Spent last night in the ER

Ugh!! It just had to be when hubby is out of town! I went to get Nutty Buddy to bed and went to check on the Peanut. OMG!! I could hear her struggling to breath!! I checked her and her pulse ox was 18!!! Yes, full freak out mode! I ran into the other room to hook her BiPap machine back up to oxygen. I also tried to wake her up, with Nutty Buddy's help, and she wouldn't respond. She was just drenched in sweat too. After what seemed like several minutes, but I'm sure it wasn't, she started to come out of it a little bit, and with about 5 liters of oxygen, she finally piqued up!

I called hubby and Grandpa right away. Hubby said to get her to the ER right away, and then Grandpa met us up there. This was around 10:15 p.m. It took us about 1/2 hour to get into a room even, which is more unusual. But we did, and luckily we had Dr. F. and Dr. H., both ER docs who have seen her before. It makes it a lot easier to not have to explain her long, complicate history to people all through the night.

By midnight, Grandpa took the boy home to bed. While he normally loves to stay up late, midnight was really pushing it, even for him! And since it appears that for once, we wouldn't be addmitted, I sent them back home. They gave her a nebulizer treatment, then a chest x-ray, just to rule anything out. But even Dr. F. said how odd it all was since she had no illness symptoms at all! She hasn't had a cough, cold, sneezing, nothing!

She finally fell asleep, while I sat around until 4 a.m. They had to wait for the chest films to come back, and the radiologist checked them. They said there might be some residual pneumonia in her lungs still, and it can stay there for a long time after, but it didn't appear that it was anything new at all. They gave her a course of antibiotics, starting in the ER, to help kick anything out. It's only a 5 day course, so not bad at all. The longest part was waiting for the medication there! Her poor nurse, Matt, felt so bad! He had gone on break and had another nurse covering, so when he saw us still there when he came back, he was shocked! He checked with the pharmacy, and apparently, they mixed up her meds, but left them sitting on the counter instead of sending them over! He even had to call a second time! Argh! But no biggie!

She was fine all day, and is hooked up to her pulse ox again all night. She did have a de-sat episode about 45 minutes after I put her to bed, but I went up and adjusted her, moved her pillow out so her airway could open more, and she's been fine. It's just so damn exhausting!!!! I only got about 3 1/2 hours of sleep last night, or very early this morning. And of course, kids aren't that forgiving when a schedule is all screwed up!

Hopefully this was some odd episode and she's all fine!!!

Online calorie/activity counting again

I'm going back to keeping track of all of the stuff Peanut eats and does everyday! I had to go back to find a good one, mine appears to be gone, but I'm going with CalorieKing.com - although I had to age her 1 year. It only takes the info if you say the person is age 7 or older. At least it's only 1 year difference. So now I can get a better handle on things. Plus I like the amount of restaurant foods that are on it!

We saw the second opinion endocrinologist today

So today was our appointment with Dr. L., another endocrinologist. I felt a lot better coming out of his office then I ever did with Dr. G. We spent 3 hours there, they made copies of the reports that I had, read things over, talked about things, checked her out, and gave us a ton of follow-up things.

First and foremost is the watching what she eats and getting her more exercise. That's the no-brainer in my opinion. But I always want her to hear it again and again, especially from the doctors. The dr. gave her a new bucket of sidewalk chalk too, telling her he wants her to play hopscotch. And to follow-up on all of this, he wants us to see a nutritionist again, have them do a calorie count and go over portion control/sizes again.

Then he wants us to get her a bone age x-ray done. I guess they can see your growth by x-raying the hand/wrist area. Since they measured her weight and height today, they commented that she appeared to have a short stature. She measured low for height now. That was something that nobody else really said before. She was always near the lower end, but as I pointed out to Dr. L., she doesn't come from tall stock!

Finally, he wants a ton of lab work done. He said they're all tests that previous doctors never did or that they're out of date already. Plus, he would really want them to send the lab work to a lab in California that specializes in pediatric testing, then the results would give him a lot more answers. The tests they want us to do include: Karyotype (chromosomes), a.m. Cortisol, ACTH, fasting lipid panel, chem-21, CBC, leptin, Free T4, Total T3, TSH, IGF-1, IGA, IGF BP3, anti-transglutaminose, hydroxy vitamin D, CRP (creatine protein). Now, most of these things don't mean anything to me. Soo... tomorrow morning I need to talk to Ms. S., who handles all her referrals. I don't know how this all works, getting referrals for this work, when it's from a doctor that's not at her normal medical site. That whole HMO thing.

