Courtney Update - Saturday, February 15, 2014

Today has been a day that reminds us that this is going to be a very slow road to recovery.  Yesterday was a step forward, but those days are not going to happen every day.  We are going to have many days like today - some good hours, some not so good hours.

Knowing she is mostly sedated, she was not as alert today as she has been on prior days, but she still opened her eyes in response to our voices (once again especially Kelsey's voice).  She does respond with facial expressions to pain and even appears to cry from pain or "uncomfortableness" (that is a Jennifer word)  :-)

There is not really much new to update about today, except the fact that she is still here and still fighting.

We appreciate the prayer support and continue to pray for her healing and comfort and strength for us and our extended family throughout this recovery.

No Mo ECMO!!!!!!!! - Friday, February 14, 2014

Around 4:15 this afternoon, Courtney's room was cleared in order to start the process of removing her from ECMO and securing a Vas Cath (Vascular Catheter) in it's place.  Around 7:00 PM, we got a call from the doctor informing us that she had been successfully taken off of the ECMO machine and a Vas Cath was in place.  The Vas Cath is tubing that will allow her to be on continuous dialysis and will allow the apheresis machine to piggyback on it as needed.

 

We got to see her around 7:45 and she looks good (relatively speaking).  She has gotten her color back although she still has some discoloration in legs and some swelling in her upper body and hands.  However, the swelling in her face has gone down significantly and she looks more like herself than she has in the last week.  YEAH!!!!!

 

 

On the other hand, nobody can teach us about perspective the way that Courtney can.

 

Just one week ago, we thought Courtney was just sick due to the fever she was running.  On Saturday, after taking her to the ER, we were scared because Courtney was in so much pain and became so  sick.  By early Sunday morning, we were distraught because Courtney's body was in severe septic shock.  In addition to being back on a ventilator and sedated heavily, we were told she needed to go onto a continuous dialysis machine because she was essentially in complete kidney failure.  We were devastated with that news, but within an hour later, we learned that she would have to go straight to the ECMO machine.  In all our previous experiences in the PICU, we had never seen a severely septic child survive ECMO (although we had only seen a handful of kids on ECMO over several years). 

 

The outlook was extremely grim.  Her sepsis continued to escalate until the blood infection was known and targeted.  The aggressive treatment for the sepsis has caused a host of new issues.  In all honesty, between the rashes, skin discoloration, and extreme swelling, there were a few times when she was unrecognizable as Courtney.

 

She still has an extremely long way to go to regain the quality of life she had a week ago.  Her kidneys are still in complete failure; her heart and valve are damaged and it will be extremely risky when the time comes to deal with replacing the valve; she will have to deal with aggressive treatments against the bacteria for quite a while; her lungs will have to be strong enough to come off the ventilator, her swelling will have to remain under control; she will have to get her temperature and blood pressure under control, and her body will have to overcome a host of other issues.

 

And even with all that....in perspective....we may actually get a few hours of rest tonight because we are no longer devastated that she is so sick she has to go on continuous dialysis.  In fact, we are grateful that she is well enough to come off of ECMO and go onto dialysis.  HMMMMM!!

 

Throughout Courtney's life, God has always had a way of putting things into perspective...

 

Please continue to pray for Courtney's healing and to help us keep things in the right perspective .  I pray that we will always look to our Heavenly Father for comfort, strength, patience, understanding, guidance, support, and thank Him for His mercies that He has bestowed upon us.

 

Thank you

Courtney Update - Friday, February 14, 2014

I wanted to give an update early today since I had posted a time that the trial off the ECMO machine was going to start this morning.

As is typical in the PICU at Vanderbilt, especially when it comes to Courtney, plans seem to change and time schedules are not written in stone.  LOL  The doctors decided to do the round of plasma pheresis and exchange this morning before they do the trial off ECMO.  They actually had problems with the apheresis machine (not Courtney), so that will not finish until around noon (CST).  Once it has completed, they will clamp off the ECMO tubes and see how her heart handles that for an hour or so.  If she does well, the plan is still to remove the tubes later today.

