Thursday, October 4, 2012
Fi was a trooper for the apt, and it seemed like it would be a quick one. Ms Sarah was almost done with Fi's echo when Dr Yang came in. He was saying how she's so lucky because things have remained pretty stable, aortic stenosis is still moderate, leak is still mild and her CoA repair is still looking great. After Ms Sarah finished Dr Yang looked over the images to make sure that everything he needed was there. Then he said, "well that's different from last time". He then personally redid the entire echo, my heart sank because I knew something was up.
I knew what it was too, as he went over the same part over and over. He was looking at the sub-aortic membrane. He said since her valve still looks okay we can come back in 6 months, at that point we'll schedule a trans-esophageal echo to get a better picture and decide if it's time for surgery. He wants to try to preserve her valve, so he sounded like the best plan will probably be surgery sooner than later.
As he was talking about is Laz had a ton of questions, but not me, because I know what it means, Fi's heart sister Jillian is having sub-AS surgery today. I've decided to refer to it the SFM (stupid f*ing membrane), even with surgery they often come back, saving the valve means another surgery for that down the line, or if the valve has to go at that time future surgeries to replace the valve.
You know the other shoe will drop eventually when you have a kid with a complex heart defect, but it still hurts just as bad when it does.
Thursday, May 3, 2012
As far as development goes she's pleased with how Fiona is doing. We have a couple things to work on, but nothing major. She thinks preschool is going to be great for Fi. One of my concerns was her skin picking, Dr E told me it's a losing battle and even if she gets and infection from doing it, oh well, hopefully she'll outgrow it by the time she's seven. On the topic of preschool we hope to visit the one that we've pretty much chosen soon. I'm also going to set up an apt with the district to get her evaluated (which I guess we should have done long ago).
Sunday, April 29, 2012
When we got home it was back to work for me and back to causing trouble for Fiona. She was acting tired, then she started running a high fever wt hich we were having trouble bringing down. We ended up in the ER where she was diagnosed with a URI, and we were just told to keep up with the meds.
The next morning we had GI. Dr F said Fi looks great, except that in a huge shocker (jk) Fiona isn't growing...again. I figured this would happen with going milk protein free again. Fi's around the same size she was in Oct, however Dr F only seemed concerned about her drop over the last month...yeah whatever, I saw the chart and I know it's a bigger issue. She's always struggled and now I'm worried that we're looking at going back on a formula, but I'm not convinced Fiona will drink it if we have to go that route.
The next day (Fri) Fi wouldn't drink or eat anything and was complaining that everything was too hot. So we got squeezed in at Dr Es. Dr E checked her throat, which the ER had not. Well her throat was full of ulcers so she started her on antibiotics. Luckily, Fi was really doing better a couple days in...so thankful she was better in time for her birthday.
Which brings me to yesterday...Fiona turned 3! Yes birthdays are a big deal for any child, but when you've gone through everything she has, it's an even bigger mile stone to celebrate. We had a small Princess pool party and Fi had a great time. She spent most of it pretending to be a pirate and playing with her bestie Lydia. She got lots of awesome gifts and wished for a boat when she blew out the candles. My baby is officially a big girl.
Tuesday, March 27, 2012
I also think that using the senna more has helped, Dr Charles is afraid if we do it too often she'll become dependent which is my fear too. Now he wants us to wait 2-3 days before giving it if she hasn't gone, I'm hesitant though because I know how quickly things can spiral with her and also that many times she doesn't fully empty...so I'm going to do it my way, because it's working and I don't intend to be doing weekly cleanouts again any time soon.
Dr Clendaniel was very nice, though I'm fairly certain I could have come up with the same ideas on my own lol. She gave us some charts, to work towards potty training. Basically if she goes, or doesn't go as long as she sits for 2 minutes she gets a sticker. We will mark if she does go, did she pee, did she poop. I'm waiting until thursday to start since I'm off and it's very scheduled. I want to make sure we get all set up before I turn over the reigns to anyone else.
