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Hey Friends!  Guess what??

We're HOME!!!

Yep, that's right ... Rees was improved enough that we were able to be released from the hospital yesterday.  Since my last post a lot of things happened ... pretty typical for us lately.  Wednesday evening Rees had surgery to place a lumbar shunt.  The neurosurgeon explained that To implant a lumboperitoneal shunt, an incision is made near the base of the spine, and a small catheter is inserted into the subarachnoid space of the lower spine.  The catheter is attached to the valve, which is usually placed around the hip bone or rib cage. The catheter is then tunneled under the skin to the abdomen, where it is inserted in the abdominal cavity.  The surgery seemed to go well according to the neurosurgeon, though, you may not be suprised to read that I certainly had my doubts.  I'm sure you can understand.  There were too many inconsistencies with the debate over whether or not Rees was experiencing were due to a CSF leak.  Three beta-2 transferrin tests came back negative.  The neurosurgeon could NOT find a leak during exploratory surgery with specific tests to detect a defect or hole in the dura.  Several of the complications did not correlate to the effects of a CSF leak and symptoms thereof, ... well, Rees didn't really have.  

Immediately after the surgery, when the PACU nurses wheeled Rees out and took us back up to his room, he had swelling on his forehead and left eye and the gauze covering his nose was saturated with red and yellow fluid.  When Rees went into surgery he didn't have any fluid showing through nor was he swollen.  Here's where I remind the readers that this most recent surgery was done at the base of Rees' back giving him an incision next to his spine and another across his abdomen.  Considering everything that has happened to our little guy and the fact that this surgery marked six weeks to the day of his first surgery, I was a little panicked (I know you're not surprised) and I told the nurses I wanted the Plastics Team to come see him right away!  [I did find out from the neurosurgeon the day we were released that Rees had to be placed on his side and stomach for the surgery which is what precipitated the increase of  fluid that caused the swelling and the soaked gauze.]

About an hour and a half later, a Plastics Resident who I had never seen before came to our room, which meant that he had never before seen Rees and was not familiar with his case.  I was quick to point this out to which he replied, "well, I've seen his CT."  Ahhhhhhhh!  Anyway, I explained everything to him, which I was becoming quite accustomed to.  He turned out to be a very compassionate guy, speaking to Rees in an amazing way and also letting him play a game on his cell phone (even after Rees inadvertantly tried to purchase a new app!  LOL!).  I removed the gauze from Rees' face and the doctor witnessed yellow fluid come out of the same space that we had seen the night before (which was what precipitated the surgery for the lumbar shunt placement).  At that point, it had been two days since the lumbar drain had been removed and there was a very small bulge forming on Rees' nose.  The doctor kept talking very soothing-like and kept saying to Rees, "you're going to get better little buddy; you're doing great."  He said he would document it and let the other staff know.  I found out in the morning that he put Rees on an NPO order (nothing by mouth) in anticipation of another surgery because he was concerned that the shunt may not have been working properly.  By the time the Plastics Team came on morning rounds, the fluid had slowed down and what showed on the gauze proved positive to them, although, it was clear that Rees' nasal area was filling up with some fluid again.  We were told that we would just keep an eye on it (as usual) ... my eyes haven't been anywhere else the last six weeks.  

On this first day after the surgery to place the shunt, Rees was very uncomfortable due to his new incisions.  He was very "down" and also very hesitant to MOVE because of the discomfort.  This was literally the FIRST TIME that he expressed he was in pain in the last six weeks (okay, with the exception of the removal of the staples on his head).  He would put his hand to his abdomen and say "Owie!"  And he cried out in pain and shed some serious tears several times throughout the day due to having to be moved to prop him better or sit up to eat or remove his pants to "go potty".  This was difficult but the doctor assured us that it should not last too long.  

My brother who lives in Florida happened to be up for a visit so he was able to come to the hospital to meet Rees for the first time and he brought my sister along too.  Darren put puzzles together with Rees while Debbie fed him applesauce.    

Rees had warmed up to Uncle Darren in no time!

It was really good to spend time with my brother and sister.  They even took me out to lunch, which was SO NICE!!  While we were out, it turned out that Rees' IV failed and had to be removed.  As we were coming back, they told us that they were gathering together several staff members and a Child-Life Specialist to assist as they put in a new IV.  (They had already contacted the Emergency Department but they were not able to provide any staff support at that time)  They knew from the previous episode that placing an IV was not going to be an easy task with Rees.  So, my sister, brother and I went for a little walk because I DID NOT WANT to be present for another IV placement.  We weren't gone too long when we walked past one of the nurses stations and saw one of the nurses who said, "we're all done!"  SHOCKED and RELIEVED, that's what I was! 

My co-worker, Diane, happened to be there sitting with Rees while we were out to lunch so she stayed in the room and assisted the Child-Life Specialist as they created a "tent" for play to distract Rees while the nurses worked to place a new IV.  It worked like a charm!!  I was SO HAPPY that it did not go like the last time, though, I was a bit concerned because this IV had only lasted four days as opposed to the first one that lasted six days.  

The next day, when the teams came on rounds, the drainage on the gauze was less than the day before.  The plastics team felt that there was already a significant improvement after placement of the shunt and the neurosurgeons were pleased with the way things looked as well.  Dr. Denny asked Rees if he would like to go home and Rees just looked 'incredulous' as if he didn't believe what he was being asked.  After a few hours, everything was in place for him to be released.  

Here's Rees happy to be IV-less and in his "street clothes".  

We have a long way to go; we're far from done with this medical journey but we are extremely happy to have this portion of rest before the next step.  We still need to see how Rees' current state evolves and carefully watch as his healing continues to progress.  In the next couple of months, decisions will need to be made but for right now, we are just watching, waiting, praying and persevering as we continue on this path that God has placed us upon.     

We continue to covet and appreciate your prayers.  Parts of this journey have been very difficult and your prayers, your encouragement, your comments, your love and support ... IT HAS MEANT THE WORLD TO US!!!  In many ways, it has surprised us, even.  We have never found ourselves to be in "this place" and we never KNEW that SO MANY would come alongside us.  We will never be able to Thank You ENOUGH!!

GOD HAS SHOWN UP!  

Though at times, I have seriously questioned the presence of God in our situation, I have come to realize that in the end things may not go the way that I want them to ... but I DO BELIEVE that He will get me through it.  Just typing those words brings tears to my eyes and a lump in my throat ... the realization is BITTERSWEET.  

Today, I opened one of the many cards that have been sent to us and it reminded me of this.  It said: "There are times along life's journey that can test the spirit deeply ... and though this is one of those times, may you never stop believing that your faith, your inner strength, and the power of God's love will carry you through."

AMEN!!