12.28.2011
Home 12-6-11 Miss K is 4 Months Old
Miss K saw the Neurologist today: The Doctor agreed with me, she's been on the same dose of Keppra since she was 2 weeks old and has gained almost 8 pounds since then. They usually up the dose according to weight to keep seizure activity under control but Miss K's hasn't ever been upped and she's NEVER had any seizure activity since that day in the hospital. The Doctor and I agree that we've pretty much been giving her water these past few months and she wasn't having seizures and isn't going to have any. She's perfect in the neurology department :o). She passed every neurological test the Doctor did on her and we're going to skip the MRI because she doesn't need it :o). Miss K is no longer on the Keppra, as of today we've been told by the Doctor to stop giving it to her :o).
Home 11-8-11 Miss K is 3 Months Old
Miss K has been doing great. Her heart rate has stayed at a steady, normal pace for over a month now without any episodes of SVT. She really hates her medications though.
Since the day Miss K was officially put on the oral versions of Propanolol, Amiodarone and Keppra we have had to deal with getting her to take them without a problem, yeah right!
In the beginning we could put the syringes in the back of her mouth and just dribble the medications down her throat. The only issue we had was the Propanolol which is very strong and nasty tasting, she would choke on it and gag which would inevitably put her into SVT.
We started trying a MediBottle to administer her medications. At first it was extremely easy, she took the medications like milk, especially the Amiodarone. Frustrating enough this only lasted about a month though. At 3 months old Miss K decided she wouldn't suck on anything synthetic, except teething rings that is. No Pacifier, no Bottle and especially no MediBottle.
We tried putting the syringe in the back corner of her cheek like the Pharmacist suggested but our cute baby girl learned how to roll it forward and out of her mouth very quickly.
She also started vomiting while we were administering her medications thus forcing us to start over on the dose and try again. Not to mention the need to change her wet and soiled clothes as well as mine each time.
I finally discovered we could buy flavored syrup from the pharmacy. This has proven to be a great idea, she now takes the medications with a lot less gagging. But she still tries to spit it out.
The best technique we've found is to hold her with your hand supporting her neck. We tip her head way back and squeeze a small amount of the medication into her cheek at a time (about 0.5 ML each squirt). Then we hold her tilted back so she can't spit it out as easily, the medication is forced to stay at the back of her mouth. For some reason if she starts to gag we are able to stop her from vomiting about 60% of the time by squeezing her cheeks together (causing her mouth to make fishy lips) a few times, somehow this makes her forget what she was going to do and she ends up swallowing instead. Lately we've had a lot less stress giving her the medications by practicing this technique as well as flavoring the medications with the syrup.
Since the day Miss K was officially put on the oral versions of Propanolol, Amiodarone and Keppra we have had to deal with getting her to take them without a problem, yeah right!
In the beginning we could put the syringes in the back of her mouth and just dribble the medications down her throat. The only issue we had was the Propanolol which is very strong and nasty tasting, she would choke on it and gag which would inevitably put her into SVT.
We started trying a MediBottle to administer her medications. At first it was extremely easy, she took the medications like milk, especially the Amiodarone. Frustrating enough this only lasted about a month though. At 3 months old Miss K decided she wouldn't suck on anything synthetic, except teething rings that is. No Pacifier, no Bottle and especially no MediBottle.
We tried putting the syringe in the back corner of her cheek like the Pharmacist suggested but our cute baby girl learned how to roll it forward and out of her mouth very quickly.
She also started vomiting while we were administering her medications thus forcing us to start over on the dose and try again. Not to mention the need to change her wet and soiled clothes as well as mine each time.
I finally discovered we could buy flavored syrup from the pharmacy. This has proven to be a great idea, she now takes the medications with a lot less gagging. But she still tries to spit it out.
The best technique we've found is to hold her with your hand supporting her neck. We tip her head way back and squeeze a small amount of the medication into her cheek at a time (about 0.5 ML each squirt). Then we hold her tilted back so she can't spit it out as easily, the medication is forced to stay at the back of her mouth. For some reason if she starts to gag we are able to stop her from vomiting about 60% of the time by squeezing her cheeks together (causing her mouth to make fishy lips) a few times, somehow this makes her forget what she was going to do and she ends up swallowing instead. Lately we've had a lot less stress giving her the medications by practicing this technique as well as flavoring the medications with the syrup.
