Day 9 (Sep 4)

Bottom line: We had a good day today.  Tobias is moving his thumb on request again and his pupil is sometimes reacting to light.  The vasospasm medicine seems to have worked and Tobias had a calm day.  He seems to be recovering in the eyes of the staff here because they are removing some of the items that he used to need (central line).  I am trying to help Tobias with some joint and muscle movement.

Tobias' condition is still changing on a daily basis and we haven't become used to the ups and downs so there is no average day for us yet.  It seems that we are either despondent from how hurt and vulnerable Tobias looks or elated that he has shown some surprising ability that we feared he had lost.  It will still require a miracle for Tobias to recover fully, but today the miracle looks a little more possible.

I wish I had arms like this.

Detail:

One week ago today I was composing an obituary for Tobias in my head and trying to remember what the last real conversation I had with him was about.  Katja and I both felt our future dreams for Tobias caving in upon us.  Luckily Tobias is still alive and fighting to come back to us.

Katja wanted to use this morning to work on her final paper for her university degree as well as help Sebastian get ready for his exciting start at college next week.  I wanted to be with Tobias so I drove to the hospital on my own and spent the morning at the side of his bed.  Immediately I felt that it would be a better day than yesterday.  Tobias looked calm lying in his bed rather than swollen, sweaty and sliding downhill like yesterday.  I woke up at 5am and used the chance to call the night-shift nurse and get an update on his condition.  The connection was poor so it was difficult to understand, but we were able to ascertain that Tobias had had an uneventful night and that his storming was better under control.  After my first positive impression from the doorway my eyes went directly to the monitor above his bed to check his heartrate, both of the blood pressure readings, his temperature, his blood oxygen levels and his respiratory rate.  The two ICP values that show the pressure in his brain are visible but not valid because the tubes can only be used to either measure the pressure or drain the cerebrospinal fluid and they are usually used for the latter.  All of his values looked really good and I could tell that he was having a peaceful rest.  The resting heart rate of a healthy Tobias would be anywhere between 60 and 75 beats per minute, but the lowest heart rate I've seen for hospital Tobias is 85.  Anything under 100 is great according to the nurses, but his heart rate is often over 100 and has been as high as 160.  His systolic blood pressure would normally be 120, but his hospital blood pressure target range is from 110 to 180.  He often has blood pressure in the 140s, but when he is storming it is frequently above 160.  The other key vital sign for storming is his temperature.  His lowest temperature since the bleed has been 37.5 Celsius (99.5 Fahrenheit) but it has gone as high as 38.5 C (101.3 F).  When his body is storming the nurses treat his symptoms with various medicines, but the most effective is painkillers.  They also placed a mat under him that they can run cold water through to lower his temperature.  I put my hand on the mat when it was running and was surprised at how cold it was.  His bare heel was resting on the pad and I know that it must have been very uncomfortable.

I could tell from the monitor that his body wasn't storming or the medication was keeping the storming in check.  His heart rate was 95, his blood pressure was 140 something and his temperature was 37.5.  "It's going to be a better day", I thought to myself.  The downside from using the painkillers to blunt the storming effect is that he is not as responsive and when he has a high fever on top of everything he is even more lethargic.  I hope that his storming phase weakens soon so that his body has a better chance to come back online.  Storming can last weeks and even months, but as the doctors always say, "every case is different."

I spent the morning talking to Tobias.  I tell him where he is, what happened to him and how the nurses and doctors are taking good care of him.  I let him know that Katja and I are with him and that we are not going to leave him.  I tell him that we are going to go through the entire process together.  I tell him about his 10-month-old niece and how she just learned to walk and is getting her first tooth.  I have no idea if he can hear me, but I want him to know that he is loved and that we are watching over him.

We have a new nurse today.  She has a nurse trainee with her so everything takes a little longer.  The nurse told me that they will be removing the central line IV that drops in directly over his heart.  This was added in the middle of the most critical period so that they could be assured that any medicine that they administered would be directly distributed all over his body.  There was a time when the regular IVs in his arms and legs weren't resulting in a fast enough delivery and they were worried that they would lose him.  It's a good sign, I think, that the central line is no longer necessary.  They are also going to replace his internal catheter with a "condom" catheter (the nurse's words not mine).  This presents less of a chance for infection although in neither product description are you likely to find the terms "comfortable", "pleasant" or "amusing".  My poor boy.  The nurse trainee is about Tobias' age and actually attends the same university as Tobias.  Today part of her training was catheter removal and installation.  Lucky for her she had the regular nurse and Katja watching to make sure she was doing it right.

