Thursday, April 28, 2011

T+15: Dare we say "outpatient" next week?

BMT doctors are loathe to talk about release dates.  There are too many variables.  They do expect the unexpected, and you'll get out when and if all of the planets align.  So I was fairly surprised when Dr. Tolar said that, yes, if everything continues to go this well, we might be released back to the Ronald McDonald House next week.
I didn't mean for this
picture to look so evil.
I think Sarah is actually
smiling back there.

Ethan's progress over the last 96 hours has been amazing.  His white blood cell count went from .2 to .6 to 1.0 to 1.9 (today).  Yesterday, was the first day that the lab was able to get a differential and calculate his absolute neutrophil count (ANC).  The doctors usually start talking about release when a patient has an ANC above .5 for three consecutive days.  Ethan's first ANC debuted at 1.0 and today kept going north to 1.3.

It's absolutely true that Ethan is currently taking a medication (GCSF) to stimulate his white blood cell production. It's absolutely true that his numbers can and likely will dip, and will certainly decrease once he comes off of GCSF.  But we're all, including Dr. Tolar, very happy and  Dr. T says that these are signs of strong engraftment.

Yaay, doesn't begin to cover it.  Dancing doesn't come close to expressing it.  I feel lighter today than I have in a long, long, long time.  I get giddy when I think about how well he's doing.

It's hard to believe that on Monday, just after Ethan's fever broke, Dr. Tolar said that he had expected that Ethan would develop sepsis because they weren't bringing the infection under control.  I'm happy enough with where we are today, that I won't get on his case for not bringing those concerns to us when they first occurred to him Saturday and Sunday. (Though knowing me, I'll probably bring it up in discussion later to try to understand why a doctor would elect not to share that information.)

Make no mistake, Ethan is still healing, he's still at risk of developing an infection and we've got a ways to go. He's still on a constant morphine drip.  We're reducing that day by day as his throat, mouth and GI tract continue to heal.  Even though the number of key white cells is in the normal range, his white blood cell count as a whole is very low; in addition to which he continues to need red blood cells and platlets--though the interval between them is lengthening.  

As Ethan continues to heal over the coming days, we'll be moving most or all of his medications from IV to oral meds.  There's no good way to shove this much medicine down anyone's throat, let alone a toddler's.  Not to mention that many of these meds cause nausea or taste awful.  We know from previous experience that there's a whole lot of vomiting in our future.

Finally, at the moment Ethan is still on 24 hour TPN (IV nutrition).  They'll probably try to reduce him to 16 hours a day before releasing him.  (Which means Ethan will be on an IV 16 hours a day when he comes back to the house.)  Then they'll reduce him to 12 hours.  At each point we'll try to get him eating his own food again.

All of this could change at any time.  He could develop another infection tomorrow and could easily be in the ICU tomorrow.  All we can do is enjoy today and take it one day at a time.

Ethan's grandma, Lilianne is coming in tonight for a three week stay.  Her timing couldn't be better.  As Ethan's energy is coming back quickly and he'll want to play more and more in the days before they let him out. It'll be nice to have another grown up to play hide and seek with, or to pull the IV pole behind him as he moves around the room.

On Saturday, all of the pediatric patients in the hospital are moving to a new children's hospital building across the river that they just completed.  It's a state of the art facility from a patient, parent and a staff perspective.Saturday morning, it will be all hands on deck.  Our Care Partner volunteer, Sue will be over at RMH with Caleb.  Sarah will be transporting in the ambulance with Ethan, and Lilianne and I will be shuttling over.  It's going to be a busy day, and somewhat stressful for Ethan as he'll be strapped to a gurney with a face mask on for the move.  But it'll be great once we get there.

Caleb at lunch with his classmates from the
RMH charter school

Tuesday, April 26, 2011

T+13: Ethan's a Superstar

With physical therapy this morning
Nothing but good news today.

The Summary:
CT Scan showed that the lung nodules are actually SMALLER.
Sinus CT showed no absess and resolution of an inflammation there.

Temp: 98.3, fever free for 36 hours
White blood count: 0.7
Glucose: hyperglycemia resolved over the last 36 hours without need for insulin.  Two moderate glucose spikes within the last twelve hours

Today's plan:
Stopping the voriconazole
Red blood cells infusion
Dialing back the pain meds

Ethan is making steady progress and overall, it's been a very good 24 hours.  I'd like more like this, please.

CT Scan
Ethan needs to wear a mask when he leaves the room to
avoid viruses.  Swaddling him was the best way to
keep him from pulling off the mask.  He didn't seem to mind
it and started to go to sleep in my arms.
Ethan was scheduled to go down for his CT scan at 8 am yesterday morning.  When they came to get him, they said that they weren't planning to sedate him and were just going to give him some benadryl.  (I'm sorry, what?  How many times have we been down this road?)

When I told them that Ethan would need to be sedated, they came back and said will then they would have to wait until Tuesday because they couldn't get anesthesiology scheduled.  (I'm sorry, what?  You're seriously going to hold this another day?)  I was fairly frustrated and angry and told the LNP that he needed to be sedated and that it needed to happen today and that if she couldn't get it scheduled then I expected Dr. Tolar to escalate it until it could get done.  They came back about an hour later and said that they'd been able to schedule him to go downstairs at 2p.

We went down at 2 and were back in our room by 4.  With Ethan, sedating him for a CT is a pretty easy chemical sedation through his IV.  He hasn't needed to be intubated and recovers pretty quickly.  This was more of the same.

We got the results around 6 yesterday evening.  The larger nodule in his upper right lobe decreased in size from the last scan and has now been classified as stable since the initial scan on 1/10.  The radiologist could not locate the upper left lobe and lower left lobe nodules either because the cross section didn't catch them or because of lack of full inflation of the lung, or because they've reduced in size.

It was completely fantastic news!  The only better news I could have imagined is all of the nodules had disappeared.

I talked with Dr. Tolar this morning, and he agreed that it was great news.  I asked him if he could interpret anything from these results; for example, does the fact that they haven't flared when Ethan was at his most vulnerable and that they reduced mean that they were active infections that responded to treatment, and does this mean that the nodules won't be an issue going forward?

To the first he said, there's still no way to know whether they reduced in response to treatment or if they were scar tissue that is naturally reducing over time.  To the second he said, unfortunately, no, it does not mean that the granuloma won't be an issue going forward.  It simply means that they're not an issue now.

When I got the report yesterday, it was like this weight had been lifted, and I reflected on the last few months of living under this low probability but high risk death sentence. Oh, how I really wanted Dr. Tolar to tell me that we wouldn't need to worry about the granuloma any more.   But, that doesn't detract from the fact that Ethan is doing really great today, so I'll take what I can get and push that worry at least a little further back in my brain than it had been.