Anyway, she did really well, it was such a huge help that my parents came with. Then grandma could stay in the lobby with Nutty Buddy. He wouldn't have sat in that small room for the 2+ hours we were in there. As I said too, I felt a lot better coming out of there. Granted, it may still come down to her eating and that's it, but I just felt a little bit less "the bad person" when I left. I felt that Dr. L. spent way more time with Peanut than Dr. G. ever has. Oh, and his P.A., Dr. O. was really nice. We spent most of our time with her anyway, she was great, so thorough!

I'll update some more when we get a plan of action for all the testing to be done. And I'll just keep hoping that they find something!

Now, for something totally different...

I've said before, photography is a little hobby of mine. I'm trying to learn, get better, and maybe
one day, make some sort of money on it. But for now, it's just a fun thing. I've been taking a lot of pictures lately, with the 4th of July and all that going on. So I thought I would share a few of them...

These are images that are a few of my favorites from the past few months. I'm going to add some of my all time favorites later.


This is just a collage of a a bunch of my favorite flower pictures:



One of my more recent favorites, from the Chicago Botanical Garden



Buckingham Fountain



Lisle's Eyes to the Skies

Not too much to update, results, but no answers

We did the urine testing a couple weeks ago, and the results were nothing. They didn't find anything wrong with any of the hormones they tested for, all levels were normal. I finally talked to Dr. S. today, we'd been playing some phone tag, and I just took a break from calling too. Anyway, she said they were looking for any evidence of tumors, which the urine test showed there wasn't any evidence of it. She's still going to look into doing the u/s of the adrenal glands, but she said the odds of there being anything there, based on the normal urine results, are almost impossible.

So once again, we're without answers. I've run out of things to even try and research. We do have the second opinion endocrinologist appointment next month, although I'm not holding my breath for any answers there either.

What's even more frustrating now is that with the warmer weather, we've been doing even more. We spent 4 hours at the Botanical Gardens last week, walking all over. We've been being more active with her, outside, she's in play camp now, and still no results. She's even stopping herself from eating everything, on her own. Not always, but it's progress.

The only positive thing is that something in her mind or body has been switched, and she's been staying dry at night. So far this month, in 25 days, she's probably only been wet in the morning (or middle of the night) about 3-4 times. And not only that, we were waking her up around midnight to go potty, and we haven't done that for the past 4 nights, and she's still waking up dry. This is such a huge step!

Anyway, there isn't much more to say...... as always, please feel free to comment with ideas, suggestions, or anything else that you can think of! =)

I hope I'll have more to update this week

Well, Peanut's regular pediatrician, Dr. S., will be back this week. I'm not going to call tomorrow, because we all know that first day back from vacation is just crazy! I'll call on Tuesday though, and see what she thinks we should do next. Plus, hopefully they've done all the hormone tests on the urine sample, and maybe she'll have those results as well.

I did talk to Dr. B. last week, and he had received a copy of her MRI results. So he called to let me know that he looked them over. As far as he's concerned, they don't give him any answers related to his work. He still wants to see the adrenal glands though, we just have to figure out what's going to be the best way for them to do that. I would really hate for them to say they HAVE to do an MRI for that. Hopefully, they can just do a CT scan instead. Or the ultrasound like Dr. S. wanted to do.

I just feel like we're still standing in the same place, not really going forward. But, I will say that both of the kids have been really increasing their reading skills! Although Nutty Buddy has been doing well for awhile now, he's increasing his speed and words every day. But Peanut has really struggled. But the other day at the Dr.'s office, she read 20 pages of "Hop on Pop." That was the most she'd read at one time. And since then, she's just asking for more. We went to the zoo the other day and she asked to bring books with, for something to do!!!

Soo... I just hope that we can get some progress this week!

