Thursday, July 30, 2009

Neurology appointment this week

We finally got in to see Peanut's neurologist this morning and go over the MRI request that we've been waiting on since the Microcephaly Convention. He was definately in agreement that it seems like either a spinal cord issue or a chiari malformation. Her arms have mostly normal muscle tone, her legs have always been low tone. Now they are high tone. Her ankles are getting worse and worse, rather quickly. He says we need to keep her AFO's on more during the day now, not just when she's standing or walking in her gait trainer. He's concerned that her ankles don't bend well any more. :(

He put in for a full spinal MRI, and I am just waiting for them to call me back to schedule it. Hopefully it will be soon!

I also took Peanut to the pediatrician this afternoon, because she is covered in a rash. Tiny little pink spots everywhere. He said it's probably the tail end of whatever virus she had last week that ended her up in the hospital.

I hope the MRI is scheduled soon and we get some answers. I am so hopeful for something to show up that is repairable!

Wednesday, July 29, 2009

Just hanging in here ....

I was supposed to go pick up a blood sugar monitor this morning from the metabolics clinic, but I got a call telling me to wait. Our metabolic doctor is out sick, and he didn't leave enough information. What numbers are too low or too high for her, how often to check, how often to report in with her numbers, etc. All he said was for them to issue me the monitor and prescription for test strips.

Hopefully he checks his email when he's home sick, since the nurse sent him one. I am nervous knowing she could be getting hypoglycemic and we don't know it. Does it explain her grouchy spells? Her retching? Or perhaps she isn't getting low blood sugar. Who knows!

I hate the thought of making her bleed numerous times a day. :(

Monday, July 27, 2009

We're home!

I always forget how sucky hospital times are. Add in the strict no visitors policy and it's double hell! We got Peanut back on formula feeds, she is tolerating them fine. For now we are stopping the blenderized diet, to give her a chance to settle back down.

Her blood sugars were low during our stay, so I am waiting to pick up a glucose meter and test strips. I am NOT excited about doing this to her! Hypoglycemia is a symptom of her metabolic disorder, but it is one that she has never had before unless she was REALLY sick. She was not symptomatic at the times that they tested her yesterday, but her sugars were still low. We'll see if they stabilize now that she's home and better, or if she's truly having episodes.

After two days of IV's only, the retching stopped and she was fine. Her blood counts were all fine, but they are still saying it must have been some sort of virus. Whatever it was, I am glad it's over!

Thank you for the posts and prayers. I really appreciate them! And to Emily's mom from The Tender Scribe - I got the cross. It is SO amazing! Did you make it yourself?? It's gorgeous.

Saturday, July 25, 2009

Still in jail .....

All of Peanut's blood and urine came back okay, still waiting for the urine culture. They don't expect anything will grow though because her white blood count was only a teeny tiny elevated. They are thinking that she is at the tail end of some virus (with no symptoms all last week except gagging, retching, puking I guess?). There are lots of ketones in her urine, which they tell me makes you naueseaus. I can never spell that dang word. LOL

We are starting back on feeds this morning, but we have to start low. She will start at 30 cc/hr and go up by 5 cc's each hour until 50 cc's. She has to run for 16 hours total to get a full day's worth. Unfortunately, if you do the math, that means she will end her feed in the middle of the dang night tonite. Meaning one more night guaranteed. Blech.

Our hospital has a huge swine flu outbreak. They told me that half of the med/surg beds right now are swine flu! So the only people allowed to visit are parents. Not even siblings! This is making it difficult to switch between my husband and I watching Peanut, because what do we do with Monkey during that time? He's not allowed to stay in the lobby alone, and he's not allowed to go up to the floor. We can't leave Peanut alone in her room or she screams until she's retching (which they will say is a recurrance of her admit problem, not just normal Peanut behavior of course!). My parents who are my normal babysitters during hospital stays are on vacation. This is a pickle!

