Friday, September 22, 2006

Life is like a box of chocolates...

First I'll give the new on Emma. She had two REALLY great days with the reflux, she didn't really spit up, was happy, slept more, etc. Then...a turn for the worst the last 3 days have been hell. Yesterday it took her an hour to eat a bottle at the mall and about an hour later she spewed it all over me and thr ground. It was a large amount. She was also quite irritable. when we got home she would take 2 ounce here and there, nothing major and was CRANKY. Last night she only woke up twice which is GREAT but when she woke up for the day I could tell she was in pain and I gave her a bottle burped her. she seemed ok. about 5 minutes later she threw up the entire thing. I don't think that amount coming up can even be considered "spit up" She is also on her new meds and while I think sometimes they are helping, I also think they're not seeing as she's still cranky, still spewing, and still not acting "happy". If she's still like this on monday I'll put a call into her g.i. and her ped for a weight check. On a good note she has been discharged from occuptaional therapy because 1) It's hard for me to get there will lily as well and workin around everyone else appointments. 2) She has shown me what I need to do to work with her. 3) She just about on par for her adjusted age. YAY

Onto me. I've had migraine type headaches which are progressively getting worse and lasting longer. They are not touched by anything over the counter and even some prescription things they've tried Midrin, tylenol with codiene, Maxult, and Both a shot of toradal and oral pills have not really touched them. The last one lasted 4 days. I cannot function when I get them and have had to have Sean come home from work. So after this last trial with the maxult and the toradol my doctor felt she should send me to the nuerologist.

So my appointment was today. I was fully expecting her to say they were just migraines and not anything else. After getting my history and complaints she said "Well, sounds like classic migraines" but let me check you out anyways. She made me walk acros the room and back, then do the same thing heel to toe (I had balance issues, not horrible but not great. I don't think I could pass a sobriety test) Made me close my eyes and she touched both feet with this vibrating thing. On the left foot I felt it on the right foot I thought I *might* have felt it but wasn't sure. Turns out I told her that I felt it about 10 seconds after she took it off my foot..Hmm. So I climbed up on the bed thing they have in doctors offices and she had me turn towards her she checked my eyes for dilation with the light. My left eye dilated far more than my right, so she checked again and the same thing. She had me open my mouth and wiggle my tongue back and forth. That was in working order. She di a bunch of pull here, don't leet me push you her, don't let me full you here. My left side has great reflexes. My right side is not up to par with the left and is "concernable".

Diagnosis: Unknown, hopefully just migraines and she would not discuss further. She wanted an MRI ordered because of the localized left frontal headaches and the reflex issues on my right side (The left side of the brain controls the right side of the body), as well of the over dilated left pupil. I asked her what all this could mean and she said that after my MRI that she would either call me for a phone follow-up or call me to come in for my follow-up. In the meantime she prescribed amergen to hopefully help if another headache comes on. It can take up to 6 weeks to get in for the mri, however she said she will put urgent on it and it should be more like a week or two. But I shouldn't hold my breath since radiology is busy. My other option is if it gets that bad again go to the E.R. Tell them I am being seen by a nuerologist, and am waiting on an MRI and they should be able to do it then and there. I personally refuse to believe it's anything else other than migraines, but none the less she was concerned which has me concerned and I will be until I have the mri and get the results. Hopefully.

Prayers and Good Thoughts appreciated.

Tuesday, September 19, 2006

G.I. Follow Up

A few things happened today. Today Sean and I started our medifast diets. the foods is pretty good but needs some "seasoning" and I ended up drinking 15 (8 ounce) glasses of water today. That is probably a first. And NO soda even though I am a pepsi addict and diet caffiene free is allowed. Anyways, I will be updating with my weightloss each week.

Emma had her G.I. Follow Up today. She is doing better overall. She is up to 12 lbs. 2 oz!!! She is spitting up less, Cranky less, and hasn't turned blue in over a week. I can't believe we have found something which is working. I am just in awe really. She ended up switching her to prevacid though to help even more and it's a solutab which dissolves quickly on her tongue so we don't have to fight to give her her meds. she also pescribed cerafate to coat her esophagus to help keep her from pain when she does have reflux. She is hoping this helps her start sleeping through the night and her crankiness in the evening when her reflux is at its worse.

