Crazy Week!

Well, that was sure a crazy week! Poor Elaina DID NOT like being back in the hospital. I don't think I've seen her pouty lip quiver as much in her whole life as I did the 4 days she was at Primary Children's this past week. We got to come home Thursday evening and she slept most of the following 24 hours. Don't get me wrong, she'd wake up.... but after about 20 - 30 minutes she'd drift back to sleep. Being in the hospital is exhausting! The good news is that she's stable from a Cardiology standpoint, and her numerous blood cultures and mucous samples never grew anything. So the conclusion is that she just didn't have any reserves to fight off her double ear infection and (assumed) strep throat.

To make matters worse, she didn't tolerate the changes in her feedings. We've put the increase on hold for now, she needs to get feeling better before we make any big changes. Part of the problem with the feedings, was that PCMC didn't have her "brand" of formula in house, and the person that orders them was on vacation. Hmmm. SO, dietary put her on a similar formula and then increased her volume from 700 to 1030. It was not a gradual increase, just BOOM, here ya go! Well, Elaina's body did not like the different formula, and the fact that the volume was increased so drastically caused us some grief. She turned into a little mucous ball, and was gagging and retching several times an hour. Because of her Nissen, she's unable to throw up, but that doesn't mean that her poor little body didn't try. She was so miserable. She couldn't even sleep for more than 30 minutes at a time and because of the aspiration risk, she didn't get put on her bi-pap for 2 nights. Poor baby. I finally brought in my formula from home and the doctor rescinded the order for increased feeds. Within 24 hours her oxygen requirement was down from 4 liters to 1.5 liters, and she was gagging and retching much less.

Once we were close to her baseline oxygen needs, we only had to wait until she was 24 hours without a fever. Well, we -Dr Black included!- were so anxious to get discharged that he wrote the orders and we were packed up and ready to go when the 24 hour mark hit. It was SO NICE to get home! I think Elaina was a little confused, because she was still unhappy when we first got home, but after her "rest day", she's back to her happy self.

Oh, and this morning, she's back to her 1 liter need of O2 and still satting high!

You go girl!

Thanks for checking in on us!

Hugs,
Hollie, Ben and Elaina

Time for a Tune Up

Well, as much fun as it has been to be at home, Miss Elaina decided that she missed all the hustle and bustle of the hospital and we're back at Primary Children's for a little "tune up". She's been battling a double ear infection for a few weeks, and did really well after the first round of antibiotics. We went back to the doctor last Monday for a 2 week follow up and her ears were looking good. She had a pretty good, uneventful, week until Sunday.... She woke up Sunday morning and was a little fussy. This is not normal for Elaina, she's a pretty mellow, laid back and happy girl, so when she's fussy she's got a good reason. She was really sleepy as well, in fact she took a 5 hour nap! After her nap I had her in her saucer and felt like I needed to get her out. When I did, she was really blue and her arms and legs were really cold. I took into the bedroom and snuggled her in a blanket while I pulled out the pulse ox... no reading... I quickly pulled out my handy dandy portable suction machine and suctioned quite a bit of gunk out of her nose and throat. She still looked blue. I increased her oxygen and finally got a reading on the pulse ox. 72%. Not good, especially on increased O2. Her legs and arms were still cold so I tossed some PJ's in the dryer to warm up and took her temperature while I waited. 102.2 degress. Not good. I gave her some Tylenol and put the toasty warm pajamas on. Her sats went up to 78. A little better but still not great. I decided to put Ben to bed (not only because it was past his bedtime, but he was freaking out - silly boy) and I called the on-call doctor (because it was 9:30 on a Sunday night). He told me in no uncertain terms that I was to take her to the ER at Primary Children's. I called a friend to come and sit with Ben until my Mom could get there and loaded Elaina up. Once we got to the ER, they took one look at her coloring and scooped her away and put her in a room. Her ear infections have come back and we're pretty sure she's got Strep throat. In all the chaos of chest x-rays, and hustle and bustle of the ER somehow the culture wasn't done. The ER docs decided it was best to admit Elaina so that we could make sure that it wasn't a cardiac event causing her sats to drop so suddenly and so that she could get some good IV antibiotcs (it only took 2 pokes to get the IV and we still have it! knock on wood!) She had a rough night Sunday night with fever and a bi-pap mask that didn't fit very well. She also missed a dose of her Revatio (aka viagra - for her pulmonary hypertension) and we think that contributed to her rough night as well. She's currently on 3 liters of O2 (she came home on 1 liter) to keep her sats in the 80's. So far the Viral panel has come back negative, so hopefully it's just her ears and throat. She's coughing a lot more and seems to have a little more of a struggle to clear her secretions. We took a trip to Cardiology for an Echo yesterday and the cardiology team told me that her heart function still looks really good, so they don't think that her increased oxygen need is due to heart failure or a sudden event with her heart. I cannot tell you what a relief it was to hear that!!!!!
So at this point the general consensus is that her reserves are just a little low after fighting off a double ear infection a couple of weeks ago, so she just needs a little extra help with oxygen right now while her body is fighting. On a postive note, this has given us the opportunity to fine tune some of Elaina's meds and also increase her feedings, both calorie and volume, while under the watchful eye of doctors and nurses. Another positive is that Dr Black gets to be her attending physician, and although the in house team of residents is taking care of her, Dr Black is signing the orders and is in control of the labs, etc.
The goal right now is to be able to go home as soon as possible. We're hoping to get Elaina weaned down to 2 liters of O2 before coming home. I'm aiming for Wednesday, but we all know that Elaina does things in her own time and on her own schedule. We were supposed to have a Cardiology visit next week, but since she had the echo already, they want us to follow up in 4 - 6 weeks, once she's feeling a little bit better.