Since Ethan was going down for a scan anyway, Dr. Tolar asked that the scan cover his nasal passages as well.  Ethan had been sniffling some over the past few days.  I had assumed that it was normal soft tissue breakdown from the chemo and radiation.  Dr. Tolar said no, it was evidence of an infection and while we were there he wanted to have it checked to make sure it wasn't an abscess.

The CT scan showed resolution of pansinusitis (an inflammation).  So, evidently it was a bacterial infection that the drugs kicked back.

In other news
Ethan's last "fever" was Sunday evening.  (That's a little misleading because the hospital doesn't consider anything under 100.5 to be a fever,  So they don't include the 99.8 temp he had yesterday.)  Anyway, overnight and so far today his temp has been well and truly normal, which is good, good, good.

The resolution of the fever and underlying infection (whatever it was) seems to have taken some of the stress off of his pancreas and his glucose levels have largely returned to normal ranges without insulin.  He's had a couple of spikes, but his insulin drip is still hanging on the pole, so the nurses can administer insulin as needed. I'd prefer to be able to check off that worry as completely resolved.  But he's getting over the hyperglycemia faster than I thought he would, so I'll take what I can get.

His white blood cell count was 0.7 at 4a and 0.6 at 8a.  I'm assuming that the difference is basically sample variance.  Regardless, he is engrafting and that's the important thing. His counts aren't high enough yet for us to get a differentiation that will tell us what his absolute neutrophil count is.

Some Really Good News
that I haven't had a chance to throw into the blog yet
Before he finished his rotation as the attending on the ward, I was talking with Dr. Orchard about graft versus host disease.  He said that GVHD isn't a very big concern with this protocol.

Huh?  What?  Everything you read and everyone you talk to will tell you that GVHD is potentially a very significant complication in BMT.

Dr. Orchard went into a very technical explanation that was largely over my head. The part that I caught boils down to this: the Campath (one of the drugs in Ethan's chemo protocol) tends to retard the production of a partiular type of T Cell, which is a type of white blood cell, that plays a part in GVHD.  Absence of that type of T cell results in very low levels of both acute and chronic GVHD.  In fact, he said, of 30 patients they've seen no acute GVHD and only two cases of chronic GVHD, both of those in adults (though don't ask why in adults and not in children, I don't know.)

On the other side of the equation, evidently the immune response, particularly to viruses, takes longer to recover in patients who receive Campath.

But any BMT parent or patient reading this will recognize that a reduced incidence and risk of GVHD is very good news!  I had been thinking of it as our next big hurdle once enfraftment starts taking hold, and I was thrilled to find out that it likely will not be a concern.

On a related note, UMinn does it's first check of engraftment level at T+42, so we'e got a ways to go before we get any word about where the donor vs host question stands.  But at the moment, he does appear to be engrafting.

With all of these positive things going on, we're starting to reduce his pain meds.  I'd say his pain and pain meds topped Saturday and Sunday, when he was getting a high baseline with additional boluses ever two to three hours.  Sunday evening, we scaled back the additional boluses to every 3-4 hours.  Monday day, he only received one bolus in the morning, one in the afternoon  and two overnight.  So far today, he hasn't had one.  So it looks like today we're going to lower his baseline.

He's still very fragile and has a long way to go.  Yesterday morning, a whole bunch of people were prodding and poking him and he got visits from speech therapy, occupational therapy and physical therapy trying to tempt him to play and work. He was too tired to do any of it.  When PT came by, he recognized that they had the toys that he likes, but he still didn't have the energy to play.  When PT left he cried for five minutes out of fatigue and frustration because he was too tired to play.

But PT did stop by today and Ethan got out of bed for about 10 minutes and had fun playing before he wore out.  He's getting some red blood cells today, so hopefully he'll have some good energy when speech therapy comes by this afternoon.  Speech is 0 for 4 with him so far, so I'd really like them to have some good luck.

As I said above: more days like this please.  And we'll just keep taking it one day at a time.

I hope you enjoy the video, below, from PT this morning.  Notice when he signs finished at the end.  He then proceeded to lay down on the floor and put lay his head on his arms to make sure we got the point.  I'm sorry I didn't catch that.

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Sunday, April 24, 2011

T+11: CT Scan Monday

We had a detailed conversation with Dr. Tolar, the current attending, today about Ethan's condition and CT scan.

Sarah and I were pushing for the doctors to classify this as an emergency and pull the staff together to get this done.  Our reasoning was that if this infection actually does stem from the granuloma in his lungs, then it is an emergency and we need to address it, but we won't know without that CT scan.

Dr. Tolar said that yes, he thinks this is as important as we do and is as anxious to get the CT scan done.  However, looking at all of the data and the available options, it doesn't make much difference one way or another whether we do it today or Monday.

In assessing Ethan's condition, Dr. Tolar said that if this were the granuloma, he would expect Ethan's condition to be much worse than it is.  Specifically, he said that Ethan likely would have already gone over to the intensive care unit with specific respiratory problems, and that the level of infection would be so high that the fungal cultures they took would have come back positive by now.

He said that with our consent, he's going to start Ethan on Voriconazole today anyway, just until the CT scan comes back negative and we're sure. He said this is the same thing that he would do if the CT scan comes back positive. Further, it's the only option available if the CT scan should come back positive, so in effect we're doing all we can irrespective of the CT scan.  Dr. Tolar also said that he estimates the likelihood that this is from the granuloma to be about 10%.

Voriconazole is a drug that we talked about using with Ethan when we were trying to clear his granuloma before admission.  It's a drug with some significant side effects, most notably on liver function.  The side effects are significant enough that no one wanted to prescribe it in the absence of a positive CT scan.  Dr. Tolar says that he is going to step up the frequency of blood draws for liver tests from twice a week to every other day, and he's confident enough that he can catch any liver damage before it gets too far along.

He asked if we agreed to this course of action.  As is so often the case, I explained that neither Sarah nor I are doctors and while we try to educate ourselves about Ethan's condition and treatment, we don't have the expertise to weigh his condition against the potential benefit or side effects of a particular medication.  As such, the only thing we can do is trust his judgement.

Dr. Tolar says that Voriconazole is an effective and reasonably safe drug.  I expect that it is certainly effective.  But, as to the safety of the drug, I think if the side effects weren't significant then Ethan would have been on it before now.  The reality is that we're starting him on a drug with serious side effects because the hospital isn't staffed with a pediatric technician today who can do a CT scan.  But, we'll get the results from the CT scan by mid-day tomorrow and can take him off of the drug if the scan is negative.  All things considered, I suppose it's a reasonable risk, if for crappy reasons.

