Wednesday, September 30, 2009

Ugh, ugh, and more ugh!

My beautiful sweet Peanut woke up at 3am, crying and in pain. They gave her chloral hydrate, she didn't fall asleep. They gave her tylenol with codeine, she didn't fall asleep. They finally came in with diladin (something like that). It stopped her pain, but still didn't put her back to sleep. The nurses are all amazed that she's still awake.

Awake enough to pull out her IV with her teeth. In the OR they placed one in her right hand, which is her chewing hand.

Then she grabbed the catheter in the new stoma, and pulled the catheter from it's adapter. So it's broken, we're waiting for the urologist to come figure out what to do.

I am so tired, and stressed out, and they just told me we're getting a roommate. A tiny baby. The idea of kids having to share rooms is so stupid. No one ever gets sleep, because if one wakes up it wakes up the other.

They should really serve margaritas in the cafeteria!

Tuesday, September 29, 2009

She's sleeping finally

She was in surgery for a little over 4 hours. It went smoothly and they were able to use her appendix. The Mitrofanoff stoma is not in her belly button because there was too much scar tissue there from her previous surgeries. It's really low, right above her diaper top.

Now the recovery. I'm told it's tough, but am hoping for the best!

Monday, September 28, 2009

I have a bored little poppet!

They decided that she didn't need all day bowel prep, they will just start it this afternoon. He thinks we might be able to get away with just an enema. Going to try and see what happens.

Surgery is scheduled for 7:30 tomorrow morning. Ugh! I don't think I'm going to be able to sleep tonite.

Saturday, September 26, 2009

Being admitted Monday

Peanut's surgery is scheduled for 7:30 on Tuesday morning. We have to be admitted at 7 am on Monday for bowel prep all day. That means an enema followed by GoLightly. I think the name GoLightly is a joke! She will definately NOT go lightly. She will go a lot, and all day, and hardly lightly. It's a messy icky thing. Don't you wish you were me on Monday? LOL Ugh.

Surgery is scheduled to take three hours on Tuesday. She will come out with a catheter in the new Mitrofanoff stoma, clamped off. She will also have a suprapubic catheter attached to a drainage bag. That will be used for two weeks, while the Mitrofanoff tract and stoma heal. How do you handle a drainage bag on a kid who crawls? A kid who rolls all around in her sleep and often disconnects her feeding tube? A kid who is NOT going to be happy sitting in her wheelchair all day at home? I hope they have some good advice!

I have been told she will be inpatient anywhere from 2 days to 2 weeks. Hmm .... nice variable there eh? I am planning for two weeks, so anything less will be awesome. I am packing and packing this weekend. When we check in Monday morning, it will look like we are going on a trip! Pillows and all. There's just something about having my own pillow to sleep on.

Please keep my Peanut in your thoughts this coming week. I'm told it's going to be rough!

Thursday, September 24, 2009

Some pictures from recent days

These are a mish-mash! Some from Peanut's EEG last week (look at that hair!). One of our poor pup's belly, with all her staples in it. She gets them out on Saturday. A few of Peanut's beautiful smile, just because! I don't have any of my Monkey boy lately because evidently 9 year olds don't know how to smile without looking goofaholic. LOL

Oh, and the surprise I woke up to this morning! Luckily she must have pulled it out right before I woke up, because it went right back in with no problems. I did about have a heart attack though! She's pulled it out a thousand times, but never in bed. It's always been during the day where we see it happen. This one scared me - I was sure we were going to end up the ER for stoma dilation. She sure likes to keep me on my toes!

Tuesday, September 22, 2009

Officially diagnosed with "Seizure Disorder"

I am sad. Heartbroken, pitiful, pathetic, and sad. :(

Peanut's EEG definately showed seizure activity, which is scary to me since we didn't notice any seizures during the 45 minute test. That means she is having many more than we originally thought, that we aren't even seeing. On the EEG, they were localized seizures but then they spread.

For those of you with the background to know and understand, here is what the EEG says.

There were definitive sharp waves existing over the left hemisphere, with a broader field and mainly encompassing the C3-P3 electrode at times with spread to the left frontal head region, including the whole left paracentral head region. During sleep, the above-stated left hemispheric paracentral sharp waves also had a tendancy to spread to the right homologous head region at the right paracentral head region and increased significantly in abudance. No pathalogical showing was seen during wakefulness. This is an abnormal largely asleep and brief awake EEG tracing, due to the left hemispheric epileptiform discharges, and revealed more localized to the left centroparietal head region and had a tendancy to spread to the right homologous head region, as well.

The above findings are most consistent with left hemispheric focal absence seizure with a tendency to be secondarily generalized.

SO. The neuro says that this means even on the Neurontin as at the higher dosage she is still having a lot of seizures we aren't seeing. He said that the Neurontin is probably enough to prevent the focal seizures from turning into generalized, but not to stop them completely. We are to keep a log of all seizure activity, including the staring spells she is doing frequently. If we notice that they are happening frequently still, we will either up her Neurontin or add another seizure med.

