It has been a year since we were in the hospital with Sage as he was fighting for his life. Looking back on this past year reminds me of how lucky we are and how far Sage has come from those dark days last year. He is such a remarkable child and such a gift to our family. Boston Childrens feels like such a blur and reading these emails is such a valuable reminder to see the simple gifts in our lives this very moment. Ben Small wrote these emails to a group of friends which was incredibly helpful and awesome. Thanks Benny. Read from the bottom up. The emails start on March 2 to April 6th.
April 6, 2016,
Been a while. Got a comprehensive update from Stew. Things appear to be pretty darn good, considering this shunt surgery came up on them so fast. The reason it happened so fast was his clinical exams (blood cell count, physical function, etc) were getting consistently worse and not better. Liz and Stew felt something wasn’t right and so they brought him back to the ER and the neuro team thought they had exhausted all options and that shunt was really the only call. The MRI showed even larger ventricles than before and that indicated to them that it was prob a type of hydrocephalus again. Liz and Stew got nervous, because they had really just brought this up themselves to the docs. Concerns about being too super sensitive, etc. They had prolonged getting a shunt all this time because of the risks and now because the clinical tests were getting worse and they proactively reached out to the docs, the docs were saying they needed to put in a shunt and do it first thing in the morning without Dr. Warf there? Stew didn’t get a chance to even talk to Warf until right before the surgery. Was pretty stressful. More stressful than the other 3-4 recent brain surgeries they have gone though in the last few weeks. (How absurd is this? Katie and I are worried about Tyler’s cough right now… Can’t even make this up…)
Post surgery, Sage was in a lot of pain and it was hard for them to watch. They had to put him on morphine a few times to get him through it, which is pretty hard-core. He couldn’t hold his head up after the surgery, balance was bad, and initially they felt he was worse off than he had been after the last couple of surgeries. But the last couple of days have been really good and they are starting to think the shunt was the right call. He was out on the boardwalk yesterday for a stroll w Lizzy. She said he was super sweet, enthusiastic, smiling and seemed like he was back to being her boy again. He hasn’t thrown up in last day and a half, which I guess is a pretty big win. His sense of smell is still really strong, so can barely even see certain foods because the smell is tough for him. Stew gets nervous when he is alone w Sage (without Liz) at night, because he isn’t a doctor and is always prepared for the worst. Sage got Red Man Syndrome one of those nights which is essentially an allergic reaction to one of the antibiotics he has been on this whole time (Vancomycin) Freaked Stew out a bit, but all good now.
So they now feel like they are getting close to the “starting line” that I have referenced in the past. They are starting rehab now. Sage is doing 3 hours of rehab (both physical and mental) a day – gets pretty tired when doing so, but the kid is a warrior. His right side weakness is still there (has been since the sheering a few months ago), but his walking seems like its getting better – with a walker is already better than he was a week ago. His short term memory isn’t great. Stew will play games w him like putting a phone in his lap, tell Sage to concentrate on that and then ask him a minute later where it is and he often can’t do it. These are the things they need to try to re-wire in his brain during rehab. Given the plasticity of Sage’s brain historically, they are optimistic they they’ll be able to improve a lot of this. Time will tell.
Liz and Stew are alternating between Portland and Spaulding and it seems to be working for them for now. Stew is driving down to Spaulding now. Outside of keeping the risk of infection at bay w this shunt, their biggest hope is that Sage can just feel somewhat healthy for rehab. When he is in pain or sick to his stomach, he can be pretty irritable understandably. But when he feels good, he’s happy as a clam to work on his rehab and the nurses think he’s an angel, which of course he is. His markers/vitals are all trending in the right direction, which is a positive in itself. It sounds like they really could be at the starting line…
Keep the positive thoughts coming
On Tue, Mar 22, 2016 at 11:08 AM, Ben Small <firstname.lastname@example.org> wrote:
Just got out of surgery this morning. Dr Warf was able to widen his internal pathways to increase flow for his spinal fluid, (can’t do shunt yet because still some infection) removed external drain for now and sucked out some pus… great news. Here is a picture taken post op
Sent from my iPhone
On Mar 17, 2016, at 12:52 AM, Ben Small <email@example.com> wrote:
Katie and I went in to see Stew/Liz/Bryn today. Brought a bunch of organic foods and almond butter for Stew. He attacked the kale like a rabid dog. No utensils. Bryn is heading back to Hawaii for a week or so in a couple of days. She has been a rockstar. Def easier to cover bases w three than w two.
