Emma's Endoscopy

We checked into admitting at 9 a.m. Em's last bottle was at 7 a.m. They had a room ready but no crib so we waited around until 10 a.m. and finally got a crib. So we went upstairs to the 4th floor. They got her vitals. Her weight , 13 lbs. 2 oz. So 10 oz loss total in about a week. My husband showed up then. Emma was still a pretty happy. Then we went to the treatment room to put an i.v. in. My husband stayed behind and I went. Emma started screaming as soon as we were in there. Poor girl knows by now what was coming. I told them not to even bother with her hands and to go for the left foot. So they did and sure enough first try got it in. She was upset for quite awhile but Daddy calmed her down and had her asleep on his chest in no time.

The procedure was scheduled for 11 but the doctor was late (she normally is but she's worth it). There was some issues with the peds room being used by another doctor who wasn't scheduled to use it so we headed up to the 6th floor which is an adult floor and not quite equipped for children, let alone infants. My husband and I were able to walk her up to the room. There were 2 adult nurses, 2 peds nurses, 2 G.I. doctors (ours and an adult one) and an anesthesiologist (just in case). My doctor apparently doesn't normally do scopes on children sedated or put under general under 1. I told her Emma would fight so they gave her a half dose of Verced. By the sound of it from the hall it didn't do much. They had me helping get on her nasal canula for oxygen (nurse had to run to the nicu for one small enough for her!). One of the doctors at one point asked if I was in the medical field. I laughed and said, before kids I was! So they kicked us out for the procedure. It lasted about 10 minutes. We came back in held her, calmed her down. They gave us a print out of a picture of the inside of her stomach. Nothing to excited.

Now for the results. She said the lining of the esophagus was more irritated and red than she thought it would be or should be. Emma is on max dose of prevacid, on zantac, carafate and mylanta. Irritation should not be present or very minimal. So we have to wait 42-72 hours on that to see if it is an allergy issue. I'll update again when we know. If it is than she'll switch to neocate. If it's not I'm not sure where we go from there. She DID however agree to Emma needing a g-tube. They wanted to place it today but she doesn't place them and the person who does is on vacation. So she'll be scheduled for one to be placed in a week or so when the person is back. Unfortunately, it will be at Bellflower where she was last at and we're not thrilled with their peds unit. Oh well, supposedly it's only a 48 hour stay or so.

So, we are thankful that we are all on the same page now. Hopefully, she'll start gaining weight, feeling better, sleeping better, and then I can sleep better as well. I just hope we can get this reflux under control because I know she is in so much pain. So for now, I guess it's a matter of "this too shall pass"

from today's events. Most were from before. One was in the elevator on the way to, and a few after. Not necessarily in that order. Pics of Today

She sits!!!

Well, at 8 1/2 months Emma finally sat "tri-podding" herself this morning for more than just a few seconds. YAY! She is getting so big and was just SO proud of herself. I think she'll be a whole lot happier once she is able to move. Hopefully this will let me post some pictures...

Emma's scope is finally scheduled!

Well Emma's admission to the hospital has FINALLY been put on the Calendar for monday the 30th. We have to be there at 9 a.m. She has to be NPO (no food) after 7 a.m. and she'll be having the scope done at 11 or 11:30 She said we did not have to take her off meds for this procedure. She also said she will not be going under general anestesia (as she has a past of ongoing apnea and bradycardia). My understanding is it is normally done under General anesthesia. I'm somewhat concerned about her having it not being totally under but also relieved as well.

Anyways, I discussed the possibility of a g-tube (feeding tube) with her and she mentioned that there would still be the risk of aspiration if we did a continuous feed overnight, and that if her reflux is "that bad" and nothing shows from the biopsy, like allergies or anything that she may go ahead and proceed with the nissen fundo/pyloriplasty surgery. Of course she would consult with us first. I'm not quite on board with the fundo but I know i'm tired of my baby being miserable and not being able to sleep for more than an hour or two TOPS at a time at night and getting most of her nutrition at night. I would rather "test drive" so to speak a g-tube and see if that helps some of the problem before jumping to the fundo. Any insight or ideas (if you've been through this or know of anyone) would be greatly appreciated.

A side note on me. I had the 3d catscan done. It was kinda cool. The guy doing it showed me the images and I could see the TOTAL blockage of my frontal sinuses. It was interesting and actually kinda scary. Anyways, that's out of the way so hopefully I'll here from the doctor within a week or so and get my surgery on the schedule. Pray it's not TOO close to the holidays. I'd like to enjoy them without being in pain or hindering anybody elses joy!

Here is a picture from last weekend at the beach. I haven't been posting many pictures lately since blogger has been acting up and not letting me!

Head and Neck Surgeon

Well, I had my headand neck surgeon appointment today. I went in fully expecting to hear take these super duper pills and come back. umm. Wrong!

I walk in there's a dentist type chair all kinds of probes, metal things, oxygen etc. My blood pressure was higher than it's ever been along with my znxiety level. He walks in gloves up and say I need to look into your sinuses. So he uses this "numbing spray" has me suck up through my nose and swallow. Nothing really felt different. I asked if this was normal. He said yeah sometimes. So he proceeds to pull down this light on his forhead and pull out the big long black scope. My heart was racing. He startes putting it up through mt left nostril first. I sorta grimmaced in pain, part discomfort and part pain. He keeps going until it reached what felt like right between my eyes. And he sorta tried to push buut no go. He pull back, up through the right nostril and a little her this timme and stuck. No go. He then wants to look at my voicebox. Tells me to swallow and breathe. Yep, not happening. Darn gag reflex. He got it though I guess. He pulls it out and snaps his gloves on. Sit on the stool and says "well".

