a mom and a nurse for over 30 years to come in and send in a stool sample to see if there was blood in it. We also got a belly x-ray to make sure everything's moving right. So far the stool sample came back very positive for blood :o(. I haven't heard about the belly x-ray yet. Miss K also had a jerking problem yesterday, I was holding her and her right arm suddenly started jerking uncontrollably, kind of like a large muscle twitch. It went away fast but she did it again a few minutes later and her leg joined it as well. I told the nurse and she just shrugged! When it happened a few more times I happened to catch the nurse while it was happening so she could say she saw it, she still just shrugged her shoulders at me! So I started grabbing Residents and Attendees and pulling them in to ask about it, we finally got a Neurology consult. We're hoping it's just newborn twitching but they've put her on an anit-seizure medication just in case and they're going to do an EEG on her brain to make sure everything is OK. And to top things I noticed a nasty, red sore on Miss K's arm where an IV had been before. The nurse agreed with me and said it didn't look good but she waited a few hours before doing anything, the wound started to look worse and it was after hours for the "wound team" so we couldn't call anyone to come in to look at it anymore. This morning her arm looks much better, the new day nurse put some Neosporin on it and thinks it will be OK. But then we noticed a huge hard, red and angry looking bulge on the top of Miss K's left foot where another previous IV had been. So we're calling in the "wound team" after all to come in and look at that.
The Cardiology team just stopped in and delivered the bad news...they still don't like how often she's going into SVT, which is down to about 10 times in a 24 hour period but only lasting about 30 seconds each time. They are upping her Propanalol dose and holding off on putting her on the oral Amioderone one more day, ARGH! So that's pushed us back yet another day on going home. Looks like Saturday is our nearest projected home date :o(. I'm really getting sick of this, it's so frustrating.
I'm going to take a few minutes to have my cry about yesterday's stress and worries and today's new bad news and stressful worries...more updates as they come!
As for Roo's birthday...it's obviously going to have to happen here in Salt Lake. As of right now I think we're going to shoot for Friday afternoon/evening to party. We're most likely buying a cake instead of home made. And we're trying to decide if we will party here or if we'll go to a nice restaurant, it will depend on how Miss K is doing.
8-23-11 A New Report:
After my last update the whole PICU team of Doctors came for rounds and talked about Miss K. They are concerned about the bloody stools, as am I. But they are taking large measures, they don't want to miss anything with her having SVT already. It could be caused by the SVT, not enough blood or too much blood getting to her bowls making them sluff off into her poop :o(. They are going to have us keep going as usual for now but if the blood doesn't go away then they're going to force me to stop feeding her :o(, I'm not sure what this means, I don't know if they're thinking IV fluids only, feeding tube or formula from a bottle. No matter what it is they're thinking I'm praying hard it's not going to happen, I can't stand the thought of them taking away the one thing I can do for my baby. I'm having a hard time with this. I have complained about the nurse's reaction to my observations yesterday to about every Doctor and nurse who's come to talk to me today. They finally sent the charge nurse in to talk to me, I let her know everything that concerned me yesterday, they said they'd advise and train the nurse better to acknowledge parents concerns immediately, even if it's only to make the parent feel better, which in my case they felt it should have been done because there really was a serious issue going on.
Throughout the day Miss K and I have had a lot of visits from various Doctors and technicians. We've been through 2 belly x-rays, the first one they decided looked normal but had what they thought was poop in the intestine (which is totally fine) but sometimes it's easy to mistake a bad bubble for poop so they sent them in for a second x-ray just barely, we'll find out soon what it says. Her poop is looking much better but they're still keeping an eye on her. They will continue to do periodic belly x-rays until they're satisfied that she's fine. They are encouraged by her good looking poop though. We've also been through an EEG to check her brain waives and see if she's having seizures, this came back mostly normal with a slight "variance" in it that suggests normal newborn brain activity but could be something worrisome :o(. So they're keeping her on the seizure medication called Keppra, they want an MRI but can't do one until she's got her SVT completely under control, which could be a few weeks or months, they aren't in a hurry as long as she's on the Keppra and responding well.
