July 24, 2010

Whirlwind of a hospital visit

I was going to title this post:

To the ER, to the ER to buy a new shunt
Home again, home again jigeddy-jig......

But I wasn't sure if you would sing it like the nursery rhyme (to market, to market), and if you didn't, well then you would probably just think I was strange so I decided against it. But that is essentially what happened. On Thursday evening (July 22nd) Branden and I headed up to the hospital after Annabelle had thrown up 4 times and had a very hard and full fontanel (soft spot). She had thrown up once at about 1pm on her way to PT but I honestly didn't think much of it, and she had a good PT session. It was at around 4pm that she threw up again and became quite fussy. I then noticed her head and TRIED to stay calm. She threw up again and I was then pretty sure what was happening. I called Branden at work and then started getting myself, Annabelle and the boys ready for what was to happen next - a trip to the ER :-( I got Jack into the shower and then it hit me HARD!! I started bawling (no kidding), I was sort of freaking out that this was actually happening again. We had gone 5 months without a revision and I guess I got a bit comfortable and hadn't really thought much about it lately. Branden arrived home to me hysterically crying, cradling her on the floor - pretty dramatic I know :-( I'm sad to say that I scared the boys a little and I feel horrible about this. I did however snap out of it pretty quickly once Branden got home. I share this only because it seems so misleading to only blog about the good moments or the moments we are proud of and not the not so great moments. I am human (very human) and I don't always act as put together as I'd like, but that's okay. No one way hurt by my meltdown and realistically it probably helped me be a bit more calm at the ER which is where we headed after my WONDERFUL Mom got there to watch our boys.

Annabelle proceeded to throw up again (all over Branden) and then passed out - literally just zonking out before we left to the ER. The drive to the ER was horrible. Annabelle screamed the entire ride like she was being stabbed - no joke. It was scary and terribly sad. We got right in once again, thanks to our wonderful Neurosurgeon (Dr. Javaheri) who called to let them know we were on our way. I had called his office earlier and they told me he was off and that the on-call Dr. would be contacted once the tests were completed at the ER. I stewed about it for a few, then decided to call Dr. J myself (he gave us his cell # so I figured it was ok). I wanted/needed him to know since HE is her Dr. and knows her case so well. As usual he was great - he took my call, asked lots of questions, and told me he'd give the ER a call and not worry. He told me he was off, but not to worry he would come in for the surgery if need be. I later found out that he's not just off, he was actually on vacation - oops! He was kind enough however to call the ER to pre-check us in and then had multiple conversations with both the ER Dr. on staff and the on-call Dr. from his office.

She went from super unhappy, to happy and flirty, then very sleepy while we were in the ER waiting to see what the plan was. She had a CT Scan, chest X-ray, urinalysis and they unsuccessfully tried to get her IV started.

Here are a few pictures from the ER - playing peek-a-boo

Just hanging out with her Daddy

Checking out the monitors while Branden closely watches for her to put it in her mouth

We were admitted and moved to our room on the 2nd floor at about midnight. Then starts all of the questions all over again. It seriously seems like you answer the same questions over and over again - I really don't like that part (especially at midnight when I am hungry and tired!). They examined her and took her weight and head measurements - which was 1/2 cm larger than it ad been the week prior. The nurse was thankfully able to get Annabelle's IV started in one try. I didn't allow the ER nurse to try again after she was unsuccessful. On a previous ER visit they stuck her 4 times before finally calling the lab to do it. I become Momma Bear now when you start poking my daughter to many times! We also try and direct them to her feet since she doesn't have any feeling there. They allowed me to nurse her up until 2 am as everyone was under the impression that she had been placed on the OR schedule and would be having a shunt revision in the morning.

Thankfully, she slept well from about 2am - 8am, me not so well, but that's to be expected when you are on a pull out chair bed right in front of a door that continues to open and shut all night long (ugh!). Oh well, it could have been WAY worse. I actually don't have any complaints.

They next morning the consensus was that it didn't appear that the shunt was indeed malfunctioning. Her fontanel was soft, she was happy and alert. The PA for the Neurosurgeons office came in first with this info. and I was a bit shocked although I could see that she was doing much better. The thing is she has presented these same symptoms before but has always gotten worse and then would ultimately need a revision. I was concerned and confused. She said that Dr. J and the on-call Dr. would be discussing the test results and would let me know what the plan was within the next 2 hours. During that time I continued to watch how well she was doing and decided to believe in my heart that this shunt was actually working and that the night before had been a fluke - not an intermittent malfunctioning shunt.