Home 9-21-11
Miss K had her first appointment with her Electro Physiologist Yesterday. He told me Miss K has PJRT: Permanent (or persistent) junctional reciprocating tachycardia, a type of SVT that's harder to treat :o(. She's now wearing a Holter Monitor until this afternoon. The Doctor wasn't happy about how often she's still going into SVT but is OK with it because we can get her out of it as long as she's not staying in it for more than a few minutes.
The frustrating news is this particular Doctor (Electro Physiologist) saw Miss K once while she was at PCMC and requested the Cardiology team consult with him about treatment before doing anything, I guess he's the only one in his field at PCMC and his field is actually the SVT specialty, regular Cardiologists don't know as much about SVT and they don't know the very best ways to treat it. Turns out they didn't consult with him though :o(. He is upset they put her on Amiodarone before trying 2 other medications that usually work and are way less toxic (See Side Effects). If they had consulted him he wouldn't have let them even suggest Amiodarone until the others didn't work. I guess once a baby is on Amiodarone they have to stay on it until the SVT is solved (either outgrown or by surgery) unless we want to spend 3 days to a week minimum in the hospital with her again having her weaned off of it and onto one of the other options :o(.
The verdict is: Miss K will be on Amiodarone and Propanalol together, like she is now, for a while. The Doctor's hoping she can be off of it at 6 months but he's not counting on it since she's got PJRT, he's betting it'll be more like 1-3 years and then he's almost sure she'll end up getting the ablation surgery around 3 years old because he doesn't think she'll be able to wait until she's 5 like they want her to. So that's the plan unless her heart changes, if she's having episodes more frequently and/or they're lasting 1 hour or more each time she has them then we will have to hospitalize her again and try new medication combos. So now we keep an eye on her and pray like crazy that she stays stable and stays out of the hospital. We're also praying she doesn't have any of the side effects of the Amiodarone. Next month she'll start seeing an Ophthalmologist for her eyes, we need to keep an eye on them to make sure she doesn't get any deposits on her retina from the Amiodarone (a possible side effect), if she does start getting deposits then we'll have to hospitalize and take her off of the Amiodarone, he's sure this won't happen but we need to be cautious. She'll also have her blood drawn and labs done about every 1-2 months to keep an eye on her Thyroid and Liver function, if either of those have issues we'll have to hospitalize and correct the issues if possible as well as get her off the Amiodarone.
There are so many scenarios and if's with this condition she has and the medication she's on! It's so frustrating.
Some good news though, she's getting used to the drowsiness effects of the medications and is awake and alert A LOT more often now :o). For a while there I thought we were going to have a little girl who just slept her first few years away, I'm so happy to see that she's starting to behave a lot more like a baby her age :o). She is also gaining weight...LIKE CRAZY!! two weeks ago at her 1 month check up she weighed 8 pounds, yesterday she weighed 9 pounds :o), and she's 21 3/4 inches long. You can literally feel the 9 pounds in her, lol, she's a chunker :o), I call her Pudgy, Daddy thinks it's mean but I think it's cute :o), I adore fat babies!
The frustrating news is this particular Doctor (Electro Physiologist) saw Miss K once while she was at PCMC and requested the Cardiology team consult with him about treatment before doing anything, I guess he's the only one in his field at PCMC and his field is actually the SVT specialty, regular Cardiologists don't know as much about SVT and they don't know the very best ways to treat it. Turns out they didn't consult with him though :o(. He is upset they put her on Amiodarone before trying 2 other medications that usually work and are way less toxic (See Side Effects). If they had consulted him he wouldn't have let them even suggest Amiodarone until the others didn't work. I guess once a baby is on Amiodarone they have to stay on it until the SVT is solved (either outgrown or by surgery) unless we want to spend 3 days to a week minimum in the hospital with her again having her weaned off of it and onto one of the other options :o(.
The verdict is: Miss K will be on Amiodarone and Propanalol together, like she is now, for a while. The Doctor's hoping she can be off of it at 6 months but he's not counting on it since she's got PJRT, he's betting it'll be more like 1-3 years and then he's almost sure she'll end up getting the ablation surgery around 3 years old because he doesn't think she'll be able to wait until she's 5 like they want her to. So that's the plan unless her heart changes, if she's having episodes more frequently and/or they're lasting 1 hour or more each time she has them then we will have to hospitalize her again and try new medication combos. So now we keep an eye on her and pray like crazy that she stays stable and stays out of the hospital. We're also praying she doesn't have any of the side effects of the Amiodarone. Next month she'll start seeing an Ophthalmologist for her eyes, we need to keep an eye on them to make sure she doesn't get any deposits on her retina from the Amiodarone (a possible side effect), if she does start getting deposits then we'll have to hospitalize and take her off of the Amiodarone, he's sure this won't happen but we need to be cautious. She'll also have her blood drawn and labs done about every 1-2 months to keep an eye on her Thyroid and Liver function, if either of those have issues we'll have to hospitalize and correct the issues if possible as well as get her off the Amiodarone.