I knew from the tone of his voice it wasn't good. He said "well the mri scan is not good enough for the surgery that need to be done. I'm sending you for a specialize CT scan which will take 3d pictures of the nasal cavities which will help the nuerosurgeon and I best plan out the surgery." So, me being in denial, shock or still uncomfortable (oh the numbinf medicine started working about then, go figure.)He then goes on to tell me that it's a risky surgery and that the complete frontal blockage especially a-symptamic is rare. GREAT. RARE. 2 words you really don't want to hear. He then goes on to tell my my nasal passages are unusually small, and being that the area arounf your nose is typically very thin that there is the added risk of poking through the cavity and into the cranial matter (brain). He said if this happen or looks like it might we will need to cut along your hairline peel back the skin and tissue and go directly through the front of your face.

Ok, so still not hearing that this surgery is going to happy I ask "So, what are the chance that I will need this surgery?" He said oh you DO need, you're going to have which is why I'm explaining everything and letting you know why we're doing the specialized CT scan. I think my jaw hit the floor. My friend from out of state was with me and she looked pale like a ghost. Anyways, They need specialized instruments a nueorosurgeon and the ENT Surgeon for the surgery as well as wanting the specialized CT scan available during surgery to help guide their placment etc. YIKES. So he said it will happen in December. No concrete date yet though. I then went on to ask if the surgery was really necessary if i didn't want it. He explained that it was a "disease of the frontal lobes" and that it was spreading and needing to be done. I was too shocked to asl WHAT disease so I need to call back so I can research it to death.

The good new is if the surgery goes off without a hitch I go home the SAME day. Obviously not if it doesn't. Bad news, is he says recovery can take up to 2-3 weeks and we should have childcare for the children and I should basically stay mild. He said afterwards I should not drive for at least 2 weeks and that my balance my be a bit off during that time. ::sigh::

Will this year ever end? It's one thing after another. I'll write more about it when i know more concreate dates as well as when I have time to process it a bit. Oh and I will try to have him take pictures! Why? Because, I'm weird like that!

Emma's G.I. appointment.

Well, we saw her g.i this morning. She could tell how tired I was. She said her main issues with doing a fundo are even if they tighten the esophagus she has delayed gastric emptying. So that would cause an array of problems and would't solve thing. So they would have to do the pyloric as well, which of course has it's own set of complications. If we have to go that route we will, but for now we're continued with the wait and see. she is 5 months adjusted age, 8 months real age. So she wants to keep on keeping on. I expressed that really I'm not sure how much longer we can do that and at this point want to procede with testing to rule out different things of course while waiting for the surgery, IF she even needs it. I also told her I wanted to try the hs blocker with the ppi. So she is setting up Emma to be admitted in the hospital. Either thursday morning to friday afternoon, or monday morning to tuesday afternoon depending on schedulng. She will have a scope with the biopsy, as well as as gastric emptying study. That is the plan anyways. So we're going on hospitalization #4. ::sigh:: I just wanted SOMETHING to show up that is an easy fix. I know it won't happen but one can hope right?

MRI Results.

Well, I Had an MRI for my frequent and long lasting headaches. The nuerologist sent the results to my primary car physician to handle. Apparently, my brain is completely fine but my sinu cavities are completely clogged and apparently pushing up into spaces towards my brai most likely causing the headaches. She made a point to let me know that she's not sure how I'm breathing, let alone not having ANY sinus issues, no couch, no congestion, no pressure, no NOTHING. Also that she has NEVER seen this before. So she wanted to send me to the head and neck surgeon, but per protocol it got sent to the ENT first at which point I'm not sure exactly what they'll do. She did mention some sort of biopsy to make sure it is "just" sinus stuff and not something else especially with how it looked on the MRI. So, I guess this is good and bad and I continue to worry until Oct. 20th when my ENT appointment is.

A small update on Emma. Her G.I. was out of the office the day of Em's appointment so it go pushed off until Oct. 10. We're having major crankiness issues. She is waking up every 1-2 hours, dream feeding, in between screaming and whimpering. I can NOT put her down or the screaming commences. She will smile and coo and talk and be "happy" while being held but will scream like she's dying when she is put down. Part of me wonders how much of thiis is reflux related and how much is just a high maintenance baby. With that said though, there are MANY evenings where even being held doesn't stop the arching of the back or the obvious pain. I feel SO SO bad for her. She on max dose of prevacid solutabs once a day (we gve in the evening when her reflux is the worst for the evening/night). Cerafate 1ml, 4 times a day. This is also max dose it's meant to coat her esophagus, ease the pain and help heal. And in between the cerefate we give 1/2 teaspoon of mylanta. So every 3 hours she is being dosed with something and it seems like it's not helping, at least not as much as it should. She is still puking, sometimes projectile and large amounts. Seems she's constantly oozing and her most recent trick is to Ooze from her nose. Yummy. It's just so so so frustrating. We're ready for surgery, but are treading lightly. We don't really want her to have to go through it but are seeing no other options. Last thing her doctor said was "well, she's gaining weight". Of course she is, she dream feeds ALL night long otherwise she would be LOSING weight. We'll see what she says at this next appointment. But we're tired, frustrated, and not sure when to say enough is enough and press the issue further. At what point do say her quality of life and pain issues are more important than the fact that she is gaining weight etc. It's just rough!

On the Caden front. He had his evaluation with the special education people through the school district. He will have a series of them and meet with their occupational therapist, speech therapist, have his hearing and eyes checked again etc. They are also observing him at his current preschool and will do so a few more times to get a better picture as well as speak with his teachers about his behaviors and any concerning behaviors. This process can take up to 60 days but is sometimes shorter. We'll see what he qualifies for, if anything. They want to place him in the school that is most appropriate for his level of functioning (which is quite high). So we are glad that the process is starting to move along.