Thursday, December 31, 2009

Strep throat

Well, I don't know if this is the best day for me to post my New Years hopes and dreams. We'll save that for tomorrow and hopefully tomorrow will be a better day. Reagan woke up a few times last night making it impossible to get any rest. Then this morning started off with her throwing up (and then again at noon). Ugh. I know, I should be happy that she went 6 days straight without any (and I am) but it's just such a hard thing to deal with. And then the nonstop crying, well that's the worst. I called her pediatrician this morning and she told me to take Reagan in (she wasn't in the office today) and get her checked out just in case it's something like an ear infection. Truthfully I was praying it was an ear infection. Something easy...to figure out and to treat. But it wasn't. What it was is strep throat!!! My poor girl! The doctor looked at her throat and said it was a little red but since strep throat has been going around she wanted to just swab for it (not really thinking that was it). Jackpot! Strep throat. I have to admit I was happy. We finally have an answer as to what has been bothering her. Unfortunately it's not an easy fix. 10 days of antibiotics. I'm hoping we'll see improvement soon though. She is beyond miserable. Grinding her teeth constantly, making horrible facial grimaces and sounds, it's unbearable. And then the movements. The chorea/dystonia like movements have really picked up and are almost nonstop again. And from what I hear it's actually very painful in itself. It's certainly hard to watch...I would equate it to watching her having nonstop seizures. It's that bad. I got desperate tonight and switched up her nightly routine, giving her some Klonopin instead of Clobazam. Dr. Chugani had mentioned to me that Klonopin is actually better for treating those movements than Clobazam (and since they are both in the same family of drugs, it's not too hard to switch between them). I'm hoping it will help. It did seem to calm her down after about an hour or so, she even fell asleep, but she's back up now...wide awake. Ugh. What a nightmare. Can we please catch a break? It's just too much. I'm totally at my breaking point. Reagan can't seem to even get close to being back to her baseline. It's just one thing after another being thrown at us...at her. It's SO frustrating. We definitely need some prayers.

Wednesday, December 30, 2009

What's hurting?

Reagan woke up this morning crying with a super liquidy dirty diaper (requiring an outfit and bed change). She's pretty much been crying ever since. Something's definitely hurting her. I assumed it was tummy related with that kind of diaper and that it would pass, but she's continued to be really upset all day. I want to help her but I have no clue what's hurting her. She's been grinding her teeth a lot, so that would make me think it's teething related. Then we had that whole mishap with her tube on Monday, so maybe she's having some pain associated with that. And then there's her tummy. She hasn't had much gas which is usually the best indicator of tummy pains, but she did have another super liquidy diaper this afternoon. She's tense. Stiff in her arms, stiff in her legs. She's also been shaking. It's almost like she's so tense that her legs start shaking. It's horrible. All of it. I want to help her but don't know what to do! Yesterday when she seemed uncomfortable, Tylenol seemed to help. So we started off the day today with Tylenol and she got another two doses of it this afternoon. Maybe it helped a little at first. Not so much this afternoon. Her pediatrician recommended trying Motrin. Didn't really seem to do anything. She's been super gaggy today but amazingly she hasn't thrown up. I thought for sure several times it was going to happen but it didn't. Makes me wonder if that new medication is actually doing what we had hoped. It has been almost 6 days since she last threw up. That's certainly the longest she's gone in a while. I'm hoping we can avoid the gj-tube if this medicine does the trick. Please keep her in your prayers. She really needs some good days. We all need some good days. Let tomorrow be a good day.

Tuesday, December 29, 2009

Back out

So last night was a long one. We were at the hospital for 7hrs, half of which we spent in a waiting room filled with coughing children. Once we got back it took a while for them to get someone from surgery to come down and examine Reagan's site (which was oozing for the first time ever). Looking at it, they thought it was OK, but understood our concern that it had been pulled out and seemed to be clogged. The doctor rather forcefully pushed through some fluid and apparently unclogged it. It was weird, she could push in fluid but couldn't draw it back out. She decided it would be best to do a contrast study to make sure the tube was still where it's supposed to be in the tummy. So we headed down to X-ray at 3:15am (with Reagan wide awake and still laughing) then by 3:45 we were leaving the hospital. They said everything was fine, the tube was in the right place, just to go home and come back next week for our regularly scheduled appt with the surgeon. Thank God. I was so worried that we had waited too long and the incision had sealed back up (requiring another surgery). The biggest concern now is not pulling it again since it no longer has stitches holding it in place. Just to clarify, she didn't pull it (although she tries at times). It got stuck in the recliner and when I tried to get up and hand her off it was pulled tight. I was really freaked out. I'm just glad it was OK. Needless to say we are dragging today (especially Mike who had to go to work). We got about 4hrs of sleep. Little Miss Reagan slept in til 2pm. That's right. I guess it's a good thing she has a g-tube so I can give her medicine and food without having to wake her up. She's been in an alright mood today. Alternating between periods of semi content and screaming and crying. I'm not sure what's bothering her...I don't think it's her tummy because she didn't seem to have any pain whatsoever yesterday. Tylenol suppositories seem to help. I just hope we can get her to go to sleep soon...I'm not sure how much longer we can keep our eyes open.

Monday, December 28, 2009

Back in the ER

I'm updating from the hospital, ER to be exact. Reagan's tube got yanked out this afternoon. Not all the way, just about a centimeter. The surgeon on call told us it should be OK, but as we continued her feeds I tried to push in her Meds and they wouldn't go. That's what really brought us in. We have to be able to get her meds in...and food for that matter. We've been here 3hrs and just got into a room. Haven't seen surgery yet, so no clue what they're going to do. Hopefully they come soon...she still hasn't had her pm seizure meds. Please keep her in your prayers. She's such a trouper,she's been all smiles and laughs today.

