Saturday, June 15, 2013

Does Anything Ever Go As Planned????

Tuesday morning Evie's home-health nurse came by to check on her. She comes once a week and has been a true blessing to us.  Even if it is just our weekly reassurance that her back looks good and we are doing everything correctly...I need that.  So, she came on Tuesday and did the usual, weighed Evie (11lb 11oz - what a piggy!) and looked at her back, all is looking well, and then measured her head (as usual).

Her head circumference was 2 cm bigger than it was on Friday when the home-health nurse was at our house. This was quite alarming as her head was only growing about 1 cm PER WEEK up until this point.  We knew she had hydrocephalus but it was a slow growth of her ventricles and Dr. Elbabaa decided it would be best to have her back fully healed before surgery. The plan was to wait it out until July 2nd and place a shunt at that time if her head had grown any more. We were prepared for shunt placement for the 2nd.

So, since her head grew so dramatically I thought I better call Dr. Elbabaa just to let them know.  I spoke to his nurse Rachel (love her!) and she asked me if she was acting normal otherwise, she was, so we decided to continue to watch her but that if Evie started vomitting with eating we needed to call her back.  Low and behold, I feed Evie about 20 minutes later and she pukes 3 times, coming out her nose and all. 

I called Rachel back (after much convincing from Joe - I felt so stupid for calling back so soon) and she said to come in to clinic (Dr. Elbabaa has a neuro clinic on Tuesdays and this prevented us from having to pay the stupid ER co-pay). She told me to get there ASAP and to have a bag packed....I knew what that meant.  I called Joe to let him know to meet us there after work and my mom was already on her way. My dad offered to drive us there so we didn't get stuck with 2 cars at the hospital and we were off.

We got to clinic and they measured her head again, it was actually about a half cm bigger than what I had thought.  They thanked us for coming in and said that we were on top of the game and good job for knowing when to call.

Dr. Elbabaa came in (with 4 other doctors/nurses - that made for 8 people in a tiny exam room) and he said we needed to place a shunt....TOMORROW! He asked if I was prepared for the hospital stay that night because he wanted to admit Evie right then. I said I sure was because Rachel told me to pack a bag. Dr. E laughed and said "if only all my parents did what Rachel said!" Made me laugh.

They admitted us to TCU (Transitional Care Unit - like ICU step-down) room 3200 and we were going to be there until Thursday as long as everything went well.  Surgery was planned for 9:30 am on Wednesday. 

Once in our room in TCU a nurse came in to get an IV started for Evie because they needed labs in order to procede with surgery and they would obviously need an IV for the surgery.  To make a long story (a 5 hour story) very short, no nurse could get an IV started. They tried 7 different times, causing my girl to scream her head off each time. They gave her a rest and ordered the tests they could to be collected via heal prick instead. This caused her heals to get poked around 15 times but there was still 1 test that HAD to be drawn by IV. This meant we had to get a nurse in there to have an IV started before the morning to get the test run and get enough antibiotics in Evie (since her wound on her back is still partly open, her risk for infection is higher so they wanted more antibiotics).

At about 9:30pm a nurse from the transport team (the same team that brought her over to Cardinal Glennon after she was born) happened to be walking down the hall delivering a patient and asked if anyone needed anything. Well, actually we do, thanks for asking! She came in to Evie's room and got everything ready, I told her she was being pretty optomistic getting the tape ready and everything and she winked at me - like "I got this". 

One poke, no digging around, and she had the IV in. She drew the blood from the IV and then sealed it off. So now, by the grace of God, she had her blood for her final test and the IV. THANK GOD!!!! My heart was already broken from watching Evie in pain all night and now we were set.

[side note from the night - we spoke to the plastic surgery department who said
Evie could be released to her back for surgery and for the purpose of getting an IV in and then could recover on her side after surgery for a few days and then be released to her back full time.  This allowed me to hold her for the very first time like a "normal" baby.  We video-taped the nurse flipping Evie to her back for the first time - we both cried. I had never seen my daughter's full face since she was born - 5 weeks ago.  It was wonderful, I was glad to see her but it also made me sad because I saw how big her head really was.  It was quite difficult to judge the size of her head when she was on her tummy and you could only see part of her face at a time. At this point I was happy with our decision to proceed with the shunt a few weeks early.]

Wednesday morning Dr. Kemp (neuro doc) came in to mark Evie's head for surgery.  We waited around a bit in the morning and they were ready for us at about 9:00 am - holy cow, we were actually going to be on time! We walked her down to the OR holding area and then watched her get wheeled back.  I felt helpless but knew it was what she needed to feel better. [the doctor said she has probably had an enormous headache for a few weeks due to all of the pressure on her brain from the fluid]

She got wheeled back around 9:45 and we got the call at 10:00 am that they had just started surgery.  At 10:37am Dr. Elbabaa came and got us from the waiting room, they were already done! That was lickity split! They had us prepared for a 2 hour surgery!

Dr. Elbabaa said everything went perfectly. When he placed the shunt in her ventricle a lot of fluid came off the brain. They put the valve on a setting that drained a minimal amount of fluid just to make sure she would not drain fluid too fast.  [her shunt is the "fancy" kind that can be programmed by a magnet on the outside of her head preventing multiple surgeries to correct the amount of fluid drained].

We saw Dr. Elbabaa again that evening and he reassured us everything was looking great. As long as Evie continued to eat she would be able to go home in the morning.

Thursday morning came quickly and Evie was still eating great.  We saw Dr. Elbabaa and Dr. Kemp again.  They scheduled Evie for a head ultrasound to take a look at her ventricles and make sure the size was going down.  They decided to re-program her shunt to allow more fluid to be drained because it wasn't making the progress they expected. It was no big deal, easy peasy and they said the discharge orders would be entered.

We all know hospitals don't work quickly so we didn't get out of there until 3:30 in the afternoon but that's fine.  Dr. Kemp sent orders to the medical supply place to let them know Evie didn't need her apnea monitor anymore and we were off!

We got home, got her situated, Joe went to pick up Gavin and we just tried to keep Evie comfy the rest of the night.

Yesterday we took of the dressings on her head and tummy (incision on the head to place the catheter and the valve and on her tummy to make sure the tubing from the valve to her tummy was where it needed to be and to coil up the extra tubing - there needs to be extra to accomodate growth). She did pretty good all day yesterday but was still kind of clogged up from the anesthesia so the night time was a little rough.

She is now comfortably sleeping in front of me and we are so excited that she can go to her back tomorrow! We will get to hold her like a normal baby!! YAY!!!  Her back is continuing to heal and much to my surprise it doesn't look any different than before. I was so worried we would mess something up. 

Even though this didn't go as planned as to the date, everything about the surgery went perfectly according to plan.  I guess my girl likes to be 2 weeks early for all of the plans I make for her. She came 2 weeks ahead of her scheduled delivery and now she wanted her shunt 2 weeks early as well.  We are now on the road to recovery and hoping this one is much faster than what we have been dealing with for her back.

Thank you so much to all of the prayer warriors out there especially on Tuesday during a very difficult time for us.  God is working a miracle in our girl - you watch, she WILL walk!! Much love to you all!

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