One thing that I found strange was that Dr Charles said that since Fi's poop is soft she is probably with holding until she absolutely has to go. He feels that she's afraid to go. However, she does ask to go potty and she will actually poop almost every time. Dr Clendaniel said that she doesn't think it sounds like she is fearful...who knows. What I will say is that I'm 100% convinced that Fi can not pass solid stool, ever since her very first somewhat firm stool at 2-3 wks she has been unable to pass them, I just feel like there's something else that we're missing.
We go back in a month, so hopefully by then we will be able to see how things are going. We'll also see Dr Fortgang next month and I'm curious to get her input especially since Fi's growth has stalled again. She's 27.5 lbs and 34.5-35in
Thursday, March 22, 2012
First off she had bp, pulse ox and ekg. Her bp was the lowest I've ever seen it at 80/69 (for her right arm). Pulse ox was reading in the mid 80s, luckily it was just the probe, and after switching that her sat was 95-97, and even hit 99 for a couple seconds...way to go Fi.
Next we had her echo and she was even good while they looked at her aortic arch, which is the part she usually hates. When she was done Dr Yang came in to talk to us. He said her aortic valve leak looks a little worse, but otherwise the valve looks stable and he thinks it may last a long time. Such a relief to hear that. Her murmur is significantly changed from our last apt and is now a 6 (the loudest possible murmur where you can feel the murmur through their chest without needing a stethoscope). Since her obstructions are nearly the same as last visit I'm not sure why the murmur changed so much, guess I should have asked lol.
He did ask us lots of questions about her endurance and if she's ever passed out. Thankfully she hasn't, but he made sure to tell us a few times that if she ever faints we need to call him immediately. I mean of course we'd call if it happens, it's just weird that he's never mentioned it before. I wonder if at this age they tend to push themselves too much or something...not sure though?
All in all an awesome apt and we don't need to go back for 6m! By that time she'll probably be in preschool, it's crazy!
Monday, March 19, 2012
Wow, I didn't realize it had been almost a month since my last post. Like usual we've been pretty busy. Fiona was diagnosed with allergies and possible asthma after having a dry persistent cough for over a month. She was started on Singulair and Nasonex.
We've yet to really see whether it's helping because 3 days in she came down with URI and was hacking up a lung all day and night. After 3 nights of no sleep we called her ped who had us stop the Nasonex for now and gave her codeine to help her sleep. It was a welcome relief, with some unwelcome side effects...lol. She's doing better now though so we'll probably be able to take her off of the codeine in the next few days.
At this point she's on Miralax (4x a day), Senna (1x a day), Singulair (1x a day), and Nystatin (2-3x per day) and codeine for now, then back to Nasonex when she's better...I know 5 meds isn't a ton, but sheesh it gets old. We're lucky that Fi's great about taking her meds, but with her going back and forth from my house to her dad and grand parent's it's a lot of keeping up on our end.
This week we'll see Dr Yang for her 6m cardio check up, hoping that everything looks the same. So far the degeneration in her aortic valve has been slow and we really want it to stay that way. I never really get nervous for her other doctors, but cardio always worries me because in the back of my mind I know that we could go and hear it's time for another surgery.
Wednesday, February 29, 2012
Yesterday we had our 1st uro apt. Despite being exhausted from having to get up extra early it was awesome because being the 1st apt of the day we were in and out in a little over an hour! First like always they went over her history and why we were there. Then they took her to US. It was a very quick one to measure her bladder, then back to the room to wait on the doctors. 1st the resident came in talked to us for awhile taking more history. She then told us that Fi's US showed that her bladder capacity is really high for an almost 3yr old, and that despite having soaked wet diaper right before the scan she was still about 60% full.
Then we waited for her to come back with the urologist. He said, "she clearly has alot going and I'm not surprised that she's having urinary problems" It was good/ not good to hear that, I always worry that a new specialist will look at her and be like, um, why are YOU here?
Anyway, for now he just wants us to watch her and how things play out. He feels that her constipation is a big factor in the urine retention. He also said that until we really attempt potty training we won't really see what the true extent of the urinary problems are or really be able to try to work on them with her. So he wants us to go ahead with the behavioral therapist to work towards potty training and come back in 3-6 months.