There are so many scenarios and if's with this condition she has and the medication she's on! It's so frustrating.
Some good news though, she's getting used to the drowsiness effects of the medications and is awake and alert A LOT more often now :o). For a while there I thought we were going to have a little girl who just slept her first few years away, I'm so happy to see that she's starting to behave a lot more like a baby her age :o). She is also gaining weight...LIKE CRAZY!! two weeks ago at her 1 month check up she weighed 8 pounds, yesterday she weighed 9 pounds :o), and she's 21 3/4 inches long. You can literally feel the 9 pounds in her, lol, she's a chunker :o), I call her Pudgy, Daddy thinks it's mean but I think it's cute :o), I adore fat babies!
Home: 2 Weeks After Release From PCMC
We've almost been home two weeks and I have to say it's been a very long 2 weeks.
Miss K is doing great, we had a two day stretch this week that kind of worried us though. She started going into SVT more often, not going more than 10-12 hours between episodes sometimes less, and she started getting harder to convert out of it, twice we actually had to use the ice pack on her face (See Physical Maneuvers). But she's done really great otherwise. We're not sure why she was going into it so often out of the blue but we are sure she was hard to get out of it because she has allergies, just like the rest of us, and has had a slightly congested nose. I think the congestion was preventing her from taking a deep enough breath to come out of the SVT. She is awake and alert a lot more often, smiling more and more, and very strong, she can hold her head up very well and for long periods of time. She has such a cute little personality :o).
Miss K is doing great, we had a two day stretch this week that kind of worried us though. She started going into SVT more often, not going more than 10-12 hours between episodes sometimes less, and she started getting harder to convert out of it, twice we actually had to use the ice pack on her face (See Physical Maneuvers). But she's done really great otherwise. We're not sure why she was going into it so often out of the blue but we are sure she was hard to get out of it because she has allergies, just like the rest of us, and has had a slightly congested nose. I think the congestion was preventing her from taking a deep enough breath to come out of the SVT. She is awake and alert a lot more often, smiling more and more, and very strong, she can hold her head up very well and for long periods of time. She has such a cute little personality :o).
Home 9-6-11
Miss K is doing great, she's being a normal eat, sleep and poop newborn baby :o). We check her heart rate daily with a stethoscope, every diaper change and/or feeding. So far since we got home she's had 5 SVT episodes that we've caught and I've been able to get her out of it very easily by blowing in her face (See Physical Maneuvers). She's cute as can be and growing like a weed! She hates getting up to eat at 12:00am or 1:00am, if I didn't have to wake her up to give her Propanolol she'd probably sleep through the night, she's really cranky about getting up and will only eat for a few minutes before she's out again. She loves to get up at 4:00am or 5:00am to eat, this happens to be MY least favorite, she loves to be up and bright eyed ready to play after eating very well. She has quite a few awake and active moments throughout the day and they are usually for very long periods of time. She's trying to adjust to home life. It's tough having a big brother who needs attention as well after having Mommy all to herself for 3 weeks. She's going to keep us busy for a while, we have her well baby check tomorrow morning, an appointment with her assigned cardiologist Thursday morning, an appointment with the Electro Physiology clinic next week and upcoming appointments with Neurology and getting a sedated MRI done in the next few months with multiple Cardiology appointments spread out through the next 6 months or so.
Primary Children's Medical Center 9-1-11
This morning everyone has been trying to be really encouraging. They keep making it sound like we'll be released today. I'm not getting my hopes up, I refuse to be disappointed like yesterday. I haven't seen the Cardiology team yet today, it'll probably be a few more hours yet. My guess is they'll send us home tomorrow. Today's nurse told me they usually won't send SVT babies home until they have had absolutely no episodes for at least 48 hours, Miss K almost did that 2 days ago but now we're a little far from hitting that goal. I've been told they'll be sending Miss K home with a Holter Monitor. We'll find out how long she'll need to wear it when the team comes by.
