Post Op Day 9

Presley had a great night, and she woke up refreshed and ready to start our day. She ate some scrambled eggs and drank milk. We are thickening all of her liquids, and she is swallowing much better.

We then found out the plan for the day . . . blood draw, x-ray, and chest tube removal. We weren't sure how she was going to handle these procedures since she is definitely now very aware of what's going on. We got her dressed in regular clothes (she chose her purple tutu dress), and we blew some bubbles while we waited for the blood draw. This is a great activity to practice taking big breaths in and then blowing out. She is getting stronger all the time!

Then Erin from Child Life Services came in to help with the distraction technique for the blood draw. She brought in a special ipad with fun new games, and believe it or not, our little princess hardly even flinched! We were amazed at our girl's bravery! Way to go Presley!

Then it was time for a walk and a car ride downstairs for the chest x-ray. It is so good to be able to get out and explore!

Before we left the floor our nurse reminded us of a test that is done on every patient in the ICU. They are checking to see if each child is positive or negative for a certain bacteria. Apparently, it's not uncommon, and Presley did test positive. So, that meant we needed to be moved to our own room. We are basically being quarantined, and we were also told that we needed to stay out of the public spaces, a.k.a. the playroom. However, we can bring toys and activities into our room. This turned out to be a blessing in disguise. We have an awesome private room with our own bathroom, more space, and even a view. God is so good! We feel like we received a great gift. And as far as the no playroom thing, it's totally fine! Presley hasn't even asked about it, and we have had plenty to do to keep ourselves occupied!

After the x-ray, which Presley handled beautifully, we got to go all the way down to the main lobby and walk around. Presley loved it, and she especially enjoyed the big fish tank.

Once we got back to our room, it was time to go to the procedure room to have her chest tube removed. She got some heavier pain meds to keep her calm, and again Erin came with us to help with distraction activities. The special ipad really did the trick. She did amazing, and now she is tube free! What a relief! She was pretty tuckered out after a busy morning as well as having received the heavy pain medication, so she took a nice little snooze. Our sleeping beauty! Those pink lips amaze us every single day!

She woke up hungry, and David had ventured out to the store while she slept to get a few of her favorites. She enjoyed her Danimals drinking yogurt and her pink milk!

 

But right after this picture was taken, she started coughing and threw up. Poor baby! We're pretty sure it was a reaction to the pain medication she had taken earlier. We are glad that is all out of her system! She took another little nap, and then she woke up feeling much better. We had to go get another x-ray to make sure everything looked good after the chest tube came out. So, out we went for another adventure. After the x-ray, which looked great, we walked to Starbucks inside the hospital. David and I celebrated with iced coffee and our little one with her favorite chocolate milk!

On the way back to our room, we stopped by 8South, our cardiac ICU, where we spent many a day! What a blessing to have Presley up and out and looking so healthy!

Presley asked for pizza and lemonade for dinner . . . we can tell she is getting her appetite back since pizza is her favorite food! She did well eating and drinking, and her tummy seemed much better.

Our sweet nurse, Tori, came in to check on us, and she let Presley help her clean out her IV. She loved it, and said she is going to be a nurse when she grows up!

We only have one more tube to go, the feeding tube! Hopefully, if Presley can continue to eat and drink well, that can be removed very soon. We saw Dr. Marx today, and he can't believe how good his little patient is looking. There was even talk of possibly going home on Monday. We'll see how the weekend goes, and Presley will have a final echo on Monday. We're getting so close, and we trust the Lord for His perfect timing! God has been so close to us and so kind during this journey. He gives peace that surpasses understanding, and He gives strength in our weakness. We can't stop thanking Him for the hope and healing He has given to our precious daughter! She is a marvel!

"I have become a marvel to many,
For You are my strong refuge.
 My mouth is filled with Your praise
And with Your glory all day long."

Psalm 71:7-8





Post Op Day 8

We were woken up this morning at 5:30 a.m. for an early morning x-ray. Little Miss Presley was less than thrilled with this idea! Although her feistiness made the process a little more difficult, to us it was a sign of the real her. We got through it and then waited to hear the results. Dr. Marx came in early to check on us, and the first thing he said was, "She needs to move to the floor! She will be so much happier!" Of course, we completely agreed! Happiness can be the best medicine! He said her x-ray looked good, and she did so well last night breathing on her own. He is the kindest man, and we truly felt like he was Presley's biggest fan. However, the final decision to move out of the ICU rests in the hands of the team of doctors that preside over the unit.

Dr. Emani also came in to see us, and he thought everything is looking really good too. We asked him what was still keeping us from moving out of the ICU, and he looked right at us and said, "There just isn't a bed available." Well, if that was the only reason, we were okay with it! Presley's lungs are looking good, all of her vitals are stable, and her heart function is great. As soon as a bed opens up, she will be ready to go. Her left chest tube still needs to stay in for one more day to watch her fluid output, but that is fine. The doctor in charge of the ICU came in to check on Presley, and she agreed that everything looked good. Within a matter of minutes, our nurse for the day announced the most wonderful news . . . a bed had opened up, and we would be moving to the floor out of the CICU! Praise the Lord! What a huge relief! We were all so excited! This is a major milestone, because this means we are so much closer to going home!

