Updates

Okay, so I am failing miserably at blogging, but I actually have a pretty good excuse.  The second half of November 2010 was complete and utter madness.  Now I am just not really sure where to start............so bare with me! Here it goes......................

11/18/10
Raymond and I arrived at the Children's Hospital that Wednesday night around 2am or Thursday morning which ever you prefer!  We went straight to the hospital to see Ella, she was in the PICU.  She'd  been struggling with fever and seizures on her way there and when she first arrived, but by the time Raymond and I had got there they seemed to have the fever under control.  They had added another antibiotic to the Vanco she was already on.  I can't remember what it was called.  We were so exhausted from our trip that we talked to the nurse and went straight to bed.  The next morning she was going to be having surgery.  They wanted to put a picc line in her left arm.  A picc line is a surgically placed IV, but you can draw blood from it and push fluids through it.  It is also used to push IV meds and it's a very good thing to have if an emergency happens.  She did really well with the procedure! 

At this point they seemed to have her seizures under control somewhat as well.  She was having them, but not dropping her stats really low and needing help with oxygenation.  She was able to get herself out of them in some sense.  The neurology team spoke with us and wanted to know a history on Ella from what we knew and remembered.  We discussed her past 13 months of her life and how seizures were a part of it.  At the end they decided to increase one of her meds to see if that helps get it under control.

On Thursday night they decided to transfer Ella up to a regular floor because she was doing very well.  So off to 6th floor we went.  I forgot to mention how awesome this hospital is!  Raymond and I were able to stay with her 24/7.  They had a bed for us in her room, bathrooms, showers, a TV with an xbox to watch movies, snacks/drinks, and even a laundry room.  We only stayed in our hotel 1 of the 3 nights I booked because it was so nice to be with her all the time!  They also had a 24 hour cafe, so we didn't have to leave to eat if we didn't want too.  We spoke with her new ped. docs on that floor.  They basically wanted to go over the last 13 months of Ella's life, her siblings lives, and our lives.  It was really hard.  I haven't had to do that yet and I didn't realize everything that has happened because I haven't laid it all out there like that yet!  I think it's human nature to cope with things that are painful by just trying to force yourself to forget them sometimes.  But, you think you have.......and then someone asks and suddenly you realize it's still there inside you. It was an emotional experience for me. We decided to stay in our hotel Thursday night because we were so exhausted from our travels still and wanted to get a good sleep.

Friday morning we'd arrived to total chaos.  Apparently early that morning Ella was really having a lot of seizures!  One of them was so bad the nurse called a code (not really knowing Ella that well as a patient) and there was about 30 medical staff in her room.  After that the nurse was concerned she wasn't going to be able to keep a close enough eye on her with having 3 other patients, so they decided to move her back to the PICU.  It was short lived and back to the PICU we went!  We understood we wanted what was best for Ella too!  Things were pretty uneventful after that they were monitoring her seizures and the Doc's were working with her trying to figure things out.  The game plan when we left was to first test her and see if she truly needed her shunt (I knew she did, but if they wanted to try it out okay) and if she needs it internalize her shunt tubing.  They tested her by stopping the tubing from releasing the fluid into her bag.  By doing this it doesn't give the CSF fluid anywhere to go so it stays in her head.  If that failed, which it did her ventricles were big after 24 hours, they felt the best option for little Ella was to put it in a vein above her heart.  They said she is too little to put it in the plurial cavity of her lung.  Some risks and disadvantages to putting it in the vein, well they cannot coil the tubing.  Coiling is nice so as someone grows taller the shunt tubing moves upward with them.  You can't do that in a vein.  The other risk is the tubing getting a clot on the tip, infection (this is always a risk they have to discuss with every single thing!), and last you can develop a rare condition that effects the kidneys.  It only happen in shunts that are placed this way.  It basically causes you to go into renal failure of course there is a medical term for this condition that I cannot give you.  The good news is it's easily treatable if it happens and completely reversible (that's what the surgeon said).  The bad news is the shunt has to come out if it happens and then we start over.  Positive energy people!!!!!!!!!!!!!!!!      

11/21/10
Before we knew it it was Saturday and we had to go home and get Joe!  We said our sad goodbyes and headed back to Rapid.  We knew she was in a good place and they have tons of specialist there working with her to help her get better and come home!

Then we returned home to find out we were finally going to close on our new house!  Finally!  We were so excited!  Tuesday 11/23/10, Ella had her shunt surgery.  They internalized her shunt.  The neurosurgeon contacted me to discuss the procedure.  He said he was going to remove the entire shunt system she currently had and start over with a new shunt on the other side of her brain, which was the right side.  We both agreed that was the best idea. Another surgeon was present for the procedure and he was going to place the catheter (shunt tubing) into the vein.  The procedure went very well and they were very happy with it.  The next day, Wednesday 11/24/10, Raymond and I closed on our house.  Went home to our now former rental house after closing to find out the house we were renting furnace wasn't working!  Only this would happen to us! I guess we are blessed we closed when we did, so I am not complaining! Soo..........we had to take Joe to my Mom's because it was like 40 degrees in there and start moving that night!  There we were moving at like 7pm in the freezing cold..... it was awesome!  The next 4 days is a complete blur consisting of moving, unpacking, some Black Friday shopping, and more unpacking!  Before we knew it it was this past week and the month was coming to an end! 

There you have it.........why I haven't blogged and I didn't have internet until this past Thursday!  Now you have my promises to keep my blog up and get on here a couple times a week!