Day 39 (Oct 3rd)

 

Emily and Chris drove us to the hospital again today and I stayed in the car while Emily, Chris and Katja went up to the room to see Tobias.  It was wonderful to stay in the car with a sleeping Eloise.  Babies exude such peace while they sleep.  One of my favorite stories as a child was about a mouse named Frederick who spent time in spring, summer and fall to "feel" the beauty around him.  In the cold winter, he then recalled the better times for the rest of his mouse friends so that everyone could feel the summer's warmth despite the cold bite of winter.  As I sat in the car with Eloise I enjoyed the peace.  It was completely silent except for the faint sounds of her breathing, which only made everything more placid.  I remembered Frederick and tried to commit the feeling around me to memory for future winters.  One of life's gentle graces is to give love to an infant and I was grateful for my time with a napping Eloise while her mom and dad were visiting Tobias.

The aides had just given Tobias a sponge bath, but they apparently haven't been trained well and there were a number of things wrong.  Normally I would just fix them, but this time I called for the charge nurse and took her through my concerns.  The splints for his forearms and hands were applied incorrectly which still allowed his fingers to curl and press the edge of the splint into his wrist that would be painful over time.  There is a sheet placed under Tobias that is used to pull him up in the bed when he slides down.  The bed is often set so that Tobias' torso is at a 30 degree or 45 degree angle to his legs.  This helps with his breathing and overall alertness, but causes him to slip down in the bed.  When this happens, he needs to be "boosted" in bed which means that two people stand on both side of the bed and pull the undersheet at his shoulders and hips in an upward motion to shift his body closer to the top of the bed.  The undersheet this morning was below his shoulder so that it wouldn't be functional to boost Tobias and the other side of the sheet wasn't visible until down by his waist.  This means that the sheet would be bunched up under Tobias' back, which can result in pressure sores over time.  They had also left the blood pressure cuff wrapped around his calf, but applied the stiff ankle boot over the top of it with the velcro straps pulled tight.  When I removed the BP cuff the plastic tubing had dug a mark into Tobias' leg and must have been painful.  These issues were serious enough that I wanted the charge nurse to take note so that the aides would be properly trained.  It is good that we are here to check over Tobias and catch things before they have caused a larger issue.

Katja is much better than I am at noticing issues that are potentially problematic for Tobias.  Today she found two and was able to get one of them already resolved.  Katja has been a big help for Tobias.  Tobias was storming mildly this morning and Katja started checking everything she could with Tobias.  She picked up that his right knee was much warmer than his left knee.  It is a very strange phenomenon for which the charge nurse had no explanation.  Because of his positioning, his circulation is not good and his knees and feet are often cold.  Today his right knee felt feverish.  It was also a darker red than the left knee.  The nurse took a picture and documented it in the computer.  The attending doctor came by and confirmed the condition, but wants to run tests in the next blood draw to identify what the cause might be.  He said it could be an infection, inflammation or gout.  Or it might just be some random thing that never shows up again.  The other problem that Katja caught is some congestion in Tobias' nose.  We discovered that Tobias is sensitive to body heat when storming so the nurses placed a fan in his room that helps resolve his storming episodes without using potentially habit-forming narcotics.  The downside is that it isn't great for a respiratory system to have a fan blowing on your face for a lengthy period of time.  In the night, the nurse sometimes leaves the fan on for an hour at a time.  The respiratory therapist came by with a special devices that she says they have to steal from the NICU (ICU for babies).  It fits on the end of the suction tube in place of the regular wand used to suction saliva and junk from his mouth.  The new device is a short tube with a nipple on the end and a hole in the middle to give the suction a second source to draw in air.  The device is attached to the suction tube and air is drawn in from the nipple and the middle hole.  The nipple end is pressed into one nostril and when it's in place the user places a thumb over the hole in the middle of the tube so that all the suction is directed to the nipple end.  The device is known as the "BBR", which stands for, and I kid you not, "Baby Boogie Remover".  It isn't usually needed for adults, but the respiratory therapist said that she likes to use it for patients in Tobias' condition.  It worked well for Tobias.  The therapist applied some saline and worked each nostril several times, and Tobias is now breathing clearly and has received Katja's "mother seal of approval".  The therapist instructed me and Katja how to use the BBR and we'll use it whenever necessary to keep Tobias breathing easily.

At 3pm we asked the nurse to help us put Tobias into his wheel chair and we took him outside for a sit in the small garden they have in front of the hospital.  Katja purchased a portable finger clamp to measure the blood oxygen level and the heartrate.  This gave us a confidence that we were going to know immediately if Tobias ran into trouble.  Spoiler alert... he never did.  He heart rate was low and his blood oxygen high as we pushed him in and out of the sun and showed him the waterfalls and the garden.  He slept through all of it as far as we can tell, but I hope he was inside noticing the temperature change, the fresh air on his skin and in his lungs and the sounds of nature around us.  We promised the PT and OT that we would come back after 30 minutes so we returned as agreed even though Tobias was thriving in the fresh air.  It took another half hour for the nurse to make time for us so we entertained Tobias in his room stilling sitting in his wheelchair.  It's a good accomplishment for Tobias to sit upright for a whole hour.  His therapists will be impressed.

He stormed for an hour in the afternoon.  We don't know what causes the storming, but he settled down when I removed the boots from his feet.  One of the boots is very stiff and wraps tightly on his foot with velcro.  The velcro may have been too tight across the IV wound on the top of his right foot and may have caused him pain.  He started storming again shortly afterwards though, and we haven't been able to figure out why.  Tobias is still retaining urine, which may be causing him the discomfort.  The nurse is here to extract the urine and we'll see if that helps his heartrate drop down to a lower level.  It would help to care less so that we don't get over-excited by every little thing that steps out of line.  It is maddening to think that there is some cause to his pain that we could alleviate, if we can discover it, but then not find it.  I fall into the "am I doing enough" loop, which drives me to watch over him constantly checking everything, but that isn't a long term strategy.

Hope over fear