So that's where we are. Luckily her Upper GI showed that although the fundo is loose, it is intact. There was no reflux on the test, and thank heavens there was no hernia anywhere! This means no repeat fundo. YAY!

Please pray that Peanut tolerates her feeds well and we get to go home soon. Honestly, if she tolerates her feeds and is done at midnight, I'll push to go home then. The hospital sucks! The economy is killing everyone, and it was obvious here this week. The Child Life playroom is PATHETIC. They don't have a single baby/toddler toy that she would like. The toys they do have are all broken or missing pieces. It's really depressing. Thank goodness my husband brought a bunch of her toys when he came last night!

In less icky news, I am taking Monkey to the circus today. We were given the tickets by a friend who is taking her kids. That should be fun! I hope so, I am so dang tired that I might fall asleep in the middle. ;)

Thursday, July 23, 2009

in the hospital

We've been in the ER for almost 6 hours. Waiting to be moved upstairs and admitted. Will update in the morning hopefully.

The GI nurse just called me back

She asked what meds my Peanut is on for retching and reflux. (Evidently they don't review charts before returning calls) She said that she thinks we are on the best for retching. As I was talking to her, Peanut started gagging and retching. She had been fed almost an HOUR before. She started screaming and retching and I told the nurse I would have to call her back. Thankfully her home health nurse showed up right after that to help take care of her and calm her down. I called the GI nurse back, she said she doesn't know what to suggest and she will page our GI, who is on-call this week. Perfect. Except that she thinks he'll probably want to admit her for observation and testing.

I hate admits. Although on the other hand, it's better than waiting for days and weeks and months on end at home for authorizations. Perhaps an admit is the best thing right now.

We'll see what he says! We're off to PT/OT. Hopefully he calls soon!

Wednesday, July 22, 2009

Retched retching

My daughter is a chronic retcher. She has always been retchy, since she was born. Before her first fundoplication surgery, she was a puker. For a few months after the first fundo, she was a retcher with no puke. Fundo doing it's job! Within a few months, she was back to being a puker, with a paraesophageal hernia allowing 2/3 of her stomach to go up into her chest cavity. Fun times! After the second fundo surgery, she went back to being a retcher.

She retches daily. Mornings are her worst times, she wakes up retching and choking and will do so until she manages to throw up past the (loose but still intact) fundo. She will retch up gobs of phlem and yuck.

For some reason, it's gotten worse lately. She retches more than normal, and is excessivly drooly. She's not normally a drooler, even though she does have low muscle tone around her mouth. She is now retching hard enough to throw up at least one full feed a day. Not good when you're trying to get her to gain some weight!

I woke up at 2:00 am today to the sound of her retching and screaming. I went in to comfort her and give her more sleepy meds. How totally helpless I feel at these times. She looks at me with those beautiful eyes of hers and just begs me wordlessly to make it better. I can't. The reflux monster is bigger than I am.

I am worried about her recovering from the Mitrofanoff surgery, which takes place on her stomach, when she retches so much. I remember throwing up after my c-section and thinking I was going to split open and die. I can't imagine how she's going to recover while retching constantly. The urologist says to talk to the GI. So I am putting in a call this morning, but I know the answer is "We've never found a way to stop her retching, I don't think there's anything more we can do".

Poor Peanut. I wish I could take it all away!

What do you guys do for retching in your post-fundo (or even non-fundo!) kids? She is on nortriptaline for it, neurontin for gut hypersensitivity, and periactin for it as well. Without any one of these she is even worse, but none of them is the cure. What does YOUR kid take for retching and gagging? I am desperate at this point for anything!

Tuesday, July 21, 2009

Waiting sucks

I hate waiting. I like planning, having a schedule, and knowing what's going to happen, and when.

Right now I wait (impatiently) for the Mitrofanoff procedure to be authorized so we can schedule it. The urologist is booked until September, but is going to put us at the top of his cancellation list.

I want to do the surgery NOW. Today. Tomorrow. Not in two or three months! I want to do it and get it over with. Move on.

In the meantime, I want for them to call me with information.

