Day 46 (Oct 10)

Katja and I arrived at 9:30 this morning and Tobias was just starting to low-level storm after a reportedly quiet night.  His heartrate beat in the one-teens and his arms and legs were slightly rigid.  He was sweating lightly.  Katja and I have discovered several positions that often help to reduce his heart rate.  If we are lucky, they also result in the storming going away altogether.  The most effective move is to bend his knees by bringing his feet as close to his buttocks as possible.  Tobias' legs are often stiff, but by using my forearm as a fulcrum under his knee and lifting his leg, his leg gives a little until it reaches a tipping point where it releases fully.  This fulcrum trick doesn't always work, but it's usually reliable.  With his legs bent, his heartrate often drops 10 bpm.  The leg trick works well, but it isn't long-lasting.  His HR starts to creep back up if we leave his legs static, however, if we straighten his leg and repeat the motion, his heartrate drops further.  It feels like we are pumping his heartrate down.  When it works, it's great, but it doesn't always work.

Tobias usually holds his left arm across his body and his right arm straight down his side.  It used to be almost impossible to straighten his left arm, but either I've learned a more effective technique or he has loosened up somewhat, but I can reliably get his arm to straighten out and this also helps to reduce his HR.  The pumping technique also works with his arm.

His storming may be due to him being uncomfortable in bed and we've experienced improvement multiple times that by taking away all the positioning pillows and replacing the sheet underneath him, which requires us to roll him to one side and then the other.  My theory is that he gets uncomfortable lying in one position and the multiple movement shifts relieve the uncomfortable pressure points so that when he is "reset" that he is much more comfortable.  I think this is why the leg movements help the most.  Moving his leg helps to shift his weight around and relieves joints or spots that have been overstressed.

Usually his heartrate dances to its own tune.  We can play around in the margins, but his brain has to work through whatever it is doing before his storming relaxes.  We work with Tobias to try to take the edge off his storming, but we're not able to control it.

His storming this morning wasn't severe and it dissipated quickly.  We had him positioned in bed to where it looked comfortable to us and his HR dropped down into the 80s.  We let him rest for an hour and then asked the aide to observe while we transferred him from the bed to the wheelchair.  This was our first time with no assistance and it went well.  The aide suggested that we recline the wheelchair move to give a larger "landing zone" for Tobias.  With the chair tilted backward, we could lower Tobias anywhere along the back of the chair and he will naturally slide into the right spot in the wheelchair.  It all worked well and soon we were pushing Tobias around the hospital.  We monitored his heartrate and oxygen levels with the finger monitor that Katja bought.  Tobias was very sleepy and we let him rest for the most part.  His HR was better when he was on the move so I pushed him around the figure-eight sidewalk in the hospital's front garden area.  His HR was in the 80s and 90s so we stayed outside for over an hour.  Katja brought a blanket to ward off the autumn chill, but it wasn't clear whether the blanket helped or hurt his heartrate.  His body temp was pretty warm even without the blanket, but we both felt better with him keeping it on.  After 30 minutes I woke Tobias by massaging his back and he was able to feebly move his thumb for me.  He told me (I think - very feeble response) that he preferred more outdoor time so we kept doing our garden laps for another 30 minutes.

Katja and I put Tobias back in bed by ourselves with a nurse chaperone.  It all went to plan and Tobias embarked on a several-hours-long rest that featured the lowest heartrates that we've recorded.  We had replaced the finger monitor with the official hospital sensor and Tobias spent much of the time with his heartrate in the 70s with no signs of storming or muscle tone.  His left arm, which is always somewhat rigid, was completely relaxed.  I took a picture of the monitor when his HR dropped to 65.

Around 4pm Tobias started to storm again lightly and his condition unfortunately worsened until he was sweating profusely, stiffening and tremoring his arms and beating his heart at over 140 bpm.  We spent much of the afternoon likely on a fool's errand to find the right position for him to relax again, but we never found it.  His storming continued and we feel that we helped him by keeping his heartrate lower than it would have been, but it felt like I was at the beach with the kids trying to keep the tide from washing away the sand castle we had built too close to the high-tide water mark.

I can't remember if I mentioned this already in the blog, but it's painful and wonderful together to look into Tobias' face at times and recognize the little boy I got to raise.  He's long since blossomed into a strong, mature adult and I had become accustomed to the adult face with adult expressions.  It's been a surprise to see that my little boy is still present in his features.  It's a joy to catch a fleeting reminder of the happiness Tobias has given me, but also sends a pang of fear that we may not get him back.  I have a vivid memory of my father teaching my sister to drive the car at night.  Marvee was driving and my dad was in the passenger's seat when a car drove by in the opposing lane with their headlights still on bright.  "Don't look at the other car," my dad instructed Marvee, "You'll be blinded and disoriented by the light.  Look at the line marking the outside of your lane away from the other car" he advised.  "This way you avoid getting blinded and you have a guide by which to steer safely."  I try to use this advice when I feel doubt and fear about Tobias' condition.  I focus on moving forward and avoid looking at the thing that can distract me from the path I want to be on.

Hope over fear.