More news about her MRI

Now that we've had a little time to research this and learn some things, I can write a little bit more. Most of her spine is fine, everything normal. However, they found that she has epidural lipomatosis. This is a tumor-like, fatty tissue that can develop around the spine. It's in the thoracic region in her spine. It's rare, found more in men than women, and usually not until later in life. Which obviously makes her case even more unusual. It can develop on the spine from long-term steroid use or obesity.

Now, in Peanut's case, she's had some steroids in her life, but not a long-term use of them. More than likely, I would have to say that she's developed this due to her obesity. So this does nothing to explain her weight gain at all, instead, this is a result of the added weight. It can cause further problems, both neurologically and physically. The best way to fix this is losing weight, yet we still can't get that to happen. Even though she's becoming more active, not fighting us all the time, and eating even better. There's always a chance that she'd need to have surgery, but we're not even thinking about that yet.

We got this information from Dr. K. who is filling in for her pediatrician Dr. S. who is on vacation. She was returning my call since I had inquired about the MRI results. I guess Dr. S. started her vacation right after Peanut's test. It was nice of Dr. K. to at least call me back and give me the information. I need to get the results passed along to the neuro-ophthalmologist, so he can check things out. And then when Dr. S. gets back next week, we need to discuss her ultrasound. The techs at the hospital told the central scheduling that they can't do an u/s on a 5 year old, for the adrenal glands. But I know that Dr. S. said that's the best way, and I'm thinking she had something specific in mind.

For today, we had a visit with her pulminologist and opthalmologist. Both said she's doing fine. Her breathing is good, no problems there, Dr. A. said she's all good there. And then Dr. M., her ophthalmologist, said that the patching of her right eye, to strengthen her left eye, is helping. He found a slight improvement in her left eye's strength. So that was a good thing! We just need to keep doing that. And we'll see both of them again in 2 months. We also did a 24 hour urine collection that Dr. S. ordered 2 weeks ago. This will be testing a bunch of her hormones to see if there's anything going on there. Which is something we thought that Dr. G., her endocrinologist, would have ordered a long time ago.

Sooo... I will update more once we get more information from the appropriate doctors. I really don't know who we'll be seeing to deal with this. We're still researching, reading, and finding out more info ourselves. Thanks for all the thoughts and messages!

We have some answers

I'll have to write more later, but I just wanted to say that I did talk to one of the doctors today, and they found some stuff on her MRI. I don't like to keep anyone hanging, but I need to process through this and find more info. It's not cancer or anything life threatening, I'll say that. But there's going to be some issues to look at and find a course of treatment.

No answers yet

I called Dr. S.'s office today because of some problem with getting the ultrasound they want. I had called central scheduling, and they spoke with the u/s techs, who told her that they can't get the adrenal glands on an u/s in a 5-year old. I thought Dr. S. said she wanted an internal u/s done though. Either way, they wouldn't schedule it. I need to call Dr. S. and see what she wanted. So I called the office, and ugh! She's on vacation! She won't be back until next week.

I told the nurse what I was calling about and she offered to have Dr. S.'s temporary replacement answer my questions about the ultrasound. I'm like, "umm... no thanks! I'm not bringing another doctor into this chaos, and trying to explain what's going on!" So now we have to wait until Dr. S. comes back next week.

I asked her about the MRI then too. She tried to look it up, but said she didn't find anything. She said she'd look into it and give me a call back. I haven't heard back yet though, and that was about 4 hours ago. We'll see if they call with anything.

In other news, Peanut has stayed dry for the past 5-6 nights now. We get her up to go potty before we go to bed. And last night she wore underwear then too. This is a big thing!! My poor Peanut has been wearing pull-ups for over 2 years now. And I know that it's something that is so beyond her control. Luckily, she doesn't really mind wearing a pull-up, she doesn't even think anything about it. So at least she's not fighting us on it. But it's got to be so much more comfortable to be in underwear.

Not much else to report at this time... she''ll see the optometrist and pulminologist on Tuesday. She hasn't seen Dr. M. or Dr. A. for awhile. Although nothing has changed with her breathing. And the eye issues are still being worked on, with no answers. Soo... still in a holding pattern.

Still no results

No results yet, from the MRI. I'm not sure when they'll call. And I honestly don't know if it's a good sign, or a bad one, that we haven't heard from them! I just want to find out something!