The nurse practitioner came by to check in and I think she was more concerned about us than Tobias.  I had three requests for her and she met all requests quickly.  The hospital staff have been very good to us and must be well trained in making a patient's family feel comfortable.  We are very lucky to be in this hospital.  My first request was to get a chair high enough that I can sit at Tobias' side and watch over him while putting my hand on his arm.  The second request was to have the attending neurosurgeon show me the angiogram from yesterday and explain it to me.  The third request was to have a physical therapist come show me what movements I could do with Tobias so that I can help him avoid stiffness and soreness due to laying in virtually the same position for so long.  I had been shown a few things, but I wanted to make sure I wasn't going to cause a problem for Tobias.

I was siting in the requested chair in no more than a few minutes.  The neurosurgeon came by shortly afterwards and took me through the angiogram.  I've been trying to understand what procedures are done and what they mean so I had seen some YouTube videos of angiograms for brain trauma patients and wanted to see what Tobias' looked like.  The word angiogram comes from two Greek words meaning "vessel" and "graph".  An angiogram is literally a picture of the blood vessels made possible by releasing a contrast medium into the arteries or veins and taking an x-ray to see where the medium flows.  It was incredible to see the images of Tobias' head with the arteries highlighted like branches on a tree.  The doctor showed me the angiogram from before the administering of the medicine and then compared it to the image after the medicine.  The before picture shows that one of the "branches" of the tree was slightly smaller than the vessels directly before and directly after.  The after picture showed a slight increase in the size of the branch, but to my eye the difference was minimal.  What was astounding, however, was the arterial system downstream of the constricted vessel.  In the before picture there was some faded highlights of the arteries as they branched off into smaller and smaller vessels, but in the after picture the same structure was evident, but instead of showing a faded network of arteries it showed dark, vibrant corridors for the blood to reach the brain.  It was easy to see how Tobias had a bad day and was unresponsive when I saw how much blood was not getting to his brain.  The vasospasms are caused by blood in the brain irritating the outside of arteries and causing them to "clamp down".  The medicine that was applied worked almost immediately, but it loses its effectiveness after 12 hours and the vasospasms will likely continue for several weeks.  Tobias will need to be monitored carefully to avoid more bad days like yesterday.

My final request was to have a physical therapist show me how to move Tobias' joints and muscles to avoid the pain that he must be feeling from lying in one position all day.  The lady from PT was very helpful and gave me more leeway to articulate Tobias' limbs than I was comfortable with.  I'm starting to work with Tobias with a nurse nearby to keep an eye on me to ensure that I don't move him the wrong way and pull out a tube somewhere.  He has plenty of them.  I worked on his feet, ankles, hips, fingers, wrist and shoulders.  He was very stiff and I think it was especially painful for him as I worked to straighten his fingers.  He usually has his hands gripped in a tight cramped position and I know how much it hurts me to straighten my fingers after I have held something tightly for only a few minutes.  I have to watch his heart rate and his blood pressure to ensure that I am not putting him under too much stress.  I'm looking forward to helping him stay as comfortable and limber as possible.  I don't like just sitting around doing nothing.

For the past two days the respiratory therapist has been giving Tobias some therapy to ensure that his lungs remain free of secretions so that he can avoid infections.  The procedure is called Intrapulmonary Percussive Ventilation (IPV) and is an automated program built into the ventilator.  It lasts 15 minutes and consists of the ventilator shooting short blasts of oxygenated air into Tobias' lungs at a frequency of two per second.  The therapist explained that patients on a ventilator are at a heightened risk for lung infections because their lungs aren't cleaned naturally from normal activities (walking etc.) and coughing.  The machine simulates the action happening in the lungs when someone engages in a physical activity that increases their breaths per minute.  By pumping the short bursts of air through the lungs the secretions are forced together where they can be suctioned off and removed.  The respiratory therapist said that Tobias has a very clean set of lungs and she didn't think that he would need the IPV therapy very often.  They x-rayed his chest before and after the therapy yesterday and he now has a clean bill of health.

Today was a good day.  Tobias looked more comfortable and he started moving his thumb again.  He doesn't do it all the time, but he was kind enough to move the thumb for mom and grandma to see.  He seems to know when I'm trying to record it, however, and he has cannily not been willing to cooperate.  We have worried that his NPi values (pupil reaction to light) have been zero for the last two days.  Happily his left eye started reacting again to light today.  He kept his left eye open much better today and although he wasn't tracking anything with it, he did seem to be looking around some.  His right eye has been swollen and probably pretty painful, but he started to open it a little today as well.

Tobias' condition is still changing on a daily basis and we haven't become used to the ups and downs so there has not been an average day yet.  It seems that we are either despondent from how hurt and vulnerable Tobias looks or elated that he has shown some surprising ability that we feared he had lost.  It will still require a miracle for Tobias to recover fully, but today the miracle looks a little more possible.