Re: Still waiting

[Guest guest]

Hi Helen,

I am glad that you like your doctor. You and Matt are still in my prayers!!

, wife to Preston, mother to Shelbie 8, Mandy 3 and 13 months

Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families

Registered Chat for Preemies Friends and Family.

----------------------------------------------------------------------------

----------------------------------------------

HEART-----Heart, intellect, awareness, mind, inner person, inner feelings,

deepest thoughts, inner self.

Still waiting

>From: HBDOEM@...

>

>Helen Mom to Matt(CVID)13 yo

>

>Thank you all for your warm thoughts and prayers. Yes, I do have family.

Matt

>and I live with my mom who is 70 in August. She, for the most part, is

doing

>quiet well with all of this. She has grown through her medical fears with

>Matts PID and is doing more with my recent diagnosis. Her mom died of

cancer

>so I know this is difficult for her. Also, my oldest sister has moved here

>for the summer. She had plans to do this prior to my diagnosis so this has

>worked out quiet well. She is an epidemiologist. She has accompanied me to

my

>appointments. We both feel confident with my urologist. He has allowed her

to

>observe my first cystoscopy. Actually, that was kind of interesting to see

>the inside of my bladder.

>

>I underwent more indepth testing this past Wednesday. I have finally

cleared

>from the fog of the general anesthestia and pain meds. Biopsies of my

bladder

>were taken (5) and washes of each kidney and bladder were sent out for

>cytology. My narrowed eureter is congenital. So now we wait. Oh, goody,

more

>waiting. Now that the meds have worn off I again am having trouble sleeping

>and eating.

>

>I have spoken with my urologist twice since Wednesday. I am very happy with

>him. He is gentle and compasionate. I called because of a low temp on

Friday

>and he mentioned he had been thinking about me. I know that that may seem

>small and odd but I felt cared for. Today when I spoke to him...still low

>temp he was concerned yet felt it was probubly the trauma and emotions of

>waiting and not an infection.Called me back within 20 minutes on a holiday

>and all!

>

>Matt is doing well. Health wise we start going off abx today - prophylactic

>dose. I am not sure I want to do this know but we need to know how he will

>do. Basically he is symptom free other than " sinus breath " . Emotionally he

is

>doing generally pretty good. We talk about it and he has shared with a few

of

>his close friends. I have shared with their parents so that they can assist

>in my supporting his needs.

>

>Again I thank you all for your thoughts. They are a great support to me. I

>will let you all know the results when I am aware and able. Even admist all

>of this I find myself thinking of all of you and your pumpkins. God bless

you

>all. Helen

>

>---------------------------