Life in the CCU

We made the move to the Cardiac Unit this morning. Now we are under the care of Ava's cardiologist instead of her surgeon and the doctors who work in the Cardiovascular ICU. It is much calmer and quieter here; there are no monitors going off all hours and the door is CLOSED. We will enjoy the quiet tonight.

A heart medication was added to our list today due to some regurgitation in one of her valves and we've switched reflux meds to try to reduce her spitting up.

Ava is making progress each day neurologically. She is using her hands to play with toys and she is pulling on her leads and O2 monitor wire. The relief that comes with seeing these things cannot be put into words. She has been sitting in her blue chair more and enjoyed playing in it for a while tonight.

 

There you are, foot! Haven't seen you in a while.

 

Pulling my leads

 

Sitting in my chair playing with toys

 

Praising God for the progress she's made and praying for the green light to go home soon. Maybe even this weekend??!! And looking forward to some visits from some Dothan friends tomorrow.

 

Krystal

Moving On Up!

Well it looks like we'll be moving to the Cardiac floor today!! We've been in the CVICU for 10 days now. Honestly, I haven't been ready to leave the unit until yesterday. Her health has been so precarious, that I have not wanted to move to a place with less hands on care. But she seems to have all the major stuff behind her and seems to be stable without any significant interventions.

The pneumothorax is continuing to shrink on its own. She is off of oxygen. And she is eating well by mouth. Her temperature has remained stable. She continues to take antibiotics and whatever vitamins she's deficient in each day. Right now, we're mainly dealing with minor things like upset tummy, gas, and a sore chest from the surgery.

That's about all there is to report right now. Praising God for the healing he has done and for the comfort He has provided. I am really hoping that we might get to come home this weekend!

Ups and Downs of ICU

Today started out pretty rough, but has ended on a good note. This morning, Ava spiked a fever of 102.6. She was very agitated and was shaking all over (looked like a Parkinson's shake). We tried all different things to get her to calm down and get the fever down, but they ended up having to give her a sedative. She settled down and eventually took a loooooong nap. Her temperature returned to normal and we've been able to manage it since. Ava has had a fluctuating temperature since surgery and the doctors have not been able to find a cause. The past couple of days we've been trying to manage it with a cooling blanket that blows air all over her body and with cold cloths. She has had so many medications pumped through her that the doctors are really trying to avoid giving her things, even Tylenol.

 

She continues to have a pneumothorax that is being monitored. If it doesn't resolve, they will have to insert a chest tube or extract the air with a needle. We are hoping to avoid this, obviously. She is off most of her medications, which is a great step. She is still taking a diuretic, antibiotics, and vitamins.

 

After waking up from her long nap, she has been very responsive and has been using her hands. Up until now, her right arm has moved around some without purpose and her left arm hasn't moved much at all. Tonight, I am thrilled to say, she started reaching for her toys and grabbing on to them!! She's still very weak, but I am seeing progress neurologically. I got her out of the bed and held her for a while tonight and she even grabbed my hair. Those of you who know Ava well know how much she likes to grab hair! I've been anxiously waiting for that moment because it's a behavior that is so characteristic of Ava.

 

The plan is for her to have a modified barium swallow study in the morning, but you kinda have to believe it when you see it around here. It's been put off three times already because of her pneumothorax. They've stopped her tube feeds tonight so hopefully it won't be for nothing. I have a feeling neither of us will get much sleep tonight! Sister does not appreciate an empty tummy. They will also consider a procedure for the pneumothorax, but again, the plan changes constantly.

 

And now for some pics!

 

 

Sitting in her special chair

 

This was yesterday so she wasn't using her arms yet

 

 

Beautiful Christmas village I found in the old Children's hospital building

 

Love to all,

 

Krystal

Turning Point

“Do not think that as you grow in grace your path will become smoother and the sky calmer and clearer. Quite the contrary. As God gives you greater skill as a soldier of the cross, He will send you on more difficult missions.  As He more fully equips your ship to sail in storms, He will send you on longer voyages to more boisterous seas, so that you may honor Him and increase in holy confidence.”
~Charles Haddon Spurgeon, in Beside Still Waters

The past week has been quite difficult as we've watched our precious Ava endure this recovery process. I told Benji this morning that a week ago, we had no idea what our biggest concerns would actually end up being. We did not know that she would struggle to heal physically and mentally.