So Miss K now has a team of cardiologists and a team of neurologists working with her as well as a team of regular PICU pediatricians. It's getting confusing as to who's with who and what they all do.
She has been doing pretty good with her SVT today, she's only had 3 or 4 episodes of it, but 2 of them lasted 20-25 minutes and the last one lasted over 30 minutes. Two of them have also worried the nurse into a panic at one point because she had a bad rhythm with it. The 30 minute one took some work to get her out of it, she wouldn't convert back to normal rhythm on her own so I had to blow in her face and make her catch her breath, thankfully this worked and prevented them from using Adenosine pushed through her IV like they've done before. They are going to be watching her more closely now.
It's going to be a long week this week. I feel like Daddy needs to be with Roo more than me but I so want to be selfish and make him come be here, lol! It's so hard being here alone through this.
Primary Children's Medical Center 8-18-11
Tuesday, after my last update, Miss K had quite a few more episodes of SVT. Somehow Daddy was the only one able to break her out of it about 3 times before they could consider using ice (See Physical Maneuvers). He's such an awesome Daddy. The first SVT episode she had after Daddy got back to the hospital he leaned over her bassinet and talked really softly and quietly in her ear, pretty much cussing her out and letting her know she had to come out of it on her own, his own little Daddy talk, this worked awesome, she came out of SVT without any intervention. The second and third times that she went into SVT Daddy blew in her face multiple times to make her catch her breath, I tried doing it as well but for some reason only his breath worked, she came out of SVT on her own again. Then the "Daddy method" as I began to call it quit working and she wouldn't come out of it, we had to resort to the ice suffocation. In case I never explained that yet: They fill a bag with ice and place it over her whole face pretty much smothering her for 5 seconds to make her gasp and hold her breath, thus restarting her heart and hopefully getting out of SVT this is very heartbreaking and scary for a mom to watch, I cried every time. The first ice treatment worked like it had been before, but it took an hour to work. The second time we had to do it twice, then she went into SVT a third time and we tried the ice twice without success, nothing would get her out of it so they brought a team in and gave her a shot of Adenosine, which stops her heart for a split second and makes it restart into normal rhythm, this worked and she was OK for a few minutes then she went right back into SVT. She wouldn't come out of SVT this last time, we tried every method without success so her cardiologist sent her to PICU and put her on an IV drip of a type of beta blocker. We kept her on the oral Propanolol as well. We had a very long and sleepless night Tuesday night trying to get her out of SVT and keep her calm and happy.
We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.
Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.
Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.
Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.
So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.
Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...
So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.
Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!
We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!
On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.
I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.
I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries! We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.
I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.
As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.
Again, we are so thankful for all the love and support from all of you!
We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.
Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.
Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.
Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.
So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.
Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...
So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.
Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!
We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!
8-18-11 A New Report:
Miss K has been very frustrating today. We started her on that new medication this morning as I reported before. She only stayed out of SVT for 3 hours then went back in. She then started jumping in and out of it sporadically, literally one minute she would be in it and the next out, for about an hour or two. She got herself out of SVT and stayed out for about half an hour then went back in again and continued with the sporadic in and out again for about another hour. At about 5:00 she came out again and stayed out for another half hour and is currently in and out of it again. We had to up her dose of the Amiodarone drip, it seems to have worked a little bit. They checked her potassium levels earlier today and they were too high so we're currently getting ready to draw more blood, yet again (poor baby!), and have it checked again, it really needs to go down. Her blood pressure is getting a little low as well, her nurse isn't comfortable with how low it's getting so she's sending in blood for 2 other tests as well to make sure Miss K is still OK. They've just upped her dose of Amiodarone drip yet again, she just won't stop going in and out of SVT. She's been a very sleepy little girl today, this whole in and out of SVT thing is surely wearing her out. She has had a few minutes here and there of awake and alert time but definitely not half as much as she had yesterday. She's slowed down on the eating today as well. And since she's not eating too well today I'm usually left with pumping at least one side after she finishes eating. Since we're going to be here a while I've decided to have Daddy bring some bottles back with him tonight and we're going to start trying to get her to take one well, if she will then I will get a chance to leave the hospital here and there to keep from going insane. On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.
