We saw the Neurologist today. I didn't recognize the name, and at first didn't know her face but then she said "Hi! It's nice to see you guys again!", uuuummmmm, "again?" I said, I was so confused! Apparently this Neurologist is the one who was on Miss K's case in Primary Children's during her long stay as an infant. After talking for a while I started to recognize her face and remembered her just a tiny bit.
So, the news hasn't changed much. Yes Miss K is likely having migraines. At first it was a "no" we don't need to do any testing unless Mom wants it, and my answer was "no". She was just as baffled about the episode in July as the rest of us are but had done her research in the last week knowing Miss K was coming in.
We got to talking and she asked more and more in depth questions about Miss K and her overall personality.
I talked about her eating issues...Miss K doesn't eat. At meal times she constantly moves around until we give up and buckle her into her booster seat, she doesn't put any food into her mouth, we have to instruct her through the whole eating process and it takes an hour minimum to get a somewhat OK amount of food into her, what do I mean "instruct?", exactly that, every step: "(Miss K) pick up some food, now put it in your mouth NOW", all said VERY slowly, VERY pronounced, each word said very clearly and separately. If we don't instruct her she will sit there and never touch her food, no matter how hungry she is. It's clearly not for attention as we've tried not doing it and she'll go days without more than a bite to eat each day, we've tried giving all 3 kids the same amount of positive attention at the table, keeping the negative out of the picture, so that she doesn't feel we're not paying attention to her enough, we've tried excusing everyone from the table and leaving her there longer without anyone to distract and she touches nothing on her plate for up to 30 minutes before we give up on her and let her get down as well. She's not a snacker, she never has been, no matter how hungry she is she doesn't snack.
I talked about her slow thought process...Miss K doesn't understand most directions and the words "no" and "stop" when she's in trouble do absolutely nothing, no amount of loving guidance gets us anywhere with her, every love and logic thing we've tried has gone past her without even pausing, when we need to get the point across it takes 4-5 times of telling her "no" or "stop" until we get into her face and make her look us in the eye and VERY firmly, showing how upset we are with facial expression, telling her "NO!" or "STOP!" before we suddenly see a light bulb turn on in her eyes like "Ooooohhhh! Mommy said no!" and then she quits. Every instruction she is given has to be done very slowly with her looking us directly in the eye and even then she doesn't get half of it. She's very slow to process things she's told.
I talked about her speech...Miss K is very hard to understand. We understand her 21 month old brother clear as a bell but not Miss K at all. Her Pediatrician said if 3/4 strangers can't understand her then she likely needs speech therapy. Well, more than 3/4 FAMILY can't understand her let alone strangers. Simple requests from her for some things are understandable to Mommy and Daddy but not clear at all. When she tries to tell us a story, like what she did at Preschool, it's a jabbering mess that she repeats over and over like a broken record until she thinks she's told a great story, not one word understood by the listener, even if it's Mommy or Daddy.
The Neurologist changed her mind about the testing after this conversation. She thinks we should do an MRI, she thinks it will help to know how Miss K's brain works. She said after the MRI we might do some cognitive testing as well.
The plan of action after today is for the Neurologist to contact our EP Cardiologist and get his permission to do an MRI, because it must be sedated and that can be dangerous for Miss K's heart rate so we have to make sure her EP Cardiologist feels comfortable with us having it done, if he does not clear it then we will just skip it, it won't hurt anything it will only help to have an MRI. Secondly we are putting Miss K on a daily anti migraine medication, it hasn't been prescribed yet only because, again, we have to clear it with her EP Cardiologist and the Pharmacist, make sure it will be OK to give with the Propranolol and Digoxin as well as be OK for her heart rate.
Also, while I'm updating, we have started the process for speech therapy. Some think age 3 is way too young to even worry about it. It's not too young, it's not too early, it's not pushing Miss K to learn faster than she needs to, blah, blah, blah, blah. The Dr.'s say she's OK if she doesn't qualify for it, or if I prefer she not take it, it's not important so, no, it's not the Dr.'s or any teacher trying to push it on me because kids are being pushed too hard too soon. I made the choice to see if she even qualifies for a number of reasons.
Number 1: I cannot understand her, half the time I cannot even guess what she's trying to say and it's frustrating for me to not be able to help her, it's frustrating for her to have nobody understand her. When she asks me for something..."Mommy, I want a shiosay"...I ask her to repeat it, and apologize for not understanding her, about 5 minutes later she's repeated it over and over again and can't say it any other way and I absolutely cannot figure out what she's asking for so I end up saying "I'm so sorry baby, I can't understand what you're asking for, I'm going to have to say 'no'", I want to cry, she wants to cry, and we end in a heap of hugs :(, this is a daily occurrence.
