Every Step of the Way...22 Days

When Toby was in the PICU; it felt like we were riding a roller coaster. One day he would be weaned down to just a teeny tiny bit of oxygen, and then the next day it was turned back up and he was on CPAP because he coded on us.  They finally did another MRI - this required intubation because he went under anesthesia

The MRI didn't really show much, but then a few days later, Toby began to get very agitated.  Nothing was soothing him, not even the "sweeties".  Basically, this child got addicted to the little containers of the glucose water.  They use this on boys when they are circumcised, and before other procedures to give them an adrenaline rush, so they won't feel the pain as much.  We were constantly dipping Toby's pacifier in this stuff to soothe him.

After this, neurosurgery tapped his shunt to see if his irritability was due to the shunt not working.  It wasn't, and January 25th, he had his 3rd surgery to replace the shunt.  The shunt surgery was successful, and Toby improved some.  The doctors thought he was doing so well he could be moved out of the PICU to the step-down neurology floor.  He was still needing just a low level of oxygen to keep his saturation levels up.  The next step was to see if his airway issues had resolved, and a sleep study to look at his apnea.  We already knew he had apnea, not sure if it was obstructive (airway related) or central (brain).

In this photo, he still had his PICC line in, they ended up removing it that weekend, but then three days later - he coded on the floor, and was immediately moved back into the PICU.  His stridor began to worsen, the scopes by ENT showed no change in his vocal cords,  he was severely retracting when he breathed, and he wasn't gaining any weight because all of his calories were being used up to stay alive.  At this point, the neurosurgeon was saying he didn't need a Chiari decompression.  This is where they take bone out in the neck to create room around those nerves that control breathing, swallowing, etc.  They said he had good CSF flow from the MRI's/CT scans, and really didn't see a reason to do it.  Then, the tough decisions began. Bruce said that the attending PICU doctor came in one day and said, "Enough is enough; we need to put in a trach."  In a few short days, on February 7th, Toby had tracheotomy surgery; his fourth.  It was devastating to realize that we would no longer hear Toby's voice - not his cries, coos, or even speech.  

So, you may be wondering where Conor and Garrett were all this time?  For the first few weeks they went back to Michigan to spend time with my parents.  Then, they came back for a little while.  Aunt Shauna (my sister) came for a period of time, and my grandparents. Everyone was helping out.  Our church took care of our meals; and we had around the clock "sitters" scheduled to be with Toby (from our church), even at night so he was never alone.

I love Toby's eyes in these pictures.  They are so expressive.

My parents are on the left, my sister Shauna, and on the right is Heather - a dear friend who also happens to have Spina Bifida.  I've know her since she was 9 years old.

Bruce's parents holding Toby while out of the PICU.  During this time Lon Nell (Bruce's mom) lost her mom.  It was a really rough time for all of us.

These are my grandparents.  They are holding Toby back in the PICU right before his trach.

So, do you remember when I started this a few days ago, I mentioned how I prayed that Toby wouldn't have: stridor, weak cry, difficulty breathing, central apnea, feeding and swallowing disorders, reflux, and failure to thrive.  All of the above happened.  So, what is my conclusion on that?  Do I think that God said, "Oh, well - you prayed that none of that would happen, so here you go - let's see how you deal with this!"  Not at all.  I believe that God allowed it to happen for His greater purpose.  I think He allowed me to be aware that that long list might happen to prepare my heart.  I can look back and see how I may not have relied on Him completely had Toby just had regular "Spina Bifida."  I also have an amazing story to share about my friend Erika (husband Carl) and their son Evan.  That will come tomorrow.