Frustration is setting in....

Well, as I had said the surgery on Thursday went well.  She did great through her recovery and was discharged on Saturday!  Yeah homeward bound!  I did indeed have mixed feelings about this as I really thought that they were going to keep us in order to watch for infection or any signs of allergic reaction... But no we got to go home! So we pack up, with the help of our Aunt Becki, and head home.  It was a joyous reunion of sorts; Jon was working, Jonathan was in bed sick and the other two kids were with a friend at Millennium Park!  So, I unpacked our things, started to clean my room and then decide to go sit out side for a bit and enjoy the sun, fresh air and hold Willow on my lap.  One of our neighbors came over and we were just talking and she just happens to notice that Willow is sweating. Only it was not sweat, it was indeed CSF leaking,  only from the old shunt site!  What the heck?! So, I of course hit panic mode and take her back to the hospital, where they replace the stitch and keep us over night.  Joy.

So Sunday I was given the choice as to whether I wanted to stay or go... Yeah I know the choice?!  Of course I am going to choose to go home, but not before asking a hundred and three questions. Such as are you going to run any other tests to make sure the shunt is working, she has been super fussy today and that is not normally her what can we do to find out what is wrong? Ultrasound, CT?? Anything?!  Of course they said nothing, so I said fine, we will go home and watch for leaking.  Well we made it to nightfall, and was able to go to sleep in my bed!! Ah, the glory of it all.  But at 3 am, I noticed after feeding her my arm was wet... Not a good thing, but I hope that it is not fluid and decide to put her back to bed and go to sleep... Well we wake up this morning and notice that yes indeed she has a wet spot under her head and she is indeed still leaking CSF. How frustrating.

I take the kids to school, and then her to ER.  They draw blood (to check for infection), do a Nuc. Med study (the die in the new shunt to check if it is working), and then admit us.  All the while I am not able to feed her, so I take Jonathan to the peds. office as he is complaining of a sore throat and has a rash on his body that I thought was heat rash... Yeah way to go genius mom, strep throat with scarlet fever.  Nice huh?!  Then go back to hospital and she finally gets to have surgery at around 6 pm. Yup another surgery, this time they opened up the side that does not have the shunt (as that is the side leaking fluid out) and pack the hole with something (he was not specific) and then restitched her up.  We will be here now for 4-5 days and waiting for cultures to come back.  Hopefully all negative, because if one comes back positive we will be here all month (more surgeries etc.)

So this makes her 6th surgery in only 5 weeks.  I cannot believe that she has had to go through all of this, and yet I also cannot believe that we as a family are having to go through all of this.  I am beyond understanding at this point, I want to go home and stay home, preferably for a long time but will settle for at least a week.  I want to know why we have to keep having problems with all of this, when I hear so many stories of people who get a shunt and are good for years to come... Then again I have heard the flip side to that as well (where the children do not make it) so I guess we have a "happy medium", only I do not currently feel so happy.  I want to go home, and be with my husband and kids. I got to wake up this morning roll over and cuddle with Jon before getting out of bed with to get the kids ready for school.  I happened to come back a bit later to see he was awake and holding Willow's hand like he used to when she first came home. I WANT THAT BACK!

I want to argue with Mandie in the morning to get out of bed and eat breakfast so we can make it to school on time.... I just want my families life back.  Yet we will never have that back, and I will come to that understanding, but until then... I just want Willow to heal and leave behind the hospital for a while, if even only for a week.

Comments

Carielle said…
I am so sorry, Donna! Many prayers are being said for you and your family! Stay strong, Mama!!! *HUGS*
Jodi said…
Oh Sweetie! I wish you could catch a break! I think Willow was thinking that the nurses were going to miss her, the little stinker! I pray that the cultures come back negative and your stay is a short one! We have park playdates to go to!!! Hugs!
Brian said…
Sorry to hear how hard things have been Donna. We are praying for you and your family here at Frontline. Wish it was an easier time for you

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