Looking at Ethan's fever and assuming that it is a bacterial infection unrelated to the granuloma, Dr. Tolar said that he's fairly happy with how Ethan is doing.  Ideally, he said, the antibiotics would have knocked out the fever by now.  It's worrisome that they haven't done so.  But to paraphrase Dr, Tolar, I think he considers that the infection is partially under control, because, he said, if it were not he would expect that Ethan would have developed sepsis by now.  (Gee, isn't that comforting?)

In other news today, Ethan's white blood count is 0.2 (x 10^9) today.  That's very good news.  White blood cells are, of course, the body's healing cells.  I asked Dr. Tolar if 0.2 actually meant anything (Normal is 5.5 - 15.5 (x 10^9)) if such a low level really makes any difference? He said yes, 0.2 does make a difference.  He said it's important to note that this number is simply  the number of white cells in the blood and does not count the white blood cells that have been absorbed into Ethan's tissues and are helping to heal his mucositis, etc. So that was good news,.

Another recent change is that they seem to have his insulin dosage dialed in.  So that they don't need to do hourly blood draws to check his glucose level. Sarah and Ethan had a long night Friday night and a long day Saturday with ERT, hourly insulin checks and the abortive CT scan.  So it's nice to have one less reason to prod him at the moment.

Unfortunately, we've got to change the dressing on his central line today.  This involves peeling off the 4"x3" dressing that's adhered to his chest, cleaning the skin and applying a new dressing.  Dressing changes are painful for him under normal circumstances.  Today, with his energy low, his nerves raw, and his pain threshold pretty well maxed out, it's not going to be any fun for anyone--but especially for him.

Oh damn.  I just remembered that I forgot to ask Dr. Tolar if it's okay if Ethan gets a tattoo to go along with his newly shaved head.  I think he'd look super cool with a black leather biker jacket and an "MPS Sucks!" tattoo on his bicep.  Maybe tomorrow.

Thanks for checking in all.  We're taking it one day at a time.  Everyday here without a crisis is a day of rest and healing.

Saturday, April 23, 2011

T+10 Update

A quick update.

Ethan was taken to radiology at 3 this afternoon. But even with the seditive affects a whole bunch of morphine in his system, he did not lay still enough for the scan.

They'll have to do a sedated CT on Monday unless the BMT docs request an emergency CT tomorrow.

Hopefully, this extra time will show that the antibiotics can work against this infection and the scan won't be necessary at all.

I'll post additional updates as when we know more.
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T+10: CT Scan to Check Infection

Sarah called from the hospital this morning. Since Ethan's fever still hasn't broken, the doctors are working to schedule a CT scan to make sure that the granuloma in Ethan's lungs are not the source of the infection.

Early on, I had talked to the doctors to see what their plan would be to check those granuloma in the event Ethan developed a fever. They said at that time that the typically wait 3-5 days, but in Ethan's case, with his history, they would want to do a CT scan pretty quickly, so no more than three days of a fever that didn't respond to medication.

Given that the fever broke earlier this week when we was on vancomycin, I'm very hopeful that this is a bacterial infection and not the granuloma. But, honestly, I'm pretty scared. If this is the granuloma it does not bode well for Ethan.

Sarah said they're going to try to schedule the CT today, but it may be tomorrow since this is the weekend. We'll let you know as soon as we hear the results. In the meantime, we'd appreciate your prayers and site thoughts.

In other news, Ethan's hair started coming out yesterday. Sarah and the nurses are going to shave him today. I've been promised lots of pictures which I'll be sure to share.

Friday, April 22, 2011

Pain Management and Fighting an Infection

An owee, feverish and slightly
swollen Ethan.
As expected, the last few days have largely centered around pain management.  Ethan is also dealing with a likely bacterial infection.

Ethan's mucositis and pain have gotten worse over the course of the week.  Early in the week we were treating Ethan's pain with morning and afternoon doses of Tylenol supplemented with one to two boluses of morphine overnight when the pain seemed more severe.  But he's needed steadily stronger meds and doses as the week has progressed.

The main areas of pain are Ethan's mouth, his throat and his gut.  In his mouth, his tongue is very pale and white, indicting that mouth sores may be developing.  It's also likely that Ethan is developing sores in his throat and GI tract as well. Sores in his mouth and throat would be irritated by the normal movement of his mouth and tongue or swallowing food. Sores in his GI tract are irritated when gastric acid flows by them.  The doctors say that gastric acids tend to build up at night, so its not surprising that GI pain would occur more strongly at night.

Tuesday, when he was on Tylenol, he felt like a kid with the flu, kind of achy and didn't want to move much.  When he started showing signs of being in pain even when sitting quietly, then we moved him over to the morphine drip.Wednesday, the morphine helped him forget about the discomfort for a while and we were able to get out of bed and play for a while.  Thursday, he was comfortable snuggling in bed, though he really didn't want to be moved at all.  Thursday afternoon his mouth and throat really started to bother him and to overpower the baseline morphine.Wednesday afternoon, we started Ethan on a steady stream of .45 mg/hr of morphine.  Wednesday night, we supplemented that with two boluses.  As of yesterday evening Ethan was still on the same base rate, but starting at 7 pm we started giving him a bolus every 2-3 hours.  Today, the doctors stepped up his base rate to .60 mg/hour

We've worked hard to stay ahead of the pain and keep Ethan reasonably comfortable. But it's all best guess since he can't tell us himself how much pain he is in.  Obviously, pain tolerance varies widely from person to person.  As parents, we don't have the experience of working with a lot of different patients to know when Ethan's pain is significant enough to request a bolus or an increase in his rate.  Too much morphine will depress his respiratory system and will mean a longer period to--eventually--wean him off. At the same time, if we wait too long and get behind the pain Ethan will suffer needlessly and it will take larger initial doses to dig him out of the hole.

Until yesterday evening I was feeling kind of clueless about how to approach this.  Then I talked with the evening charge nurse about this and she confirmed what I had been doing was a good rule of thumb..  Basically, Ethan's morphine drip should be sufficient to allow him to sit and rest without pain. In addition, since Ethan has tended to experience higher levels of pain overnight, we're approaching that more aggressively with regularly scheduled boluses so that he can sleep comfortably.

So far, this seems to be working.  Ethan had a decent night.,  This morning he had additional boluses at 7 and 11, and at noon the nurse came in and programed his new base rate.  At the moment, he and I are snuggling on the bed watching Toy Story 2 (for the 3 millionth time), while I finish typing this entry with one hand.

But, we are on the downward slope of this and Ethan's pain and overall condition are going to get worse before he gets better (when his body starts making white cells so it can heal itself again)..

Fighting an Inefection
His blood work this morning revealed increased potassium and glucose levels.  His potassium 3.6 at the beginning of the week, 4.7 yesterday and the initial test today showed 5.7 before a retest showed 5.2.  His glucose has jumped from 84 yesterday to 427 today. (Normal range is 60-99).