For now he gave us some info on how to try to prevent UTIs, since she's now at high risk for getting them, and also some other things to try to help get rid of the damn yeast infection. He says if we're still battling the yeast when we come back that he wants to do some further testing to see why she keeps getting them. Since it was a first visit and she's not potty trained he's waiting until our FU to decide if she needs to have urodynamics etc preformed. Overall it was a good apt, however, I'm not really thrilled that his only solution for when she has the screaming in pain episodes which have landed us in the ER twice is to give her motrin. At this point, I know that the pain will eventually stop and probably not bring her to the ER right away, but with a toddler it's hard to distinguish exactly what is causing the pain and I'd hate to miss something because it's just "bladder pain".
Monday, February 27, 2012
He thinks that our current plan, no dairy, and 4, 1/2 caps of miralax is good since she's been doing better. He agrees that her getting sick in November was probably the trigger that set her on the down hill slide.
I asked him about several things today 1) her anterior anus and my findings about it requiring surgery, he doesn't feel that she does. 2)her reaction to enemas, he doesn't want her having them period 3)using senna and dulcolax, senna yes, but he doesn't want her using the dulcolax because it puts her anus out of her control 4)potty training, we will be getting into the GI therapy next month 5)urinary issues, he's still unsure if they are being caused by the constipation 6)gagging and spitting things out, still calling it rumination if it worsens she will need a scope to rule out esophigitis
So our current plan: follow up in 1 month. Use miralax daily, if no bm then we will do senna, if she goes more than 3 days without a true bm we will come back sooner and start therapy then. No fiber supplements. Keep and eye on her bowel habits and swallowing...and I think that pretty much covers it. We'll be back at Children's bright and early for urology with Dr Roth tomorrow.
Saturday, February 25, 2012
We've had so much going on around here. Last Saturday I went with some friends to the Endymion Extravaganza, for those of you who don't live around here, it's a Mardi Gras ball. It was held in the Super Dome for the first time since Katrina. We had so much fun and it was nice to have some mommy time. To go out and hang out with adults was nice esp since with all that's been going on with Fiona lately, I've been pretty stressed.
She's still been having some episodes of painful urination, and frequently going 12+ hours without peeing. We are seeing Dr Roth at Children's on tuesday for our first urology apt. Hoping that he can give us some insight as to what might be going on. I also want to ask him about the yeast infections, she's pretty much had one constantly for the past 5 months and frequent ones before that. Not sure if that's in the uro realm of things to deal with, but I hope so.
We also have GI (Dr Charles) on Monday so it should be a busy 2 days. Interested to hear their take on what's been going on. I also really want to talk to them about our ER experience and my concerns about ever bringing her back to that ER, it was awful!
As far as the constipation goes it does seem like she is improving since coming off of dairy...so fingers crossed that this was the solution that we needed. She's currently taking 4 1/2 caps of miralax a day and senna/ dulcolax suppositories as needed. We did the senna 2x a day for 1 week along with the 3 days of dulcolax and that was really the turning point. In awesome news Fiona has actually asked to use the potty and pooped on it 2 times! I'm sooo excited by this because I was really beginning to think we may never get to the potty training point with her. Since she's making progress on her own I really want to push to get her in the GI therapy program ASAP. I'm very sure now that her issue is not holding it in since she wants to go.
Of course with the good comes the other...lol. It's always something. I know I mentioned this months ago, but Fi has been still chewing up food and then gagging and spitting it out. She's also swishing her drinks in her mouth, sometimes swallowing, others letting it roll out of her mouth. So I plan to ask about repeating her swallow study. We had assumed that her dysphagia was gone, but maybe we've just been over looking the signs the whole time...idk. I definitely want to rule it out though because she was at aspiration risk and since she's been coughing a lot lately I want to make sure it's not an aspiration thing.
Even with all of the craziness we've still been having fun. Fiona had a great time at the parades and caught tons of stuff. She told me she wanted to go to parades today and when I told her that there are no parades, she said "but why not?"...lol. We did Chuck E Cheese, got pictures taken, bought dressers and I made her a new dress...no wonder my house is a mess lol. I'll try to update after each of her apts and also when I hear back from Cinci.
