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Showing posts from May, 2011

Another set back

There has been a lot going on in the last 4 days since I have written, and while I have wanted to share every moment of it I also needed to digest it.  I am utterly exhausted in a way that I have never felt before.  I long for the days and nights of when she was a newborn and you have that type of exhaustion.  That type seemed so much more simple than what I feel right now.

So Wednesday we were told we would be getting the new EVD (external drain) placed on Thursday at 7:30 am; I was okay with that, because that meant that the following Thursday we would have it internalized and then maybe up to a week after that, so still 2 more weeks.  Wednesday afternoon sometime, they put in a central line into her little chest.  It is an IV that goes into the chest near the right shoulder and then has a catheter that runs over to her heart.  It allows them the ability to draw blood easier (without more pokes) as well as continue with the vancomycin (the antibiotic she is on).  This antibiotic is…

How much longer???!

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So every day the nurses have their shift change at 7 am and 7 pm, and then about an hour after they are settled with their charges, the doctors walk around and do what is called a round table at each door with the nurse of the patient and the adults are allowed to listen in, ask questions etc.  The whole thing is quite funny actually as on this floor they have a the "rounding ball" which is a pink magic 8 ball! Well I just found out that they do it at night too, I only knew of the morning rounding.  Well, tonight's rounding came with some unpleasant news.

The nurse came in and told me that he had to check Willow's veins as the antibiotic she is on is quite harsh and can actually burn the vein.  Nice I know seeing as this is the second round of this type of drug and it is given for about 10-14 days every 12 hours.  So, the plan is that she will be given a central line for her IV drugs, meaning it will either go in through the chest by the armpit, or upper thigh.  I w…

HER COUNT IS DOWN!!

You heard me right, her eosinophil count is down today.  Thank you God!  
She had continued to go up in her count over the weekend.  Sunday she was up to 46, and this is a count that should be no more than 5... So we began to doubt that the surgery would take place this Thursday.  The other event that happened yesterday was she pulled out her IV again.  This girl is like a female, tiny version of Houdini!  Honestly I am not sure what to do with her lately! :)  The running joke right now with her, is that if she could crawl/walk, she would be making a break for it!  She is still a happy little girl who is nursing like a champ, still quite demanding on my time as she would love to be held by mommy at all times, and of course while we are here I am truly happy to oblige, but when we get home... I will have other children to care for as well, so we will have to re-adjust to all of that again as well!  Thankfully I am not currently worried about that, it was just a thought that the nurses l…

The 15th Day

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So the calendar says it is Saturday, I really would not know the differences in the days except that I did decide to go to work this week to help myself out!  It felt good to get out as I had mentioned in previous posts, and I do not regret it at all.  We have been in a holding pattern all week.  They stopped the antibiotics on Wednesday afternoon and drew more CSF yesterday twice once in the morning and once again in the afternoon....

Results are as follows, it sucks!  The morning draw had her eosinophil count at 28 and by the afternoon it was up again to 36.  :(   So that is why she is receiving steroids once again.  Well, that was indeed craptastic news, but then today happened... I decided to go out and take a break knowing that Jon was not going to be able to make it to the hospital today, and so Child Life Services (a service of volunteers here at the hospital) had offered to sit with Willow and so that was why I took them up on the offer. Well, since we are so close to home, I …

What a day

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Well, it started off okay, got up in plenty of time to get myself to work. Even grabbed a coffee with Jon before leaving the hospital!  (it's the little things right?!)  Did my job quite well today, I really felt like I was back to work and things were going okay.  For those 3 hours I knew where Willow was at, but really there was nothing for me to worry about because for starters daddy was with her, and I also knew that nothing was going on today. It is another waiting day to see what happens.

So I work until 11 am, and call Jon only to find out his morning with Willow was not so precious... She pulled out her IV (that they had just put in this morning seeing as the one in her foot exploded), and that no matter how Jon tried to feed her she was not a happy camper.  So I ran home really quick to find Jon had forgotten to give Jonathan his medicine, so I run to the school give him meds, grab lunch, and rush back to the hospital.  Sure enough she was one grumpy girl!  She was able …

Plan's change

Well, I guess things cannot go smoothly all of the time, right?

They had pulled some CSF yesterday and the results came back already this morning.... Her eosinophil count is still too high, and that means a couple of things, first and foremost we cannot do the surgery on Thursday for the new shunt.The second thing it means is that her body is still indeed fighting off something and yet when they do cultures to see what type of bacteria it may be, nothing is growing.  It reminds me so much of when my liver failed why I was pregnant with her and they were not able to find the reason why they could only flush me full of fluids and antibiotics and hope for the best.

Well, Dr. Foody had called me this afternoon to let me know what is going on and he said they may have to take her off of the antibiotics for 48 hours to clear them out of her system, and then do a run of tests and see if anything grows after another 48 hours... So, if we are lucky and he called infectious diseases today to …

Week 2

Well technically I suppose yesterday was the beginning of our second full week in the hospital, but hey most people see the beginning of the week as Monday so here it is; Monday.

We saw our neurosurgeon this morning and he drew off some of her CSF (cerebral-spinal fluid) to send for labs and if it comes back clean then we are set for her third surgery to take place on Thursday, though I am not sure what time as I did not ask.  I at least have a day and that is fine with me.  I asked our neurosurgeon about the next shunt and since he has already told us it will not be a programmable one, how does he know what setting to place for her.  He said it has to do with the external shunt we have in place currently and if she stays content with where it is at now and how it is currently draining then we will place her with a 1.5 setting and it will not be programmable so we can once again have our house back to normal!

Since he drew off some fluid though her output has been quite slow in comp…

That's it!