Ethan had a fever at the beginning of the week.  They did a blood culture to test for a bacterial infection and put him on a stronger antibiotic, vancomycin. His fever went away on Tuesday and the culture came back negative so they took him off of vanc yesterday.  The fever came back last night, so they took another culture this morning.  We'll see if he goes back on vanc.

Sure enough, the doctor thinks he's got a bacterial infection.  They've also taken some blood to test for a fungal infection. But the fact that his fever came down while he was on vancomycin seems a pretty strong indicator that this is bacterial.

The doctors have also asked for an endocrinology consult and it seems likely that Ethan will be put on a short-term dose of insulin to combat the hyperglycemia,

To sum up, Ethan feels partly to mostly crappy, but we're dealing with it and with all of the opiates in his system he still pretty much resembles a kid with a bad case of the flu.  That will change next week when his hair starts falling out, but hopefully it'll still be under control and he'll just look like a bald kid with a case of the flu.  And as the doctor put it when he came by this morning, our job for the weekend is getting the infection under control.

Sunday is Easter and Sarah's birthday.  I know that RMH has a huge Easter egg hunt scheduled. (It will supposedly take them two hours to hide all of the eggs.)  On Saturday, I'll probably pick up some carry out and we'll have a small celebration in Ethan's room. We just found out that my mother is coming to town next Thursday and will be here for three weeks.  I'm sure that while she's here Sarah and I will find a chance to go out for dinner.

I hope you all have a great Easter weekend filled with friends and family and the signs of spring.  (If you find any of that last bit, send some up here, we could use it,)

Tuesday, April 19, 2011

Wow, he's doing great.

Drawing with the occupational therapist
on Monday.  They're working on circles.
Okay, I admit it, this blog might be a bit of a downer.  I mean,. I may sometimes lapse into cautious optimism (with a heavy dose of future realism), but I don't think anyone would call me a pollyanna.  So you may understand how difficult it is for me to say what I'm about to say.

Wow, he's doing great, I'm really, really happy!

He is doing great. There's just no other way to put it. (And trust me, if there were, I'd find it.)

The quick summary is that his energy and mood during the day are great for what he's going though, and pretty decent even without that.  During the day, he's basically like a kid with the flu.  He might get up and play for a few minutes, or enjoy a short tickle game.  But mostly, he's content and comfortable just snuggling up on your lap.

Thursday - Sunday night he had some problems with nausea and vomiting.  There's nothing left in his stomach at this point, but he's bringing up a fair bit of bile.

Sunday and Monday night he had a couple episodes of pain each night which we treated with morphine.

Monday morning while he was asleep he got some platelets. (Thanks donors!) Which is completely normal.

Monday morning he developed a fever of about 101-102, so they put him on a third anti-biotic, vancomycin. By this morning his temperature was back to normal.

Yesterday evening, Sarah and Caleb came by and the four of us snuggled up on the bed and watched a movie.

His blood work and liver function look fine.  No signs of organ problems from the chemo.

His eating petered out on Sunday.  Sunday night the doctors started him on TPN.  So he is getting all of his calories and nutrients IV at this point.

I think the biggest news is that he's not in constant pain and doesn't yet need a continuous morphine flow.  The pain he's experiencing overnight seems to be centered in his mouth and throat, so he may have some sub dermal mucositis from the chemo and radiation.  His diaper area looks great.  His skin under his diaper is darkened, but I wouldn't classify it as even as bad as a standard diaper rash.

Shellacking front and back with desitin.
I was looking back at our journal entry from about this point in Ethan's first transplant.  At the same point last time, Ethan had a day or two of moderate to significant pain and we were playing catch up and trying to get ahead of the pain.  Also at this point, his diaper rash was much more advanced.  The skin there eventually cracked and Ethan later developed an e-coli infection.

In short, I couldn't be happier with how he's doing today.

One of Ethan's IV lines came undone this morning.
Since there wasn't anything going IN and the line wasn't
clamped, blood started flowing OUT of the line.  It
certainly got my attention, but just required a line change
and hooking him back up.  Ethan was content to watch
Despicable Me throughout. 
Looking down the road. (Yeah, you knew I had to go there.) It's highly likely to almost certain that his pain is going to get worse in the next day or so.  The doctors, nurses and I are all talking about putting him on constant morphine as if it's a foregone conclusion and the only question is when.  And really, it is.  The trick is getting over our parental pre-disposition against over medicating our kid and get the constant morphine started quickly.  We do need to stay ahead of the pain.  It takes a lot of time and undue stress for Ethan if we get behind the curve and have to play catch up.

Infections are and will continue to be a constant concern.  At the moment, Ethan's on three different antibiotics, an antifungal and an antiviral medication.

If all goes well, we should see signs of enfraftment in another 8-10 days.  That will bring along its own set of potential complications.  But that's a concern for another day.

Today he's doing great and we're very happy.

Friday, April 15, 2011

T+2:Pushing the Needle

A benadryl enhanced nap.

Ethan is taking a benadryl enhanced nap while he receives a unit of red blood cells.  I'm going to try to squeeze in an update while he's sleeping.

Ethan's doing very well for T+2.  What that really means is he's in very good shape for what's in store the next couple of weeks.

Most notably, he's still eating moderately well, and his energy and mood are still decent.

His blood pressure has been hovering in the one-teens to low one-twenties over 70 or so and his resting heart rate has been in the 140s to low 150s.  So they've upped the dose of his stage one BP medication.  He's been running a temp in the 99s for the last couple of days.

O Neg blood.  Thanks blood donors!!
Overnight, he's been having some problems sleeping.  The night before last he woke up during midnight vitals and didn't get back to sleep until 4a.  Then the silly bear figured he didn't need a nap yesterday.  At bedtime the goofball passed out less than 30 seconds after he settled down.

Unfortunately, he had some discomfort that looked like mild gut cramps early in the evening.  That's not too surprising and will probably get a lot worse before it gets better.  Fortunately, with a dose of benadryl at 1230, he was able to get to sleep about 1a and had a good rest of the night.

All of that is completely normal.

Specifically, looking at his blood work.  His hemoglobin is down, which is completely normal since we've destroyed his blood making factory, hence the red cells today. His platelets are still really good, but we're not really sure why.  It wouldn't be surprising for him to need platelets by this point or in the next couple of days.  But his platelets spiked back into the high normal range on Tuesday or Wednesday, and while they're declining, he doesn't need more yet.

The white board that Sarah started to help
us keep track of meds, questions and
the plan for the day.  (Her's is the
legible handwriting.)
His liver function numbers (AST & ALT) hit the 120s a couple of days ago (normal is 40s-60).  This is a normal reaction to the toxicity of the chemo regime.  When the numbers hit the 200s, the docs start adjusting his medications to reduce the toxicity load, and they don't really start to worry until the numbers reach 400-500.  Ethan's numbers came down in to the sixties within a couple of days.