Sunday, December 27, 2009

Giggle

Last night Reagan had a good night's sleep...probably the best she's had in a while (and us too for that matter). She's been a little more alert today. Alternating in between wide open eyes and half closed sleepy eyes. She had a little giggle fest tonight for Daddy. So cute. I got the tail end of it on video. I love it when she laughs. So cute! She's still been pretty nauseous...I don't really expect the Periactin to work too well just yet because she's only at a half dose to begin with. She had a couple instances where she retched and we thought for sure she was going to throw up but nothing ever came out. I guess that's better...although the nausea is really hard to watch. Poor thing. After the fact I realized that in all of the excitement of Christmas and the opening of presents we forgot to take any video or pictures! Of course I didn't think about this until afterward. Thankfully my mom got a few of Reagan here and there so I thought I'd post those today. Enjoy and please continue to keep her in your prayers...










Saturday, December 26, 2009

Changing it up

Last night went well. Reagan slept through the night and woke up this morning in a good mood (without throwing up). She actually looked less gaggy today, but instead she was extremely groggy. She was content to just lay on our laps cuddled up eyes half closed or lay on the floor with Elmo. While we were in the hospital she got a Many Kisses Elmo and she just loves that thing! He makes kissing noises and (at times) it really cracks her up! Today I finally spoke to Reagan's pediatrician. She thinks it's the motion sickness patch that's making her retain her urine. She didn't seem too worried about it. She also agreed that it's time we try something else for her nausea. So today we stopped her Zofran as well as the motion sickness patch. We're going to try Periactin...which is one of the two medications recommended for cyclic vomiting syndrome. It's actually an antihistimine often used to stimulate appetite (and it can also cause bladder retention so that's why we're stopping the patch). The other one is Elavil...it's an antidepressant and her doctor doesn't want to use it because she's afraid it might interact with one of Reagan's seizure meds. We're really hoping this will work. If she does have cyclic vomiting syndrome there's a good chance it will at least help lessen the occurrence of episodes. We want it to stop altogether, but at this point we'd certainly settle for less. She also prescribed Phenergan suppositories to use to try to shorten the duration of the vomiting episode. She said it may make her sleepy, but sleeping is preferable to throwing up. Both Periactin and Phenergan have the potential to lower seizure threshold, we don't think it will be a problem, but please keep it in your prayers that this new treatment plan will work without causing an increase in seizures.

Friday, December 25, 2009

Angel girl

Reagan has been a total angel today. But she was up a lot last night, she was seriously fighting sleep...she was still awake lying in her bed at 2:30am when we picked her up and put her in our bed and then at 6:30am she woke throwing up. Merry Christmas to us. We stopped her feeds and thankfully she only did it once. We got up and opened the many presents brought by Grandma (I mean Santa). Reagan got tons of stuff...none of it from me. I actually didn't even buy her one present this year. Not one. We were in the hospital for so many weeks before Christmas, by the time we got out my mom had already bought her everything I could think of, so there was no need to run out and get anything else! She even went through huge pains to find two of the toys they had at the hospital that Reagan seemed to enjoy (one of which hasn't been in stores since 2006). My sister bought Reagan a black skull hoodie...very her. We had a nice relaxing morning at home and then went over to Mike's sisters house in the afternoon for a Cajun Christmas lunch (seafood gumbo). Busy day and Reagan has been wonderful all day long! Laid back, super smiley...just a sweetie. She is doing one thing that's concerning us a little. I put in a call today to the pediatrician's office, but no one ever called me back. It started yesterday. She didn't pee all day long. She wasn't dehydrated, she had gotten plenty of fluids, we actually stopped them at 20oz because her belly was getting too full and distended. Finally when I picked her up at 2:30am she finally had a wet diaper (but that was more than 24hrs without going). Then today again...no pee. Two dirty diapers, but no wet ones. I'm not sure what's going on but I don't like it. We did stop her feeds this morning so she's on the lower end of fluids but still plenty enough to go. I'm planning on calling her pediatrician's cell tomorrow. I didn't want to call her directly on Christmas day (since she's not even on call) but I did try to get in touch with her on Christmas Eve and she never called me back. Hopefully she'll have some ideas. Anyway, I hope everyone had a very Merry Christmas! We're praying for a good night's sleep tonight. We are beyond exhausted!





Thursday, December 24, 2009

We wish you a Merry Christmas

Just wanted to wish everyone a very Merry Christmas. Today has been a good day for Reagan. She slept in late this morning and got through a whole night's worth of feeds successfully. Today she's been pretty mellow and happy. I'm hoping that will continue so that we can have a Merry Christmas too! My mom came in last night and brought literally an entire car full of presents. You can't even get within 4 feet of the tree because of all of the gifts. She does tend to get carried away at Christmas. I wish Reagan was more aware of everything so she could enjoy it. Maybe next Christmas. This Christmas we'll just be happy to make it through throw-up free!


Wednesday, December 23, 2009

Cyclic vomiting hypothesis

We've had another rough one today. After Reagan threw up last night so I took it slow adding back her feeds. I gave her medicine to her extremely slowly and then didn't start her continuous feeds again until 3:30am. She woke at 6am fussing, but OK. Then at 9am...she threw up. Ugh. Not again!?!? So we stopped the feeds, took it slow with her morning meds and then restarted again slowly this afternoon. Then at 7pm...more throw up! What the heck is going on here?!?! I'm beyond frustrated! We spent 3 weeks in the hospital and they didn't do anything to even attempt to figure out why she is throwing up! And the crazy thing is she's taking massive amounts of anti-nausea medication but it's not helping her in the least! She's taking Zofran around the clock (4mg every 8 hrs) and it's supposed to be the best of the best! But not for Reagan. She's also gettng a motion sickness patch (scopolamine) but it doesn't seem to be doing anything either. I've been searching the internet trying to figure this out myself. The only thing I can find is something called cyclic vomiting syndrome. It seems to be more common in people with mitochondrial disease. In these cases the vomiting is triggered by something similar to a migraine...and to treat it, you have to use a migraine medication, not a nausea medication. Interesting. Maybe that's it. I'd like to try one of these medications, Elavil or Periactin, to see if it helps Reagan. Although she doesn't completely fit the mold for CVS...she doesn't really fit the mold for anything. So it's certainly worth a try. Problem is, her pediatrician (the only doctor that has been following her through all of this) is out of the country on vacation. She's supposed to be coming back tomorrow and you can bet she's going to have a voice mail waiting for her when she arrives. In the meantime we need some throw up free days. She needs to catch back up on her nutrition and hydration! Please keep this in your prayers. She's so skinny (and boney), I'm really worried about her. Prayers for an uneventful Christmas eve and Christmas day.