So when the on call Dr. came in he spoke TO me, not WITH me. He told me essentially what the PA had said two hours earlier. He did explain that it is possible that the shunt is intermittently malfunctioning but doesn't believe so based on the tests and her overall demeanor (although this was his first time meeting our VERY happy little girl). Only time will tell he said. Thankfully, I was prepared for this and was actually ready to pack up and go home at this point because there was no discussing it - he just told me this and then left. Branden was still a little shocked as he had just gotten there and was still thinking she was going to be having surgery. If by chance you you were wondering, this on call Dr. is way more senior than Dr. J and yes came with that typical "holier than thou" attitude that you hear so much about from specialist, but in his defense, I am sure he is super good at what he does. I am glad I didn't have a lot of questions as I am unsure if he would have stuck around to answered them :-0

So once the Neurosurgery team signed off on her we had to wait for her pediatrician to see her and decide if she could go home or not. She still had a UTI they were treated her for with IV antibiotics but it was essentially what I was giving her 3 times a day at home so there really was no need to keep her. He sopped by, checked her out and agreed to get her out by 2 pm.

Here's the nurse doing her final examination and removing her IV

This is how happy she looked when I told her we got to go home and see her brothers - so sweet!

The fontanel stayed soft all day on Friday. Once we got home Annabelle took a 4 hour long nap, was awake for 2 hours then went back down for the night. Not typical if I do say so myself. She is either trying to catch up from the previous long and exhausting day or is very sleepy because her shunt IS malfunctioning.

She woke today (Saturday) and seemed fine for a while. She threw up three times - all while eating very small amounts of her favorite foods. She took a morning nap (not typical) and woke irritated. She wanted to be held all day and generally seemed to not feel well. Her head was soft though. At about 3 pm she started crying really, really bad and at that time we felt that her fontanel was hard and bulging again. We got her to calm to see if there was any change in her head - there wasn't. She then zonked out for about 45 minutes. When she woke, her head felt better but she was still irritable and not herself.

So what do we think is going on? Honestly, we don't know. We are confused and worried. She is still semi-awake right now (at 10pm). I nursed and nursed her and she just isn't settling down. Bran has been rocking her for the last hour and I still hear her making noises. It's probably the shunt, I guess we will just have to wait a bit longer to see. I will update again tomorrow night.

To all of those who knew we were heading to the ER and were praying and supporting us all night long THANK YOU. Words cannot express how much your love and support lifted me up during this very scary situation.


  1. Much love to all of you! I will try to keep up with your posts, but if there's anything you need (prayer, someone to vent to!), please e-mail me at laurita.tellado@gmail.com. Blessings to all, especially Annabelle!!

  2. Oh, what a rough rollercoaster! Sending so many prayers for your little Annabelle. I hope she turns the corner and you can put this all behind you without another revision.

  3. Oh gosh Nicole how unsettling to not truly know what is going on. How did she spend the night? i guess I will go check Facebook and see if there are any updates. I volunteered to bring a meal on Tuesday but I know you guys don't need them right now. I will be at Art's office though on Tuesday so I can always just do a Costco chicken run if you are just too tired to worry about cooking :) hugs

  4. Nicole, let us know if the boy would like to play with Lucas today, Sunday.

  5. OH wow, Nicole...What a mess! I would totally be thinking the shunt as well...I pray that she starts to feel better soon, and that you guys can figure out what's going on...so frustrating! Hugs!

  6. Love this post, friend. You've captured what being a mom of a sb baby really is. I an praying for you all. Let me know if you need anything. Love, Karen.

  7. Oh NIcole, thank you for sharing! I am sorry about all the back and forth. It must be so very scary. I would be rocking back and forth holding my baby all night every night. You are a strong amazing mama and Annabelle is lucky to have you. I'll be thinking about you...

  8. Snif snif - I know everyone has said all the same thoughts, but I just want to let you know again that we are thinking of you guys and love you. You ARE strong, no matter how emotional things get.. You are real, and your boys know it too - That's what makes you guys who you are! =) xoxo Chris