It was a good day I think. Sage was asleep so we didn’t see him. He takes 2-3 hour naps in the morning and afternoon. They seemed to be in relatively good spirits, but no one is sleeping much. There have been some frustrations with his sodium levels being too low and then too high and they had a scary night when Liz figured out his sodium was off and the staff hadn’t been on top of it. His fever spiked to over 102 that night and they started to think an infection was back. But he was better today. These mishaps seem to continue to happen. Stew thinks they must be dying to get him out of there. I think it’s fair to say he’s doing a bit more of the yelling than Liz. We had some laughs about some of the things he has said to various doctors.
Some of Sage’s symptoms have been getting better. He has been able to hold his head up for 10-15 min at a time, but then needs to rest it back on his pillow. His inward eye has been improving. His extensive yawning into gagging into puking has gotten better, but he still throws up sometimes when he eats. His longer term memory is better than his short term. He remembers friends and family in pictures and past events, but if they ask him what he just ate, he often won’t remember. He is discouraged. With the first 3 weeks, he made so much progress so quickly, that I think it was all very encouraging. This time, it is happening so much more slowly and he feels much worse. He never feels well, his head constantly aches, his muscles have atrophied and ache, he can’t get comfortable at night, he has trouble keeping food down, and they won’t let him drink too much water, because this sodium issue keeps popping up. There are 5x as many doctors this time around and they are coming into his room all the time. He doesn’t trust anyone, because there is always someone trying to stick something in him or make him go through all sorts of tests. Stew/Liz said the last few days have been hard to watch, because he is disappointed/discouraged and is hurting. He gets tired just trying to stand up and walk down the hall. He feels like he’s never getting out of there.
There is a lot they still don’t know. We saw pictures of Sage’s MRI next to an average human brain and the difference is astounding. They honestly don’t even look remotely comparable. The sheering of the white matter (they still have not figured out what caused this) kind of looks like they took a random piece of plastic and just placed it in the MRI right in the left/center of his brain. His ventricles are multiples the size of most people’s and the actual brain matter is more compressed up at the top of his cranium. For some reason, he is not able to drain his spinal fluid from his skull like most people, but his body continues to produce it, which has been causing the pressure issues. I think what Sage has already been able to overcome on this front is somewhat of a miracle. I may screw this up, but I think from the time he had his first hemmorhage at 7 days old, he has essentially re-wired his brain. Left brain / right brain and all that stuff we have read about over the years could actually be in somewhat different places. I think I wrote this before, but this was a reason why Stew didn’t want to drill a different hole for the second external drain surgery. His theory is that they wouldn’t be sure what they were drilling into. After seeing the MRI, I have to say I agree. On a positive note, perhaps this is a good sign for what Sage will be able to pull off this time around. His brain seems to be remarkably resilient. The kid is an angel…
All of this has been tough to watch for them, but I think they are doing well all things considered. From a next steps perspective, best case scenario is they can put a shunt in this coming Tuesday, monitor him for a few days and maybe release him next Friday. It will be a long road regardless. Wherever he is, he will need to to continue to get antibiotics by injection several times a day for the next several weeks. He will be doing hours of physical therapy every day. It sounds like they may go right from Childrens to Spaulding for his rehab. Sounds like the plan is for Liz to stay in Boston and work through it with him while Stew goes back to take care of the girls and come back for 3-4 days at a time. They are looking at other rehab programs as well. There is apparently one they are looking at closely out in CA that is an intensive 3 week program just for patients recovering from brain trauma. This is going to be a really big deal. They can’t wait to get to the point where they can start this process, because only then will they know how much they can get him back to normal. Stew kept saying, I can’t wait to just get this process started, but we still don’t know where the starting line is. Can’t imagine how tough this has been on them…
Onward and upward
On Tue, Mar 8, 2016 at 4:17 PM, Ben Small <firstname.lastname@example.org> wrote:
Big news – surgery went well, new drain is in, uneventful = huge. MRI looked stable. Did not think anything looked like it was effecting the brain stem, which they were worried about. Lizzy says he seems awesome so far. Check out the pic!
