High Dose Methotrexate 3rd Round

We came to hospital 7:30 this morning -- still 1 hour late for the appointment.  Lucas is due for his 9th lumbar puncture/spinal tab with Chemo.  Since he had low blood sugar problem and he needed to be fasting for the general anesthesia, his surgery is scheduled at 8:30.  He has been eating great and rather active at home -- no blood transfusion has been needed since last round.  By 10am I met him at the post-op area and he was very irritable and asking for food -- but the policy said that no food until they leave the post-op area.  I have the glucose meter with me all the time now so I tested him when the nurse left us alone.  What do I know?  37!  I started feeding him right away and with a small bag of chips together with a Popsicle, he tested 73 after half an hour.  I'm glad that I acted on my own terms though.  Even though Lucas was not sleepy but I just felt that I had to know it for the peace of my mind.  I think I will be more prepared with better snacks and always check him after LP. 

We got admitted after LP and his bicarbonate IV fluids (with D5) started just before 1am.  By 6pm his urine pH cleared and after a dose of Zofran (given through IV every 12 hours for HDMTX), his HDMTX started 6:35pm.  When his first 30 minute loading dose ended switched to 23 1/2 dose, we had some disagreement with the nurse about the rate the bicarbonate should be running.  It turns out that we remembered right and the rate they were set was 2/3 of what it should have been.  We just feel that there are many things that parents need to be monitoring all the time. 

They just decreased the concentration of his bicarbonate fluids from 40 to 35.  The reason they gave us is (1) his urine pH has been consistently 9 and (2) he cleared the previous two times fine.  I'm not sold by the ideas because even letting the urine sitting in diaper/cotton ball for a small amount of time would raise the pH from 8 to 9 (at least that's what they told me).  And he already cleared the second time around slower than the first time.  But it's hard to argue with the night shift residents ("the doctors who make decisions").   Nurses don't make decisions, their job is the execute what has been ordered.  And if parents/patients keep question their actions, they would have to ask the doctor again.  So some of the nurses have made up their minds that they won't pass any of your concern or questions.  We really appreciate the ones who always take our concerns seriously and try their best to get the answers that we need.  Anyway, for now, we just have to try our best to get the urine sample soon so the pH reflect more of the truth. 

If things go smoothly, we can go home Thursday morning.  Lucas has been rather hyper today -- as if he is on steroid (though he didn't have any typical steroid side effect when he was on it in induction).  He would suddenly shout out loud -- demanding something that was thrown away a while ago.  It was as if his mind is scattered and he would suddenly get very tense about a remote memory.  I hope it's just because he needs more sleep and he had anesthesia.