Number 2 I would rather her start speech therapy now while she's young and still learning, her way of speech is not ingrained in her brain, she's not quite used to it yet so it's not as hard to change it, and I'd much rather have her either done with speech therapy or already in it and getting help when she starts Kindergarten, I really don't want her to start Kindergarten having been only helped at home and be told that she needs speech therapy, which may or may not happen but I'd much rather avoid it however possible.
Number 3 speech therapy through the school is free, so why not do it if she qualifies? I won't pay for a private therapist, if she doesn't qualify we'll just keep working on it at home and try again next year if I feel she still needs it.
As of right now we've started the process with the hearing and vision specialist, she passed the hearing and vision part with flying colors, even impressed the specialist. The speech part she was right on the border, a score of 18 is allowable at age 3 and she got exactly 18, which doesn't always happen, as far as her understanding speech when being spoken to and following directions goes the specialist said she is behind developmentally and he said even though she scored an 18 she is really behind in her speech. From that round of testing the verdict was it can go either way, she has two more people to see and test with and those tests can easily tip the scale either direction. We see the next specialist for testing next week.
We have a lot going on. As soon as Miss K's EP Cardiologist is contacted we will know what to do and when. I'll keep updated as I can.
Showing posts with label Neurology. Show all posts
Showing posts with label Neurology. Show all posts
11.07.2014
9.16.2014
A Spontaneous Hypothermia Condition...
Episodic spontaneous hypothermia: a periodic childhood syndrome OR Spontaneous Periodic Hypothermia and Hyperhidrosis: a Possibly novel cerebral neurotransmitter disorder.
As if Miss K really needs something else going on with her. Seriously, why my little girl?! It's not fair. A few weeks back I posted about a crazy little episode (Find it Here) Miss K had, when she woke up cold as ice, body temperature of 94 degrees Fahrenheit, sweating profusely, heart rate in the low 50 BPM's, listless and pale, in a room that was at least 80 degrees Fahrenheit. Since then we've been to her EP Cardiologist who did not agree that her symptoms could be heart related in any way (Read Here), I was concerned and put on my Mommy Advocate, Research Guru Pants and started combing the internet. It took a few tries to find anything worth looking through, my first search of just symptoms brought up a whole list of websites to comb through, none of them making much sense to me, I changed the search to include her age and gender as well as all symptoms and just 3, that's right just THREE, websites came up, all 3 made more sense than I wanted them to. I found a diagnosis. But my diagnosis was, obviously, self diagnosed, as well as found on "Dr. Google", I'm not a fan of self diagnosing especially through Google searches so I printed everything I found to take to our Pediatrician a few days later when we went in for Miss K's 3 year Well Child Exam. I'm beginning to really like our new Pediatrician. He compliments me constantly on what a great advocate I am for my daughter, and he is always thanking me for being so informative, knowing so much about my daughter's condition, and for giving him new stuff to research (not that our old Pediatrician wasn't the same, he really was great about that stuff, I'm just happy to have found another one who is of the same mind). So when I brought the information about Spontaneous Hypothermia he did not reprimand or belittle me at all, he thanked me, he read what I gave him right then, and he decided we needed to research it further from a medical standpoint because it all made sense to him, he felt there was a strong likelihood that this was what Miss K had experienced.
Since that visit with our Pediatrician Miss K has complained of her head hurting a handful of times, and on those days she wakes up seemingly fine and full of energy but within an hour or so she goes downhill pretty quickly, telling me her head hurts and laying around on the couch all day, her naps on these days vary between unusually long and unusually short and miserable. We've had these types of days many, many times in the past 2 years but until recently she's never complained of anything hurting her, I assume this is only because she couldn't tell me what was hurting because she was too young to understand.
Yesterday I had to take Miss K in to the Pediatrician yet again, this time for what I suspected to be a Urinary Tract Infection or something along those lines. This is her second possible UTI :(. I was pleasantly surprised when the Doctor came in and immediately wished to talk to me about my findings about Spontaneous Hypothermia. He explained that this condition is Migraine related, it's a type of Migraine that typically affects children but can sometimes affect adults too. He explained that he's almost positive Miss K has a rare Migraine condition that we've never caught symptoms of before because she's taking Propranolol, which is not only a heart Arrhythmia and Blood Pressure medication but also a Migraine suppressant, he feels the Propranolol has been suppressing any and most signs of Migraine. When I told him about her past off days and her added complaint of her head hurting it only confirmed his suspicions. He has requested some medical journals not available to the public and is going to research them when they arrive, he also has a friend who is a Pediatric Neurologist, supposedly one of the top PN's in Utah, he highly recommends her, once he has researched the journals he plans to contact this PN and ask her opinion, he says he's more than sure she will wish to consult with me and Kimber as soon as possible and he suggests we do so. He talked about starting her on a Migraine medication immediately but I told him I'd rather not just yet, I want to be sure we're treating what we think we're treating before pushing yet another medication into her tiny little body. Though his main concern is the future, when we do finally get to take Miss K off of all her heart medications and have a, hopefully, successful catheter ablation done, we will be taking her off of the Propranolol, which is likely suppressing any Migraines she may be experiencing, this could mean trouble for our little girl, she could end up slammed with major, unbearable, Migraines due to being without the Propranolol. We all know this is not happening for at least 2 years but it will happen and we do not wish to put our daughter through such pain and discomfort :(.