Monday, February 13, 2012
In the ER we had to go in this creepy multi person, adult and child room, which in all of our trips to Tulane we have never had to do. They thought maybe she had a UTI and she was definitely crying when she had to pee again, the other theory was that she was constipated again and this was causing her to not be able to urinate.
We went for an xray and it showed that she was full of stool, again (3 days post cleanout), but the doctor said he didn't think this was the problem. So they kept trying for a urine sample and finally cathed her. The test was clear, so they sent us home with instructions to keep doing miralax, 2 days of dulcolax suppositories and 1 week of stimulant lax. Well it did work in getting her emptied out. I did notice also that after they cathed her she said she felt much better and did not complain again about peeing. So we still don't know exactly what was causing such severe pain.
Now that she's not just having poop issues, but pee issues (this has been going on to some extent since Nov) I'm even more frustrated...and I feel like our hopes of potty training are drifting farther and farther away.
So I took it upon myself to do some more research into motility disorders, and solutions. Well I found out that the test she had at 1, the barium enema has a false negative rate of 24% when checking for hirschprung's disease, and that it doesn't even look at the actual cells, which is what truly determines whether or not someone has this disease. I also looked up the anterior anus, her dx from children's, and found that it's a debated dx. Many doctors believe that there is no such thing as a malpositioned anus with normal function...it's either a variant of normal or a perineal fistula.
With all of my new info in toe I'm going to request a suction biopsy at our next GI apt, to rule out HD more diffinitively. Secondly, I also emailed Cincinatti, the #1 GI hospital in the country, with the only Colorectal Institute. They already emailed me back and the best thing their email said was "we are happy to help your child". They sent me a request for certain records to send to them. Fi's Dad is very against the idea of Cinci because he is always against having testhing done and just would rather say, "well her body always works funny, what are you going to find out...etc" I want answers, or at least to get her feeling better so that we can get her potty trained and in school...he's content though and thinks things are good enough.
With all of this GI stuff going on I sometimes forget about the other big part of our journey, the heart stuff. This week is CHD awareness week. Fiona is 1 in 100! I would have never known that so many kids are affected by heart defects until I was thrown into this world almost 3 yrs ago. We are so lucky that Fiona, despite not having a prenatal diagnosis, had her CHD caught early and was able to have life saving heart surgery at just 2 days old. We are so grateful for all of the doctors and nurses who have kept Fiona here with us. It isn't always an easy journey, but I wouldn't have it any other way. I am a better person and more importantly a better mommy because I am a heart mommy.
Thursday, February 2, 2012
Unfortunately this means another cleanout, if you're keeping tabs that's number 3 in the past month and they are no fun. Basically it involves giving nothing but clear liquids and laxative until she poops clear. This is a miserable process and usually involves many tears shed and a very grumpy little girl.
Once we are finished with this Fiona will go back on a milk protein free diet and we will trial using soy milk. Hopefully this will be the change that helps. In 2 months we'll follow up. If we've seen an improvement then we'll stay just milk free, if we're in the same spot we are now she will have to go back on an elemental formula like Elecare Jr. It's really tricky to do such a restrictive diet, so we don't want to have to go that extreme yet.
On a side note February is CHD awareness month...I'll do a heart post soon...but for today it's all about the poop :-)
Tuesday, January 24, 2012
I really hope at the Children's apt we can talk some about getting her into GI behavior therapy since we really want her to be able to start pre-k (wow I can't believe I'm saying that about my baby) in the fall. So far we've been told to hold off on potty training until other issues are under control, but I so don't want her to miss out on the school experience because of something as silly as potty training.
Hoping that we can keep her feeling well, esp since she's had such a hard time growing and when she's impacted/ during cleanouts she can't eat or hold anything down, so I'm worried about it in that aspect as well. For now though, I'm going to enjoy having my boogie back (even if it means hearing all about beautiful flowers at 2 am).
On a side note, please keep Fiona's heart buddy Graycen in your thoughts and prayers. She is 16 months and has HLHS, she's currently in ICU battling a bacterial and fungal infection in her blood that has gone to her heart. She will be in the hospital for at least a few months undergoing IV treatments, if they don't work she will need a valve replacement, and she currently also needs the Nissen surgery to prevent aspiration. She's a tough little chicken, but she's very sick and needs all the prayers she can get.