On another note, the kids are officially registered for kindergarten! Dropped off all their paperwork today. Of course, they don't start for almost 3 months. And I know that Peanut's going to ask me at least 9-10 times/week when they start.

MRI is done!

We had Peanut's MRI today. Got there on time and they were able to take her back to Radiology Prep. fairly quickly too. And they even got her back to the MRI room on time. But then, we were delayed 30 minutes. They had an extremely difficult time getting an IV in her. They had given her the numbing cream to help, and they did it on both arms, both hands, and both feet!! They had to try 5 times, including the specialist. And my little Peanut - so odd!! She got upset when they made her lay down, since she couldn't sit up and watch them do the needle work. Crazy kid!! Of course, mommy held her hand, but just kept her head turned away!! I don't do needles!

They finally came and got us about an hour or so later, a little more actually. And then she was sitting up, talking, asking for food, being her normal stuff. In fact, we walked back to recovery and they were saying she was so good that they were going to move her to the second recovery area. That's where they give her something to eat, make sure she's moving OK, all that... And they got us out quick! She just rebounds pretty well, so she had some pudding, a couple of cookies, and we were on our way.

While we were there I picked up the referrals for the abdominal ultrasound they want to do, plus the 24 hour urine catch. So now I have to call and schedule the ultrasound. And I'll wait until next week to do the urine collection too. The order said about 5-6 different hormones and such that they'll be testing for. Of course, hubby and I thought it was odd that they haven't checked these things before. And obviously we don't have any results yet. I don't expect any for a few days. Especially since tomorrow is Friday and then the weekend. But we did get the CD copy with all the images. Only about 200 this time.

I'll be sure to update as soon as we know something. Just glad that this day is over, I'm exhausted. I could NOT fall asleep last night!! Oh, and of course Nutty Buddy enjoyed another day with G&G! They took him to an outdoor nature center and then to Portillo's for lunch! It's so great not having to worry about keeping him entertained when we have to spend these hours in the hospital!

MRI is set for tomorrow

So, we thought there was going to be a last minute snafu, but we're all good. Her neuro-ophthalmologist wanted more done with the MRI, but her pediatrician Dr. S. thinks that an MRI on the abdominal area isn't the best way to go. He wanted to see about this certain tissue, but instead, they'll do a rectal ultrasound. Apparently it gives them better results for this hormone secretion than an MRI does. Plus, they'll do a 24 hour urine collection again too. They did that to check for Cushing's Syndrome a few months ago.

This means that tomorrow will just be a cervical spine MRI. Not sure what that will tell them. It's possible that it will give them answers for the nystagmus. But, who knows! I've given up thinking that each test will give them any sort of answers, since we never seem to find any. And yet I continue to hope too.

I'll update after tomorrow we get home.

Update from the neuro-ophthalmologist appointment

So, we spent 3.5 hours with Dr. B today. He was a really nice man, very thorough, extremely knowledgeable and we felt that he was really a great doctor. He did a lot of the same type of testing that the other eye docs have done, but obviously, with other thoughts in mind. When he was checking both of Peanut's eyes, then we could really see how much jumping goes on in each of her eyes. So it's not just the left one, the right one has it too.

We did learn that she has downbeat vertical nystagmus, which is certainly not that common, but the downbeat is better than the upbeat. Basically it means that her eye will move up slowly, but then move back down really fast. They categorize it based on which direction the eye jumps fast. So hers does it going down. Which is also better, it leads to less problems with the tilting of the head.

As for now, we don't have any answers on what's causing it. He's trying to determine if it was an acquired nystagmus or congenital. He's thinking it's more than likely congenital, meaning she's had it since birth. It's just one of those things that you don't necessarily notice, unless you're looking for it. So we can't say for sure how long it's been going on. We know that most likely about a year. But we were so worried about the other health issues, that we didn't get to the optical stuff until later.

He did give us several possibilities. And of course, they run the gamete. It could possibly be something that she will have to live with. As of now, if that's the case, then he wouldn't do surgery at this age. Her brain may have already compensated for the difference in her vision, but as she gets older she may have some more cosmetic reasons to correct it surgically. Another thing that he mentioned was something known as the Arnold-Chairi malformation. This has to do with the a relatively common syndrome involving displacement of the cerebellar tonsils below the level of the foramen magnum. It's all the technical stuff I got from another site. But hopefully the MRI will be able to show some of these things. There were some other things too, but honestly, there was so much to absorb. The worst case scenario is that there's a tumor of some kind. And he did mention neuroblastoma, which is a cancer that happens in children.

