Sick again

We didn't get any real, actionable info from the echocardiogram and the labs - or at least we didn't think that we did.  The echo was basically normal and the cardiologist thinks that the weird stuff from Friday was caused by the clot that had been blocking Noah's central line.  The clot appears to have dissolved as it was no where to be found, which is great news.

I spoke with Dr. B for a while lat night trying to make sense of the various "off" labs and trying to figure out where we go from here.  One concern is that Noah is still having random, dangerously low blood sugars that appear out of nowhere on routine labs.  Right now it seems like about every 3rd or 4th set of labs shows very low blood sugar.  This pretty much shouldn't be possible as Noah has a perfectly stable delivery of sugar/carbs.  There are no highs and no lows - just the same rate dripped in 24/7.   Because of these blood sugars and some of the other labs, Dr. B had a talk with our wonderful GI Dr. M.  We also made plans to set an appointment with heme/onc on Monday because it looks like Noah needs some blood.

This morning Mary Faith woke up with a high fever and a bad cough.  While we were waiting for our family doctor's office to open so we could get her an appointment, the GI office called.  Dr. M had looked at everything and wanted Noah to come in to Greenville right away for an albumin infusion. My stepfather offered to take Mary Faith to the doctor for us and we got Noah and headed to Greenville.  ( Turns out Mary Faith has a very, very bad double ear infection and is absolutely miserable.)


When we got there, we both commented that he wasn't really looking good at all - pale, kind of vacant expression.  Within a few minutes he started shaking and having very strong tremors.  Initially he wouldn't even respond to us but eventually he did respond so I don't think they were seizures - but it was scary for a couple of minutes.  As we got everything set up for the 2 hour infusion the nurse checked his vitals and noted that his temp was elevated to 100.5, which is officially considered a fever.  She checked it every little while and it climbed to 101.4.  Jeff walked across the street to get some Tylenol suppositories which we gave Noah, and we called Noah's hospice nurse who called Dr. B.  The GI nurse agreed to draw Noah's labs when the infusion was complete so that we would have results faster versus waiting and drawing them when we got home. 

In the midst of this, the GI nurse called Dr. M the GI doctor (who had gone over to the hospital) to let him know what was going on, and he said that with that fever, Noah would need to be admitted.  One of the hardest, most heart-crushing things I've ever done was to explain to this sweet nurse who we love that we were not going to admit Noah.  I literally felt like I was going to be sick.  It was one thing when he got sick last time and we decided to stay at home, but it was another thing altogether to be there by the hospital, with a sick-and-getting-sicker-fast child, and decide to go home.  There was a part of me that wanted SO much to grab him and race to the hospital.  I wanted someone to fix him, but the hard truth is that there is no fixing him anymore.  Had I caved in, he would be under bright lights being prodded and stuck and miserable instead of where he is right now - cozily sleeping in his own bed surrounded by his favorite things and his family.

Don't get me wrong - there is nothing wrong with being in a hospital and there have been SO many times in Noah's life that a hospital has been exactly the right place to be.  There have been SO many times that he's needed, for his own good, to undergo painful and scary procedures . . . but this isn't that time.  Once again we were faced with the reality that if he is getting really sick, a cascade of interventions would start happening in the hospital and we would not be able to walk away and take him home.  We've promised not to do that to him no matter how much it breaks our hearts.

So, we are home.  Noah seems comfortable.  His fever is continuing to climb even with the Tylenol and I'll give him some IV ibuprofen in a little while, but his fever isn't sky high right now - it's just under 102.  He slept most of the way home and woke up lucid enough to do a couple of things with me for a short while.  A precious friend sent us recordable ceramic hearts for all of the children and he recorded messages to all of his siblings.  He also made a Bear Factory alligator that he'd been given (like a do-it-at-home Build A Bear).  It was about 30 minutes of alert time then he was ready to go to sleep.

We're still waiting for the labs.  I don't expect them to be really bad right now simply because we drew them so quickly after Noah started running a fever, but it will be interesting to see what they look like tomorrow.

This all feels kind of like a waking nightmare.  Just last night Jeff and I were saying that we felt like maybe we could start to breathe again - yes, Noah is very, very sick and his new baseline is pretty bad, but he was no longer battling this virus and infection, his organs all looked good, heart function was good, and we were ready to start finding our way back to some semblance of normal life instead of crisis mode.  Guess we spoke too soon.  I keep telling myself that maybe this is no big deal and that he'll wake up feeling fine.  He isn't crashing nearly as quickly as we've seen him crash before, and that's a good thing.  On the other hand, we've all been very concerned about whether he could pull out of the next illness and I certainly didn't expect him to get sick again so fast.  While he's no longer dealing with the virus and infection he had three weeks ago, (three weeks ago today, in fact), he has by NO means recovered and is not in a good place right now to be dealing with another insult.

I am SO thankful for the Lord's timing on this.  The albumin he received today should start pulling off some of this awful edema and that is especially important now that he is sick again.  The edema was so very dangerous and life-threatening last time - and that is with him starting with NO serious edema.  He simply can't afford to add more to what he already has, so this timing was just beautiful.

I will update here as I can and as I have news.  If someone can paste in FB posts into the comments, that would be great.  I can update FB from my phone but can't update here, so if I'm in the car or sitting by Noah, FB is the only thing that gets updated.  Also, if things are changing rapidly I can do a quick, two sentence post on FB in a fraction of the time it takes me to go through the steps to post a blog and send out the notification email.  I appreciate all of you blog readers SO much and am truly not trying to keep anyone out of the loop!!

Specific prayer requests:
Comfort for Noah
Wisdom for Dr. B and all involved
Peace for Jeff and I and the children
For the albumin to do its job and pull off some fluid
Comfort and healing for Mary Faith

Blessings,
Kate