The medicos are thrilled that he's still eating anything.  They say a lot of kids would have stopped a week ago at about T-4.  I'd say his overall caloric intake is about 1/2 - 2/3 of normal.  The folks here are much more agressive about putting kids on IV TPN feeding.  It makes sense, because you want to make sure that the kids are getting enough nutrition to fight and heal.  But TPN has its own complications and running a 16 hour IV feeding outpatient is a drag, so everyday he doesn't need TPN is a little victory.

Diaper rash will be a big pain for him and a big worry for us over the next couple of weeks.  The toxicity in his urine and stool damage the skin and his body isn't making white cells to repair the damage.  Not only will it cause him a fair amount of pain, the skin may well crack which could lead to an infection that his body can't fight off.We're starting to see a little diaper rash appear on his groin We're going to see if we can get ahead of that.  Fortunately, his butt still looks great!

 The medical staff are doing their thing and they're doing a good job of it.  For Sarah and I, our job at this point is to try to focus on his rest, his eating, his skin and mouth care.  On most of these items, I think we're bringing in our understanding and in some cases our own supplies to push the needle a bit and help keep Ethan as strong as possible.

On food.  Like many Hurler's toddlers, Ethan still eats jar baby food.  (I'm sure there's a reason for it, but don't ask me to explain it.)  At various points he varies between 1/2  - 3/4 table food and the rest jar food, but he never finished with it completely.  Since he's been inpatient, he's hardly touched solid foods.  Sarah and I have moved him over, almost completely, to jar foods.  And since the chemo has screwed with his taste buds, we're buying and bringing the same brand of baby food he's used to, even focusing more on the savory selections--e.g. pureed chicken stuff--versus sweeter selections.  Sarah's been great and made a number of runs mid week to pick up more of his brand and bring it in.

Over the last day or so, his jar food intake has dropped off, so I tried him on Cliff Bars.Ethan has eaten them at home and likes them.  Cliff bars are nice because their soft and chewy and pack in a ton of calories with somewhat better nutrition than a candy bar.  So far that's working okay, and we're supplementing that with other salty and savory things like Sun chips and pretzels.

We won't be able to keep him off of TPN forever.  But every day he keeps eating is one less day he's on it and hopefully a shorter time to ween him off it.

The pharmacy sent up a 1 oz tube of Desitin.  As Ethan's
grandfather once said, "That's like throwing a brick
in the Grand Canyon."
Desitin (the same stuff you get in the store).  The pharmacy sent us up a couple of 1 oz tubes of the stuff before starting to send us generic stuff that just isn't as good.

Sarah's taking over after work today for her Friday evening to Sunday morning shift.  She's taking her lunch hour to run out and pick up some more Cliff bars and a couple of big tubs of maximum strength Desitin.

Meanwhile, Ethan's getting red blood cells and enzyme today.  To reduce the risk of a histamine response, they give benadryl as a pre-med for both of those infusions. What the hospital staff don't stop to think about is the fact that if we give him two doses of benadryl during the day, he's going to sleep all day long and then will probably be awake all night. So we negotiated with the staff to move his enzyme infusion and start it closer to his normal bed time.  That way the benadryl will help him sleep more comfortably and hopefully he and mom will both get a good night's sleep.

Well that's it for now.  Here's a smattering of pictures from the last week or so.
Bath time

Sarah and Ethan had fun with a
playmat - bed tent.

All of Ethan's IV lines are different lengths, which make's
line management something more of a pain.  Fortunately,
Ethan is a little more aware of his lines and of the IV
pole than he was during his first transplant.

The current IV pole.  It lives, it grows.

Ethan propped himself up on the blankets to watch
something on the iPad.  Notice the extra plastic
"puke shield" on the iPad!

Wednesday, April 13, 2011

T+0: Transplant Day

This is why people don't do live, running, blog updates about bone marrow transplant day.
Ethan's new cells.
Just this little bit of blood
is all it takes.

It's boring.

12:15 Ethan falls asleep for his afternoon nap

1:00  Nurses come into the room with a bag of blood and some pre-meds

1:10  Ethan receives benadryl IV and is woken up a little bit to take some oral tylenol

1:11 Ethan goes back to sleep

1:25 Ethan begins receiving blood cells intravenously

1:30  Ethan continues to sleep

1:32  Ethan rolls over.  The assembled masses hold their breath.

1:33  Ethan snores.

Tuckered out little bear getting his cells.
1:40  Infusion of new cells is complete.  Nurses unhook that IV line.  Transplant of new cells complete.  Ethan continues to sleep.

Ethan received stored umbilical cord blood.  Cord blood has a high percentage of hematopoietic stem cells. I'm not going to try to explain the science of it all except to say that hematopietic stem cells can do make many different kinds of cells and they can replicate themselves, too.  The hope is that they will settle in the space cleared out when the chemotherapy and radiation killed off Ethan's native bone marrow, and that they will go forth and multiply.

Because of medical confidentiality, we likely will never know anything about the family who donated their child's umbilical cord blood, except that their child was born on 4/16/08.  After one year, we can send a thank you note to the national bone marrow registry. But due to complications stemming from medical privacy issues, they may not be able to forward it to the parents. So the parents may never know that their decision helped give a child a second (or third) chance at life. We are incredibly thankful to the families who donated both Ethan's first cord and this one.  They are the most generous of souls going out of their way to donate this precious gift with the small hope that it might one day help a child and family in need.

Whoever you are and where ever you may be, thank you.

Caleb didn't find the process very
interesting.  But he was happy
to get out of school and play
with Ethan's toys for a while.
Transplant day is perhaps the beginning of both hope for the future and of the real battle.For me, the more concrete  milestones will be watching his white blood cells come back up signifying that he can start healing again; the start and peak of enfraftment; getting released from the hospital and reaching day T+100 which generally signifies the end of the danger zone.  But for now, I will happily take this hope together with the faith that Ethan is strong enough and that the doctor's are smart enough for all the rest.

Until recently, Ethan's energy has been very good.  Since his radiation treatment yesterday, though, he's been noticeably more tired.  I'm including some pictures and video, below, from physical therapy sessions earlier in the week.  As you can see, he's having a lot of fun.  By contrast, when the speech therapist arrived today, he was just wiped out, and the session quickly turned into a full melt down.

Well, I should wrap this up now and go wake him up--or there's going to be hell to pay when I try to get him to go to sleep tonight.



In recovery yesterday after his radiation treatment. 

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Friday, April 8, 2011

T-5: Routine

The picture at the left pretty much sums it up. Ethan is handling chemotherapy really well. He's got enough energy to want to leave the room to go play and he can't understand why he's not allowed to leave the room.