Did I mention that I hate waiting?

Wednesday, July 15, 2009

I hate feeding issues!l!!

I am so defeated with Peanut's eating and feeding and everything GI related!! She can eat by mouth. She has the oral skills to do so. Sometimes she even seems to WANT to, until the food actually gets near her mouth. Sometimes she will rub her lips on food, like my Chili Cheese Fritos last night. She will not ever ever open her mouth for food though. If I squeeze her cheeks just a tiny bit she will open her mouth and I can pop something small in. Some of the time she will chew it and swallow it just fine, other times she just sits there looking miserable, drooling a ton, until it finally drools out. On this front, we had a feeding evaluation two weeks ago and are waiting on authorization to start back up in feeding therapy. From there we will probably be admitted for an intensive feeding therapy program.

Then there's tube feeding. I hate tube feeding. I hate feeding my child through a plastic device implanted in her beautiful soft stomach. I do know that it is what keeps her alive and healthy, and for that I am thankful. It's just so UGH!

She has been getting a blenderized diet for half her daily nutrition for a few months now. With the help of the dietician, we bumped it to 2/3 of her nutrition is food and 1/3 is formula. We're now down to only 8 ounces of formula a night, and the dietician is working on a recipe of food to get her completely off the icky unnatural Neocate Infant. It's the only formula she tolerates.

I keep telling myself that she is tolerating this well. Her hair and nails are growing like CRAZY on the blenderized food. It does make her more constipated, so she's back to a daily dose of Miralax, but she's pooping daily now.

I am lying to myself. She's not tolerating this 2/3 food and 1/3 formula diet at all. She's retching, waking up choking, spitting up on the bus to school, fussing a lot more than normal, and on and on. I tell myself it's because it's so hot lately, and she doesn't do well in heat. I tell myself it's because she has to get up earliere than normal for summer school, and after all morning is always her worst time.

I admitted to my husband this morning that this isn't working. It is what *I* want. If I have to tube feed my child, I want it to be FOOD. That is somewhat more normal. But she doesn't like it. And in the end, it's HER tummy and GI system that is dealing with it. My heart may like it, but her body does not.

So we are going back to the 1/2 baby food and 1/2 formula schedule, to see if she goes back to baseline. If not, I will have to admit defeat and go back to all formula.

Sometimes I hate that my heart wants what it can't have. :(

Monday, July 13, 2009

Summer fun with my boy

Summer is hard when you have a special needs kiddo. Monkey wants to do all the normal summer things. Parks, pools, zoos, etc. Most of that, Peanut can do also. But some things she just can't go to. Monkey has wanted to take his (demonic couch-eating) dog Hannah to the dog park. Unfortunately it is nowhere near wheelchair accessible. He also has been wanting to go to Adventure Playground, a big mud park. Also not wheelchair accessible. So we are taking advantage of the 4 shorts weeks of summer school that Peanut gets. Here is what we did last week!

We went to the mud park with Monkey's best friend. They rode rafts in a giant mud lake, slid down a slide into a giant mud puddle, and built stuff with hammers and nails.

On Friday, I took Monkey to the Dog Park. Before we went in, we stopped at this little restaurant in the park that serves dogs too! We ate a giant gooey delicious (calorie free of course!) cinnamon roll, and fed the ducks. And pigeons, and squirrels and rabbits! Monkey had a BLAST.

Then we walked around the lake to the Bark Park. It was so much fun. Hannah is a small dog, but she was bored on the small dog side so we went into the big dog side. She played fetch until she exhausted. Then she found a rope toy, which is her favorite. Monkey had so much fun playing with her.

Monkey found a dead Japanese beetle on the ground. He thought it was cool, and then it decided not to be dead! LOL It hadn't moved the entire time he picked it up (ugh) and played with it (double ugh). All off a suddent it started walking! (Oh my hell, boys are gross) He was in heaven playing with this nasty creature. Finally it flew off to my relief, and we were back to playing with the dog.