When we told Presley that we would be moving to a new room where she would be able to go to the playroom, she said, "You're kidding me!" She could hardly believe it, and we're not sure if she meant it like "no way, you're pulling a fast one" or like "this is amazing!" Either way, it was just so funny, and our Presley is continuing to show her true colors!

We also got the go ahead to order Presley some solid food to give that a try. She was tentative but ate a few bites of scrambled eggs and did fine. She also had some sips of water, and as long as she sits up straight, she was able to swallow without coughing. We are hopeful that in the next few days, she will just continue to improve. It really doesn't seem like there is any kind of a problem, but she just needs to go slowly. After being on a ventilator for almost five days, it just takes time to return to eating and drinking normally. Once we got settled in our new room, we ordered her request of noodles with red sauce, jello, and chocolate milk. She did great, and we think she is starting to remember how it feels to eat and drink and how yummy food is! She will start to feel better and stronger the more she can get nourishment into her body. She will probably still sleep with the feeding tube, but we hope that can be removed soon.

After lunch we headed to the much anticipated playroom! She practically ran when she saw it! It was the cutest thing! She played to her hearts content, and she was just so happy! Her energy level has a ways to go until she reaches her full potential, so we had to remind her to sit down and play instead of standing the whole time.

It was so good to see her playing and having fun! And it was so good for all of us to be out of that ICU room and to get a change of environment! However, while there we met some of the most incredible people who took care of our girl, and we will be forever grateful! We have had many opportunities to tell our story, and we pray that God will use it for His glory! And now we will continue to take this healing process one day at a time. For today we are thanking God that we are one giant step closer to home!

Post Op Day 7

Today marks one week since Presley's surgery! Last night we got to give her a much needed sponge bath and dress her in her own nightgown! She was a happy camper before she went to bed!

After sleeping with her mask on last night, her left lung looked good on the x-ray this morning and is filling with air much better. So she shouldn't have to use the mask anymore, but they still want her to have extra oxygen through her nose. The morning x-ray also showed that her right lung is still containing too much fluid. So, the goal for today was to get her up and moving more to try to drain that fluid out. Our other main issue is her feeding and possible damage or inflammation of her vocal chords. The volume in her voice is coming back more and more, and it is music to our ears to hear her talk! She was able to swallow some thickened juice and chocolate milk in small doses today which tasted good to her. We are still staying away from thin liquids at this point. It may just take time, but if her swallowing doesn't improve in the next few days they may need to do a swallow study to see if anything unusual is going on.

This morning we just spent time playing in our room and waiting for her to get her neck tubes removed. She is starting to get bored, and our bag of tricks is running out! Someone from Child Life Services came by and brought a painting activity . . . fun, fun, fun!

After the neck tubes came out, our girl was so much more free! The plan was to take a walk to the promised treasure chest! We brought along a car to ride in as well. It was so good to get her up and walking and out of the room! She grinned from ear to ear and waved to everyone she met. Our little cutie pie is quite the talk of the town around here!

 

Presley definitely put out a ton of fluid today, so we are hoping this will show positively on her x-ray tomorrow. She moved a lot today, which is so good for her. She's pretty tired, but we are continuing to take steps in the right direction each day. The healing process is moving along, but it just takes time. Presley is staying strong and brave, and we are so proud of our girl!

 

Post Op Day 6

"Rejoice in the Lord always. I will say it again: Rejoice!" Philippians 4:4

Our little princess turned a big corner today, and we cannot stop rejoicing! Our God worked a miracle and brought our baby back to us! We could tell right away this morning that Presley was more responsive, and she even smiled underneath her mask!

Her chest x-ray still didn't look perfect, but the doctors decided she could try being off of the oxygenated air pressure (cpap) at least for a few hours. Oh the smiles that produced!

We were ecstatic to see our beautiful girl's smiling face! She was so happy and began talking right away. Her voice was pretty whispery, but more and more volume is returning. It may just take time, but we are waiting to see if the doctors want to investigate further. We also saw someone about the eating/drinking issues and she watched Presley try to swallow some ice chips and jello. She was still coughing quite a bit, but it's not necessarily related to aspiration. She needs to cough to loosen everything up in her lungs which is constantly encouraged. So we will wait until tomorrow and see what the plan is for eating and drinking. We tried some jello a couple of more times, and she didn't cough at all. It made her happy to be taking something in by mouth!

Presley spent most of the afternoon sitting up in a chair which is also very helpful in breathing, coughing, and the overall health of her lungs. We read books, did puzzles, played with playdoh, did stickers, played ipad, and watched a few "My Little Pony" episodes. I was finally able to fix her hair and this made us both very happy!

Then it was time for a nap, and Presley needed to put her mask back on. She was so good and cooperative. I decided to join her, and apparently David snapped a picture!