There have been so many unknowns. But here's what I know: God is sovereign; God knows all; God is faithful to His children; God will lead us through trials; God cares about every detail; God will be glorified. He knit her body together the way he saw fit and He will heal her according to His will. There is peace in this knowledge.

It was Sunday and we knew that all the specialists would be assessing her on Monday to see if she improved over the weekend. Without improvement, neurology would be considering a sedated MRI of her brain to look for abnormalities. Around 2:30 on Sunday afternoon, while my best friend, Sarah, was visiting, she woke up. And she was with us.

 

 

To God be the Glory, great things he hath done!!

"If you believe, you will receive whatever you ask for in prayer." Mattthew 21:22

Sarah reading Scripture

 

Focused and following with her eyes

Relieved and thankful

A tiny foot

Ava still has a ways to go in her recovery process, but this was a huge turning point. The vascular team is continuing to monitor and treat the blood flow to her left leg. Respiratory has backed off on the oxygen they're giving her and continue to do chest physiotherapy to clear secretions in her throat. She is on medication to help kidney and heart function. And she is on scheduled doses of Tylenol to fight the fever she's had intermittently since surgery.

Today will be an important day as the different teams come around and assess her progress. Thank you all for your prayers. It is amazing to watch the Lord unite his people to intercede for our daughter.

Ava Update

Sitting down to post an update seems very daunting given what all has taken place over the past couple of days. Being in intensive care is definitely a roller coaster. I will try to give an overview.

 

From a cardiac standpoint, all of her repairs continue to be successful. Her heart was very enlarged when she came in for surgery and now it is having to adjust to all the changes. She was on bypass for many hours and that has really taken on toll on her heart, lungs, and brain. Her heart has struggled a bit when the docs have backed off on her meds, so she is currently back on the one that was stimulating her heart. Overall, Dr. Kirklin is pleased with her heart.

 

As far as respiratory goes, she has been successful at staying off the CPAP. She is getting oxygen through her nose and is doing well as long as she's calm. There have been attempts to back off on the amount of oxygen she needs, but she has not tolerated this. Her body is just not ready to work on it's own yet.

 

We had started feeding her by mouth yesterday, but she struggled to balance eating with breathing throughout the night. With each feeding, her breathing would get "junky", her heart rate would increase, her sats would drop, and she would become very stressed. The decision was made this morning to go back to feeding her through the NG tube until speech can assess her swallowing. There was some clouding on her lung this morning that could be from aspiration, but it has since improved. Regardless of the exact cause, we know that eating is associated with stress to her body.

 

The vascular team has been monitoring the blood flow to her left leg. There was an arterial line placed in her groin area during surgery that caused some damage to that vessel. This, in turn, has restricted some of the blood flow to her leg. Removing the line and starting a blood thinner has improved the flow so far. The last resort would be surgery to fix the vessel.

 

The scariest part of this whole surgery and recovery has been her neurological recovery. She has not been responding to us or her environment since surgery. She was also showing some abnormal body and eye movements for much of the day Thursday. The docs were very concerned at first that something significant had happened neurologically. She just wasn't waking up. She will respond to pain and hunger, but not to her environment. She was also exhibiting behaviors that could be seizures. Long story short, we've been waiting and watching for any signs of her old self. Yesterday, she started sucking on her forearm, which is how she soothes herself. A good sign! And today, Benji and I have no doubt that she woke up and focused on us. It didn't last long, but she definitely focused on our faces and searched for me when I moved around. PRAISE THE LORD, GREAT THINGS HE HATH DONE! We are starting to feel more confident that she will eventually recover to her normal functioning. The docs say that this delayed recovery is not typical, but not unheard of either. They have seen children with developmental delays take longer to recover neurologically.

 

So we wait and we pray...

 

 

CVICU

 

Jack is heading back to Dothan today with Benji's parents and grandmother, so he got to come by and see Ava for the first time. Some of the precious things he's said are: "Why you not bring my sister home?" "I bery, bery love her, Mommy." Of course he asked a million questions about everything in the room and was not alarmed by the situation, thankfully. I got to walk around the hospital with him and show him some of the neat things. Children's is a beautiful place...especially at Christmas.

 

Found the snack basket from the Shields

 

A million questions about the equipment

 

"Ava, I just bery love you."

 

I'm sure climbing up the side of the bed is frowned upon in the CVICU

 

Oh yes, we did the stairs twice

 

 

We found an outdoorsman themed tree

 

I was blessed to visit with my friend and coworker, Marci, today. Her family and friends were here to celebrate her daughter's life by bringing toys to the children on the oncology floor. Marci's precious daughter, Hannah Grace, went to be with the Lord after battling cancer. What an encouragement she was to me today!  