Ethan's energy continues to surprise me. The fevers he experienced with Campath have passed now that he's moved on to the next chemo drug, Clofarabine.

Surprisingly, the nausea and vomiting we expected are largely absent, though it certainly doesn't hurt that he's on an IV anti-nausea med 24 hours a day and gets a second anti-nausea med twice a day by mouth. The upshot is that he's still eating and his appetite is pretty good. This is a good thing.

He did have some high blood pressures a couple of days ago. But they treated him with a fast acting med and it came down okay. I don't think it's recurred.

We've settled into a decent routine here. Ethan has blood drawn at 4a for the days labs. (Fortunately, the set up they've got here allows them to draw blood without unhooking his IV, so they don't have to fiddle with his lines and wake him up.) I'm usually up by 7 or so, then I wake Ethan up by 8 or 830 depending on how he slept overnight. The nursing assistants come in and we get his morning vitals and the nurse comes in and gives us his four morning oral meds.

Between 8 and 9 we'll have breakfast and some playtime, usually with matchbox cars, maybe with Mr. Potato Head or some blocks. His red blood cells are down, so while he does have enough energy to play, he doesn't have much of a reserve. That means that we try to break up playtime into two to three or four 15-20 minute chunks each day. They hook up his current chemo med at 9a and that runs for about two hours. We usually sit together on the bed and watch a movie on the iPad. After chemo, we may color or play for a bit before napping from 12-2 or 1-3 or so. Usually the doctors will come by around 12:30 or we talk for a bit about Ethan's condition.

After his sponge bath
I usually try to catch a quick shower while Ethan is sleeping. Sometimes that works and I get to feel nice and clean. Other times it doesn't and I just end up being funky. For better or worse, it looks like I'll have to stop shaving while Ethan is in. The only sink in the room is right next to his bed. I don't think I can get in there and shave without waking him up. There are a million things in here that will wake him up, from beeping machines to room cleaners, to loud talkers. I'm not going to be one million and one.

(While we're on the subject, if you wake up a sleeping kid, why do you talk to him and tell him to go back to sleep? Why would you want the kid to try to focus on your voice enough to understand you? Quiet singing I can understand, it's melodic. But if my kid wakes up, don't talk to him. What do you want him to do, answer you? Really, does that work for anyone? Does it occur to you that you're making it worse? If you need to do something, then how about, quiet indeterminate noises and/or a comforting hand on the back. (Sorry. Had to get that off my chest.))

Playing hide and seek with the playmat.
After nap time, we have lunch and then Ethan has a sponge bath. Then we play some more. Yesterday, we negotiated with the nurses to unhook his IV lines for a while. I asked one of the Care Partner volunteers to come in for a short time so that Ethan would have two people to play with him. Unfortunately, while Ethan will play with his nurses, he had absolutely no interest in playing with a complete stranger.

All of this will change, of course, but I'll take this for as long as I can get it.

Yesterday, Ethan got really bummed out that he couldn't leave the room. So Sarah and Caleb came over yesterday evening and we had some family playtime. It was a huge boost both for Ethan and for me.

In the evening we have dinner. Then Ethan has his 8p oral meds and vitals and we start to settle down. With any luck he's asleep by 9 at which point I can go lay down and listen to some music or read before going to sleep at 10 or 11.

And if we're really lucky, then Ethan won't wake up for his 12a or 4a vitals or for any of the overnight diaper changes.

If you've got ideas and suggestions about games that a 2 1/2 year old and I can play in a little, teeny hospital room, while hooked up to an IV pole, then please let me know. I'm all ears. Please don't send us anything more than ideas. If folks send a bunch of toys, by the time they got here, he won't have the energy he has now.

Going on in the background...
If you've ever worked with us on or talked to us about Ethan's care, or if you've followed his blog for any length of time, you know that effective communication with Ethan's doctors is very important to us. This is always one of the first things I bring up when meeting new providers. And it was something I stressed with the staff here when we went through the workup process.

So, perhaps you can imagine my surprise when the attending physician on the ward came in once a day for the first three days and said, "He's doing fine." and walked out.

On Monday, I had the first of a number of conversations with her about communication and about the fact that Sarah and I want more information. She seemed honestly surprised. She said, he's doing well, everything is in line with the protocol, what more do you want me to tell you? Well gee, my kid is hooked up to 8 IV meds and gets another 4 orally. Do you think there's something specific that you might be able to tell me that would inform my understanding of his condition today and his progress overall.

To say that the attending wasn't empathetic, doesn't begin to cut it. Not only was she largely dismissive or having any information that we may want or need she indirectly criticized me for having to ask the questions in the first place, implying that I hadn't done my homework during the workup phase about his protocol and what to expect.

I outlined some of the things that I'd like to check in on daily and she said I should come to "Family Centered Rounds" in the morning.

(Here's the thing about Family Centered Rounds, it sounds great. It sounds like the family is being included in all aspects of the medical discussion. But really rounds are rounds, they are for the doctors, fellows, residents, med students. It's a medical discussion among medical professionals. Occasionally, the family is able to add some information to the discussion so that the doctors have the most up to date information about the kid. Family Centered Rounds are worthwhile, but they don't replace a doctor-parent conversation about the child. It's a completely different kind of conversation. Both are worthwhile, but neither can be omitted.)

She seemed really at a loss to understand what more she could tell me on a day to day basis about Ethan's condition aside from something like "He's in the parameters defined by the protocol."

What I want is to know what they're tracking and what the threshold for intervention is? When additional meds are introduced, as with his new blood pressure medication, I want to know how effective are they?

I was talking with one of the other parents on the ward. We know her from RMH and she's got a lot of experience with the BMT staff here. She agreed that getting information from the doctors is extremely difficult. She said, it's almost as if they think this is all too complicated for us to understand in any detail, as if all of the parents here haven't been fighting their child's condition for some period of time. . Quite frankly, that's the impression that I've gotten as well.

I even asked our BMT social worker to come by so that we could discuss this. I wanted to make sure that my expectations weren't out in left field and wanted to get any suggestions that she might have about how I could approach this.

In my conversation with her, I expressed my concern that if we didn't establish better communication now that it would be much more difficult to do so when Ethan's condition is more critical. I also explained that it is also a trust issue. These folks might be the best in the world, but that doesn't mean I'm just going to "turn over the keys" and step back. Ethan is my kid, and I don't trust anyone enough to do that. And finally, if Sarah and I should ever find ourselves in a situation where we need to consider ending life support, ever piece of information we know about Ethan will factor into that decision, that includes baseline information that we gather now and a daily understanding of how we got from here to there.