Miss K is doing well, she's growing like a weed. Daddy hadn't seen her since Sunday when they came over yesterday for a visit. His first reaction was "is she getting fat?", lol! Yes, she is getting fat, she's gaining weight like crazy. As of Saturday she weighed 6 pounds 6 ounces, yesterday she weighed 7 pounds 3 ounces :o), I laughed because at 3 1/2 weeks old she's finally hit her big brother's birth weight, lol! She's definitely longer and she's much more alert for longer periods of time. It's fun to watch her just lay there and wiggle and look around exploring her world. It sucks that she has to do this in a hospital bassinet and not on a blanket on the floor. She hasn't gotten any tummy time in because it's nearly impossible here :o(. But we'll catch up when we get home :o).
Yesterday was nice, it ended up being better than I thought it would be. When I called Daddy to tell him we weren't coming home he immediately packed Roo up and drove down here to be with us. It was a nuthouse in this room but I LOVED it :o). When they left it was instantly very, very quiet, I didn't like it. I can't wait to be home in the crazy noise again :o).
So I'm going to keep hoping the news is good today :o). I'm not even thinking about going home today but I have high hopes that we'll leave here tomorrow :o). It would be nice to be home before Labor Day weekend starts so that we get Daddy home for 4 days with us before getting back to our normal life :o).
More updates in a few...I can hear the Cardiology team outside our door talking so there will be more to report very soon...
Well, it's official! We're going home TODAY! The discharge order has been placed, her prescriptions are being filled, and my mom is on her way to sit with Roo at home while Daddy comes down to get us, so now I'm really just waiting for our ride :o).
I am VERY nervous though. The SVT scares me. I hope and pray she's done having episodes now and we're through with it. But I kind of feel like we may have to deal with a few episodes at home occasionally. I'm not scared of getting her out of it, that's been quite simple with blowing in her face or using ice. But I am scared to death of her going into SVT and me not knowing it :o(. I'm going to be very paranoid. The Cardiology team teased me and told me we just needed to spoil her and not let her get upset or cry, lol! They know that's not really possible but they thought it was funny getting to tell a parent to spoil her child. I'm sure she'll be fine, but I'm still going to worry. It's going to be very hard not to hold her constantly and keep her calm indefinitely!
Roo will be very happy to have Mommy home.
I almost can't believe it's finally time, the Intern said that they don't usually send kids home who are still going into SVT but they feel like if they keep her longer she'll end up living here :o(, I hate hearing that, it scares me that we may end up coming back. But I feel with all my being that we're going home for good, we're done with staying in this place :o).
Miss K is doing well, she's growing like a weed. Daddy hadn't seen her since Sunday when they came over yesterday for a visit. His first reaction was "is she getting fat?", lol! Yes, she is getting fat, she's gaining weight like crazy. As of Saturday she weighed 6 pounds 6 ounces, yesterday she weighed 7 pounds 3 ounces :o), I laughed because at 3 1/2 weeks old she's finally hit her big brother's birth weight, lol! She's definitely longer and she's much more alert for longer periods of time. It's fun to watch her just lay there and wiggle and look around exploring her world. It sucks that she has to do this in a hospital bassinet and not on a blanket on the floor. She hasn't gotten any tummy time in because it's nearly impossible here :o(. But we'll catch up when we get home :o).
Yesterday was nice, it ended up being better than I thought it would be. When I called Daddy to tell him we weren't coming home he immediately packed Roo up and drove down here to be with us. It was a nuthouse in this room but I LOVED it :o). When they left it was instantly very, very quiet, I didn't like it. I can't wait to be home in the crazy noise again :o).
So I'm going to keep hoping the news is good today :o). I'm not even thinking about going home today but I have high hopes that we'll leave here tomorrow :o). It would be nice to be home before Labor Day weekend starts so that we get Daddy home for 4 days with us before getting back to our normal life :o).
More updates in a few...I can hear the Cardiology team outside our door talking so there will be more to report very soon...
Well, it's official! We're going home TODAY! The discharge order has been placed, her prescriptions are being filled, and my mom is on her way to sit with Roo at home while Daddy comes down to get us, so now I'm really just waiting for our ride :o).