 

I was also blessed by a visit from baby Harlee earlier in the week. I have talked with her mom, Ashley, on Facebook and texts many times, but this was our first time seeing each other in person. Harlee and Ava have much in common and are destined to be best friends, if Ashely and I have anything to do with it. Harlee had her heart repair in October and they were here for a follow up appointment.

 

Baby Harlee...look at those cheeks!

 

 

I am thankful for these bright spots and also for the progress Ava has made. She still has a long way to go, but the Lord is healing her precious body slowly. He knit her together the way He saw fit and He will heal her according to His will. She is in the hands of the Great Physician.

 

Thank you all for your continued prayers and support. I feel like we've got a whole army praying for this girl.

 

Krystal 

Happy Birthday, Ava

First of all, let's stop and say...

Happy 1st Birthday to Ava!!!!!

Her early birthday party in November with big brother

Some birthday, right? It's been a pretty eventful morning for Miss Ava. Early this morning, the nurses noticed a difference in color and temperature between her left leg and right. Her left leg was very mottled (splotchy) and cold to the touch. The concern was inadequate blood flow to her left leg. And so began the circus of doctors, respiratory specialists, vascular doctors and surgeons, etc. coming through to try to get to the root of the problem.

During surgery, several lines (tubes) are placed in different places to measure pressures directly inside her body. One of these lines was in the artery that goes to her left leg that is located in her groin area. The doctors knew this was the cause of the problem, but spent some time figuring out what that line did to interrupt blood flow and what should be done to correct it. One possibility was that a clot had developed. Another possibility was that her structures around the spot where the line was placed had been irritated and contracted. With the first possibility, a surgical intervention would have been needed. With the second, the removal of the line and a blood thinner could solve the problem. THANKFULLY, so far the second solution has improved the blood flow. So right now, no procedure is planned. The vascular team will be back this afternoon to reassess. This would be a specific prayer request for Ava. We definitely don't want her going back into surgery.

Because of the possibility of going back into surgery, Ava's breathing tube was left in this morning. When things calmed down, it was removed. She had some trouble taking adequate breaths on her own, so they hooked her back up to the machine with just a nasal cannula. We (including Ava) are very happy to have that tube out of her throat. She is showing some increased effort and wheezing with her breathing, so they'll try her on a steroid to help with that.

She is sleeping most of the time right now. She wakes up every so often and looks around, but isn't interacting yet. Hopefully, one of the next things to come out will be some of the chest tubes...she has FIVE this time.

Finally, a pic now that she's looking better



Here is a pic of what they repaired yesterday. The purple areas are the patches they used to close her septum and the green is the bovine structure they implanted in the pulmonary artery.

Thank you guys for your continued prayers and support.

Krystal

Surgery Day

We got to Children's about 5:45 this morning and were so thankful for Ava's fan club waiting in the lobby. She got passed around and loved on one more time. Thank you Mom, Dad, Stan, Melessa, Bro. David, Stephanie, Scott, Bill, Pat, and Justin for spending all day with us.

 

Getting some love from Bro. David early this morning

 

Why are all my people here?

 

 

 

 

 

Hey mom

 

The sweet staff brought her a bear

 

The hardest part is watching her go back



Waiting, waiting, waiting



Well, it was a looooooong day to say the least! We handed Ava off at 8:00 a.m. and saw her again somewhere around 4:30 or 5:00 p.m. Thankfully, she was in a good mood this morning and even took a nap while waiting for them to take her back.

The surgery was successful in that everything Dr. Kirklin planned to repair was repaired. And get this, they used bovine structures in one of the repairs! So Ava has cow parts now...sorry, but you have to find humor somewhere. After surgery, she moved to the CVICU where she will stay for several days. She is still sedated since she has the breathing tube in and a central line. Hopefully, the nurses will be able to extubate her tomorrow and let her start waking up. So far the only issues have been stabilizing her blood pressure and getting her body temperature up to normal.

I will post more details tomorrow and maybe some pictures once they get some of the tubes and lines out.

Thank you all for your diligent and fervent prayers! God is so good and is taking care of this little one whom He created. He has also given me a peace and calmness that could only come from Him. Please continue to pray for her healing process and that she will tolerate breathing on her own.

Until tomorrow...