Kindergarten, Watch Out!

First day of Kindergarten 

September 3, 2013

"When I grow up I want to be a nurse."

Emma Kate started Kindergarten today. She was so very excited. She had a little trouble with us leaving, but she did great. She was very happy when we picked her up and completely psyched for school the next day. I think she will make some good friends in her class. There seem to be some sweet girls that she talked about playing with. Her teacher is wonderful as well. I'm really looking forward to this year.

I know it has been quite awhile since I last updated, but as I always say, no news is good news. EK last went to see her cardiologist a couple of weeks ago. Her lungs are clear and she has been completely weaned off diuretics. She is now on 1 tab of aspirin, 1/2 tab lisinopril and 1 tab of aldactone each day. Dr. Cardis is very impressed with her recovery and she doesn't go back for SIX WHOLE MONTHS! That is the longest ever without seeing him. Or any doctor for that matter.

Thanks for checking up on our sweet girl! We feel so blessed with her amazing progress and we look forward to normal life ahead! :)

Home

Two weeks ago today, at this exact moment, Emma Kate was in the operating room.

Today we are home and I can hear her upstairs playing with her sister and brother.

Life is beginning to get back to normal. Of course, there are still a few things that aren't exactly "normal" in our routine. Emma Kate is on about 10 medications right now and will be for the next few weeks, I assume. Tomorrow she has a follow-up appointment with her cardiologist in Macon. She will have a chest x-ray and I think they will be taking off her steri-strips that cover her incision. We do no expect any surprises with this appointment. With the x-ray, they will be checking for fluid buildup on her lungs. And personally, I am a little nervous about it. Emma Kate hasn't exhibited any symptoms of fluid building up, she's on three diuretics and is eating and drinking normally. After the x-ray tomorrow, I will feel more at peace.

I do thank God so much for being so good. He is good in the good times we celebrate and in the bad times when we weep. So many people have told us that God is good. And we KNOW that He is. We know that He is good regardless of our circumstances. We are so grateful that Emma Kate is doing so well. The sound of her playing (and sometimes fighting) with her siblings is music to my ears. Thank you for your continued prayers and love for our daughter. We are completely humbled by your graciousness to our family.

Tomorrow her appointment is at 10 and I plan to keep the blog updated with her progress.

I took this yesterday afternoon. Emma Kate was begging to ride her bike. I compromised and let her ride the tricycle, so it wouldn't be as hard to balance. She rode up and down the driveway a couple of times and then went inside. That was enough for her. :)

Heading Home!

It looks like tomorrow is the last day here at Egleston! Yay! Praying for a clear x-ray in the morning and good labs. Thank you all for praying for Emma Kate and for all of us during this time. I'll update more in a day or so. Today has been awesome, but I'm exhausted! Goodnight!

Good Day

Yesterday was a really good day! One of Emma Kate's chest tubes was removed, as well as her pacing wires, and that made her feel a lot better. After they were removed, she took a long nap and woke up wanting to leave the room. We went out for about 2 hours walking around the hospital, to the family library, garden, gift shop. She was walking on her own better and faster and generally acting more like herself. 

Today her x-rays and labs looked good and in a couple of hours they will come in and take out the other tube! Hooray! The only thing she'll have attached to her is her telemetry purse, which analyzes her heart rhythm.  The PA actually told us that she will most likely be going home tomorrow! 

That makes us so happy, especially Emma Kate. She's ready to get back to normal. And ready for me to stop taking pictures every five seconds.

At noon, they will come in to take out the tube. Please pray that this goes well and there are no complications. She did great yesterday, so I anticipate things running smoothly. If you would, also pray that Emma Kate will be able to hold down her medicines and food today. She is MAD that she has to take so many meds. She asked me this morning, "Why do make me take these all the time??!" She's just so ready to be done with it all. 

Thanks for keeping up with her, I will post later about plans for getting her home! 

Better and Better

Things here at the hospital have been going well for Emma Kate. Each day gets better. Today her chest x-rays looked the best hey have been. All the fluid on her left side has drained off. She got a couple of new chest tube drains this afternoon which will hopefully help each side drain off faster. Before, both the chest tubes were connected to one drain. Now they each have their own.

Emma Kate's pain level has significantly gotten better. We've stayed on top of her Loritab and Motrin during the day and Morphine at night. She's starting to itch a little bit around her incision site, which is a sign that it is healing. Last night her dressing around her chest tubes was changed and I gave her a little sponge bath. Then I brushed her hair while she brushed her teeth. She wasn't real happy about the hair brushing.

Earlier in the day, we walked out to the garden for some fresh air and then checked out the movie Brave from the library. It was a good day. She ate well and slept well. Her little personality is shining through a little more every day.

Emma Kate is getting tired of the hospital, though. I don't blame her a bit, we are tired of it, too. Brooks had to run out the drugstore last night and Emma Kate asked him if she could go with him... poor thing. At bedtime she asks us when we can go home.

Dr. Alsoufi came at rounds again today and said possibly one chest tube could come out tomorrow. That's awesome. Once they come out, I think we have to wait a day or so for the x-rays to remain clear and then we will be going home.