Thank you for your continued prayer support.  I will try to update again once the testing has completed and we know the next step in the plan.


Update as of 3:30 PM - Courtney failed her initial trial this afternoon due to not being able to maintain her blood pressure.  However, after giving her more blood and some medicine for her blood pressure, she was able to pass the trial the second time and they will setup a time to remove her from the ECMO machine later today.

Courtney Update - Thursday, February 13, 2014

All things considered, Courtney had a very good day today.  She was holding her eyes open for several seconds at a time and she is much more consistently responding to all our voices, but especially to Kelsey.

We have to make sure that Kelsey is on Courtney's left side of the bed when talking to her because once today Courtney tried to turn her head toward Kelsey when she was on the other side.  While connected to the ECMO machine, Courtney has two tubes that look like clear garden hoses with flowing red blood that go through her neck (right jugular) and connect to the machine.  Sudden movements to that side are not necessarily a good thing.

This morning the doctors performed a TEE test (Trans Esophageal Echocardiogram) - which is basically an ultrasound through her throat to provide a closer look at the heart's valves and chambers without interference from the ribs or lungs.  They discovered that her valve is obstructed, which at some point, will require intervention, but they now hope it can wait while she continues to recover from this NASTY sepsis.  The left side of her heart has regained its function, but the right side has not recovered as fast.

Her health has improved enough that the plan (as of Thursday night) is to clamp off her ECMO tubes on Friday morning somewhere around 7:30 for about an hour or so and see how she does.  If it goes well, they will try to take her off the ECMO machine sometime on Friday.  She will remain on the ventilator, the dialysis machine, multiple IV pumps, and occasionally the Apheresis machine (plasma pheresis and exchange).

Overall, it was a very encouraging day....more steps forward than backwards.

Thank you again for your continued prayer support.

Courtney Update - Wednesday, February 12, 2014

The last 24 hours have been a mixed bag of reactions, emotions, and opinions on Courtney's health status.

Last night (Tuesday) at midnight, Courtney had reached a stage that Jennifer called the worst she had seen her have since being admitted to the PICU on Saturday night.  However, by 6:00 AM this morning, she was looking the best that Jennifer had seen her during this stay in the PICU.  She continued to look pretty good (relatively speaking) throughout the day.

She remains connected to several machines (ECMO, dialysis, ventilator, apheresis) and mulitple IV pumps and monitors.  However, on a positive note, for a couple of times today she was able to tolerate some weaning off complete dependency of the ECMO machine.  She was doing 50% of the work and the machine was doing 50% of the work.

Even with aggressive treatment, she continues to test positive for the staph infection.  The infection has definitely affected her heart valve and its ability to work properly.  A more invasive test of the heart valve will be performed some time on Thursday.  The test will better evaluate her heart valve status and allow the doctors to begin formulating a plan.

One other positive note:  This afternoon on multiple occasions, Courtney intentionally and successfully tried to open her eyes on Kelsey's command.  If you know their relationship, it is no surprise since Kelsey has always been able to get Courtney to do things that other people could not.  :-)  To a lesser extent, she also opened her eyes for me, albeit was after they were moving her over and aroused her some.  She opened them up a couple of times after that when I talked to her.

When the doctors were asked today "assuming the best possible outcome, how long should we expect to be in the PICU?", the answer was a consistent "weeks".  Obviously, there is no answer to to how long it will be for all other possible outcomes.

We continue to request your prayer support.  I have always believed in the power of prayer and I would love to have all 50 states represented when praying for her.  If you have friends and family in other states, please feel free to outstretch our prayer chain to other states.

God bless you for your support and thank you to everyone who has left comments here, texted your support, or left us messages on Facebook.

