Hour by Hour

I checked the clock about every half hour all night.  They never turned the lights off in the room.  And night PICU nurses laugh and talk -- a lot.  That place never shuts down.  I woke up (for good) at 6 am this morning and got up to go shower.  More sodium checks were being done and we discussed the downward trend overnight.  Sodium levels had gone from 129 down to 126.  But for the last 5 hours they have held steady at 126.

Brendan woke up at 10 a.m. and was encouraged to brush his teeth and get out of bed. He did brush his teeth reluctantly, but has deferred the getting out of bed until closer to noon.  He is still not feeling great, but has no significant pain.

11:10 a.m.
It is now past 11 a.m. and the doctors just made their rounds.  There was a lot of discussion about how much sodium to pump into Brendan without compromising his kidneys and veins.  (I learned that is why they don't just give him the 3% sodium solution -- your veins can only do that once or twice.  They save that for true emergencies.) And sodium of 120 is the "magic" number when 3% sodium solution gets used.

There was also talk about whether Brendan was better served here in PICU (since they aren't doing anything here that couldn't be done on the floor) or in ICS (immunocompromised unit, now known as cancer and transplant unit.)  One of the big concerns down here in PICU is the number of babies that have respiratory illnesses.  Brendan might be safer in his own room away from so many diseases.  Of course, they still need to monitor his sodium every 2 hours.  We are still waiting to hear from oncology about whether Brendan will get his next dose of chemo today.

12:30 p.m.
Word just came from the oncologists that Brendan's third dose of chemo has been cancelled.  Also, that cisplatin will be discontinued from Brendan's chemo regimen.  We will discuss other chemo options next time we come for chemo (in another 2 weeks or so when Brendan's blood counts are back up.)  Brendan will have to stay here at the hospital until his sodium is stable and he has finished all of the post-chemo fluids he needs.  Then we can go home.

So far Brendan's sodium levels have been holding steady at 126 for the last 6 hours.  We should move back up to the ICS unit soon.  They feel Brendan will be more protected there and that he is stable enough to move.  Now they just have to find open beds and an available nurse in ICS.  (I'm sure they are anxious for an empty room down here. They are starting to double up kids in the rooms.)

1:00 p.m.
Sodium down to 125.  They increased the sodium dose he is getting through his feeding tube, and have decreased the amount of fluids they are giving him.  We were hoping his counts would be starting to climb, or at least hold steady -- so to see them drop is a little discouraging.

Brendan is being plagued by hiccups.  They are a side effect of the cisplatin and he has had them off and on for the past few hours.  But it is merely an annoyance, and nothing serious (which is nice).

4:00 p.m.
Sodium still at 125.  Still waiting to move rooms.  Before we left PICU, Brendan took a walk down the hall and back to stretch his legs.


5:45 p.m.
Sodium still at 125.  We moved rooms and are settled into our room in ICS.

Out of PICU. . .

Feels like coming "home" to ICS

More sodium blood draws.  More anti-nausea meds.  Mostly just waiting for sodium levels to climb back to normal.  Brendan can be discharged only when his sodium numbers are between 133-139 but they don't want levels to jump quickly so it will take a while to go slow and steady.
More hiccups.

7:15 p.m.
Brendan's oncologist fellow came to visit Brendan and discuss what was going on.  "The kidneys," she said, "are the smartest organ in the body, and they've had enough."  She said we need to listen to them :)  So, this round of chemo has ended.  The 2/3rd dose of chemo this round should be enough to do the job. It is expected that blood counts should drop about like last time.  Cisplatin will be discontinued as part of Brendan's chemo regimen.  Another chemo drug (possibly another platin family drug) will be used in it's place.  Before Brendan returns in 2-3 weeks, treatments will be studied to see which regimens have been shown effective against this tumor.  (Unfortunately, there are not many studies at all.)

Results for 6 p.m. sodium tests:  124  Hmmmm.... still going  the wrong way.  Despite continuing low fluids and increased sodium into his feeding tube every 6 hours.

Hiccups come and go.  Pretty hard at times.

9:00 p.m.
His feeds are starting.  Very low and slow.  Only 40 ml per hour for 10-12 hours.  Brendan is feeling a little nauseous, so we will see how the food goes.  They are also being cautious so the food doesn't upset the sodium balances.  They don't want to give him too many fluids and dilute the sodium.  We keep joking with Brendan that some french fries and potato chips would help.  But he just smirks at us.  He did try a sip of slushy today, but still not a fan.

9:30 p.m.
They've increased the sodium they are putting through his tube again.  We keep waiting for the turnaround--when the sodium stops falling and starts going back up.  Despite the low sodium counts, Brendan continues to feel better and better all the time.  I'm thinking tomorrow will be a long day just waiting for sodium to slowly rise.

Tonight we are both going to enjoy a comfortable bed and quiet nurses.  Thanks for all the thoughts and prayers today.  They always make such a difference!