Soo... now we have to wait until the MRI at least. Then we can hopefully rule out some things, or even better, have a direction on which to go. And this doesn't even have anything to do with the weight issues. At least, not that we know of. So we have 6 more days until the MRI takes place. We also have her ophthalmologist apt. in about 2.5 weeks. She's not scheduled to see Dr. B. again until July 10th. Of course, this will all depend on the MRI results. If something shows up, then he'll bring us back sooner.

Busy days ahead

Tomorrow, the kids have their open house for kindergarten. As usual, Peanut is nervous about it all. She doesn't think she wants to go to kindy next year. I've tried to explain that she'll get to have art, music, computers, and gym time, which makes her happy. But the thought of being in school for more than the 90 minutes they currently are, makes her a little uneasy! However, she does enjoy doing things, so I know once she's there, she'll have fun. And Nutty Buddy is just fine. He doesn't usually worry about much of anything.

They also have their dentist appointment after that. Peanut's been asking when they were going again, since their last appointment. It's nice that she's exciting about it, considering my own fears of the dentist!! But she loves it. Plus, she'll get to show off the 2 new teeth that she's gotten in over the past few months. Nutty Buddy doesn't like that he hasn't lost any yet, and I just tell him that he's got really strong teeth, so they're hanging on for awhile yet.

And of course, after all that is the nuero-ophthalmologist appointment. As least Nutty Buddy is staying with G&G, so he doesn't have to sit in the office there for the 3-4 hours we'll be there. I'm a little nervous about it. Just wondering what they're looking for, what they think is going on, where the next step will be. I certainly trust the doctors, that's not it at all. But, nobody's told us anything definite along the way. I imagine if they had some inkling, they would have said something. So, we'll just have to wait and see what they say on that day.

On a side note, my computer was messed up for the past few days. And I'm so happy to have it fixed!! Went to the little shop that we'd been to before, and $27 and 45 minutes later, it was fixed! Like someone said, getting anything fixed for $27 is amazing! But all of my stuff is back, my toolbars are working, things are good again!

MRI has been scheduled

So we'll be going in on the 28th for another MRI. This time, they want to take it over her brain stem and spinal cord, with and without contrast. I honestly don't know exactly what they're looking for. And once again, she'll have to be intubated. Daddy is going to try and be with her this time too. We'll have to see if G&G can watch Nutty Buddy so he doesn't have to sit up at the hospital.

Peanut has to be up there by 11:30 to check in, then the MRI is at 1:00 p.m. Which kinda sucks, cuz she can't have anything to eat or drink that entire morning. Poor kid! And she knows that she can't have anything.

Should be scheduling her MRI soon

Talked to Dr. S. today and she gave me the info to call to set up the MRI for Peanut. It's going to be of the spine as well. Originally, they said the brain stem, but it sounds like they'll get more while they're doing it. Plus, it'll be with and without contrast. I'm not sure what they're looking for. Honestly, anything involving the spine makes me nervous and worried. I'm sure they're looking for more of the causes with her vision and the nystagmus. I don't see how any of this will be related to the weight issue. But then again, who the heck knows!! We see Dr. B. next Friday, he's the neuro-ophthalmologist. I'm not sure if we'll get this MRI done before that visit.

On another note, my own health issues finally caught up to me. I had a root canal started back in September, but never went in to get it finished. It had been fine for all this time, until the past weekend. I managed to get in the dentist yesterday so he could clean it out, replace the temporary filling, and set up the next appointment in 2 weeks.

I just hope the next week goes by quickly so we can get to the N-O appointment. Being a minimal 3 hour apt., that should be interesting!

Had a follow up apt. today

This afternoon we saw Dr. S., our NEW pediatrician. I even scheduled their back to school physicals with her today, so that they're set! Anyway, she listened to her lungs, said they're still not perfect, but definitely better than they were in the hospital. And I have to say, Peanut's done so good with her meds! She had to take an oral medicine, that was only in pill form. So she had to swallow 2-4 pills each time. But she finished them today. She still has the oral abx. to finish, but that's a liquid, so it's easier.

