Another Ray of Sunshine

I haven't been willing to include pictures in the last few posts, but today I was thinking I need to get over it.  However, I see that my daughter, Kersten, already took care of that on the previous post.  Here are a few pictures taken by Kersten from a couple days ago, when she had still had the BiPAP:

Saturday, 10/18: Sitting on dad's lap, holding her
Kindle Fire.  Despite an IV in her right hand and
a board to keep that hand and fingers straight,
Nicole could still manipulate the touch-screen
with the tip of her fingers, but the BiPAP mask
really frustrated her because she couldn't see well.

Saturday, 10/18: Trying to get comfortable.

 

Sunday, 10/19:  Nicole spending a brief moment with her 2.5 year-old nephew,
Jace, right before the room was cleared for intubation preparations.

I need to make a quick correction; I learned yesterday (Monday) morning that they only used the paralytic to place the ventilator tube on Sunday - they're not keeping her on it like they did 2 years ago when she had pertussis, just sedation.  This is a good thing overall, but she has had so much sedation that she's built-up a significant tolerance, and before it's time for her next dose, she can start to squirm and move quite a bit if she decides to.  The problem is that the ventilator tube goes all the way down to her lungs, and it can damage them easily if she gets feisty.

One piece of good news today is that Nicole's heart rate has continued to improve; mostly 140s, and even a goodly amount of time in the 130s, which is wonderful.  The bad news is that her blood pressure has been on the rise, and that trend continued today, and so the doctors are very concerned about that.  Nicole is a puzzle, and sometimes it feels like we're playing Whack-A-Mole with her various vital signs.

Two days ago, on Sunday, tests were showing no sign of the blood virus (HHV-6) in Nicole's system.  This is the virus that originally put Nicole in the hospital almost three weeks ago.

Yesterday, the tests showed a significant presence of HHV-6 in Nicole's blood, but a cardiac doctor remarked that although they would address it, clearing that up probably wouldn't benefit Nicole's heart.

This afternoon (Tuesday), one of the cardiac doctors came in and said that some other tests were showing enzymes in Nicole's heart that were likely caused by the virus, and that this was likely responsible for Nicole's heart problems.  This is the ray of sunshine - the feeling right now is that the virus is actually the primary problem, so crushing it may go a long way toward Nicole's recovery.

But what fun would sunshine be without storm clouds to provide a contrast?  The drug they use to treat the virus is hard on the kidneys...but after a consultation with the doctors on pros and cons, and a brief family council, we indicated to them that we wanted them to proceed full ahead and go after the virus aggressively.  They will, of course, monitor kidney function, and see how things go.

Of course there's lots of other things going on, and Nicole is running her nurses ragged.  Of particular note is that one of her IV ports has stopped working, so they needed to place another one.  Nicole has had so many IV pokes, both recently, and over the last three years, that they are having a very difficult time locating a non-scarred vein that they can use.  They have resorted to using an ultrasound machine to try to locate something, and finally stuck an IV in her right thumb.  However, it's not working out, so as I'm typing this, the IV Team is working her over again (with ultrasound assist), trying to find a vein that will work.  These days, this often involves several failed attempted pokes.  If they cannot get IV access, they will have do something more invasive, which is not something that anyone wants to do to her in her present condition.

For the past three years, it seems like Nicole has always done most everything the hardest way possible, and it appears that we're not going to catch a break this time around either.

On the other hand, this stubborn little girl has demonstrated over and over again that she has an indomitable will; she never gives-in.  For example, numerous times over the past two days, when the sedation starts to wear-off, Nicole will use the core muscles of her abdomen to try to sit up in bed - we have to tell her she can't do that, and gently lower her back down onto the bed.  She is still strong, still fighting, and she's ready to walk right out the front door of the hospital.  This little girl continually demonstrates such reserves of courage and determination that I cannot help but shake my head in wonder at her.

So at least for now, the priority is to destroy the HHV-6 while not destroying Nicole's kidneys in the process, and we are petitioning the Lord to help this process.  I asked my older brother to come and act as voice as we administered a blessing to her.

As I mentioned on Saturday morning's blog, at that time, I felt that the Lord said that He would prolong Nicole's suffering, but that He would also strengthen her to get through it.  Nicole is surely suffering, but she is also being strengthened; the Lord is with her.  We are deeply grateful for the multitude of prayers being offered by so many good people, even strangers, who are exercising their faith in Nicole's behalf.  As I have quoted in an earlier post, the Bible Dictionary says the following under the heading of "Prayer": "Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God but to secure for ourselves and for others blessings that God is already willing to grant but that are made conditional on our asking for them. Blessings require some work or effort on our part before we can obtain them. Prayer is a form of work and is an appointed means for obtaining the highest of all blessings."  (https://www.lds.org/scriptures/bd/prayer?lang=eng&letter=p).

We feel that God is saying to us at this time: "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks; Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament—the Lord hath sworn and decreed that they shall be granted." (Doctrine and Covenants 98:2).  Whatever happens, our family's faith is in Jesus Christ and is not dependent on outcomes.  (see https://www.lds.org/general-conference/2010/04/healing-the-sick?lang=eng).