Fortunately, that attending ended her two week rotation on the Ward on Wednesday. Yesterday, Dr. Orchard started his rotation. Dr. Orchard is the head of the metabolic disorder transplant program. While there are a number of other disorders transplanted on the ward, Dr. Orchard is the head of the program for the class of diseases that Ethan has. Dr. Orchard is also very empathetic, very giving of his time and almost always willing to take the time to talk things through with families. Dr. Orchard's very well known among Hurler's families and many families will contact him with questions which he will graciously answer even if that kid is being treated elsewhere.

We had a good discussion about Ethan's course of treatment and his progress so far. I outlined the areas that Sarah and I wanted to make sure we went over every day and he seemed to get it. It was a big change from the first doctor and a big relief.

Sarah's taking over this evening and will be on duty through Sunday morning. We've worked it out so that I take Sunday morning through Tuesday evening. Sarah takes Tuesday evening/night so I can get some uninterrupted sleep at the house and then I'm back again Wednesday morning through Friday evening. It works out really well for me because it means I'm back at the house every third night for a good night's sleep. And it's frequent enough that Sarah can spend some time with Ethan and keep up with his progress first hand.

Gotta run, time for lunch. As always, thanks for being here for us. It means a lot.

Tuesday, April 5, 2011

T-8: Last Day of Campath

Good morning all,
A peek at Ethan.  You can see a bit of the rash he had.
(Great shot, Sarah.)
Ethan woke up during his 4a vitals/blood draw/diaper change, so I got up to help him go back to sleep.  Now, he's asleep, and I'm awake.  Oh well...

Let's see, Sarah last posted Saturday evening (T-11). That leaves me Sunday and Monday to catch you up on.

The quick summary is that Ethan is doing pretty well.  His fevers come and go.  Sometimes it's 102-103, sometimes he's normal.  His energy comes and goes with his fever.  But he's still eating very well.  His blood pressure is up from 90s over 50s to 120s/60s.  So the doctors have added an additional blood pressure medication. Overall, he's tolerating the chemotherapy well.  

Saturday and Sunday were a lot of this.
Sunday was much the same as Saturday, Ethan's fever came and went.  When is was high 102 or so, he felt pretty crappy.  When it was lower, he was happier and you could get a good smile from him.  But mostly, he was content to snuggle and watch a show on his iPad.

Ethan had been pretty rashy on Saturday and early Sunday.  We had started using a topical body oil/steroid combination that his dermatologist prescribed for his eczema.  Whether because of that or just the natural ebb and flow of these things, we seem to have gotten ahead of it by Sunday afternoon and into Monday.  Yesterday, the transplant docs put the kibosh on that, so we'll have to see if the rash returns today. 

He had a good three hour nap on Sunday, slept really well Sunday night and woke up happy and with lots of energy on Monday.  We had a good time on Monday.  We were able to unhook his IV for almost two hours.  Just as Ethan realized that he's on isolation and not allowed to leave the room, the physical therapist showed up to play.

While Ethan is inpatient, he'll have regular physical, occupational and speech therapy.  Mostly this is to help get him out of bed and keep his body conditioned during transplant.  But hurler's kids need PT, OT and speech therapies anyway, and the really nice thing about having them inpatient is they don't count against our insurance company's dinky 20 outpatient visit/year limit (each specialty).  Though, I suspect that we'll use up those 20 visits when the conditioning and rehabilitation continues during his outpatient phase here. 

The physical therapist brought a playmat and an indoor toddler's bowling game.  We had a blast bowling.  We were having so much fun that we got "shooshed".  One of the nurses came by and said that one the kids next door was feeling particularly bad and that our cheering has bothering him.  

After PT left, OT showed up.  Where physical therapy focuses on big energy, gross motor skills, occupational therapy focuses on fine motor skills. So the bowling was replaced with coloring and with a magnet toy where you could build things out of magnets and connecting rods. 

It sounds like PT, OT and Speech are going to show up about every other day for 20-30 minutes or so.  They won't bother him when he's really feeling crappy, but they'll visit even more frequently post transplant when he needs to build his strength and energy back up.

Ethan was in such a good mood yesterday, that I couldn't convince him to take a nap.  That was something of a bummer for me,as I had planned to take a shower during his nap.  But the upside was that he crashed out really quickly at bedtime at 8, and has had a pretty restful night.

Transplant Timeline
Let me try to give you an idea of how Ethan's condition will progress, because it's a little surprising and it may not be what you think.

On transplant day for Ethan's first transplant, I remember thinking that "all of this wasn't so bad."  Sure he'd had fevers and low energy during the chemotherapy and radiation, but aside from feeling down, he was in pretty good shape.  

The chemo drugs are so toxic that the
nurses where full protective gear, when
administering them.  And they bring
along another person to double check
them and make sure that they're giving
the dugs to the right person.
The thing is, the period during the chemo and prep regime is fairly easy.  It's the period after transplant starting around T+4 or T+5 that Ethan will feel completely awful and that he'll medically in the most danger. It's during this period when the chemotherapy and the radiation starts to break down the soft tissues and one starts to see mucositis in his GI tract and sores in his mouth. In addition, the medicines delivered during chemotherapy are toxic.  When Ethan goes to the bathroom, his pee and poop contain a certain amount of those toxins.  Eventually, he's going to get a horrible diaper rash.  His skin under the diaper will likely crack, creating an additional infection risk.  It's pretty awful and he's going to be in a fair amount of pain, just from that. 

Without an immune system, the soft tissue breakdown, skin cracks from diaper rash and airborne viruses, Ethan will be particularly susceptible to viral, fungal or biotic infections during this period.

After the new cells start to engraft at about T+14, Ethan will start to produce white cells again and he can start to heal himself.  

Once he starts to engraft, however, he's at risk for graft versus host disease. Graft versus host complications can result in significant, life threatening tissue damage including both the skin and the organs.


Tonight, Ethan will have his last dose of Campath.  Tomorrow, we'll start with Cloflorabine.  And we'll be on that through Sunday. 

Saturday, April 2, 2011

T-11 Happy morning, quiet afternon, rashy evening

Sarah here at 9:36 pm at the hospital. Ethan just finished his second dose of Campath and has dropprd off to sleep. As predicted, the rash started flaring up more on his arms and legs and is starting to show some on his trunk and face. The rash starts out looking like he's been slapped around, then progresses to being a bit raised and redder and you can actually feel that the rashy skin is hotter than his other skin.

I arrived with Caleb this morning around 10am to find Ethan having a good time playing on the parent bed with Todd. We all ended up climbing on the bed together and Ethan jumped from the narrow window seat on top of all of us. Todd attempted to lie down and have a bit of rest while we waited for the doctors to arrive on rounds, but Caleb loves to tickle and be tickled and Ethan joins right in. Todd and I talked with the nurses and updated each other, and we filled the white board with lists of Ethan's meds, questions for the doctors, what and when he last ate, etc. Then Todd and Caleb took off to grab some lunch upstairs at the hospital restaurant. Caleb discovered last night that they have Cheetos there, plus a very nice view.