I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.
I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries! We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.
I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.
As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.
Again, we are so thankful for all the love and support from all of you!
Bad News
Our first day home with Miss K was great, we took her to see her pediatrician for the first time (I deliver my babies out of town so we use an on-call pediatrician at birth and then take our babies to our regular pediatrician in our home town within days of bringing them home) she was doing great and still steadily gaining weight. We updated him on her birth story so he'd know what to be concerned about and what to watch for as she grows. Her heart was beating steady and normal every time we checked her and at her Doctor's check-up.
Day two home we started to feel a little concerned, we'd been listening to her heart and thought it was fine but it was beating quite fast, though we couldn't tell ourselves if it was too fast or normal.
Day three home we were really concerned. Miss K had become slightly lethargic and was nearly impossible to wake up for feedings. When she would wake up to eat she would only eat a few minutes then go back to sleep, no amount of jostling would wake her until the next feeding time. We had been listening to hear heart more often and it was getting harder to count the beats. The last time we listened to her we tried to count it out with a stopwatch but couldn't keep up with it, we were guessing it was over 200 BPM but we weren't sure exactly how fast it was really going so I suggested we take her to the after hours clinic and simply ask a nurse to listen for us without checking us in. The nurse at the clinic hooked Miss K up to a heart monitor and we were told her heart was beating at 280 BPM, they rushed us to the local ER. Our ER in this small town is not equipped for much, they are especially not equipped for infants and tiny children. They were scared to death to hear a heart beat that fast in an infant, this was something they had never seen before in their hospital. Of course they panicked, thus further panicking my husband and I. All I could do through it all was cry hysterically. The on call Doctor was in a panic, we told him the name of Miss K's assigned cardiologist and he tried to contact him, but was unable to for unknown reasons. The hospital we delivered in suggested they give her Adenosine. The on-call Doctor refused unless the situation worsened, they were scared to death to give that shot to an infant. After much consideration everyone decided Miss K was quite stable considering her condition so they suggested we take her to Primary Children's Medical Center (45 minutes away) via ambulance.
3 Days After Initial Hospital (NICU) Release 8-16-11:
Little Miss K was rushed to Primary Children's Medical Center last night with what they call SVT, if you want to know the meaning click here, basically her heart rate should always be at about 120-140 beats per minute but she goes into a rhythm that is at 280+ beats per minute and until this morning she wasn't coming out of it on her own.
When we came to PCMC they gave her a shot called Adenosine at a low dose, this is what they gave her when she was first born and it worked, it's supposed to stop her heart for a split second and restart it at a normal rhythm. Last night the first dose did not work so they gave her a break and then issued a higher dose, which did not work either. Then they started her on a prescription drug that she'll have to keep taking until 6 or 12 months old, Propanalol, and then tried another shot of Adenosine, this worked and she calmed down and relaxed for quite a few hours.
It was a very long night spent feeding her, cuddling her, and praying. Daddy had to go back to work this morning so he left me at 6:00am after a few hours of sleep for himself. During the night Miss K went back into SVT twice and they had to suffocate her with a bag of ice to bring her heart rate back down, for some reason this works wonders (See Physical Maneuvers). After Daddy left she did it again, this time she came out of it on her own after 9 minutes, it was a huge relief. She then did it 2 more times where she came out of it on her own after 20 minutes, very scary and heartbreaking to watch. She did it again around 11:30am and came out of it after only 2 minutes. Then she went back into SVT again around 3:00pm, this time she had to have the ice treatment again to bring it down. It's really heartbreaking to watch, as a mom I want to scream at them to leave her alone and take the ice bag away. She's had 2 full doses of the Propanalol now, they want her to have 5 before she can leave here. She only gets it every 8 hours so we're going to be here in the hospital until Thursday morning at the latest.
The plan when we go home will be to keep giving her Propanalol and monitoring her, they will send a Holter Monitor home with us for about 48 hours then we will send it back to them to analyze the results and we'll go from there.