On Sat, Mar 5, 2016 at 11:01 PM, Ben Small <email@example.com> wrote:
Better day today after a horrible night. The white blood cell count skyrocketed to 4000 at 3:00am last night and Liz and Stew were worried the infection had been even worse than before. It was really discouraging and terrifying. However, the morning hours today sounded quite positive all things considered. He was more responsive and did some things he asked them to. Followed things w his eyes, said he was thirsty and said a few other words, squeezed Bryn’s finger really hard. They are not placing as much importance on actual white blood cell count. It’s obviously bad because it’s elevated trying to fight the bacteria. But the last amount of bug they found in CSF was lower than they expected. They were going to do an irrigation surgery (pretty medieval sounding) which is essentially raking the brain to get some of the puss and bug out, but after getting some good news, they decided against it (which is good) They got the susceptibility data from the Utah lab which told them that the two drugs Sage is now on were in fact the best drugs he could be on. Not knowing for sure has been a fear since the infection began, so it no longer feels like they are fighting blindly.
He had another MRI this afternoon and again came out of it in more of the old trance like state that he has been in the last few days. They are starting to think that maybe the MRI itself is stressful to Sage’s brain (loud, bright lights). He seems to be better in the morning when he has had more rest and quiet. So they are thinking of maybe pushing tomorrow’s MRI off a bit to see how he does. Not sure the doctors will go for it.
I talked to Bryn tonight and she told me that he’s going to need another external drain in the next 3-4 days. They are debating if they should use the same hole/location or a new one. She reminded me of something that I remember Stew telling me a year or two ago and that is since the first experience when he was just a week old, Sage’s brain isn’t like other people’s brains and may in fact not work like other people’s brains. His MRI’s don’t look like other people’s MRI’s. Certain parts are bigger/smaller or don’t appear to be exactly where they should be. So Stew and Liz are a bit worried about drilling a hole in a different location, because the surgeons might not know exactly what they are drilling into with Sage and what part of his brain they might be messing with. Tough dilemma. Dr. Warf seems to be listening to their concerns and is thinking a lot about it.
Lastly, and something that I think is very cool is that they performed a little ceremony in Sage’s room tonight before he went to sleep. They made Bryn Sage’s Godmother and some very nice things were said by all. Bryn said she thought Sage was aware enough that something was going on and seemed to be listening and then dozed off to sleep when they finished. She is coming out of her skin she is so honored/excited. She told me she can’t wait to check in at ICU tomorrow and when they ask her what her relationship to the patient is, she can say Godmother. We talked a lot about how much she loves all three of those kids. It is really something special. They are lucky to have her. I wonder if her husband knows she is never coming back to Hawaii:)
Good night. Let’s make tomorrow a good one
On Sat, Mar 5, 2016 at 12:47 AM, Ben Small <firstname.lastname@example.org> wrote:
little bit of a step back today. Gris, AJ, and I went in for about 40 min. Hung w Stew in the lobby. Inflammation in the brain is still really high and they were hoping that with the infection subsiding a bit that the inflammation would as well. It hasn’t. He isn’t moving as much or as well as they were hoping either. He still doesn’t seem to know who they are. Maybe Liz, but barely. The longer the inflammation/meningitis exists the more they worry about long term effects. As Stew pointed out today, Sage has had three brain traumas in his four years, two of which have occurred in the last five weeks. This is a lot to go through and the brain just doesn’t go through that without any issues. So they are dwelling on what those issues might be. We did have some laughs during the visit, which I think was prob helpful. Crazy to think about how long they have been in that hospital and how long they may have to be there going forward. Stew was talking about how they don’t know what day it is or even if its daylight sometimes. It’s crazy. In a good scenario, they will prob be at Childrens for another month and then maybe rehab for awhile at Spaulding. Stew said Liz sleeps at the foot of Sage’s bed every night. Can’t imagine they are sleeping much at all. Brynny is getting down there tonight. Hopefully, she can bring her positive energy to the mix and get Sage going.