Courtney Update - Tuesday, February 11, 2014

Around 2:00 AM this morning, Courtney's body started tolerating some fluid removal from her body.  They have added a new machine to Courtney's regimen that will be used a couple of hours per day for the next few days.  This machine piggybacks off the dialysis and ECMO machines and is used for Plasma Pheresis and Plasma Exchange.  You may not know what these terms mean, so in simple language, the machine removes the plasma from Courtney's blood after going through the other machines and replaces her plasma with "new" plasma from donors.

By late morning, her skin coloration was much better, the swelling was going down, and she was making small improvements elsewhere as well.  Unfortunately, as the day progressed, her color worsened in some areas and her skin has started to blister.  Her right lung now has much more fluid, which was to be expected.

The infection in her blood has been identified as Staph MSSA and they will now find the best fit for an antibiotic to fight this bug.  We also learned that the likelihood of this infection attaching to her heart valve has gone from possible to probable.

We have had family and friends with us throughout this process.  We also have prayer warriors represented across at least 7 states and have numerous friends asking what they can do for us.

One person has suggested, if you are able or interested, is to donate blood, plasma, or platelets at an American Red Cross Center and ask that the donation be credited to Courtney's account.  The ECMO process uses lots of blood products, as well as the plasma pheresis and exchange use lots of plasma.  It is not a direct donation, meaning the blood that you donate now will not be available for awhile, so it would not be used by Courtney.  However, it is my understanding that any blood products that are credited to Courtney's account will create a credit for her and not be charged when she uses blood products.

We continue to need your prayer support and can definitely feel the effects and it is very much appreciated.

May God bless you all.

Courtney admitted to Vanderbilt Childrens Hospital PCCU

Monday, February 10, 2014

If you are reading this page, you know that Courtney is in the hospital and you are coming here for updates.  Here is a synopsis of how we got to where we are right now:

When Courtney went to bed on Thursday night, she was complaining about not being able to get comfortable and was shivering.  I put extra blankets on her thinking it was a little colder in her room than it had been, but also told Jennifer she might be coming down with something.

 

She awoke Friday morning a little lethargic and had a small fever in the morning, so she did not go to school and went back to bed.  When Jennifer woke her up later in the morning, her fever had risen and became a very big fever in the afternoon.  Jennifer spoke with doctors at Vandy and had begun giving her Tylenol and Motrin to reduce the fever.  By late Friday afternoon her temperature was back to normal with no other symptoms. 

 

She awoke Saturday morning with a rash and a fever going in the opposite direction, down to 95. We were in contact with doctors at Vandy and by Saturday afternoon Courtney walked herself [holding onto me and walking very slowly] into the ER. Within hours she was going downhill fast. They moved her to the trauma side of the ER and then admitted her into the PCCU about 11:00 PM Saturday night.  They decided to put her on a ventilator at midnight to help sedate her easier and keep her from working so hard.

 

By Sunday morning it was apparent she was essentially in kidney failure and her heart was not 'squeezing' properly [along with other issues].  Her rapidly declining health required her to go onto an ECMO machine which is acting as her temperature control, heart and lungs. They have also connected a dialysis machine to the ECMO to act as her kidneys. They have determined she has a very serious bacterial blood infection but have been unable to determine the origin in order to treat the source.

 

As of late this Monday evening, the ECMO machine is properly filtering her system but Courtney's body will not yet tolerate the removal of all the excess fluid that is accumulating and causing her body to swell all over. However, her skin color is much improved. She is still hour by hour but we are very hopeful.

 

Thank you very much to everyone who has called, texted, posted or commented on Facebook, come by to visit, and most importantly lift up Courtney up in your prayers.  We appreciate all that you have done and have offered to do.  We will be here for several days, possibly weeks, and if things go well, will probably be in for a long recovery.

 

Your continued prayer support is very much appreciated and already felt.  I am comforted by the words in John 14:13 - "Whatever you ask in My name, that will I do, so that the Father may be glorified in the Son".  It may be selfish, but I am asking for God's complete healing for Courtney so that she may continue the good work that Christ has started in her.  Phillipians 1:6