Final good news for the day. At 7 months and 1 day old Emma Grace rolled from front to back AT the doctor's office for the VERY first time. She has continued to do this throughout the day. YAY Emma! I took a video and here is a link. It's a few minutes long and her roll is towards the end. Video of Emma Rolling

Monday, September 18, 2006

Sifting through Emma's records

Well, I've managed to get through 3 of the 5 folders of Emma's medical records (one folder from bellflower with nothing really remarkable in it) and the rest from The nicu. Uggh, After reading some of emma's medical reports it seems as though she was bagged with chest compressions (CPR) at LEAST 3 times that we were not aware of.Laymans terms she passed away and they brought her back. That make me so mad, but at the same time i'm wondering how I would have handled it at the time. The notes state that her heart flatlined, I take that as she passed away 3 times and was brought back 3 times. I had NO idea. ::sigh:: I'm still reading more. I have about 3 more HUGE envelopes to go through.It's therapeutic and disheartening at the same time.

On another sad note my Grandfather, Harold is in the hospital right now. He went by ambulance from his heart pounding out of his chest and sky high blood pressure. He has had heart problems since he had a quadruple bypas about 8 years ago. My mom called and let me know, but she didn't know a whole lot. I guess they sent out a test to see if it was a heart attack or what. Hopefully I'll know more tomorrow or within a few days. We're not even sure how stable he is. Prayers and good thoughts would be appreciated.

Sunday, September 17, 2006

Medical Records up the wazoo

Well, I got the medical records from all 3 hospital stays for emma from both hospitals. I ordered them because we needed the ph probe and sleep study results from Bellflower and it was easier for me to get them than her doctor since Orange County and Los Angeles are not connected through the network yet. Anyways, I ended up requesting my record as well to see if there is anything that was "missed" or not told to us regarding WHY she was born too soon. They arrived and there are 6 huge folders (one is not pictured since it camr the next day)

I have gone over my medical records and aside from some rudeness in the notes regarding my "pre-term" labor which the hospital didn't feel I was havng up until the night before she was born. (Good thing I had a competant doctor) there were some interesting findings. Mostly from the operative report and the pathology report from the placenta. It states in the operative report that it appears as though there was a 50% partial abruption however no old blood was seen. (which could ndicate a new abruption and it was found at the top of my uterus). Incidently, this is the same space which showed for amniochorionitis (infection. I have a feeling the two are correlated). There weer also multiple "knots" on the placenta. Places where the tissue was rather hard and also had clusters of cells which were filled with excessive amounts of fluid. Not sure exactly what that means, but my guessing in laymans terms is that I had a less than favorable, unhealthy placenta which most likely began to abrupt and was 50% by delivery. This makes sense to me and in this case it's better she came out. It also makes sense as to why I was told numerous times after delivery that if she had not been delivered that she most likely would have passed away within 24 hours. I'm glad I trusted my body and persevered through the triages less than pleasureable experiences. I will update more with any findings that are "remarkable". Now for some recent pictures.

Thursday, September 14, 2006

Up, down, up, down.

Well I put a call into Emma's G.I. She seemed SUPER irritable since being on the reglan. So she said that she thought that might happen and said we're going on the very last ditch effort. So she wants Emma on 5ml of prilosec twice a day and stay on the good start formula. We see her again on Tuesday. As long as Emma doesn't have any cyanosis (blue spells) we will hold off on the surgery. If she continues to have them then it's my understanding that we're heading to surgery. She also said to prepare for surgery just in case. So, I guess this it is. Sink or swim, hope this upping of the prilosec does its job.
At this point Sean and I just want her not to suffer. She is almost 7 mnths old and it's only getting worse, not better. So if this doesn't work, than we're ready to go for the surgery as well and accept the side effects that come with it. Prayers would be appreciated!
On a happy note here is Emma trying on her Halloween costume. We love fish in this house so she'll be a goldfish. Gotta love her face!

Wednesday, September 13, 2006

Pray for Sweet Emmie-Rose

There is a 23 weeker who needs some serious prayers. Her hospital is working against her and her survival is nothing short of a miracle. Please pray for emmie Rose and forward this link on to ANYBODY you think ycould help and pray for this sweet baby.

Monday, September 11, 2006

G.I. Specialist

Emma had her G.I. Specialist appointment today. Basically, it was on okay visit. She has been diagnosed with severe reflux and DGE (delayed gastric emptying). Her doctor upped her meds again to 5ml twice a day. She's also started on Reglan at the very lowest dose of .7 ml 3 times a day. Her doctor doesn't like prescribing this so she won't be upping it. She also had us start on Goodstart which is predigested formula. She goes back in a week to be re-evaluated. The doctor would like to try everything before surgery and considers Emma's a severe case. If in a week nothing major has changed than her prilosec will be re-upped. After that there's nothing much else to do except surgery. So, that's the long end of the short of it.

As for me I've had severe headaches for months now. They come and go. I've had them more often than not lately and was in urgent care last night for it. I got a shot in my butt of torodol and some pills to take home. I also have to make an appointment with the nuerologist for a CT and a MRI.

That's about it for now. I'll post more when we know more.