In the meantime, he is ordering an MRI of her brain. We did the spine last month, but haven't looked at the brain in a few years. He says there is always concern when seizures start out of nowhere, but even more when they are localized. You have to wonder what that little piece of the brain looks like. Could there be a lesion, a vascular formation, anything. Given that she is having surgery next week, the MRI will probably not be for a few weeks.

She seriously can't get a break right now! We had two years of hell, and then three great years. We said how wonderful she was doing ... no hospital stays, no surgeries, nothing. Now so much is happening at once.

Like I said, I just feel SAD. :(

Saturday, September 19, 2009

Dang, I wish I had thought of this earlier ....

I just decided tonite that when my Peanut goes in for surgery on the 29th, she should have some cute custom hospital gowns. Annabel always looks so adorable in hers! Of course, surgery is just over a week away so it's too late to order some on Etsy or anywhere and have them made and sent here in time. :(

Maybe I can get some after the fact, to have ready for the next visit to Club Med.

Wednesday, September 16, 2009

What a DAY!

I am glad it's almost over. I want a cold beer, a warm shower, and to go to bed soon!

This morning I got the kids off to school and came home. We had our backyard fence redone Monday and yesterday, so I was excited to see it all completed *it was dark when I saw it last night*. On the way home, there was a black purse on the sidewalk with it's contents strewn all over the place. Diapers, wipes, lipstick, birth control, etc. I decided to call the non-emergency police number, and they quickly came to get it. They told me not to touch it, so they could get finger prints off it if it had been stolen. Turns out it was stolen from someone walking a few blocks away last night, and dumped here after the bad guy rifled through it. That really stinks for the lady, although they told me she was thrilled to get it back, even in shambles.

Then we had a Jamba Juice fundraising sale at school. Since Wednesday is short day, I have arranged for JJ to come every other Wed. and sell to raise money. They were supposed to arrive at 11:45, as the kids get out at 12:20 on short day. At 12:00 they were still not there, and I was starting to panic. I called and was told they had just left the store! By the time they got to us, they had five minutes to set up before the kids got out. I was seriously mad and stressed! It worked out in the end, we just had to keep the kids in line calm and patient. Sometimes being PTO President is SO stressful!

Then I took Peanut for her every six month metabolic testing, and the Mecp2 gene test. She has to fast for for hours for the tests, and that is her limit due to the metabolic disorder. Usually the lab puts her at the front of the line when we get there because of this. Today they told me it would be a 45-60 minute wait. I said this wouldn't work, and they told me they would try and bump her up. 30 minutes later we're still waiting. I checked her blood sugar, it was down to 77. Everyone in the waiting room kept telling them when their names got called "Take the baby in my place!" but they said they were still processing her paperwork.

By the time they took us in she was grumpy, hypoglycemic, and dehydrated. They stuck her five different times! They got enough for her metabolic tests, but they don't think it was enough for the mecp2 test. That gets sent to Baylor University. Enough was enough though. Five sticks is too much for a little peanut! Her poor veins are so shot. She has had too many blood draws an IVs in her life, and even in the last few months. She has too many scars on the back of her hands, and her arms just blow. It sucked.

Then I forgot to get my parking pass validated so I had to pay $4 to get out of the lot. Grump!!

Lastly, I had to go pick up our three dogs from the vet's office. They were being boarded and Hannah got spayed yesterday. When we adopted her, the vet felt all over and said he couldn't feel a scar. He said she wasn't spayed, even had his assistant come feel her belly. When he opened her up yesterday to spay her, there was nothing there. He ended up spending twice as long as normal trying to figure it out, and she ended up with a huge incision. She's a Boston Terrier, so her stomach is small. It's so big and it's shut with staples. I have to take her in on the Saturday before Peanut's surgery to get them removed - as though I won't have enough to deal with that weekend! Evidently she was already spayed, there was just no scarring. What a pain in the butt!

Now I am going to go crack open a cold beer, and eat leftover pizza. Tomorrow has to be better, right?

Ohhhh and I forgot to mention. At the lab I made sure they remembered that Peanut is allergic to latex. They told me about this great new stretchy wrap that's latex free. Remember she was stuck FIVE TIMES - so five cotton balls with this wrap on it. We took it off before we left and she was covered in red splotches. Then around her eyes got all red. Turns out it's NOT latex free after all. They had tried to order some latex free kind, but they didn't get it. Great. She's never had a systematic reaction to latex (the eyes), only a direct reaction. That means her allergy is worsening - not good!

NOW I am going to get that cold beer. :)

It went smoothly!

We were sent to the regular pediatric floor, and they felt too nervous doing the sedation on my Peanut. Combined with her metabolic disorder making her need an IV, the double dose of sedatives, and her medical history - they decided to do the EEG in the PICU. Off we went to a private little room there.

It took two tense tries to get an IV in, and then we started. She slept for only 30 minutes, it was supposed to be a 45 minute EEG. The tech made me hold her still on the bed for the last 15 minutes. Uhm, not a great test then. She was moving and lifting her head and trying to sit up.