I am done being strong through all of this, why do I have to be?  I don't.  I cried a lot today.  I have found that the hardest part of all of this right now is that when she cries and wants to be picked up or if I am holding her and she wants to move to get more comfy I just cannot do it. I have to wait for a nurse to come and clamp off the shunt so that if I pick her up fluid does not come pouring out.  I understand the logistics of it all, trust me I do, but that does not mean I need to be happy about it or even like what is going on.  I cannot just do what I want when I want with Willow and I HATE IT!  There, I have said it.  I want Willow to not have to be here, I want to be home with the rest of the family, and be a part of the day to day again.... I want Willow to be healthy.  And I don't feel that I have that right now, and really I am not sure when we will have that.  Today's weather definitely matches my mood, gloomy.

She still has her smile

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The day after the second surgery

I still believe Willow was given to our family for a reason and boy it sure would be nice to know what that reason may be; but alas that is not for me to know yet.  What I do know is that our little girl is a fighter, she is not going to let this get her down!  So Tuesday was the watch and wait day, lets see what happens while she is given all the steroids, what happens with the cultures they are trying to grow etc. WAIT, WAIT, WAIT!  Ugggh was that day awful or what?!  Well, things can never be easy so I would take the day of waiting I suppose over the next few days....

Wednesday we found out that she has a blockage in her tube in the stomach (also called a pseudo-cyst), she is also fighting the shunt itself as she developed an allergic reaction to it, and so around 6 pm the neurosurgeon calls our nurse who comes and finds me.  He confirmed the blockage in her stomach that we had seen in that mornings test, and said she would be having surgery on Thursday.  He was not sure of her eos…

Another surgery so soon...

They ended up doing the die test at 11 am and we were done by noon.  We knew when we left the room what was wrong, but we were not positive of the solution..... She has a blockage in the tubing in her stomach, which is not allowing the excess fluid to actually drain from her brain properly.  After many nerve racking hours waiting for what the neurosurgeon would say, I finally get a call at 6 pm with him stating that we will be doing surgery around 10 am on her on Thursday.  He confirmed the blockage in the tubing, and said he did not have the results on the eosinophils yet and so he is not sure if he will need to remove it all completely or not. As we are not really sure if the steroids have worked their magic yet.   We may also have to keep the shunt externalized, which would mean the tubing of the shunt would stay outside her body and collect in a bag if we do need to replace the entire shunt long enough for the reaction to go away and then they can place the new one....

I am sure t…

A day of waiting

Well they started her steroids yesterday at 12:30 in the afternoon, and by today we were seeing a fussy Willow. Every time she would start to stir or wake up she would cry, fuss, and be grumbly.  Which is not our normal Willow, so the wonderful nurse Jon ordered some Tylenol.  In ordering the Tylenol it brought the Neurosurgeon up to our room to see what was going on.  I explained that she has been spitting up more, fussier than normal and Dr. Amy said that is normal with these steroids as it can hurt her tummy.... So Dr. Foody (her Neurosurgeon) decided not to give her the last dose tonight, and has ordered the redo of the test (the shunt tap & die placement) for tomorrow afternoon (literally after noon!)

 So today has been all about watching and waiting.  I think this part is almost harder than them doing things with her and running tests and such... The watching of your little girl in pain and there not being much you can do but hold and cuddle her (which at times is wonderful,…

Trip 2 continued

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Well, this trip was not as easy as we thought or even hoped for.

She has developed an allergic reaction to the shunt and they know that because when they tapped the shunt there was an elevated count of eosinophil's (otherwise know as white blood cells or the doctor called it proteins).  They are not sure what part of the shunt she may be allergic to since there is a long list of pieces, and chemicals used to clean and sterilize the shunt; but that part really does not matter.  To treat the allergic reaction they are giving her 4 doses of very strong steroids every 12 hours that started at 12:30 this afternoon.  Then she will have 2 days off of steroids and during those 2 days off she will have another shunt tap that they will test for eosinophil's again, and they will also place die into the shunt to see if there is a leak somewhere along the track. After those 2 days off, she will be started on steroids once again for 4 doses....

It is very sad to see her like this, though I…

Trip two...

Well, we had been questioning the fluid build up around the shunt track all week with the neurosurgeons office, and was told it was normal..  Well, today I gave Willow a bath and noticed that her incision site on her belly was swollen and raised... That worried us a bit, but we still weren't going to take her in right away... But by 2, she had a temp of 99.8, and with children with shunts I was told if it gets to 100.5 then we call in... Well, I was tired of being told things were okay, so I took her to ER.... At first they check her vitals and the temp is gone, go figure symptoms always go away with my kids when the doctors are around... But while we were still in ER and probably just before they were going to discharge us telling me all is fine, she spikes a fever of 100.9!  So they tell me they want to run a few more tests, blood work was done, a poke into her shunt track was done to test the fluid for infection.  It came back with WBC's in it (White blood cells) though I w…

A week after

Well, it has been a week since we had the emergency surgery.  What a week it has been.  I will say that I do see a difference in Willow, she found her hand the other day, and by found I mean she actually SAW her hand with her own two eyes!  For her that is huge (as it was with me! I was so excited)  She loves to try to stand when you hold her up, which is new for her as well, the one thing that has stayed the same is she still tilts her head to the side drastically.  So the nurse from the neurosurgeons office suggested we call Willow's ped. and mention torticollis (http://www.torticolliskids.org/) to see if that is the reason for the head tilt.  I am so exhausted from all that is going on currently that while I did make the appointment, I almost did not want to as this will be one more thing we have to work through.  I know that we are not given more than we can handle and that all of this will make us stronger.... yeah I am currently exhausted and not feeling so strong.

This tim…