Updates

Tuesday 3:00 pm 

I am in a much better place right now.  Some fog has lifted from the previous days, and I am able to see a little clearer, both the past and into the future.  Both of my boys are quietly sleeping, so I thought I would get caught up, not knowing how my days and nights will be when we get home, and I leave the comfort and safety of our nurses and doctors. 

As I started to mention before I forced myself to go to bed at 330 this morning, we had been filled in that Toby's original testing was not sufficient.  Remember me saying that the machine they use at the patient's bedside wasn't always accurate? Well, it wasn't this time.  In order to process the labs they needed to make a diagnosis for our son, his levels needed to be below 45.  When we checked them bedside, it read 31, but must have been a malfunction,  because when the lab finally called back to confirm - his level was actually 50.  Too High to be of any value.  Remember I told you I panicked at the site of Toby's eyes rolling? The medical team did what they felt they had to do to keep Toby safe - which was continue the process without confirmation and inject him with medicine that would stabilize his levels, and whip him back into shape.  Well, if they would have waited a while longer, we would have known it was too soon.  I feel a pang of guilt at this, that its my fault I freaked out too early, and if I just would have stayed quiet, the first go round would have worked out.  But, I am reassured by my nurses who are also mothers - they would have done the same thing - and this quiets my internal judging.  

The next game plan was to watch Toby through the night to see if his levels started to fall again.  If they did, we would try to not intervene (meaning no feeding/juice/etc.) until we saw how low they dipped again.  Not a formal fast, rather, a responsive fast - if his body started into a downward spiral again.  He had drank his last Pediasure by 9pm, and was sleeping soundly by 10.  Up again through the night, sticking his finger and checking his urine, we watched as his levels started to drop.  By 6am they were in the 60's, far from where they started before bed. After a quick consult with the doctors, we decided we would let his body continue to naturally do what it wanted, ie. wreak havoc, and not intervene until his levels were under 45 - a feeble attempt to redo our mess ups from the last time. 

At 9am, he was 49.  Only 12 hours of no food/bottle, something that happens ALL the time in our house, he was at a dangerously low glucose level.  Do you ever watch those house flipping shows on HGTV, and the carpenter dramatically takes a sledgehammer or saw to a wall, only to see right behind it, inches away, was an incorrectly placed gas line.  One little spark could have blown everyone up?  And the family gets a second to digest all of the terrible things that could have happened to them, and the look of relief on their faces to know someone who knows what they are doing is here to help and fix it?  Well, that's how this was, only it was about my son's life.  To think that for years?? he has been at risk for something terrible to happen, for one little spark to ignite a storm in his body, and we've just squeaked by all this time?  It chills me to the bone.  I am grateful for the fast actions of his doctors, and even though I was repulsed at the thought of this whole situation before coming, I'm so glad we did. 

Toby was very uncomfortable, very ill and irritable.  Nothing I could say would calm him.  He would ask to be held and then ask to be put down.  He wanted me, then Parker.  He was disoriented, angry and scared all at once. By 10am, his bedside reading was at 42, and his nurse drew a sample to send to the lab for confirmation.  No way were we going to mess it up this time.  They stayed very near and kept checking with the lab to get the result.  Wouldn't you know, their system was down, and what normally would take minutes, now took ALOT longer because it was being done manually.  Just our luck. A sick feeling in my stomach.  Frequent trips to the bathroom to flush my worries and butterflies down the drain. 

A team of 3 nurses stood and waited, all of our supplies ready to draw blood.  Emergency sugar was in place in the event they didn't call back "in time". When it took longer than we wanted to wait, the respiratory team stepped in with a fancy schmancy device that was a bit more accurate than the other bedside device.  This one needed to stick his finger deeper to collect more blood.  I can't tell you how many times he's been stuck - its been well over 50 - and each time, he screams and buries his head in my arm. Misery. 

When that reading came back at 42, the lab called back from their manual process with a 40, and we were given the green light to collect the labs.  It had been decided that we would try to give him juice and a bottle to raise his levels instead of medicine - to see how quickly that would work and what type of effect it had.  I had a bottle on standby, and the nurse went to draw the blood, only for it to be empty.  A crushing blow, just when I thought the worst was over, it wasn't. A few more tries with nothing coming out of his tiny arm, then again on his other IV, with the same empty results.  Toby, terrified and miserable, just wanted to eat and to be left alone. The VAT was called again, and they were ordered to rush down to draw his blood.  Another stick, another helpless scream on the way down the hall. 

With three nurses holding him down, myself at his head, his father watching from the corner and the VAT nurse at his tiny foot searching for his vein, Toby fought as hard as his little, depleted body could fight.  Nothing I could say or do would calm him, so I just stopped and quietly rubbed his head, helpless again. Soon he was stuck again, a lab tube filled and sealed with his patient label.  Just when the green light was ordered, I gave him a bottle and he chugged down half in a few minutes, not being able to swallow the liquid gold fast enough.  I had asked, since neither IV was working great, that one of them be removed so his tiny hand could be free.  They agreed.  Toby still in distress, but somewhat more content with 4 ozs of bottle in him, he cried as the nurses undressed the IV from his hand.  Blood gushed everywhere when they removed it, a shock to all of us considering the lack of it coming out upon request.  And then, more chaos.  As if we all hadn't gone through enough, Toby started vomiting.  Pediasure 2 minutes old from the bottle, gurgling back up and out, all over himself, his bed and his nurse.  They quickly turned him to his side so he wouldn't choke, and Toby continued to empty his stomach until every last drop was out.  The inner fight he has with his systems saddens and sickens me all at once. Dealing with the blood from his absent IV and his vomit, the 5 of us were working quickly to undress, clean up, and bandage my little boy.  The charge nurse had run to get and IV with glucose, as obviously getting his sugar back up the old fashioned way wasn't going to work.  It was quickly attached and as soon as it entered his system, he started to perk up. Now sitting on my lap, his frowns turned to straight faces.  His straight faces to smiles.  Then a request for a pretzel, then a cookie. And slowly, his positivity out-shown and he was back to being a happy little boy again. A stressful 180 for everyone involved.

You wouldn't have known Toby didn't like to eat when his gluten free pizza arrived, eating at least 10 bites of it - something he NEVER does.  His hunger not matching how overjoyed he was at the taste of this delectable dish. We were better, happy, smiling and full.  Its been 2 days since we last saw that. 

Still hooked to our IV - we walked around - soaking up the oooohhhs and awwwws from everyone who saw him.  Toby saying Hi and Bye to folks like he was a politician.  Such a charmer.  I'm sure if he knew the concept of shaking hands, it would be his go-to move.  We met again with the doctor and made a plan that consists of staying overnight again to be monitored, and hopefully if that all works fine, going home tomorrow.  Grandmas and grandpas making plans to stop by for quick visits - a way for them to soak up much needed Toby smiles. A way for me to snuggle my daughter.  Win Win. 

So for now, I am going to try and shower before they get up.  I probably have every body fluid on me somewhere, and I haven't even brushed my teeth today.  Straight, Hot, Mess.  Thank you, Thank you, Thank you for thinking about us.  Pray that all stays on track, and we are back home tomorrow.  We love you all. 

Thanks for Listening, 
Lindsey