Thursday, January 12, 2012
I feel so bad for her and she's in obvious pain. She's shrieking like she used to as a newborn. It's awful. We've cut out milk and put her back on coconut milk. Upped her dose to 2-3 times daily and we had a couple days of nothing but watery yuck and then boom she stopped pooping again. I swear if you would have told me 3 years ago when I was gearing up to have this little lady that I'd spend so much time worrying about and typing about her poop I wouldn't have thought it was possible.
The thing that worries me the most in this situation is where we were a week ago with 2 failed enemas, countless doses of laxative, 2 er visits, clear liquids and a child who was just lying around in pain, if these things are failing what are we left with? This can't become our new normal and it really sucks because it's pushing our hopes for potty training at any reasonable time out of reach. I really want her to start preschool in the fall, but I'm pretty sure at this rate we'll need to try to find one that will work with her. It's not, in the grand scheme the worst thing, it's just frustrating to not be able to even try to make progress when you know they're ready from a cognitive stand point.
Hopefully, I can get her into see Dr E tomorrow and discuss what's going on and although we can't get into GI right now she can talk to them. Icing on the cake is that Fi has another yeast infection, which I've lost count of how many that makes over the past few months. I really want a solution for that situation as well.
Thursday, January 5, 2012
The next morning I had to go to work but let her dad know what I had noticed. He said that she'd gone twice on Saturday and was surprised she was struggling so much. He went ahead and gave her miralax with every drink that she had, but still nothing came out. I picked her up around 3 and tried to feed her lunch, she was in so much pain that she was arching her back and screaming...I'd already left a message at the ped office, but hadn't heard anything back.
I got a call back around 5 and Dr E said to keep up with the miralax and just do clear liquids. If her pain was out of control we could try and enema or bring her to the ER, but otherwise just watch her. She was miserable and wouldn't play or really move so I decided to bring her to the ER at Children's Hospital in New Orleans. It was such a disaster experience!
First off we had to wait over 2 hours to even get into an exam room and then another 40min to see the doctor. The doctor came in, did a very brief exam and ordered an enema. The nurse came and gave it to her and after an hour we still had no results other than Fiona falling asleep after screaming bloody murder. The doctor then decided that she would do an exam, and tried to break up the poop. Still nothing happened, but since Fi was sleeping she said she was fine to go home.
Well I don't think she was very comfortable at all, she was very shaky and on the car ride home she started projectile vomiting. I immediately called the on call ped who basically said, not my problem call the ER back they just saw her.
The ER was no help either and just said she was vomiting because of the pressure in her stomach and was fine to wait until morning and to follow up with her doctors in the morning. So I woke up 1st thing and called Dr E's and Dr C's offices. Dr E's office called and said it was a GI issue and left a message with Jeannine at Dr F's (our GI at Tulane). She called back and said to do another enema and a clean out. Fi ended up sleeping most of the day so we got a late start. After 5 doses of miralax, and a second failed enema Fiona began vomiting again. At that point I was really getting concerned so I brought her to the Tulane Pediatric ER.
We had to wait maybe a 1/2 hour, but they were busier than I've ever seen and were much nicer about the wait. They immediately said that they were going to make her feel better before sending us home which was really a relief. In typical Fiona fashion as we're waiting to see the doctor she pees (for the 1st time all day) soaking her outfit and the bed. When the doctor came in and saw, she'd also pooped a little he said that it was a good sign and that we were likely headed in the right direction he then gave me the option to have her admitted and do a clean out with Go-lytely using and NG tube or go home.
After thinking about it and discussing it with her dad I asked if we could stay a little while and see how she did before deciding. Well luckily Fi's body made the decision for us, she started screaming and freaking out and I was thinking, I guess we'll be staying, but amazingly she finally pooped, and was definitely feeling better after. So we decided to go home.
Today she woke up and has been a little cranky but she's finally back on track. For the first time in days she's been running around, dancing, jumping and best of all smiling. Her tummy is still bothering her a little, but overall she's a million times better. We've decided to take her back off of dairy for now since we really don't want to put her through this again.