I am VERY nervous though. The SVT scares me. I hope and pray she's done having episodes now and we're through with it. But I kind of feel like we may have to deal with a few episodes at home occasionally. I'm not scared of getting her out of it, that's been quite simple with blowing in her face or using ice. But I am scared to death of her going into SVT and me not knowing it :o(. I'm going to be very paranoid. The Cardiology team teased me and told me we just needed to spoil her and not let her get upset or cry, lol! They know that's not really possible but they thought it was funny getting to tell a parent to spoil her child. I'm sure she'll be fine, but I'm still going to worry. It's going to be very hard not to hold her constantly and keep her calm indefinitely!
Roo will be very happy to have Mommy home.
I almost can't believe it's finally time, the Intern said that they don't usually send kids home who are still going into SVT but they feel like if they keep her longer she'll end up living here :o(, I hate hearing that, it scares me that we may end up coming back. But I feel with all my being that we're going home for good, we're done with staying in this place :o).
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.
Primary Children's Medical Center 8-30-11
I just realized Miss K turned 3 weeks old yesterday, time has really flown! I can't believe we've spent that whole 3 weeks in the hospital, it doesn't even feel like we had those few short days at home, I can barely remember them :o(.
Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.
The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!
At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.
I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).
I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!
Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.
The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!
At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.
I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).
I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!
Primary Children's Medical Center 8-29-11
I had a huge info. overload this morning when a new Cardiologist came by to talk to me and see Miss K. Nobody really had informed us completely about what Miss K really has, all we've been told is she has SVT, hers is very stubborn, they didn't think anything in particular was causing it, and they thought she should outgrow it by her first birthday. Pretty basic. Today the new Cardiologist let me in on what's really going on with her. I just spent the last hour researching what he told me and looking into what we should expect.
So here's what's going on! She actually has a form of SVT called AVNRT. In laman's terms it means she has an extra circuit in her heart that is a slow pathway where her blood is being pushed through. They don't think she's going to outgrow it because it's been so stubborn to treat thus far. They're already planning to have her in the operating room after she turns 5 if she can wait that long, they will be doing a Catheter Ablation. In laman's terms they will be placing several flexible catheters into one of Miss K's main veins forcing them up towards her heart where they will use electrical impulses to induce the arrhythmia, and then ablate (destroy) the abnormal tissue that is causing it. They don't like to leave infants on Amiodarone for more than 3 months because it's highly toxic (yikes!) so when Miss K turns 3 months they will be taking her off of it and putting her on Flecainide. Then they get to hope the new drug works and will hold her off for a while. By the age of one she shouldn't need drugs, she should be OK and not be going into SVT but they're sure it will most likely come back by her 5th birthday, thus the reason for the Catheter Ablation plans.
But on a light note, Miss K is doing great, we've now officially gone 24 hours straight without SVT, YAY!
We are officially upstairs on the 3rd floor in regular care :o). We got moved from our first room to a new room this morning because they needed the room we were in for another patient so now the room we're in is tons bigger and has a bed and it's own bathroom and shower in it :o). Here's to better sleep the next few days and better Hygeine I hope!
We are bringing her Amiodarone dose down from 2 times a day to 1 time a day starting tomorrow. They will observe her on one dose until Wednesday evening or Thursday sometime and make sure she's OK with it then they'll release her!
So for sure there is light at the end of this tunnel, lol! She's doing great and we'll be going home, we actually have a day in mind now :o).
So here's what's going on! She actually has a form of SVT called AVNRT. In laman's terms it means she has an extra circuit in her heart that is a slow pathway where her blood is being pushed through. They don't think she's going to outgrow it because it's been so stubborn to treat thus far. They're already planning to have her in the operating room after she turns 5 if she can wait that long, they will be doing a Catheter Ablation. In laman's terms they will be placing several flexible catheters into one of Miss K's main veins forcing them up towards her heart where they will use electrical impulses to induce the arrhythmia, and then ablate (destroy) the abnormal tissue that is causing it. They don't like to leave infants on Amiodarone for more than 3 months because it's highly toxic (yikes!) so when Miss K turns 3 months they will be taking her off of it and putting her on Flecainide. Then they get to hope the new drug works and will hold her off for a while. By the age of one she shouldn't need drugs, she should be OK and not be going into SVT but they're sure it will most likely come back by her 5th birthday, thus the reason for the Catheter Ablation plans.
But on a light note, Miss K is doing great, we've now officially gone 24 hours straight without SVT, YAY!