Right now Daddy is out cold on the "bed" they have in her room, I am ready to join him. Miss K is worn out beyond exhaustion and pale as can be. She has a hard time eating very long so I'm having to pump every feeding to keep my milk up. She's asleep most of the time, the only time she wakes is to start eating only to fall asleep again or to go into SVT.
We're praying for a speedy recovery, every dose of Propanalol is supposed to make it harder and harder for her heart to jump into SVT again.
Day two home we started to feel a little concerned, we'd been listening to her heart and thought it was fine but it was beating quite fast, though we couldn't tell ourselves if it was too fast or normal.
Day three home we were really concerned. Miss K had become slightly lethargic and was nearly impossible to wake up for feedings. When she would wake up to eat she would only eat a few minutes then go back to sleep, no amount of jostling would wake her until the next feeding time. We had been listening to hear heart more often and it was getting harder to count the beats. The last time we listened to her we tried to count it out with a stopwatch but couldn't keep up with it, we were guessing it was over 200 BPM but we weren't sure exactly how fast it was really going so I suggested we take her to the after hours clinic and simply ask a nurse to listen for us without checking us in. The nurse at the clinic hooked Miss K up to a heart monitor and we were told her heart was beating at 280 BPM, they rushed us to the local ER. Our ER in this small town is not equipped for much, they are especially not equipped for infants and tiny children. They were scared to death to hear a heart beat that fast in an infant, this was something they had never seen before in their hospital. Of course they panicked, thus further panicking my husband and I. All I could do through it all was cry hysterically. The on call Doctor was in a panic, we told him the name of Miss K's assigned cardiologist and he tried to contact him, but was unable to for unknown reasons. The hospital we delivered in suggested they give her Adenosine. The on-call Doctor refused unless the situation worsened, they were scared to death to give that shot to an infant. After much consideration everyone decided Miss K was quite stable considering her condition so they suggested we take her to Primary Children's Medical Center (45 minutes away) via ambulance.
3 Days After Initial Hospital (NICU) Release 8-16-11:
Little Miss K was rushed to Primary Children's Medical Center last night with what they call SVT, if you want to know the meaning click here, basically her heart rate should always be at about 120-140 beats per minute but she goes into a rhythm that is at 280+ beats per minute and until this morning she wasn't coming out of it on her own.
When we came to PCMC they gave her a shot called Adenosine at a low dose, this is what they gave her when she was first born and it worked, it's supposed to stop her heart for a split second and restart it at a normal rhythm. Last night the first dose did not work so they gave her a break and then issued a higher dose, which did not work either. Then they started her on a prescription drug that she'll have to keep taking until 6 or 12 months old, Propanalol, and then tried another shot of Adenosine, this worked and she calmed down and relaxed for quite a few hours.
It was a very long night spent feeding her, cuddling her, and praying. Daddy had to go back to work this morning so he left me at 6:00am after a few hours of sleep for himself. During the night Miss K went back into SVT twice and they had to suffocate her with a bag of ice to bring her heart rate back down, for some reason this works wonders (See Physical Maneuvers). After Daddy left she did it again, this time she came out of it on her own after 9 minutes, it was a huge relief. She then did it 2 more times where she came out of it on her own after 20 minutes, very scary and heartbreaking to watch. She did it again around 11:30am and came out of it after only 2 minutes. Then she went back into SVT again around 3:00pm, this time she had to have the ice treatment again to bring it down. It's really heartbreaking to watch, as a mom I want to scream at them to leave her alone and take the ice bag away. She's had 2 full doses of the Propanalol now, they want her to have 5 before she can leave here. She only gets it every 8 hours so we're going to be here in the hospital until Thursday morning at the latest.
The plan when we go home will be to keep giving her Propanalol and monitoring her, they will send a Holter Monitor home with us for about 48 hours then we will send it back to them to analyze the results and we'll go from there.
Right now Daddy is out cold on the "bed" they have in her room, I am ready to join him. Miss K is worn out beyond exhaustion and pale as can be. She has a hard time eating very long so I'm having to pump every feeding to keep my milk up. She's asleep most of the time, the only time she wakes is to start eating only to fall asleep again or to go into SVT.