Here's a few pictures from our days here at the hospital.

 Headed down at 5 am for x-rays every morning. Clearly, she loves getting up that early.  

 Headed out for a wagon ride.

Watching for the Nemo fish during our walk. 

 Some pretty heart-shaped leaves in the garden. 

 Checked out the movie Brave!

Watching her shows on the iPad while she eats dinner. 

Bedtime.

Update

Yesterday was a good day.
--Emma Kate started to get her appetite back yesterday--she ate and drank more yesterday than she has all week.
--We had several visitors yesterday, including her siblings and my mom. She has perked up so much with them here. They have missed her and she is anxious to get home to be with them. Brooks' cousin and her fiance also stopped by for awhile. They all brought Emma Kate gifts that made her smile.
--Her personality is coming back slowly. She hasn't been talking to us too much lately, but yesterday was much better. She smiled more and was a little more talkative.
--She walked several times to the potty yesterday, went for a wagon ride in the garden and watched a lot of tv.
--She's taking her meds, but still complaining about it.
--Dr. Alsoufi discontinued the IV fluids.
--Her heart rate is much better, ranging anywhere from 105-120, depending on her activity.

This morning has been decent.
--Emma Kate woke up in a lot of pain. Her chest tubes are super uncomfortable. Today we are going to work hard at controlling her pain better by giving her something every few hours. Please pray that the pain gets less and less.
--She took her morning meds without much protest. She hasn't eaten much but is drinking fairly well!
--She woke up for about 30-45 minutes, ate a little, drank a little and then went back to sleep.
--When she woke up, her heart rate was 140s-150, probably because of the pain. After meds were given and she got situated, her heart rate is reading 114!

Dr. Alsoufi, her surgeon, has been great. He has come in every day during rounds and given an update on how he feels she is doing. She's definitely progressing in the right direction. Her drainage is good, but before the chest tubes can come out, it needs to slow significantly. It has decreased each day, so we can only expect that it will continue to get less and less.

Thank you all for keeping up with our girl and for all of your support and prayers!

keep on keeping on

I've been meaning to update for awhile now, but things have been so busy the last two days. 

Everything with Emma Kate has been going well overall! She was moved to her own room on Wednesday morning, less than 24 hours after surgery!  Here she is all cuddled in her big bed.

She got up later that day and walked for the first time to the potty. She was so brave, but was NOT happy about getting up. The chest tubes bothered her so much (and continue to). She tried again to walk yesterday (pictured below) but again, it was super painful. You can tell by the look on her face how upset she is here.

This was taken last night before Emma Kate went to bed. Her color really is so much better!

Emma Kate has been doing well. She has been resting a lot in bed of course, watching movies, reading books, playing a little with a few toys. She has also had several visitors and gotten so many thoughtful gifts and cards. We are so thankful for all of our friends and family praying for her.

A couple of things we are looking at right now are her chest tube drainage, her heart rate and her level of pain. When someone has open heart surgery, they will have a tube or tubes inserted into the chest to allow the fluid to drain off. Apparently, chest tubes are incredibly painful. And this is evident in Emma Kate because she winces in pain when we have to adjust her in her bed or get her out for whatever reason. The drainage itself is expected to last a long time after a Fontan surgery. Possibly a week or a week plus a few days. Right now, the drainage seems to be slowing down, but there have been a couple of "clots" in the tube, which causes it to stop draining as much as it needs to and the fluid stays on the lungs. We don't want this. We want the fluid to drain off and dry up. We would ask that you pray for this drainage to slow down and remain clear. 

Emma Kate is taking several medications including three diuretics to help dry up the excess fluid. In order for her to stay hydrated with all the diuretics, she obviously has to be drinking a decent amount of fluid. But she isn't. She doesn't want much to eat or drink. She said she doesn't want anything because her throat hurts (probably from the breathing tube irritation). But naturally, she is a bird when it comes to food or drink. She sips and snacks all day, but never has been a big eater. This, in conjunction with the diuretics, is causing her to become dehydrated. Because she is dehydrated, it is causing her heart rate to jump. Last night her heart rate was about 155-160 bpm. She has typically stayed around 120-130, so that was a big jump. Because her heart is beating quickly, it's causing her to breathe more quickly and take shallow breaths. The shallow breaths lead to lower oxygen saturations. Last night she was in the low 80s (which isn't terrible, but not where we would like her to be). 

This morning, they started IV fluids to treat the dehydration. She isn't getting much (about 50 mils ever hour), but it has seemed to do the trick. Now at 7:35 pm, her heart rate is averaging about 130 and she's satting at 87-88. The goal is for her to be taking in more by mouth so she doesn't need to rely on the IV fluids to stay hydrated. So, I ask that you please pray for her appetite to come back. At least that she drink enough to hydrate her little body, but not enough to make her sick (her stomach seems to be a little sensitive). 

This is a slow healing process. She's honestly doing amazing only three days post-op and everything is moving a lot faster than I imagined. I keep needing to remind myself that she just had surgery on Tuesday!

Thank you for keeping Emma Kate in your prayers! We truly appreciate all of you.