We are officially upstairs on the 3rd floor in regular care :o). We got moved from our first room to a new room this morning because they needed the room we were in for another patient so now the room we're in is tons bigger and has a bed and it's own bathroom and shower in it :o). Here's to better sleep the next few days and better Hygeine I hope!
We are bringing her Amiodarone dose down from 2 times a day to 1 time a day starting tomorrow. They will observe her on one dose until Wednesday evening or Thursday sometime and make sure she's OK with it then they'll release her!
So for sure there is light at the end of this tunnel, lol! She's doing great and we'll be going home, we actually have a day in mind now :o).
12.27.2011
Primary Children's Medical Center 8-28-11
Last night we had 2 more episodes of SVT. The first was during her bath, she came out of it on her own within 12 minutes. The second was just after I put her to bed for the night, I went to step out and get myself ready for bed but as soon as I pulled the curtain to leave she went into SVT, she had gotten the hiccups, which are notorious for making her go into SVT. She didn't want to come out of it but I finally got her to by blowing in her face, it also made the hiccups go away :o), she was in it about 25 minutes or so. After that she calmed down and went to sleep. I was exhausted, I don't get much more than a few hours of sleep at night here. But Miss K was on a 2 hour feeding schedule last night, she usually goes 3-4 hours and only wakes up to eat because we wake her up, she was really good at waking herself up last night. So I got maybe 3 hours of sleep total. I'm beyond exhausted now, and naps here are pretty much impossible with all the Doctors and nurses popping in and out constantly.
I got to talk to the Cardiology team as well as the PICU pediatric team this morning, they came in together for the first time ever, which I immediately took as a good sign :o). The Cardiologist is very comfortable with keeping Miss K off the Amiodarone drip and moving her upstairs to regular care, YAY!!! The pediatricians are a little more skeptic but they realized it was the Cardiologists call not theirs since she's really not their patient and she's completely healthy and stable in every other way besides her heart :o). So the Resident said she would put in the order to have her discharged from PICU and moved upstairs :o). I'm so excited! The only thing that I didn't like hearing was that the Amiodarone drip stays in babies system for about 7 days and that in about 4-5 days is when we'll know if the oral Amiodarone is doing it's job taking over effectively. They did not say if that means they will be keeping her here for another 4-5 days or if they'll send her home to be monitored closely by me?? They did say that if she's great after that many days then they've done their job, if not then they'll up the dose of Amiodarone for her. So as of 2:00pm today we moved upstairs to the 3rd floor! I'm so happy to be out of PICU! But, our room is a lot smaller than the first 3rd floor room we got, and we don't have a bed in here, just the same old chair that makes into a very uncomfortable bed but it's much, much better than PICU!
Daddy bought a heart rate monitor and we will be hooking her up to it here while she's on their monitor so we can see if there's any differences in the way they work so we can work it out and know exactly what to do at home to read it correctly.
So we're on to the home stretch, I feel home calling my name and I'm sure I'll be able to answer it for good in a few days :o). Let's hope Miss K feels the same, lol!
I got to talk to the Cardiology team as well as the PICU pediatric team this morning, they came in together for the first time ever, which I immediately took as a good sign :o). The Cardiologist is very comfortable with keeping Miss K off the Amiodarone drip and moving her upstairs to regular care, YAY!!! The pediatricians are a little more skeptic but they realized it was the Cardiologists call not theirs since she's really not their patient and she's completely healthy and stable in every other way besides her heart :o). So the Resident said she would put in the order to have her discharged from PICU and moved upstairs :o). I'm so excited! The only thing that I didn't like hearing was that the Amiodarone drip stays in babies system for about 7 days and that in about 4-5 days is when we'll know if the oral Amiodarone is doing it's job taking over effectively. They did not say if that means they will be keeping her here for another 4-5 days or if they'll send her home to be monitored closely by me?? They did say that if she's great after that many days then they've done their job, if not then they'll up the dose of Amiodarone for her. So as of 2:00pm today we moved upstairs to the 3rd floor! I'm so happy to be out of PICU! But, our room is a lot smaller than the first 3rd floor room we got, and we don't have a bed in here, just the same old chair that makes into a very uncomfortable bed but it's much, much better than PICU!
Daddy bought a heart rate monitor and we will be hooking her up to it here while she's on their monitor so we can see if there's any differences in the way they work so we can work it out and know exactly what to do at home to read it correctly.
So we're on to the home stretch, I feel home calling my name and I'm sure I'll be able to answer it for good in a few days :o). Let's hope Miss K feels the same, lol!
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