Because It's Palliative care

Hajime's fever is finally coming down.
He still had a fever last night, but we gave him something to lower his fever, so this morning he is back to normal. But we must not let our guard down, because these past few days, he has been coming down with a fever at night.

Last time, I wrote about our appointment with the doctor and he told us the following.

He said that every time Hajime has some infection, they have been giving him strong antibiotics to treat it, but if he were in the hospital, that is something they absolutely would not be doing.  He said they continue to do that only because they are trying to ease the pain.

He explained that, as Hajime's palliative care team, they are treating him to relieve the pain.

We, as parents, worry a great deal about that.  We understand that, but we also feel anxious about it.
He has taken antibiotics three times since the beginning of this year.
Of course, we must be careful with the antibiotics because we don't want him to develop a resistance to them.

They are planning to do tests to figure out exactly what (bacteria) is causing this fever.

We have already started giving Hajime "breathing treatments" using an antibiotic called tobimiacin around his lung area.
The same can be said about this medication.  He will develop a resistance.

My husband and I are taking this very seriously.
Is giving him antibiotics the best?  We don't know anymore.
We can only pray.

We pray that he doesn't get a worse infection!


(translated by MS)

His Fever Won't Go Down

He has had a fever since Sunday night.
And he just finished his antibiotics on Friday.
I am very worried.

He had a Botox appointment today so we went to Kaiser about 11:00 am.
The parking lot at Kaiser was full.  We couldn't find any parking except valet parking.  I found out for the first time that, I could use valet parking even with a wheelchair van. (I should've known...)

Since last night, Hajime was shaking with fear.
I thought that the Botox treatment must be quite painful.
He was crying this morning.  I felt so sorry for him that I started to tear up too.
I think that today's procedure at Kaiser must have really been painful because it actually caused some bleeding. Hajime's eyes were red from crying.
But if we don't have this done every three months, he keeps producing saliva...so we'll have to do this again in three months.

Next we had an appointment at 1:00 with the doctor.
We have a primary palliative doctor who is in charge of Hajime, but it's usually a resident who sees him.
It's too bad that the doctor keeps changing after just a short time.
We had a new resident today too.

This doctor seemed a bit stern...I hope it will be OK...

If Hajime's fever persists, they will take a sample of his secretions.
I pray that his fever will go down soon.


(translated by MS)