Today was also our ERT day, so it timed out well that Ethan ate some jar food and got sleepy just about the time they dosed him with Benedryl before starting his enzyme infusion. He slept from 1-4pm, and I had to work at it to wake him up. He stayed pretty sleepy and snuggly all afternoon, though he ate a good late lunch (or early dinner). We mostly watched videos and I read my book on my iPhone. We had planned to give Ethan a spongebath and grease him up, as one of his meds is some stuff called Derma-Smoothe that helps with the mild dermatitis he has, but the hospitsl pharmacy was out of the stuff. todd and Caleb came to the rescue, arriving with fresh spring haircuts (very short and cute) and our bottle of Derma-Smoothe from the House. Todd helped me bathe Ethan and Caleb helped me use the room phone to order in some dinner, then they headed off to grab some dinner and maybe some ice cream.

Ethan refused to eat anything but the french fries and apple juice from dinner, but he ate about all there were. He left me the cheeseburger and carrots and fruit. Then we had fun putting a blnket over us while we watched movies, like a tent. A little after that, today's dose of Campath started hitting him and he started getting fussy and clingy, we noticed the rash was spreading, and he seemed a little shivery. Our night nurse asked if I wanted the doc to take a look, and when she had, we decided to give him an extra dose of Benedryl to help with any itchiness the rash might cause and knock him out a bit. Seems to be working so far, though he's turning over a bit more than he usually does as if he's not in a true deep sleep.

Ten o'clock now, and time for me to sign off and hopefully get some rest. The next checkin is due at about 10:30 though, so I may just read until that's done. Goodnight, all, and may all our angels sweetly sleep.

T-12 First Day of Campath

Ethan received his first dose of chemothapy about midnight last night. This drug is called campath. Campath tends to cause fever and nausea, and it did. Ethan had some discomfort over night, maybe nausea or cramping a little after 3, he vomited a little bit and developed a fever of 102. Ethan will receive five days of campath. They say that the reaction gets stronger as the doses progress.

Ethan got an okay night's sleep. He's gotten about 7 hours so far. Hopefully, he'll be able to squeeze in an extra hour before the 8am vitals check wakes him up.

For me, yesterday felt like the first day of school again: trying to get back into the hospital routine, learning the names and side effects of the drugs he'll be on, understanding what the nurses will need and when, and most importantly talking with the nurses and making sure they understand my preferred schedule for Ethan.

Usually when we're inpatient, I talk to the evening nurse when they come on and try to talk through what time I'd like to administer Ethan's last oral meds, checking what times they're going to need to do vitals. It's a lot easier if we talk through this stuff ahead of time.

You see, I hate night time in the hospital. As a parent, my main concern over night is to make sure that Ethan gets as much sleep as possible. And Ethan can take a long time (sometimes 2 or more hours of cranky fussiness) to get back to sleep Meanwhile the nurses have a number of thing that they need to do that can or will interrupt his sleep. Most of these just need to get done--and I can only hope they get done as quickly and as quietly as possible. A lot of times though poking, prodding and monitoring can be consolidated to minimize the number of interuptions.

Such was the case last night when I started to giving Ethan his evening meds and getting him ready for bed. The evening nurse mentiond that she had an additional oral med that she need to bring in about an hour--a premedication for Ethan's campath. It just bugs me a whole bunch that they didn't schedule it better. I did get somewhat jerkish and told her so--though I later apologized and explained that I should have made a point to check with her and compare notes, needs and expectations about the evening. I knew better, knew I should have checked in and talked it through. But it was the first day of school again and I just wasn't up to speed yet.

Night nurses have one of the hardest jobs in the hospital. They're tasked with doing important things, administering all the same protocols they run during the day, but they've got to be uber-quiet while doing it all by flaslight, and they are dealing with sleeping patients and grumpy family members (me) and when famiies want to negotiate or throw up firm barriers they don't have all the daytime doctors around to clear things with. They are, more than the daytime staff, on a highwire act without a net. I get it.

At the same time, many nght time nurses tend to be on the younger side, not many years out of nursing school, and they're on nighht shifts until they build up enoug senority to switch to days. Newer nurses tend to be very focused on trying to follow the protocols and requirements as strictly a possible and they haven't learned when they can maybe skip getting a blood pressure so they don't wake the kid up, or how best to consolidate meds schedules.

It's like Ethan's 4p vitals check yesterday afternoon. Ethan hates getting his blood oxygen level taken. He's scared of the toe monitor with the red light on it, I don't know if he thinks because it's red it must be hot, or what. But they'd taken his O2 level at noon. And he'd had absolutely no meds or proceedures between noon and 4. They'd done absolutely nothing to him, there was no reason to think his O2 level might have changed. When I pointed this out to the nurse and suggest that we might skip it, her answer was a succinct "proceedure." Okay, we'll roll with that, though later on in his treatment we may veto certain occasional vitals checks if we feel he's stable and the check would be too disruptive.

For myself, I was way too tightly wound last night.

One of the pumps that Ethan's hooked up to sounds exactly like the room door opening and it cycles every minute or so. Everytime it wold cycle, some part of me responded like the nurses were coming in. Each time it cycled, I literally tensed up so that I could be ready to soothe Ethan if he woke up or fussed. Clearly, I need to settle down and get some perspective and just roll with whatever some more.

I finally settled down by listening to soe music and going to my happy place (really). (But I still don't like that pump.)

So, after getting Ethan to sleep at 10, I finally dozed at 1 and fell asleep at 2 before being up with Ethan from 3-5. Fortunately, I got a couple of good hours fromm 5-7 before one of Ethan's pumps started beeping.

Sarah and Caleb are coming over in a bit. Sarah's going to relieve me and take today and tonight. So, I should be able to catch a nap and a good night's sleep.

Meanwhile, Ethan has been officially hooked up to "the pole.". The IV poll

holds the meds and pumps that will deliver most of his meds, and when he's not on meds he will be on normal saline to keep him hydrated and keep his kidneys flushed. He will be hooked up to this poll almost 24/7 from now unt the time we leave. The pole will grow brances and become a tree as additinal meds and pumps are added over the course of treatment. One of the first things I do when I come across a patient is look at their pole and see how many pumps and meds they're running at the same time.

In addition to hauling the pole around, the other fun thing is managing Ethan's lines so they don't get tangled or caught ln anythng and pull the central line that's in his chest. At the moment, Ethan's got 5-7 lines of various lengths and diameters going into his two central line ports. Anytime he moves, it's a challenge.

Alright, time to run. Will post more when we can.