Sunday, August 19, 2012

:( 45 hours home... and we are back in the PICU. :(

We made it home (Thursday), our family was whole again. Maddie was so excited to have all of us under the same roof. Emma was swinging in her swing and looked so comfortable. I was preparing the med schedule trying to find some However her eye drops cannot be given at the same time and they are every four hours. Then her feeding is every three hours.. So my night was looking pretty busy. Kory's fingers are rather manly and that makes it hard to do the eye drops. So Mommy and Emma were going to conquer these next four weeks of eye drops.

As expected, Emma was extremely fussy and having a hard time adjusting to being home. She wasn't sleeping and I assumed it was from the change of hospital to home. Which happens every time we have the extended stay. She then threw up her midnight feed, I figured it was from being so worked up. She felt better and fell asleep. Her 3 a.m. rolled around and she was sound asleep with an elevated heart rate hanging in the high 160s.. Went ahead and ran her feed and she threw up as soon as feed was over. I was beyond suspicious at this point and looking for more signs of infection.. so I checked her temp and it was 101.3. Immediately administered Tylenol and called the PICU to see what my next step needed to be.
Our plan was then to keep her home as long as we could. Continue Tylenol as needed for fever, decrease feeds and see if she will tolerate. She tolerated 80mls instead of the 110mls. So that is what we did. By 1pm that following afternoon I would be calling back to the PICU to tell them Emma has vomited three of her last six feeds. I feel that she is needing or will be needing IV fluids soon. Mander was the attending on call and recommended we bring her in to the E.R. and he would come take a look at her.  We were headed back to the PICU 45 hours after discharge :(

Feeling super bummed because I didn't want to be away from Maddie anymore. We were headed back to St John's Children's Hospital to see if Emma had contracted yet another infection. She creid the entire way over and once we were in the E.R. she calmed down. It was like "Ahhh, Im here,.. bring on the good stuff (medicine).." Until those familiar hands (Mander and Amy) arrived to do the IV and examine her. She threw the biggest fit of her life. She was so uncomfortable she just wanted to be left alone. It was so sad. She is so strong but I cant even imagine that pain. On top of that, you have the fact that in all reality until about two weeks ago she wasnt having any sensory input other than touch. I couldnt imagine what a nervous wreck that would make me. Not being able to hear or see when someone is coming at you. Then all of the sudden, PAIN! :( :( :( Poor baby.

Again, although I hate being in the hospital.... I know this is where Emma needs to be and this is where she gets the absolute BEST CARE EVER! . . . This stay will hopefully be much shorter. Dr Rodriguez and Dr Mander are very on top of everything. We are waiting until tomorrow to see what the cultures show as far as how long she will need to stay in house and then how long she will need to be on oral antibiotics at home. Our goal is home as soon as possible of course.

This week was supposed to be a huge week for Miss Emma. She was scheduled to get her hearing aids on Tuesday.. however.. Emma will not be making those appointments this week. We will not be taking her on a strenuous trip to St Louis until this infection is gone and she is up to par. Although I really wish she could have had her hearing aids, her overall well-being is defiantely more important. She was also supposed to have her follow up for her cataract surgery this week and that will not be happening either. Mommy has several phone calls to make tomorrow as well as making some changes for TEAM EMMA.

---- We will be adding a few new specialists to TEAM EMMA this week... keep in touch for updates early this week. ---

*THANK YOU FOR YOUR CONTINUED SUPPORT YOU ARE ALLL SOOOO FANTASTIC! *

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