We're praying for a speedy recovery, every dose of Propanalol is supposed to make it harder and harder for her heart to jump into SVT again.
The Beginning
Birth 8-8-11:
Our story begins August 8, 2011. Our baby girl (who we'll call Miss K throughout this blog) was due to arrive via scheduled c-section on Wednesday August 10, 2011. No medical reason for c-section, just the simple fact that my first baby was delivered that way when my cervix wouldn't open and I never went into labor. Monday August 8 I went to my last routine check up, everything was great just as it had been the whole pregnancy. I arrived home a few hours later after a some quick last minute shopping before baby arrived. After a short nap with our son I woke up to my water breaking, something I didn't plan on considering I had never experienced it with my first baby. I called my doctor who suggested I head to the hospital as soon as I could. When my hubby got home from work we packed up and headed out, calling my parents on the way so they could meet us there and take our son home with them. We arrived at the hospital at 7:30pm and got all checked in, they did some tests on the fluid leaking to see if it was amniotic, the first test was positive but the second was questionable, while they were debating about the second test my water seriously broke, for sure no question, lol!
When my water broke I had a strong contraction and baby's heartbeat skyrocketed, the nurse came in to give me my IV and noticed it, it was so fast the monitor couldn't keep up with it, it was actually halfing the beats it was so fast. Neither nurse could count it out accurately, they were guessing it was over 200 beats per minute.
The next thing I knew they had the on call OB rushing in to hear the heart beat, he really didn't like it. Within seconds the Anesthesiologist was in my room and they were pumping my IV full of all the necessary stuff for surgery. They wheeled me back to the OR and placed my epidural in there. The OB started prepping me and my own OB barely walked in to help just before they started cutting.
Baby sister was born via C-section at 9:25pm. She cried for us. Then they whisked her off to the NICU. Her heartbeat was still too fast, but it had slowed down a little. While in NICU she started grunting while breathing and her heart rate wouldn't slow. They had to give her Adenosine to slow the heartbeat and then checked her lungs to find that her sacks around the lungs weren't expanding on their own. They had to hook her up to a CPAP machine (a breathing machine that gives the effect of putting your head out the window of a fast moving car, this was to give her lungs the extra boost to inflate like needed). They placed an IV to keep fluids and sugars in her and kept an eye on her.
I got to see the baby for a brief second before they rushed her off. As of right now I have not held her yet. It's been rough for me.
At 12:00am the NICU was able to take the baby off all the machines and tubes, except IV of course, and she did great. As of 6:00am she still hadn't needed to be hooked up again and was breathing on her own just fine. Her heart rate is still a concern though and they have called in a Pediatric Cardiologist to come in for a consult about long term care for her.
We are praying that it's nothing serious and that we will be able to feed her today and take her home when I am released on Friday.
Daddy is having about as hard a time as I am though he gets to go down to the NICU and see her whenever he wants to while I am bedridden and waiting on nurses to get me up and moving enough to go down there. Daddy has held her a few times and seen her quite often without tubes hanging all over her.
I'm sitting here waiting as patiently as possible to get to go down and hold her myself for the first time.
She weighed 5 pounds 12 ounces and is 19 inches long. Quite a tiny little thing for as big as we all thought she was going to be! But she doesn't look scrawny like Roo did, in fact she looks like she does have chunk potential :o). She's adorable with a head full of long, dark hair. She's a sweetie and the nurses say she doesn't cry much and handles all the poking and prodding very well for a newborn.
Diagnosis 8-11-11:
Miss K is doing much better. We talked to the cardiologist and he said what happened is she has an extra spark in her heart, kind of a tendon or something, that made it beat faster than it should. The Adenosine they gave her last night at birth to slow her heartbeat down broke that spark. It's not a permanent fix though, it's possible she could have a re-occurance and need to go to the ER for the shot again either in the near future or not until she's older. She could very possibly outgrow this by her first birthday and not have to worry about it again, they may have to put her on a daily medication for this until she's a year old but they're not sure yet. There's also a slight possibility she could have it happen again when she's in her teens. So many "if's" here, not really what we want to hear. But right now she's been given a temporary bill of good health and is doing great. I have been breast feeding her today, she's doing great, we've had 2 great feedings and the nursing staff is impressed with her. They are going to remove her IV in the next few hours because her hand is swelling up from it and instead of placing another one they think she's great to go without so that's awesome news :o). We will be given training on how to check her pulse and heartbeat at home and have been instructed to check it at least twice a day during diaper changes from here on out. They have been awesome to notify our pediatrician of these issues and saved me the trouble of having to remember everything and repeat it.