We woke up refreshed and ready to take off that mask once again! Presley was even more herself, and she just looks so good!

We played some more, and we are about to get settled down for the night. Presley will need to wear her mask hopefully for the last time tonight, and an x-ray will tell us for sure in the morning. Everything is looking very positive, and we may just spend a couple of more days in the CICU before moving to the next unit. Once that happens home will be in sight! Thank you, Lord Jesus, for a very happy day!



Post Op Day 5

Last night it was discovered that Presley's left lung was showing signs of collapsing. Initially, this sounded concerning, but we were reassured that it is quite common after a major surgery. The breathing tube was doing all of the work for the lungs, and once extubated the lungs need to work for themselves. It can take time for the body to kick into gear, so the remedy is to give extra oxygen to support the lungs. This meant an oxygen mask for Presley, which she hasn't been too happy about. She is tolerating it, but she has had it on since midnight last night and all day today. It kind of feels like a step back, but that is still to be expected. All the rest of her vital signs are looking good, and she is no longer taking any blood pressure medication. Her oxygen saturations are 100 or at least high 90s with the mask, and she will get there without it soon. She is pretty puffy and is retaining a lot of fluid, so she is taking some medicine to help with that. She has been on some pretty heavy blood thinners, and now she is starting to take her low dose aspirin again. Once that is in her system, she can get rid of another line through her IV. However, whenever Presley has tried to take sips of water or apple juice, each time she has coughed and choked. They think she may be aspirating into her lungs which is obviously not good. We are waiting for that to be investigated further tomorrow. In the meantime they had to insert a feeding tube to start getting some nutrition into her little body. She didn't seem to mind. So eating some solid foods after the oxygen mask is removed and figuring out swallowing liquids will be on the agenda tomorrow. When she was talking her voice was very quiet, so there may also be some inflammation or damage to nerves around her vocal chords. We have been told this will improve over time. Healing takes time!

 Presley has been pretty shut down today, and she has hardly talked at all. The combination of coming off of heavy medications, going through a complex surgery, and adjusting to a body attempting to begin working in a new way is taking its toll. She has been so sweet and is handling every poke and procedure like a champ. Yet, not crying and screaming through the blood draw isn't our same feisty Presley! Ironic! She seems depressed and has just kind of accepted her situation. She is lethargic, not quite with it, and her energy level is not even close to her normal. Again, we have been told over and over that the way she is behaving and regressing is completely normal especially for a child of her age and development. We just miss our smiley, spunky, talkative, little ball of energy! We are praying for her quick return, and we will continue to take baby steps forward each day. It hurts our hearts to see our little precious this way, but it is our privilege to cheer her on through each phase of this journey!

Poor little sweetie! The lyrics to an old church song we used to sing came to mind today . . .

"It's a happy day, and I thank God for the weather
It's a happy day, living it for my Lord
It's a happy day, things are gonna get better
Living each day by the promises in God's word"

Psalm 119:50 – “This is my comfort in my affliction, that Your promise gives me life.”

Post Op Day 4

Today is the day! We are moving toward extubation! Everything is looking good, and Presley is showing us that she is ready for that breathing tube to come out! They are weaning her off of the heavy sedation because she needs to be awake and alert to remove the tube. When she has her moments of opening her eyes and moving around, she seems even more aware and is comforted by seeing us and hearing our voices. She immediately tries to pull out her tube and starts biting on it! She's quite the brave little fighter! This will be a big step in her recovery, and we can't wait!

We are also waiting to hear if she can have her chest tubes removed which would eliminate more of her discomfort. The more tubes that can be removed the better! By this evening we may even see her sit up and try to eat. We are so looking forward to interacting with our little princess! I hope these are the last pictures of her asleep! Since her temperature was down to normal, actually a bit cool, we were able to cover her with her cozy ballet blanket!

Hopefully, we will get to update again later with pictures of her awake! To God be the glory!

 To be continued . . .

Presley was extubated at about 11:00 a.m.! It was a bit traumatic, but the breathing tube is out! What joy filled our souls to see our girl awake and gaze upon her beautiful face! It has been a long day of ups and downs, which is to be expected. We laughed and cried and rode a pretty emotional roller coaster! She was pretty alert at times and tried talking and interacting with us. However, she was exhausted and still feeling the effects of the heavy sedation medication wearing off. She hit a slump and became withdrawn and just bummed. We discovered that she had a pretty high fever which made her feel lousy. I got to hold her for a little while which was good for my mama heart. We so desperately wanted to see our baby girl come back to us. After a dose of Tylenol and a nap she woke up happy and talkative! Our little Presley had returned! She ate half of a popsicle and some jello, and she even got a quick shampoo and a sponge bath. Then it was lights out for our little one. We have been told that each day will get a little bit better, and we are holding on to that hope! The healing process is tricky, a balancing act of medications, precautions, and staying on top of any potential complications. Right now we are drained, but here are some highlight pictures of our Presley finally awake!

 

Tomorrow is a new day, and joy comes in the morning!