To say I'm scared would be an understatement. This isn't right. It isn't fair. We'll keep updating as we know more.
As far as the main reason for our visit yesterday goes...that's another thing of bad news :(. Miss K had blood in her urine but all other in office tests came back negative so he's sending it in for a culture to see what is going on. She's obviously struggling, she's using the bathroom at least 15 times in a 30 minute period and started complaining her back hurt the day before, she cringes when she tries to potty and she barely dribbles each time :(. If the culture comes back with bacteria growth then we'll know we're treating a UTI or other infection, she is currently on an antibiotic to clear up whatever is bothering her. But if the culture grows nothing we will have to go back in and do another urine test, if there's still blood then there's something else going on that we'll need to investigate. And on top of all this she's constipated, which, if she does have a UTI, may be the cause of it, so she's been put back on a daily dose of Miralax, something we haven't had to do since she was just over a year old.
We can use all the prayers we can get right now. Our little girl is dealing with some tough issues :(.
2.07.2012
Home 2-7-2012 Miss K is 6 Months Old!
Miss K had her 6 month Cardiology check up today. It went well so say the least...I'll leave out the whole complaint of it taking us over 4 hours to get through the visit and back home again, let's just say: I thought taking her to the nearest center her cardiologist is in would take 1/2 the time as taking her to the usual place we go to, I was wrong it took the same amount of time, the only difference was we didn't spend 3 hours of our total time driving, but instead we spent that time waiting and waiting, not quite sure what's worse?
Anyway, on to today's results and decisions!
Miss K is doing great heart wise. Her little heart was beating at 128 BPM today at her appointment, which is great :o). My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).
We decided to keep her on the Amiodarone a little longer. As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to. So essentially it was my decision to keep her on it. Those 2 SVT episodes last month really scared me into it. But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY! We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is. I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes. If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it. As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.
Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).
All my concerns were considered. Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.
Miss K CAN take Tylenol, thank heavens! Now I can feel good about making her ear pain go away orally! The numbing ear drops do work but I feel Tylenol would work better.
Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine. I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).
I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow. Hopefully this is nothing to be concerned about but we'll see!
I asked about antibiotic interactions with her heart medications. The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol! But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.
I asked about her Thrush issues. This is something we've been battling with her for about 4 months now, it comes and goes. We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again. As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(. She should outgrow it in time. I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.
I asked about our method of giving Miss K her Propanolol. She LOVES to spit this one out and refuses to swallow it. One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason. I was only concerned that there may be an ingredient that could interact with her heart medications. The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!
My last, and biggest, concern was her Potassium levels. In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having. They put her on Keppra just in case and asked that we have an MRI done a few months later. When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system. Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention. It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off. I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about. When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work.
Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).
Anyway, on to today's results and decisions!
Miss K is doing great heart wise. Her little heart was beating at 128 BPM today at her appointment, which is great :o). My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).
We decided to keep her on the Amiodarone a little longer. As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to. So essentially it was my decision to keep her on it. Those 2 SVT episodes last month really scared me into it. But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY! We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is. I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes. If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it. As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.
Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).
All my concerns were considered. Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.
Miss K CAN take Tylenol, thank heavens! Now I can feel good about making her ear pain go away orally! The numbing ear drops do work but I feel Tylenol would work better.
Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine. I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).
I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow. Hopefully this is nothing to be concerned about but we'll see!
I asked about antibiotic interactions with her heart medications. The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol! But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.
I asked about her Thrush issues. This is something we've been battling with her for about 4 months now, it comes and goes. We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again. As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(. She should outgrow it in time. I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.
I asked about our method of giving Miss K her Propanolol. She LOVES to spit this one out and refuses to swallow it. One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason. I was only concerned that there may be an ingredient that could interact with her heart medications. The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!
My last, and biggest, concern was her Potassium levels. In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having. They put her on Keppra just in case and asked that we have an MRI done a few months later. When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system. Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention. It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off. I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about. When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work.
Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).
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 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.
12.27.2011
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.
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