Tuesday, December 22, 2009

More throw-up

The day started off well enough. Reagan woke up around 5:45am but went back to sleep in our bed. That's a good amount of sleep for her, considering she fell asleep at 8:45pm. She seemed overall less gaggy today. She was a little more fussy, but I'll take fussy over gaggy anyday. She was just kind of on edge...on the verge of crying most of the time. Lots of what I call smile-cries. She had her moments, but I think tummy pains were again responsible. She did have a huge blowout today and our helper was hit! I guess it just comes with the job. Speaking of, tonight I was holding Reagan and the all too familiar throwupy look appeared and next thing I know I was hit...in the face! More throwup?!?! Is this ever going to end?!?! You can just tell she's miserable, she gets all cold and clammy and then turns beet red trying to cough it up. Poor girl. Thankfully I had her continuous feeds going nonstop since last night so she had already gotten almost 18oz for the day. I decided to just stop the feeds and give her tummy some time to rest. Good thing because she threw up again an hour or so later. She fell asleep early tonight, she was yawning a lot today and throwing up takes a lot out of you. I hope she's able to rest without any more stomach upset. I still have to give her her medicines, but I'm going to take my time and push in a tiny bit at a time. Hopefully she'll tolerate it. Please keep her in your prayers...

Monday, December 21, 2009

Spent

I guess everyone can see now why we've had a hard time getting into the Christmas spirit this year. We've actually known about the mito diagnosis for over a week and a half now, but just didn't know how to break it to everyone. I try not to think too much about the future implications of this diagnosis because it so easily brings me to tears. I try to keep positive...that maybe one of these vitamins will really help Reagan. Things have to get better, right? Today was a rough day. Reagan woke up at 4:45am screaming bloody murder and continued to do so much of the day. Her tummy was definitely to blame...she had 3 dirty diapers, which is way out of the ordinary for her. She was also very gaggy all day. Lots of odd facial movements, tongue constantly sticking out, tons of foamy spit...at one point she gagged and dry heaved for a while but thankfully nothing came out. We're all just worn out. The constant stress of her gagging and then vomiting for half a day, the nonstop medications and vitamins we have to get down her, the lack of sleep...I'm spent. So is she...she fell asleep super early tonight at 8:45pm...I sure hope she's down for the night. We all could use a good night's sleep tonight. Continued prayers are appreciated...


A few pics of Reagan at her best (in between the bouts of crying, she was smiling and laughing)





Sunday, December 20, 2009

It's complicated

Last night we had an interesting incident, I went in to check on Reagan after she fell asleep and could smell her from a mile away. She was covered from top to bottom, we had to strip her and her entire bed. What a mess. She never even woke up through it all. Then this morning she woke at 5:45am throwing up. We put her in bed with us but she never fell back asleep, just laid there feeling sick and continuing to throw up. Poor girl. I just hope we can keep her hydrated until we can get that gj-tube put in. So frustrating. Speaking of...we received some interesting news. I've been waiting to share it, hoping we would have a better grasp of what it all means before telling our family and friends, but it's complicated and we're still very uneducated on the subject. Reagan's muscle biopsy testing for mitochondrial disorder came back showing that she does have a deficiency in the Mitochondrial Complex I. They are going to continue with the genetic testing to hopefully identify whether or not this was an inherited or random mutation. They may or may not come up with something conclusive...but it would sure be nice to know. We're still not sure what all of this means, because "every kid is different". Supposedly it doesn't really matter how many or which defects you have, it just means your mitochondria are not functioning properly and that can lead to a long list of problems (which is different in every person). In Reagan's case many of those problems we already know about...seizures, developmental delay, vision problems, etc... But it may also explain the craziness of this past month. Many kids with mitochondrial disorder have issues with nausea and vomiting which can exacerbate to something called cyclic vomiting syndrome (which may be what we're dealing with). They also have a harder time recovering from anesthesia or surgery. Reagan's geneticist really didn't think it was even worth testing for (which makes me wonder how many undiagnosed kiddos there are out there). But after talking to other parents and hearing about kids very similar to Reagan that were diagnosed (kids with very difficult to control seizures, severe gastrointestinal pain, and eosinophils in the gi tract), I decided it was something we had to do. I'm certainly not happy about the results. Mitochondrial disease is rarely if ever a good thing. But it is an answer. A diagnosis...after years of searching. And I think it was important for us to know (although it does seem that our world has been falling apart ever since the biopsy). There are certain medications that kids with mitochondrial disorder should not take...so that's something we need to know. There are also vitamin supplements to try and many kids show improvement with them...we've already started her on riboflavin and L-carnitine and Coezyme Q10. She's only just been on them a few days, but I did read that some of these vitamins may help to reduce the frequency of the vomiting associated with cyclic vomiting syndrome. So hopefully we'll see some improvement in the next week or two. As far as what all of this means for us...not too much has changed. More things to worry about, I guess. We take each day as it comes and continue to hope and pray for some dramatic improvement and progress for our little one. I ask that you would do the same.

Saturday, December 19, 2009

Not feeling it

Today we just sat around the house all day. It was nice. I should be out Christmas shopping, considering we've spent most of the past month in the hospital, but I just don't feel like it. I'd like to get out just to get a little taste of the Christmas season, but I don't feel like dealing with the crowds and I don't really feel like buying anything either. I don't even think I'm sending out Christmas cards this year. After all we've been through lately...I'm just not feeling it. Reagan is still not back to herself. She's been very floppy and sad looking. She's also been doing this weird thing with her legs, where their moving almost nonstop, but not really in a purposeful way. Tonight her tummy was really distended...she must have some gas or something trapped in there but when I vented her g-tube nothing really came out. She's looked gaggy pretty much all day today. I kept pausing her feeds because she'd look like she was about to blow but thankfully that never happened. I'm hoping that some of these meds she's on will keep all of that under control. Unfortunately I think those meds are also causing this zoned out state she's been in. I don't like it. Please keep her in your prayers, she certainly needs them.