She didn't have any obvious seizure activity during the test of course. That would go against True Peanut Order! LOL She did, at the end, have weird movement. Who knows if it was a seizure or the sedation though? She kept turning her head to the left and twitching it a few times. Then straightening to look at me, then doing it again. She was really sedated still though, eyes rolling all over.

We see the neurologist on Tuesday, so we'll see what the test showed then!

Monday, September 14, 2009

EEG today

They want her sleep deprived. Honestly, I think we're always sleep deprived! LOL We had to keep her up until 11 last night, which was torture. She was so tired. Pulling out her hair, screaming, trying to pull out my hair. Then we had to wake her at 5 this morning. YAWN!

They planned on sedating her with 500 mg of chloral hydrate for the test, which is the same dose she gets every night at bedtimme. That would not work for the EEG. She is used to that dose, and wakes up easily with it. So they are giving her a double dose, plus a double dose of Benadryl. This is a lot of sedation, so they are putting her on oxygen and cardiac monitors for the EEG. A doctor will stay on the Pediatric floor of the hospital and not leave, and a crash cart will be outside the door. They said they will be ready to intubate her at a moment's notice.

Not very reassuring! I hope that the EEG at least shows what they need to see. She hasn't had a major seizure event like the first one, but we are seeing weird things that are possibly seizures, quite often.

Please keep my Peanut in your thoughts. We need the sedation to go smoothly, with no intubation, and her waking up quickly when it's over.

This stuff never gets easier on us moms, does it!

Saturday, September 12, 2009

First Day of School Pictures

School started last Wednesday. Here are some pictures! My Peanut was so excited to get back to school. She sleeps on the bus on the way home, and then squeals and "talks" to us for hours after she gets home. She just loves going to school! She is in first grade this year, but will continue to be partially mainstreamed in the kindergarten class. She sure likes going for their Circle Time, where they do calendar and songs and books on the floor. She is a superstar, and the kindergarteners all love her. :) My Monkey started fourth grade. How is that possible? How do I have a fourth grader? WOW!

After we got the kids off to school the first day, me and some other moms headed down to Main Street. We went to a great little Hawaiian restaurant for breakfast and mimosas! Nothing says back to school like breakfast and mimosas at the beach. :)

The next pictures are from therapy the other day. There is nothing cuter than ball pit pictures! :)

Tuesday, September 8, 2009

My Monkey boy has a new motto.

We were listening to the radio this Labor Day weekend on the long and boring drive to my grandmother's house. Due to the holiday, the station was announcing "all Eighties, All Weekend!". My dear sweet Monkey announced quickly "Hey, that's my motto!" We couldn't figure it out and I said "Stop. Tell me your motto?"

"Mom, it's what the guy on the radio just said. All ladies, all weekend!"

Oh my hell. My son is a womanizer already.

Monday, September 7, 2009

Swine flu has me petrified.

It didn't, at first. I laughed at those who were panicking. People panic every year over the flu, or this or that. But H1N1? It sounded harmless to begin with. Now more and more warnings are coming out, and this latest article has me scared to death.

Swine Flu Poses Risk to Kids With Neurological Conditions

Seriously? 67% of the children who died of Swine Flu had a neurological condition. You know, like cerebral palsy or microcephaly or seizures. They might as well have titled it "Swine flu poses risk to kids like Peanut". :(

She is scheduled to have surgery Sept. 29th for her Mitrofanoff procedure. I know that our Children's Hospital is already flooded with Swine Flu. I am going to be neurotic about people washing their hands and using sanitizer when she goes in this time!!!

Tuesday, September 1, 2009

One more week of summer ...

The kids start school on September 9th. One more week! I have spent so much time at school already, getting PTO things ready. Being president is hard work!

Peanut had her GI appointment yesterday. She was up a little bit, almost back to where she was before she got sick. The good news is that the GI finally agrees that she doesn't need to gain any more weight! The dietician is through the metabolics office, and she wants Peanut to be always slowly gaining weight. The GI says that since she isn't growing in height, she doesn't need to gain weight.

That has been my point for over a year! He says that she is between 25-50 % on the BMI chart. Why would we want her over that? So I told the dietician that the GI doesn't want her to gain weight, so we are not going to up her Polycose. YAY! She ranges between 28-31 pounds all the time. It's enough for her to have some reserves in case she gets sick, and yet not be overweight.

She was supposed to go for a sedated EEG this morning, to follow up on her seizures last week. They cancelled it at the last minute because they needed pre-authorization that they didn't have. Now we are waiting for them to get the pre-auth, and call me to reschedule it. I am hoping it happens QUICK - because next week is the first week of school! I don't want her to miss, nevermind that as PTO president I really need to be there that week.

That's about it. It's really hot here lately. In the 90's and low 100's. Too hot! And muggy. We're not used to muggy. It's supposed to start cooling off tomorrow. There are so many wildfires around here too, the sky is gray and icky. The firefighters could definately use some coooler weather. Let's hope it cools quickly!