Day 21 (Sep 15)

Bottom line: Tobias had a good day.  His storming was more persistent and intense than yesterday, but is still an improvement over the storming he experienced a few days earlier.  The last few days have been a relief for his body and for his parents.  He received a fancy new haircut, but they have to be careful around the incision along the top of his head so his hair is longer there.  Yesterday he had a mullet, today it's more like a mini-mohawk.  With the oxygen sensor in his nose he's cutting the figure of a punk rocker (kind of).

The big news is that he moved his thumb on request again.  He also yawned and bit down a few times when the nurses were cleaning his mouth.  His vital signs are well in the safe region and he went through the entire night and day without the ventilator.  He is making progress.  Our optimism is slightly tempered by the knowledge that it may still be weeks or months before his brain is ready to come back online and even then he may be faced with serious physical and mental deficiencies.  We see the small steps of progress and want to have our son back right away.  We are grateful for the care he is receiving in the ICU and hope that he will be able to stay longer.

This image has not been photoshopped.

Tobias loves biology.  I've written about this before.  He has been wired for biology since he could walk.  Very soon after starting college, he knew that he wanted to become a medical researcher and would have been in his undergraduate junior year now.  He is looking forward to getting a PhD and was working in a research lab at his school to publish a paper, a good sign for top bio-tech programs when selecting their incoming graduate students.  Tobias was often found on the couch watching nature programs and he surprised us several times by the odd details that he could recall from these programs.  David Attenborough was Tobias' favorite presenter.  Today the bluetooth speaker is playing some of David Attenborough's broadcasts to Tobias along with the recordings from his friends and, of course, classical music.  Come on, Tobias.  Listen, hear and wake up!

I keep expecting to have a day with almost nothing happening except for Tobias to rest peacefully.  I would like for Tobias to go a day without storming, but I think we are some time away from this happy day.  The day started out with good news on the non-Tobias home front.  Our daughter, Emily, walked out into the breakfast area and announced that Eloise, one day short of being eleven months old, had slept through the night without waking up.  This is a first.  It was a good way to start the day.

Katja and I arrived at the hospital and were surprised to see how much the swelling in Tobias' brain has visibly receded.  We were told that the side of his head with the missing cranium will look sunken in when his brain shrinks back to normal size.  It is on its way.  We were also happily surprised to see Tobias' eyes slightly open, which we haven't seen for days.  Excitedly I greeted Tobias and tapped his shoulder to keep his attention.  I asked him to move his thumb for us and he did!  It was a small movement, but it was very clear.  I set the phone into video mode and asked him to move his thumb again, which is usually a no go, but this time he was able to move his thumb minimally twice.  It was no more than a small twitch, but it put mom and dad into a great mood.

The nurse entered the room shortly and confirmed that she had also seen Tobias move his thumb earlier in the day.  His pupils were still non-reactive and his storming soon put an end to further responsiveness, but it was nice to be present for that moment of time.  We learned from the nurse that Tobias had quite a night.  His storming was worse and he had had the hiccoughs again.  He also threw up some of the liquid food that gets pumped from the "Kangeroo" bag through a small white rubber tube into his stomach through "the peg".  This could be a sign that something bad is happening, but the nurse checked for blood or bile and found none.  It was just the food smoothie.  She reported the vomiting to the attending surgeon, who after asking a few clarifying questions, determined that this was a freak occurrence and doesn't need to be acted upon.

Tobias' nurse is taking him for another CT scan today.  She isn't sure why, but mentioned that the medical team is aware that he stopped responding a few days ago and that he threw up this morning.  The CT scan may have been ordered as a precaution or as a last check before he is moved out of the ICU.  We don't know and so we are left trying to read the tea leaves and make an educated guess.

Two nurses had recently returned Tobias from the CT scan when we arrived back from lunch.  They were getting him ready in his bed and had just completed his oral care, which consists of brushing his teeth and suctioning out his mouth.  The nurse was excited because Tobias had opened his mouth by himself to accommodate the cleaning.  Unfortunately in an unlucky coincidence, Tobias experienced a storming episode just as his lip was moving passed his teeth.  His mouth clamped down from the storming and caught his lip.  The pain increased the storming and Tobias bit down harder.  This vicious cycle was painful to watch as the nurse struggled to free Tobias' lip from between his teeth.  I tried to work on his arm because it seems that he can be coaxed out of a storming episode if the rigidity in his arms can be relaxed.  I got his arm to loosen up and his mouth eased, but his lip remained trapped in his own bite.  The nurse went looking for something to use as a wedge and discarded several items because they would break in Tobias' jaws.  Finally he came back with a small syringe and after a few tries he was able to get the jaws to open enough to free the lip.  Luckily Tobias will only have a swollen lip.  He didn't bite through and there was only a little blood that needed to be cleaned up.  About an hour later the nurse was working on his oral care again and he bit off part of the tool off that she was using to clean his mouth.  He's getting dangerous when he's storming.  The nurse called the same male nurse who helped to clear his lip and together they managed to retrieve the piece of the tool that Tobias chomped off.

The hospital has been keeping Tobias' sodium levels high because increased sodium in Tobias' bloodstream draws water out of the swollen brain cells.  The high sodium level has contributed to the reduction in Tobias' brain swelling, but his sodium levels are now being lowered since the swelling has reduced and high levels of sodium are not healthy over a long period of time.  It will be interesting to see if the edema continues to recede at the same pace.

The staples holding his skin together have been removed.  There are a few random staples still in his head, but for the most part his head is now non-magnetic.  He was able to keep the T-piece all night and all day.  His breathing and oxygen levels look great.  The next step is to remove the T-piece and put a plug in the trache so that he will have to breathe through his nasal passage.  This is a bigger step than going from the vent to the trache so it may take more time, but Tobias has been progressing well with his breathing.  Tobias also yawned today several times.  The yawns are not signs of consciousness, but may indicate that he is progressing on his journey to waking up.  We heard back the results of the CT scan.  No changes and no news is good news.

Hope over fear.