Yesterday was our weekly clinic visit. We went in knowing we were going to be having discussions with the doctors about restarting the Valproic Acid (VPA) that we stopped in January because of the surgeries. We also wanted to discuss next steps. We were able to restart the VPA & Caleb had his first dose last night at 8pm. We've also been told we don't need to be as hyper-vigilant as we had been with his dosing schedule for it. So, he gets it when we get up in the morning, mid-day & at bedtime now -- a welcome relief. We also discussed the options available with two other medications (names not being disclosed at this time). One carries greater risk than the other, but greater reward for success. We're still weighing options and praying about which route to take.
We're still having a hard time getting Caleb's symptoms/pain under control. Because the tumor is pressing on his optic nerve, he's having an increasingly difficult time with pain in his eyes, blurriness and double/triple vision. He's still having severe headaches, nausea/vomiting, stomach pain, muscle weakness, difficulty swallowing, drooling, and some other things going on. His pain level on a scale from 0-5 has been consistently 4 or 5 for the past 3 months. He doesn't always tell us when he's hurting because he says, "the pain medicine is nasty & doesn't work anyway, so why take it." We finally explained that if he doesn't tell us when he's hurting & how frequently/severely, that we can't tell the doctors & they can't increase it or give something stronger. So, they've added oral morphine to his list of meds. It's faster acting & can be given more frequently than the Lortab we've been using since the morphine doesn't have the "tylenol side effects" involved.
Dr. Bowers also discussed the option of having Caleb placed on hospice care. Now, before you freak out, let me explain a little more. This does not mean that we are giving up or that he only has a few months left. Right now, the doctors honestly don't know how long he has. They are not ready to say he only has "xx" amount of months left. They want to continue to fight since Caleb's tumor "appears stable" at the moment. That's where Pediatric Hospice (PH) is different than adult hospice. We can take advantage of the nurse coming to the house to help with pain/symptom management with constant contact with the doctors without having to stop treatment. It's more like a home health nurse situation.
After discussing all this, we headed for the house. We got about 10 minutes from the house & Caleb starts vomiting all over himself & the van with no warning. I got him cleaned up & continued to the house. Thank goodness I always carry a full change of clothes for him when we go somewhere.
We gave him some zofran & continued on with the evening. He threw up again after eating dinner then went to bed. Woke up at 4 a.m. with a severe headache, which prompted a dose of Lortab. (We weren't able to get the morphine filled Thursday evening because none of the 6 pharmacies near us had it on hand.) Within 15 minutes after Richard left for work, Caleb started vomiting again. He was not able to keep any medicine, food or drink down. This continued through the morning. We called clinic & were advised to bring him in. We got to clinic & they accessed his port but were unable to get blood return. So, we had to have some medicine put in to dissolve any potential block in the port. He then went to have a stomach x-ray to make sure his bowels look okay. Showed a lot of stool, but no obstruction.
Every time he attempted to eat or drink, he'd throw it back up within an hour of taking it. We were finally admitted & transferred to a room around 5 p.m. this evening. I'd forgotten how nice & spacious the oncology rooms are compared to neurosurgery. This room is so big it echoes! It also has a really cool "nite-lite" in it that shines "stars" on the ceiling & walls. I wish I had my camera so I could take a picture of it. Pics on my cell don't do it justice at all.
Caleb attempted unsuccessfully to eat dinner. We've now been advised to let his stomach rest & not give anything by mouth for a couple hours. Then we'll start with ice chips & see how it goes from there with a slow progression to solids. In the meantime, he's still on IV fluids. All meds that can be given via IV are being done so. If it can't go via IV, it's on hold.
It's just after midnight now & he hasn't thrown up since the last time he tried to eat or drink (around 7:30pm). He's just had another dose of morphine to help with the pain. Hopefully he'll be able to keep food down when it's time to eat breakfast.
We're currently under isolation precautions until he is able to produce a stool sample for some kind of testing. All this really means is that Caleb can't leave the room until they get his test results back. We're praying he's able to produce one since we're now on stronger pain medication. The stool softener we'd been giving him is an oral medication & he hasn't been able to keep it down either.
We're going to try to get some sleep now & will hopefully have an update around mid-morning Saturday.
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Thank you for all your prayers.