Friday, December 18, 2009

Droopy

I have another post...one all written up and ready to go but I'm going to wait until Monday. This is a busy weekend before Christmas and some may not have time to read the blog and this is important information everyone needs to see. So stay tuned. As for our day today...fairly uneventful. In our house that's a good thing. Reagan slept well last night but has been a little droopy today. Just limp, pale, red around the eyes...she just looks sickly. I'm hoping it's not really sick sick. She's still got a long way to go before she even gets back to baseline. I'm hoping the more food we get into her, the more she'll perk up. So far so good with the feeds. Even though we have it set on 30ml/hr continuous (24 oz a day)...she's actually getting around 20 oz because we often pause it while we give her medicine. That's a lot more than she was getting previously by mouth, but probably not enough to gain back the ground she's lost. We'll probably have to increase the rate sometime soon, so she's getting more calories. We got a delivery of the Tropical formula yesterday and that smells way better than the unflavored version. Tonight we saw some more of the seizure-like movements. She had just woken up from a nap and had quite a few of them. Of course, I think this is the exact same movement that was recorded on the EEG and they said it was not a seizure. I just hope and pray that's the case. I can't stand the idea of her seizures coming back. Please keep all of this in your prayers. Our little one deserves some good days...

Thursday, December 17, 2009

Scraping by

Last night was great. We all slept well in our own beds and woke up this morning to Reagan crying at 6am (at least it wasn't because someone was trying to take her vitals). She settled down and went back to sleep, which was nice. All morning she was very calm and laid back. Our helper worked with her a lot, which is good since she hasn't had any therapies in over a month. I feel like I spent most of the morning administering medications. She had 9 medications/vitamins just in her morning dose. What a mess. This afternoon the gas and tummy pains set in and Reagan was not a happy camper. When she wasn't crying, she was on edge. Thankfully all went well with her feeds and she managed to hold everything down today. She did look pretty gaggy at times, but somehow we dodged that bullet today. That's really what it feels like. Each day we're just trying to scrape by...trying to get as much food and medicine down as possible. Trying to keep her hydrated and nourished until we can get this g-tube switched out for a gj-tube. It's stressful. And I found out today that her surgeon is out of town the first week of January (which would be 4 weeks post surgery), so we'll have to wait another week to get it replaced. Ugh. Stress. The surgeon has to switch it from a g-tube to a g-button first and then interventional radiology will change it out for a gj-tube (because apparently interventional radiology doesn't like dealing with g-tubes). Please keep all of this in your prayers. It sure would be nice if this whole throwing up thing would just go away and then we could keep the g-tube and avoid this whole mess.

Wednesday, December 16, 2009

Home sweet home

Well we did it. We finally made it out of the hospital (again) and back to our own house...hopefully this time to stay. It wasn't without drama though. Reagan woke up at 4am throwing up so I stopped her feeds. I started them back up at 7:45am, she vomited again at 8. This continued off and on all morning. People seemed amazed that we were still leaving with her continuing to throw up. Problem is, they never even really put much effort into figuring out why she was doing it in the first place. Her doctors agreed she's probably better off at home instead of sitting 24/7 in a hospital. I have to agree. Not much to report about the EEG. I think it was pretty pointless. They didn't hook her up until late last night and then they came and unhooked her around 9am. So she basically got a 12hr EEG instead of a 24hr. It makes me mad that they cut it short because we didn't even see any distinct movements like we've been seeing during it. I thought I saw a few very subtle things so I pressed the button...but they said there was nothing on the EEG to suggest that those were seizures. I'm still waiting to see the final report. It will be soooooooo nice to sleep in our own beds tonight. I'm ready to crawl in right now. Reagan was so happy to be home. I've never seen her laugh and smile so much! It was adorable! Here's to a nice uneventful night at home...



Tuesday, December 15, 2009

Still here

Well, we're still here. And in a way it's my fault. I mentioned to them that we've been seeing some "movements" here and there that resemble seizures (nothing compared to before but definitely something). They were able to get us in for another 24hr EEG tonight so we went ahead and just stayed. So one more night here...hopefully we'll be home in our own beds tomorrow night. Reagan made it all day without throwing up. She definitely had her moments where she looked like she might, but she managed to work her way through them. Then tonight as they were hooking her up to the EEG they were having all kinds of problems getting it to work correctly and she was spending way too much time laying flat on her back. Next thing we knew, she started throwing up! Ugh! Not good (but at the same time I'm glad we got it on recorded on the EEG...just so we can rule out that it's not in anyway seizure related). Hopefully they won't give us a hard time about leaving tomorrow. I'm just hoping this was an isolated incidence. She's still looking very gaggy and I'm yet to get her pm dose of seizure meds in her yet. Stressful. I'm going to wait til she goes to sleep...maybe that way it will actually stay down. She's up to 30ml/hr continuous feeds. The throwing up really has nothing to do with the amount she's taking in, it just seems to be what she does every couple of days. It doesn't look like it's going to stop so we may just have to learn to live with it for a while (at least until we can change out her g-tube to a gj-tube). I'm not a fan of throw up. And the unflavored neocate junior she's getting right now smells like rotten eggs and even more so when it comes up. We're in the process of trying to get the tropical flavored. I'm sure it tastes just as bad but maybe it won't smell as bad. We did get a new pump today. It's the infinity pump and it's much smaller than the kangaroo pump, which will make it much easier to lug around since Reagan's still on continuous feeds. Hopefully we won't be doing continuous feeds forever but at least this will make our lives easier in the meantime. Please continue to keep her in your prayers...