We're excited to say we most likely will be bringing her home with us when I get to leave Friday morning. Keep us in your prayers.
Our story begins August 8, 2011. Our baby girl (who we'll call Miss K throughout this blog) was due to arrive via scheduled c-section on Wednesday August 10, 2011. No medical reason for c-section, just the simple fact that my first baby was delivered that way when my cervix wouldn't open and I never went into labor. Monday August 8 I went to my last routine check up, everything was great just as it had been the whole pregnancy. I arrived home a few hours later after a some quick last minute shopping before baby arrived. After a short nap with our son I woke up to my water breaking, something I didn't plan on considering I had never experienced it with my first baby. I called my doctor who suggested I head to the hospital as soon as I could. When my hubby got home from work we packed up and headed out, calling my parents on the way so they could meet us there and take our son home with them. We arrived at the hospital at 7:30pm and got all checked in, they did some tests on the fluid leaking to see if it was amniotic, the first test was positive but the second was questionable, while they were debating about the second test my water seriously broke, for sure no question, lol!
When my water broke I had a strong contraction and baby's heartbeat skyrocketed, the nurse came in to give me my IV and noticed it, it was so fast the monitor couldn't keep up with it, it was actually halfing the beats it was so fast. Neither nurse could count it out accurately, they were guessing it was over 200 beats per minute.
The next thing I knew they had the on call OB rushing in to hear the heart beat, he really didn't like it. Within seconds the Anesthesiologist was in my room and they were pumping my IV full of all the necessary stuff for surgery. They wheeled me back to the OR and placed my epidural in there. The OB started prepping me and my own OB barely walked in to help just before they started cutting.
Baby sister was born via C-section at 9:25pm. She cried for us. Then they whisked her off to the NICU. Her heartbeat was still too fast, but it had slowed down a little. While in NICU she started grunting while breathing and her heart rate wouldn't slow. They had to give her Adenosine to slow the heartbeat and then checked her lungs to find that her sacks around the lungs weren't expanding on their own. They had to hook her up to a CPAP machine (a breathing machine that gives the effect of putting your head out the window of a fast moving car, this was to give her lungs the extra boost to inflate like needed). They placed an IV to keep fluids and sugars in her and kept an eye on her.
I got to see the baby for a brief second before they rushed her off. As of right now I have not held her yet. It's been rough for me.
At 12:00am the NICU was able to take the baby off all the machines and tubes, except IV of course, and she did great. As of 6:00am she still hadn't needed to be hooked up again and was breathing on her own just fine. Her heart rate is still a concern though and they have called in a Pediatric Cardiologist to come in for a consult about long term care for her.
We are praying that it's nothing serious and that we will be able to feed her today and take her home when I am released on Friday.
Daddy is having about as hard a time as I am though he gets to go down to the NICU and see her whenever he wants to while I am bedridden and waiting on nurses to get me up and moving enough to go down there. Daddy has held her a few times and seen her quite often without tubes hanging all over her.
I'm sitting here waiting as patiently as possible to get to go down and hold her myself for the first time.
She weighed 5 pounds 12 ounces and is 19 inches long. Quite a tiny little thing for as big as we all thought she was going to be! But she doesn't look scrawny like Roo did, in fact she looks like she does have chunk potential :o). She's adorable with a head full of long, dark hair. She's a sweetie and the nurses say she doesn't cry much and handles all the poking and prodding very well for a newborn.
Diagnosis 8-11-11:
We're excited to say we most likely will be bringing her home with us when I get to leave Friday morning. Keep us in your prayers.
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