It has been so much fun spending alone time with my boy. He is such a sweet, loving kid! We are going to Disneyland on Wednesday and Thursday this week, to spend some time with out-of-town friends. It's going to be great!

Friday, July 10, 2009

This post is for Alicia!

Alicia posted a picture of her handsome little man Gavin pouting. I just had to post these pictures to show her how he reminds me of Peanut!

Pitiful, pathetic, sad, and cute as heck!! :) The pout picture is a true pout. The kissy face pout is her trying not to smile, when I'm teasing her about pouting! LOL

Thursday, July 9, 2009

Urology appointment

We finally saw the urologist yesterday as a follow-up to the VCUG. He reiterated what the doctor doing the test said - there were no signs of kidney reflux, which means the hydronephrosis is being caused by the neurogenic bladder not emptying. This in turns means that we need to increase the catheterizing even more. Which of course I cannot do on my own, without my husband or nurse. So, we're definately on for the Mitrofanoff procedure.

I asked him about an MRI of her spine, and he said to have neurology order it. Even if she has a tethered cord of chiari malformation that can be repaired, he said it won't help the neurogenic bladder. It could stop it from getting worse, but it can't be reversed. He says that either way, he is pretty sure she'll be catheterized for a very long time, if not forever.

So we are waiting on surgery authorization. He said he is booked solid until September! Geez. I explained that I can't cath her as many times a day as he wants, without this surgery. And then in a weaker almost crying moment, I explained that I am the PTO President next year and it would be a HUGE problem if she's in the hospital the first month of school. :(

We are going to be the number on case on his cancellation list. He said it's common for surgery to be cancelled during the summer, so he feels confident we will get in sooner than September. We just have to wait for authorization.

In MY medical news, I had a follow-up appointment with my spine doctor. The epidural injection we did a month back only lasted about 2 weeks. He wants to try it one more time, in a slightly different location. I am waiting for authorization for that also, so I can schedule. He prescribed me an anti-inflammatory and some muscle relaxers, but I can't take those while home taking care of Peanut!

I am taking Monkey to Disneyland a couple days next week, so the doctor wrote a note saying that I can't walk or stand for more than short periods of time. Hopefully this will help us get to through the lines quicker, or I will be in a world of hurt. I am excited though, Monkey is going to LOVE it!

Monday, July 6, 2009

The Climb

Have you heard this song by Miley Cyrus? Oh my gosh ... every time I hear it, tears roll down my face. I just love it!

Miley Cyrus - The Climb - With Lyrics - The most popular videos are here

Sunday, July 5, 2009

Waiting and waiting and waiting

Evidently the urologist isn't going to call me about the spinal MRI or the letter I faxed him. Good thing we have an appointment this Wednesday with him! It is supposed to be an appointment to go over the VCUG results, and plan the Mitrofanoff surgery. Only I am not ready to plan the surgery, without a full spine MRI.

What I told my husband I am going to proprose is this. Admit my Peanut to the hospital. Then do the MRI as an inpatient, because it doesn't take 2 weeks of authorization process that way, and another 2 weeks of scheduling time. She could have the MRI done inpatient immediately, and then we can go from there. We could either find a spinal or chiari defect, and fix it. Or we could NOT find anything from the spinal MRI, and we could go ahead with the Mitrofanoff.

Either way, being inpatient to begin with would make this process much quicker.

Cross your fingers that the urologist is open to my suggestions!!

Thursday, July 2, 2009

Check out this website for giveaways!

This pretty little girl named Lily is offering some giveaways this month on her site. Be sure to check it out!

Wednesday, July 1, 2009

My Monkey Boy had a birthday ....

I cannot believe I am the parent of a NINE year old! Geez .... it really does go by so fast. I know, cliche as heck, but true! He is now obsessed with Pokemon as you can tell from the party pictures. :) He is going into fourth grade and reading at a 7th/8th grade level. The boy is smart! I keep telling him that by the time he gets to high school he's going to be smarter than me. :)