News got a little worse tonight unfort. His white blood cell count has gone back up twice now, so they are concerned they might not have the infection wrapped up as much as they thought. They are thinking of adding a different antibiotic called meropenem. Still really only getting blank stares, not responsive much at all, not able to follow commands, etc. Liz thought he was having a stroke but hey think its delirium and they have put him on morphine. Stew feels like things are trending the wrong way again. I have to think that with brain traumas this severe, recovery is never in a straight line, but it’s depressing nonetheless. But he finished tonight w a classic quick Stew story…
“Tell everyone thanks for all the love and support. We need it. I sat on Liz knitting needle and it stabbed me in the ass close to my asshole. Bleeding etc pretty funny. Nurses got involved”
I love him. Keep them going tomorrow w texts. It needs to be a good day
On Thu, Mar 3, 2016 at 8:43 PM, Ben Small <email@example.com> wrote:
Good day today. Breathing tube out. Semi conscious. Arousable to uncomfortable stimulus but mostly out cold. Here’s a great pic. Keep the good thoughts coming
Sent from my iPhone
On Mar 3, 2016, at 10:36 AM, Ben Small <firstname.lastname@example.org> wrote:
Good morning folks,
Some good news last night and this morning. Last night, Sage opened his eyes a little bit and then wiggled his toes (I believe on command), which I would imagine is great. More good news is that in his CSF fluid this morning, they found less infection and less white blood cells which is great. His heart rate is still solid. Lizzy has been putting a lot of !!!! in her texts this morning, so I think she has been reenergized by this new progress.
His brain still has quite a bit of inflammation in it though. There has been swelling of the ventricle lining. Tough to gauge what this means yet. One would think if they can continue to knock down the infection that that inflammation will subside with it, but it may take some time. Apparently, they are going to do some sort of neuro exam today and they are hoping that this will tell them a lot more about how Sage’s brain is actually doing.
Keep the positive thoughts going. Let’s make today a good one
On Wed, Mar 2, 2016 at 3:48 PM, Ben Small <email@example.com> wrote:
some bad news and some good news. Doesn’t seem like the infection has improved although they have seen some pussing which perhaps means the body is starting to fight it more effectively. Not clear there yet. One good sign is that they have talked about seeing how he responds to taking him off oxygen tonight. I wouldn’t think they would suggest this if they were hyper concerned about his vitals, etc. I don’t think Stew and Liz have any intention of taking him off oxygen tonight though. Why mess w it? The other good news is that they had a nurse with them all night last night so they could both sleep a bit. A friend of the family who they know and trust. They also have the nurse they like best working the night shift for the next three nights which they are psyched about. This is the majority of an email I just sent Stew…
I just talked to two lab techs at Accelerate. They made me feel better that Childrens hasn’t been completely dropping the ball on the sending of the samples or the diagnosis of bacillus and the susceptibility. They said some hospitals balk at sending samples to companies that are not official “labs” and the product isn’t clinically approved, etc. Unfort in this case, they cannot help much w bacillus susceptibility because it’s anaerobic and not a blood infection. Very few labs even do work on bacillus – lot less common – unfortunate in that it’s very hard to get a species, genus only, so it’s almost like fighting blind. Most are anaerobic, so most don’t grow well, not a lot of testing for it, so they’re not surprised it’s taking so long to get a species and they are not sure they will. Almost no labs spend a ton of time on it, not very common in hospital environment. But good news is that bacillus happens to be very susceptible to vancomycin, which you said Sage has been receiving for close to 48 hours now. Vanco is one of the first that should be tried on bacillus, so they think this is good. They looked at a study of 89 isolated blood cultures w bacillus and almost all responded to Vanco. The negative is that the infection is in his CSF/brain and they don’t know how many of those 89 were in the brain.
Another drug they told me to have you look at is FLAGYL – metronidazole It’s an anti-parastic – usually really good against most anaerobes and bacillus in particular they thought, but prob a decent leap from cefepime and vancomycin (the two drugs Sage is currently on)