Dr. S. did say that her chest CT scan came back clear and normal, so that was good. And she's going to look into scheduling her MRI. She wants to talk to the neurologists to see if they want it done before the eye specialist or after. She's not sure if the neuro-ophthalmologist will have more scans that he will want. Since Peanut has to be intubated, not sedated, they want to make sure that they do as much at one time as possible. So far, it'll be her brain stem and the hypothalamus I think. But she told us to call her on Friday if she doesn't call us before then.

I must say, I did not like Dr. S. the one time we saw her for a sick child appointment about 3 years ago or so. I thought she was somewhat off, that she wanted me to diagnose my child. But I've certainly come to like her much more. Plus, she's been seeing Peanut in the hospital, so she's been familiar with her history and how she presents when she's so sick. And I like how she said what she was going to do, and how we should call her if we didn't hear from her. And that she wants to ensure the MRI gets all the imaging they need at one time!

So, I think we'll stay with this office for now. I was totally ready to switch offices. But, as long as we're getting this better care and service with her, I'm willing to stay. I didn't like the thought of changing, simply cuz all her history is there, plus it's her hospital, so that's good.

Day 1, post-hospital

We made it through the first day at home, after the hospital. Both kids are doing just fine too. The little Peanut is totally herself, no problems at all, just her normal attitude issues! But she slept OK last night. She had Daddy in there, which she complains about. However, we had the home health care company come out today and they set the alarm on her BiPap now. So, this means we don't need to be in there all the time. If it loses the seal or if she pulls the hose off (which she has), the alarm goes off after 15 seconds. It's just one less thing that we have to worry about now. We also have the band-aid style Pulse Ox thing, so we can keep it on her toe now.

We also got a wonderful surprise today! My good friend J. came over, she said she had something for us. Well, the moms in my twins club, a bunch of them got together to chip in for gifts for us. They gave us gift cards for Target, Shell gas, Jewel, Jimmy John's, and another local restaurant. And some chocolate for us!! Oh yeah, and some coloring/craft things for each of the kids. It was so unexpected and greatly appreciated. Just so sweet of them!

For us, it's mostly been getting back into the swing of things. It's so odd being gone for this many days. Although I was at home almost every night, I just didn't get anything done. So today was catching up on bills, making all the doctor's calls, grocery shopping (well, had to do that yesterday), and cleaning up the house a bit. Oh yeah, and laundry! Blah!!

The most important doctor, the neuro-ophthalmologist is scheduled. And it's only 3 weeks away! So that was good. It will be a 3 hour appointment too, so G&G will watch Nutty Buddy! That's way too long for him to sit there. And we were told that it would be really long, lots of tests, lots of machines, so it's better for just mommy & daddy to be there with her. And then she'll see the Pulminologist in just over a month. And her pediatrician next week. Oh yeah, and not Dr. B.! We told Dr. S. who she had been seeing in the hospital, since she did rounds there, that we'd rather see her. Plus, we didn't want to see Dr. B. anymore, anyway. We didn't come right out, but just hinted at the fact that we weren't comfortable with him.

She also mentioned that she had heard whispers of a rumor that we were looking for another endocrinologist for a second opinion. We told her that was true, and again, somewhat explained why. And although we seem to be moving away from the endocrine issues, and more towards the neurological ones, that it may not be totally necessary. But we're keeping the appointment, and she even agreed, she said it never hurts to keep another appointment and use it. And since it's not until July, there's no hurry.

Anyway, I think that's it for now... I'm sure I'll be slower with postings again. Not as much going on anymore. Thanks again for all the kind words!!

We're home!!

We got home about 2 hours ago, and she's already playing the Wii! She's really doing well when she's up and awake. I'm about to make some dinner here in a bit. But just wanted to at least let everyone know that we're home! We have many follow-up visits, she's on an oral steroid and antibiotics still, and still more testing in the future. But we just have to get her better from this illness first.

It looks like we're going home today

It appears that we may be getting discharged today. No real answers on things yet, of course, but we have more appointments that we'll need to follow up with anyway. I'll update more when I get a chance, just wanted to post that!