Monday, December 14, 2009

On the same page

Last night was a nice uneventful night. Reagan was still up at midnight so I laid beside her in bed until we both fell asleep. This morning she slept in a little and somehow still woke up sleepy. She slept off and on all morning...which is strange for her considering she rarely ever takes naps anymore. They thought they were going to have to change out her iv today because some part of it was leaking last night but when the venous access team showed up they said it looked fine and should work out OK for her (especially if we're only here for a few more days). Today everyone seems to be on the same page. Reagan has been throwing up for 5 weeks now with no sign of stopping. I looked back over the blog (my "notes") and it's happening every 2-4 days. Everyone agrees it's time for us to just go home and manage it from there (maybe as early as tomorrow). It's obviously not an acute problem that is just going to go away (not now anyway). And now that she has a g-tube and a feeding pump we can keep close tabs on her intake and try to keep her hydrated and nourished as best we can from the comfort of our own home. We'll probably still have her g-tube changed out to a gj-tube when the time comes, but that's another 2-3 weeks away. It's very frustrating for us. We've spent all of this time in the hospital and still have no real answers. Two days after her muscle biopsy (no one thinks it's related) she started vomiting and stopped wanting to eat and the drama has continued ever since. It's all just so strange. Reagan has always been a healthy child (that is other than the seizures). She rarely gets sick and when she does, she gets over it fairly quickly...until now. Ugh. So frustrating. We want answers and no one has any. Please continue to keep this angel in your prayers!


Sunday, December 13, 2009

Two steps backwards

Not a good one today. Reagan woke up at 3:30am vomiting. Not again. I turned off her feeds for a couple hours and then restarted them at 5:45am. She threw up again at 6:05am. I turned off the feeds for good but it was too late...she was on a roll. It continued every 15-30min for several hours. One step forward, two steps backward. We are so frustrated. We had our hearts set on going home tomorrow, but now I'm doubtful that will happen. I'm not sure what our plans will be at this point. We did make a change yesterday discontinuing the Zofran (because it never seemed to help in the first place) but now we are second guessing that change...maybe the patch was working with the Zofran. Who knows. Although I'm not sure how much of that is just wishful thinking, since the throwing up does seem to be happening every couple days or so. It makes me nauseous just thinking about it. Someone has GOT to figure out a way for her to keep her food down. We need some serious prayers in this department. Thankfully we did get her medicine to stay down today, but it was a process. Poor thing, she's just so sweet and so precious and has to go through so much. Grandma flew in to see her and boy was she happy about that. I was holding her and she was very fussy and crying for me, Grandma walked in the room scooped her out of my arms and immediately she calmed down and fell asleep! Go figure.

Saturday, December 12, 2009

Quiet

Today has been a relatively quiet day. Not a lot going on in hospitals over the weekend. I actually got out for a while this morning . It's only my second trip out since Reagan got admitted almost 2 weeks ago. It's nice to get away and out of this place. I'm hoping we'll be getting away for good this next week. Reagan has been in a pretty good mood today. She had some rough moments this morning for Mike, but it didn't last too long and she has been laid back most of the day. Tonight she did give me a little scare though. She's been doing well with her feeds, they moved her up to 25ml/hr today. But this afternoon she started looking a little gaggy again. I don't know if maybe the patch was wearing off or what (they didn't change it out til tonight...it's changed every 3 days). Tonight (right around the time when we give her her medicine) she was doing a lot of weird mouth movements and her cheeks got super red and hot. I was really worried she was going to throw up but she didn't. We still need a lot of prayers in this area. The only way for us to get out of here is for her to stop throwing up (or get a nj-tube and we don't want to do that). So please pray that the nausea and vomiting will pass (or at least be controlled by medication). We've also seen a few things that look like seizures. We're hoping they're not but you just never know. Now that she's getting regular amounts of food she's out of ketosis, so we need to watch her carefully because if seizures return she may need to be put on the ketogenic diet. Please continue to keep her in your prayers...

Friday, December 11, 2009

Slow and steady progress

Reagan was in quite the foul mood last night...she even woke up crying this morning. I thought we were in for another rough one today but she really turned it around. She's been super sweet and happy all day. She has also tolerated her feeds all day, so that is great news. No nose tube, not today anyway. I'm hoping we can avoid it altogether. She seems to be less nauseous today. I'm hoping the scopolamine patch is working and it's not just a fluke. We've still got a way to go as far as getting out of here. They want her at 30ml/hr for at least a full 24hrs before they'll let us go. Today they moved her up to 20ml/hr. Assuming everything goes well they'll move her to 25 tomorrow and 30 on Sunday. That would put us going home on Monday...best case scenario. I'm so sick of being in the hospital. I would have never, ever guessed we'd be stuck here 3 out of the last 4 weeks. It's crazy. I LOVE Christmas time...the cool air, the lights and decorations, the music. But here we are stuck in this room day in and day out. Our poor dog has been home alone for almost 2 full weeks now. Thankfully we have a wonderful neighbor that has been taking him out multiple times a day. He probably thinks we're never coming home. Sometimes it feels like that. But hopefully it's almost over and we'll be able to go home and enjoy at least 10 days til Christmas. Maybe we'll just leave everything up for an extra month so we can enjoy it. Please say some prayers that this new nausea medication does the trick and we actually get out of here on Monday as planned. Slow and steady progress that's what we need. No surprises.




We've already been told to turn off the lights...apparently they are a fire hazard. Oh well, we've got the night shift on now, so we're leaving them on.

Thursday, December 10, 2009

Not a seizure

Today has been another long one at the hospital. A little less dramatic, but boy are we ready to get out of here. Reagan was still very gaggy most of the day. She threw up some spit this morning and she didn't have anything other than a little pedialyte in her tummy so that was discouraging. They told us the patch can take up to 3 days to take full effect. Unfortunately we don't have that long. Reagan's been going so long without food, if we can't get her to keep it down and stay down by tomorrow then in goes the nj-tube. Today we didn't even start up her formula until around 3pm but she did OK with it and although she looked gaggy, nothing came up. She had a horrible bout of tummy pains crying for hours until she finally fell asleep. It's been so long since she's had any real food in her, I just think it's not quite agreeing with her sensitive stomach. We did get another EEG today to rule out seizures in the case of the weird gasping thing she's doing. Results came back...not seizures. They don't know what it is...perhaps an exaggerated startle...but not seizures. Thank God. We don't need that, we've got our hands more than full right now. Tonight our Bible study group came by and brought us dinner and decorated our room for us. So sweet! We are so thankful to have such wonderful people supporting us and praying for Reagan. That goes for all of you. So many people out there are praying for our little one and we are thankful to each and everyone of you. We couldn't have made it through these past 2 years without your support. Prayers have certainly been answered. I think Reagan's story will give hope to all kids out there with Infantile Spasms. Reagan probably had the worst case of IS I've ever heard of...nothing, absolutely nothing was helping her seizures and she had them literally nonstop all day every day. But 14 medications later and lots and lots of prayers...she's miraculously seizure free for the first time in her life! Prayers answered in due time, His time, that is. Now if only we could get home to enjoy it!

