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!

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. :(

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.

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. ;)

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!

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!