I don't have a laptop with me this admission, so I'll try to update when I can. Please pray that we get to come home tomorrow and that Elaina will once again show everyone how strong she is. So many of the staff her haven't seen her in almost 2 years and they are amazed at how big she is and how good she looks (even though she's sick!). I think she's feeling a little bit better today, she's actually given the nurses a few smiles! We're in room 3061 if anyone is at PCMC and wants to come say hello!

HUGS!!!!
Hollie, Ben and Elaina

Can it be?

I cannot believe that Elaina has been home for 1 month already! The time just seems to fly by! We've been keeping VERY busy! Between the med schedule, feedings, and visits from our Home Health providers, not to mention the day to day things like homework, laundry etc, I've barely had time to sleep. I've had good intentions to update the blog, but sleep has won out!

Elaina loves being home! She is such a happy little bug! Here she is in the kitchen helping Mommy fix dinner:


and playing with her toys...


She's still having a hard time establishing a good sleep schedule. I was SO tired one night that after an hour of unsuccessful rocking, I put her in her crib. I figured that she didn't get rocked to sleep at South Davis, so she didn't really need Mommy to rock her, right? Well, I thought she was asleep. Then I heard a noise. Many noises. I peeked into the crib to see this:


On her hands and knees, rocking. On the bi-pap. Looking like an elephant. (Elainaphant, hehehehe!) As soon as she was "caught" she flopped over, like she was ready for bed. I moved her up onto her pillow, and tucked her blanket around her, telling her it was "night-night" time, and within 5 minutes she was asleep. Silly little girl!


She's been getting LOTS and LOTS of floor time. She's still not crawling, but she is SO close. She can get anywhere she wants, by rolling and scooting and pulling herself. A couple of times she has tried to follow me out of the living room, so I know that full mobility is close at hand.



And Ben? Well, he takes every opportunity that he can to love on his sister. His favorite thing is to hold her while she's sleeping. She was napping on my bed early one morning (after a particularly sleepless night), and Ben came in for some morning snuggles. I had to get up to get some meds, and when I came back into the room, this is what I found:



And of course, one of the favorite things to do is cuddle while watching Nemo or Little Mermaid.



Elaina is in LOVE with her brother! She gets excited whenever he comes into the room, and she loves to pull his hair to get his face close enough to give him smooches!

She's had a little cold for the past couple of weeks. Either that or allergies, the doctor wasn't sure which it was. So I'm keeping the suction close and giving a few extra snuggles afterward. She hasn't had a significant fever, so the doctor isn't too worried, but I'll be taking her in again on Monday, just to be sure. She's been coughing a lot and pretty congested. Dr Black told me to increase her oxygen a little bit right now to keep her sats up, but otherwise just keep her suctioned and happy.

Suction does NOT make her happy.

Luckily, kisses DO!

Thanks for checking in on us!

Hugs,
Hollie, Ben and Elaina