Gasping

I forgot to mention in yesterday's post...Reagan is doing this weird gasping thing. It started yesterday afternoon around 6:30pm before they added any new meds or anything. The only thing I can think to describe it is it's as if you were blowing air in the face of a baby. She takes this huge breath of air in as if she's startled. Air seems to be a big trigger. Even the slightest amount of air can do it...like from us breathing on her or air from us moving something in front of her. I don't know what it is, but I don't like it. It looks seizurey to me. But unlike anything I've ever seen before. Any ideas?

Wednesday, December 9, 2009

What a day

And I don't mean that in a good way. Reagan was rudely woken up this morning by the PCA at 4:30am to do her vitals. It was the velcro on the blood pressure cuff that did it. She was awake but seemed content enough to lay in bed watching her musical light up toy. About 45min later I heard a cough so I jumped out of bed and just as I thought she was throwing up. Who knows what instigated it...I would guess choking on some spit. Whatever the cause, it set off a chain reaction that lasted most of the day. More throw up 30min later (at which point we stopped the continuous feeds) and again 30 min later. She continued to gag and retch nonstop until she fell asleep at 3pm. Poor thing. It was horrible. And mentally exhausting for me. There was a lot of crying today...none of which was by Reagan. It's just so frustrating to sit here in a hospital and watch my child suffer and no one doing anything to help her. I feel like my head is about to explode. Trying to get her medicine down her while she's so extremely nauseous...talk about nerve wracking. I waited a while hoping it would pass but then I figured I needed to at least give it a try and if she threw it up, maybe something would make it in her. Around noon I started giving her 0.5mls of medicine through her tube every 5-10 min. It took me 3 hrs to get everything in her...but you know what? She didn't throw it up. That was definitely a relief. Unfortunately the nighttime dose didn't go as well, part of it did come back up. We saw a few doctors today and finally everyone is in agreement that waiting and seeing just isn't cutting it. Moving down on the Banzel was suggested but I think we really need to exaust all other options before messing with that. So the plan is to start her on a scopolimine patch tonight (something typically used for motion sickness) and hope that it helps with her nausea. If not, then we'll probably try phenergran. The key, we think, is to stop the nausea. Hopefully something will work! Today they also did another stomach/renal ultrasound. I keep hoping maybe they'll find something in that. Something that could be causing this vomiting and then fixed. Please say some prayers for a better day tomorrow. A much better day.

Tuesday, December 8, 2009

Super sleepy

Reagan was a little fussy last night (she was agitated and kept gnashing her teeth and bit her tongue), so we gave her some tylenol w/codeine to help soothe her and hopefully help her sleep. It did seem to calm her down fairly quickly and thankfully we all got a good night's sleep. But this morning she kept sleeping. And sleeping. She didn't wake up until 11:30!! She even slept through vitals and a blood draw without so much as a peep. But when she woke up...she didn't wake up happy. She kept her eyes closed and was thrashing her head from side to side. I'm not sure what that was all about. She did finally snap out of it and start acting more like herself. We got them to bring a tumbleforms chair in here for her, she's been laying in a hospital bed for over a week now so it was good to get her up and in a better position. She stayed in the chair for a while and then started konking back out. A nap...in the middle of the day...now this is unlike her! Then later on I put her back in the chair and she fell asleep again! Two naps! Why would she be so tired, especially after sleeping so much last night!?!? I sure hope she's not getting sick from being in the hospital. Poor thing. She's been through enough. Today they increased her up to 15ml/hr continuous feeds. I have a feeling that they will probably just continue with this slow gradual increase of 5mg per day, making sure she's tolerating it before raising it again. Good idea. Too bad they didn't do this to begin with. So far, so good. No more mishaps. Maybe the continuous feeds is just what she needed to soothe her tummy? Please keep her in your prayers...




Monday, December 7, 2009

Oops!

So...I'm a little late on this post. It's been a long couple of nights so I was exhausted and didn't even remember to post last night. Here's Monday's post...Sunday night was brutal. Reagan did NOT want to go to sleep. She was up til 3am (and that's without a single nap all day). She was also so spitty she kept gagging herself. It was a horrible night...mentally exhausting as well. We're 4+ weeks into this and still not getting any real answers. Personally we think the Banzel might have something to do with it all (because the vomiting coincided with Reagan getting up to a therapeutic dose that finally helped her seizures). We don't want that to be the case, obviously, but at this point no one has come up with anything else that makes sense. Neurology, which is who we need to talk this over with, has been completely absent. The entire dept is gone for a week long conference! So anyway, Reagan woke early Monday morning and was still very gaggy. She choked and threw up just as I was trying to get her morning medicine down her. More stress. We stopped her feeds for a while and then I gave her medicine another try and this time it stayed down. We also spoke with her GI doctor and she wanted to switch her over to continuous feeds at a very low rate (10mls per hour). So around 2pm she was put on continuous feeds and everything seems to be going well (knock on wood). She continues to be in a good mood although some of the spunk has returned. She was really fighting sleep again tonight. She wasn't up as late as the night before, but she was very moany and groany. I was panicking that she might cause herself to throw up with all the fussing. Thankfully that didn't happen. She went to bed around 1ish and we all slept soundly (despite being in a hospital where they wake you up with nonstop noise and nonsense). FYI...Mike postponed his trip to China. When they scheduled it, he assumed we'd already be home and have everything undercontrol. No such luck. Please continue to keep our little one in your prayers!


