Been A While

[Guest guest]

Hi ALL!

It has been a while since Ive' posted. Mostly because I am still

trying to get Blake well.

He has been battling a nasty sinus infection since Thanksgiving. His

pulmonary functions have dipped to 37% in the last 2 weeks. He feels

as bad as he looks. He had a CAT scan done the day after Christmas.

It showed tha Blake's right nasal passage is completly blocked

therefore pusing everything over into the left Maxillary sinus

cavity. He is miserable. The pulmo. was the one who ordered the

scan. When it came back she went down to Blake's ENT and that is

what he told her. He said to Blake needed to go on the IV

antibiotics and use nasal spray. Then he changed his mind when he

found out that Blake did NOT have a port anymore. He said he thought

it was allergic sinusitis and that the Afrin should clear it up. The

pulmo. was very unsatisfied with that. Sooooo, she goes and talks to

the Immunologist. He tells her Blake needs the antibiotic and the

fact taht Blake is blowing green gunk every where and it is causing

him great discomfort then that is proof of an infection. Plus the

fact taht it has been going on since T.G. along with the PFT's being

so low.

Well the Pulmo. says that she did not want to get involved where the

peditrician should be taking care of Blake. She decied to get a 3rd

opinion. The same. I in the mean time am just sitting back and

listening and watching. I told the Dr. that Blake was brought in for

his regular pulmonary check up not for her to be his peditrician.

(This Dr. had taken it upon herself to act as his Ped. when his moved

from our area leaving us to depend on the ER to get any positive

results in taking care of Blake). My main concern was that he was

showing signs of the lung collaspe and pneumonia he had in Sept. I

wanted it nipped in the bud ASAP. I also told her that it was NOT my

idea to be sitting in her office on the day after Christmas when I

had a house to clean and a family to keep up. The reason we went on

this day was because of her. She had her secretary call and cancell

all of her appts. for the Fri. before Christmas so they could go home

early. I told the Dr. he really needed to be seen tehn and not after

he had gotten sooooooo bad. You could say that this was not a good

day for either the Dr. or myself!!

Where do we stand now? Blake is taking Orapred twice daily for 5

days then once daily for 3 days. We are to use the Afrin for 1 week.

teice daily. If he shows no improvement then he will be placed in

the hosp. and given 21 days of antibiotics.

There is one catch to all of this. I could use some good advice on.

Blake has already been through 6 ports. He lost most of them due to

infections(with the exceptions of the one that got turned upside down

when he and dad were roughhousing, and one had 3 major leaks in the

catherer rendering the port unuseable). The Dr. says the one reason

they did not put Blake on the antibiotics this time was because he

has no viable access. Dh would not allow them to place another

one when he lost the last one to infection. He also says no to a

broviac. The Dr. says that she can have a port put in against our

wishes. But says that she also sees our point in all of this. Blake

on the other hand WANTS the port placed. I can see where he is

coming from too. So I am stuck here. I want Blake to have comfort

when he has to go get his infusions and I also dred the upkeep in the

thing with his infection rate.

The way I see Blake right now is that he is not getting better with

this infection. I don't want him placed in the hosp.(it is 2 hrs.

away from home)for something that can be done at home, plus I want

dad to satisfied that we are doing the right thing by Blake.

Well I just needed to vent. Thanks for " Listening "

(mom to Blake Hypogammaglobulinemia, IgG,IgA

non functioning T-cells, rare blood disorder

ADHD, developmental delays, completely homebound)