NO wine for the mama!

We are in back in the hospital. We were admitted last night. After fighting the dreadful headache most of the day, medication stopped working and, the headache won.

We gave the maximum doses of pain medication recommended by the freaky pain doctors and it didn’t seem to touch her pain so we spent most the night in the ER being infused with morphine and waiting for a room on the ward.

We are all a bit groggy today.

She also spiked a fever of 38.8 so at about 10:30 Jay and I made the call to and were instructed she would be having a sleep over.

We have had the full work over- They have taken cultures, started antibiotics, and she has had a few pints of blood and some IV fluids.

Today her pain today is much better and her fever has come down- but still no wine for the mom.

I tried to convince the doctors to let us go home but it was a no go. We did however negotiate a ‘pass’. Basically it is like being moved into a half way house. We are allowed out on a day trip- well a dinner trip but then we need to come back and sleep here. Fair enough. Day pass it is. We will take what we can get.

She will get an antibiotic infusion every 6 hours until her cultures come back- likely 48 hours form now. A fever could indicate bacterial infection which is risky in a kid with no immune system so doctors always take precautions but trust me her cultures will be negative.

She has a stuffy nose, she has something viral- don’t they know I am a doctor too now?

 The headaches and the numbness in her legs, and the ‘I can’t see’ ya that is worry some but a little fever, and stuffy nose, well that is just normal kid stuff.

We got shitty news today. We are re-starting the angry steroid med. Dexemethazone infusions began this afternoon. The hope is that the Dex will again bring any swelling down if there is any around the tumors from radiation that may be causing pressure. We hate this drug and this plan but we don’t have any other options.

Still no word on the MRI, but my guess is that they will try this medication first. They have pushed the MRI for so long now and we almost done radiation, it would be a shame not to wait (or at least I am imagining them saying this)

Her blood work indicated that her counts were so extremely low, so now we need to come up with another plan to get them up so we can get to Maui.

I will learn how to give fluids through the IV. They will give us a bag of narcotics for pain to take with us. We will start GCSF shots to try to stimulate her bone marrow and give her a few white blood cells. And we are going to get blood as many times as we can before we go.  We will likely pop in on Sunday morning for one last top up before we fly out.

I am a bit freaked (o.k. alot freaked out) but being the momcologist means you’ve got to wear a lot of hats. Nurse is just one of them. I can do this.

And our doctors are being encouraging. They too think I can do this. They think we should go on this trip. They aren’t thrilled that we have no medical coverage but reminded us why we are doing all of this treatment…..

To live.

“Go live” they said. 

What they didn’t add is “in case you don’t get the chance.”

But it is OK. They didn’t have to say it. We know it. It is why we take these trips. No regrets.

In the meantime, we have the luxury of to stay at this ‘hotel’ until Thursday. I think I will call for some room service. (and still no wine!)