Sunday, December 6, 2009

Super spitty

Mission accomplished. Last night we gave Reagan her medicine super slowly through the g-tube, 18mls spread out over 1.5hrs. It worked. She was able to keep it down. Thank you Lord. We were so worried! She had gone all day long without any seizure medication whatsoever. We certainly slept a little easier last night. Yesterday we were threatened with the possibility of having to put in a nj tube, another tube that goes down her nose but this time instead of going into her tummy, it would pass through her tummy and end up in the jejunum (the middle of the small intestine). This would ensure that she couldn't throw up her medicine. Thankfully we didn't have to pursue that option. We started again today ever so slowly giving her feeds through her g-tube. Starting with 10mls of pedialyte and then later in the day moving up to 20mls total, 10mls pedialyte and 10mls neocate (a super hypoallergenic, broken down formula). So far, so good. The only real issue we've had today is the excessive amount of spit that Reagan is producing. She's like a faucet. It's nonstop. They even hooked up the suction but as soon as I could suction it out, her mouth would be full again. She's usually a spitty girl, but this is ridiculous. It's just more than she can handle. We basically just kept her on her side all day long, so it would run out of her mouth and not gag her. I'm not sure what's causing it. It started last night and has continued all day. We even had to put her on her side last night while she slept and she still woke a few times coughing. Ugh. What a mess. I was living in fear that she'd choke on the spit and then throw up again. What's crazy is that through all of this, even the throwing up yesterday, she's been in a great mood. So sweet and content, it's amazing how good she's been. My mom came to see her tonight and she was so happy. She's even been a little talkative here and there. I'm so glad to see that she's finally feeling more like herself. She's also back to her regular schedule...no naps and staying up very late. It makes for long day. Please continue to keep her in your prayers. She's certainly improving but we've got a long way to go (feedingwise) before they'll let us go home. I'm hoping we'll get out of here by Tuesday night because Wednesday Mike leaves for China. Talk about good timing (not). He's not going to be gone long but I'm sure it will feel like an eternity (especially if we're still stuck in the hospital). Please keep us all in your prayers...

Saturday, December 5, 2009

More prayers needed

The troubles have continued today. Last night the vomiting persisted and about one hour after her pump feeding finished, whatever was left in there came right back up. So frustrating. Then this morning we were hoping to start fresh but she couldn't even tolerate her medicine. I gave her the Banzel/Clobazam in 10mls of water with 5mls to flush the tube and she threw it up about 10min later. Then we gave her an iv dose of Zofran (the anti-nausea medication) and then tried the seizure medications again, but the second that medicine got to her tummy it came back up again. Poor thing. We don't know what's going on and we're freaking out a little because our daughter just had a tube surgically put into her stomach but she still can't hold anything down. Our nurse could sense our frustration and she pushed for a GI consult (and a neuro consult but they never showed). Everyone seems to be on board with reducing the volumes and going back to just pedialyte. Unfortunately that still doesn't address the real question. Why is she throwing up? No one seems too concerned about figuring that out. Helloooooooo...aren't we in a hospital? Supposedly a very good one? Yet all we've see is an endless parade of inexperienced residents who seem incapable of doing anything to help Reagan. So frustrating. So here we sit. We're not going anywhere until she's able to tolerate feeds and at this point continuous feeds isn't sounding so terrible as long as we can do it from home instead of a hospital!!! So needless to say we need lots of prayers. Reagan went all day without any seizure medications so we need some serious prayers that she can get them down tonight and keep them down. Same for tomorrow. And the next day. The same goes for her feeds. We want to go home...

Friday, December 4, 2009

Improved but not without setback

Last night Reagan finally got a good night's sleep (and consequently so did we). I don't know if the pain medication was finally where it needed to be or what but she slept through the night and it was soooooooooo nice! The first half of the day went pretty much the same as yesterday. She kept waking up crying her breath away. Finally this afternoon I started to see a glimpse of the Reagan I know. She's been much more awake and alert and I've even gotten some smiles. Tonight I held her and she seemed content and comforted to be in my arms. It was great. We did however have a small setback. They started her on pedialyte via g-tube yesterday. Initally they were very conservative 10mls every 3hrs for 3 feeds, then increasing to 20mls every 3hrs for 3 feeds, then 60mls, then 90mls. Then today they decided to go straight from 90mls of pedialyte to 90mls of formula. I thought it was a little too abrupt of a switch but those were the orders (written up by surgery...what do they know about feeds). She seemed to tolerate it OK but she looked like it might be bothering her a little. When they checked her 3hrs later, she had very little residual left in her stomach so they thought it would be OK to increase it up to 120mls. This was only her second feed with formula since her surgery (a new formula at that). Needless to say, it was not a good idea. She threw it all up only a few minutes later. A 4oz bolus feed (they just pour4oz through a syringe right into her tummy in a matter of minutes)...before she got sick it would have taken her an hour or so to drink a 4oz bottle by mouth and that's on a good day! Poor thing! I can only imagine how much it hurt to throw up just after surgery like that. Her next feed they wisened up and used a pump so at least it was spread out over an entire hour. Hopefully that will work out a little better for her. Before she threw up they even mentioned possibly sending us home tomorrow. That won't happen if she can't keep her food down. Continued prayers for our little princess.


The view from our window...snow in Houston! Crazy.

Thursday, December 3, 2009

Rough day but prayers answered

Last night was tough. Reagan could not get comfortable and every time she'd wake, she'd squirm and moan. She's still got a lot of junk in her throat from being intubated during surgery and she's not doing a good job at coughing it up. Then she started this thing where she'd wake up every 10-15min crying and gasping for air. She was also holding her breath til she'd turn blue and I think she even held it til she passed out for a few seconds (her eyes rolled back and she lost consciousness briefly). I convinced the nurse that she needed a pulse ox monitor and it was obvious after only a few minutes that her oxygen was getting too low. We kept a mask going next to her and when she'd wake up and start with the shallow breathing, I'd jump up and put the mask on her. The doctors said that she could be breathing that way because of where the incision is and the fact that it hurts to breathe deeply. Needless to say, no one got much sleep last night and the morphine she was on wasn't doing much for her. This morning they put her on a staggered dose of Toradol and Tylenol 3 (with codeine) alternating with morphine. The Toradol definitely seemed to help (at least the first time she got it anyway). They said the first day post surgery is always the hardest. Poor girl. She can't catch a break. We were supposed to have a renal consult today to figure out what they think about the crystals in Reagan's urine but it didn't happen. I'm not sure where the ball was dropped but it was. Hopefully they'll get someone in here tomorrow before the hospital shuts down for the weekend. Speaking of which they think we'll be here at least through Sunday. Ugh. I want to go home!! Today we did find out the official results of her 24hr EEG (which was really more of a 14hr EEG, most of which she slept through). The epileptologist said that she didn't see a single seizure...granted she was only awake for about 3 hrs of it, but I'm still thrilled to hear that. She also confirmed that there's nothing going on subclinically (that we can't see) and that her EEG actually looks quite good considering the amount of seizures she's had to deal with on a daily basis for over 2yrs. It's still abnormal and slow but that's to be expected. And the most important thing that she found (and it makes my eyes tear up just typing this)...NO hypsarrhythmia. That's right. The nasty, chaotic brainwave pattern that's associated with Infantile Spasms is now gone. Praise God! I cannot even begin to tell you how ecstatic this makes me. Mike and I are still in total shock. It really is nothing short of a miracle. So many prayers being said for this little one and finally 2yrs into it, prayers answered. Now you can see why I was so nervous about decreasing the Topomax. She's been on it for over a year (and continued to have tons of seizures) but changing anything at this point still makes me nervous. Continued prayers are certainly needed...healing in all areas for this little one.

Wednesday, December 2, 2009

G-tube surgery and Topomax decrease

Amazingly Reagan slept like a log last night. After going to bed super early at 8pm, she woke only once fussing but went back to sleep easily. Even at 7am this morning when they were removing the EEG leads (that were cemented onto her head) she never woke up. After those were off, they whisked her away to ultrasound (for the abdominal ultrasound I ordered) and then straight to the surgery holding area. They didn't quite get started at 8:15...it wasn't unti 9:30 or so when they finally took her back. Anesthesiology wanted to come up with a game plan to try to avoid the issues resulting from her last surgery, so they took their time and went over all the old records. Surgery itself lasted about an hour and a half and then the surgeon came and got us. Everything went well. No problems whatsoever. Thank God. He did an open gastrostomy, which means she had two incisions, the incision just below the ribcage where he did most of the work and then the opening around the tube. Many people do this laproscopically now but our surgeon just doesn't believe in that method and he thinks this is the best, low risk way to do it. Reaganwas still asleep when we got to her in the PACU. She woke up for only a moment and threw up some brownish blood that was sitting in her stomach. It scared me a little, but they didn't seem concerned. They kept us in recovery for a while...she was still very much asleep but we were able to get some movement out of her. Then just as we were getting transferred up to a new room she woke up. And she didn't wake up happy. She's been in a constant state of sleeping (with the help of morphine) or fussing/crying ever since. I'm not sure what that means for sleep tonight...I guess we're about to find out. Can we get some morphine? Just kidding. Anyway, lots of stuff going on here. Lots of tests and some preliminary results. One thing...it looks like the ultrasound I ordered may have proven my hunch. They found some "sludge" in her bladder and her urine analysis showed crystals in her urine...presumably the type that turn into kidney stones. So that would explain the crying during urination and possibly the vomiting and nausea. They think it's the Topomax (which is known to cause kidney stones especially during dehydration) and they want to decrease it now. Problem is, she's having so few (if any) seizures at this point (yes you heard me correctly)...I hate to make any changes at all (even though we're doubtful the Topomax is playing a role in this). But it's done. Here at the hospital I can't take matters into my own hands and they've already started to decrease her from 60mg 2x day to 45mg 2x day. We just want to get her off this medication slowly and steadily with no complications and no increase in seizures. So lots and lots of prayers would be appreciated. Tonight we had our first g-tube mishap. She's not getting anything through the g-tube right now...except for medicine. So tonight we gave her all her seizure medications through the tube, they clamped it for 30min and then reattached it to the drain and all of the medicine drained right back out. I freaked out a little...after all this is her seizure medication and I certainly don't want her to go without it. So we had to wait for someone from surgery to come up and address the situation (which took forever). He just said that her motility is very slow from the surgery (which is normal after such an ordeal) but that since she needs her meds, we're going to redose them and try it again only this round give her more time to digest them. What a mess. Prayers that this goes smoothly as well. Digest those meds Reagan!


Tuesday, December 1, 2009

Surgery tomorrow

Last night and most of today was a waste. We sat here at the hospital while they basically did nothing (supposedly they didn't even have orders from our pediatrician...but why would they admit us then?). We didn't sleep much at all, Mike tossed and turned all night and then Reagan woke crying at 4am. So much for sleep. This morning I gave her all of her seizure medications via tube. The pharmacy prepared the Topomax crushed and in a water suspension...this is the first time I've given her anything other than the "sprinkles" by mouth. So much easier to just put it through the tube. I was hesitant, just because switching anything when it comes to seizure meds makes me nervous, but it seemed to work out fine. Actually it worked out more than fine because when I went to give her the Nexium by mouth this morning (just the tiny tiniest spoonful), she threw up! Agh! We had been 5 days without any throw up! She must have been very nauseous because I just touched the spoon to her mouth and that was it! Poor thing. So no reflux medication for her this morning. It wasn't until this afternoon, when the pediatrician came by to straighten everything out, that they finally started ordering things. They took some blood, urine, put in an iv, transferred us over to the EMU to get the 24hr EEG. They really didn't think the EEG was going to happen, but last moment a room opened up and they squeezed her in. Speaking of squeezing, I think they are going to try to get her in for the first abdominal ultrasound of the day bright and early tomorrow morning (before surgery). I'm interested in seeing what that reveals (if anything). They told us that she couldn't have any more food at 4pm today, so we stopped all feeds and I enthusiastically took out the ng tube. I forgot how instrumental that was in giving her her meds (and they were wrong she can have feeds until midnight)...so tonight they had to put in a new one. So here she is with all the EEG wires on her head, attached to an iv and a feeding pump. Poor girl. No wonder she started to get a little cranky. She's fast asleep now, but she fell asleep super early around 8pm so I'm not sure how long it will last. Oh well, I guess at least she'll be ready and rested for the busy day tomorrow. We've opted to not do the fundo at this time. It's just too much and I'm not 100% sure it's the best thing to do for her and her specific issues. She's still scheduled to be the first surgery of the day at 8:15am, so hopefully she'll get a good night's sleep and everything will be smooth sailing tomorrow. Thank you for keeping her in your prayers...