Day One of Rees' Surgery

Hello everyone!!  It is the evening now of the day of Rees' surgery.  I'm alone ... except for Rees who is pretty heavily sedated and the various hospital staff that come into Rees' room at least every hour but sometimes more often.  It's quiet ... except for the constant beeping and compression noises coming from the many machines and pumps that are hooked up to Rees and monitoring him.  

But let's start with the beginning of the day.  It actually started and went quite well.  We arrived at the hospital on time and got started almost right away.  

We were taken to the prep room and changed Rees into his gown.  He was very quiet but seemed really calm.  

Baba held his hand ... as promised.  Mama did too (when she wasn't taking photos.)

Humorous boy that he is smiled nice and BIG for this photo I wanted to take of him and Baba ... but then didn't want to smile for a photo with me (little stinker)!

So, I got this photo of him after threatening to get into the hospital bed with him.  

Apparently, that is not a pleasant thought to him ... hahaha!!

It wasn't long before the nurse came in to give his "silly juice" ... interestingly, it did not make him "silly" or act goofy like our daughters did when they had their surgeries.  

He just got VERY CALM and RELAXED!!

 

We were then directed to the Surgery Waiting Room and told that we would receive an update every two hours.  There was a large screen that listed patients by a six-digit number showing the status of each child's surgical visit.  In the photo below, Rees is the only "GREEN" status showing that his procedure was in-process.

During the middle of the day/procedure, we were SO BLESSED to hear from one of our new and dear friends, Anissa, who happened to be at the hospital today on assignment.  She contacted us and then stopped in to spend some time with us.  It was SO WONDERFUL to chat with her and pass the time.  Before she left, she prayed over us and our family and for Rees and the whole surgical and healing process.  We are so thankful for the opportunity to visit with her.

The surgery was complete at exactly the 6-hour mark!!  Talk about punctuality!!

Dr. Denny took us aside to let us know how everything went and he gave us a lot of information.

So, if you're not interested in the "medical/scientific" aspect of the surgery, you may want to skip down to the part where you start to see photos again.  

I KNOW YOU'RE NOT GOING TO DO THAT, THOUGH, RIGHT??

Okay, so not necessarily in order of how it was told to us but as best as I can piece together from my earlier notes ...

... leave it to Rees to surprise us all and be different than we expected.  Dr. Denny said (and the recent MRI confirmed this) that Rees did not/does not have an Encephalocele as we believed him to have.  Externally, he looked very similar to Molly and Brynn, who were both born with Nasal Encephaloceles.  Dr. Denny said Rees' facial anomaly is more likely the result of a Hamartoma.  

Taken from eMedicine.com, a Hamartoma is "a benign (noncancerous) tumorlike malformation made up of an abnormal mixture of cells and tissues found in areas of the body where growth occurs. It is considered a developmental error and can occur at a number of sites." 

He said there was not a "mass", per say, but a lot of fatty tissue that had to be "SCRAPED" away (which he says they just don't normally do) from under the skin and around the bone.  There was LOTS of bone, very thick and very solid bone ... great from a skull perspective, however, he literally just had too much of it, even in places that it wouldn't normally be.  This aligns with the thought that it was really a Hamartoma.   An interesting thing Dr. Denny also told us is that Hamartoma's can also come back, so Rees may have to have periodic CT Scans to monitor his bone growth.  Bits of tissue and bone were sent to the lab to be evaluated but he did mention that the lab doesn't usually like to deal with bone so we'll see.  Rees had a very large head and forehead, where Dr. Denny removed a lot of bone.  He kept reiterating that there was just a lot of bone.  He cut the portion of bone out that was between Rees' eyes and nostrils.  This is the portion of bone that was mostly affected by the hamatoma.  He then resectioned his forehead (removed a rectangular portion of bone from the center of Rees forehead) and basically slid it down and grafted it to become Rees' nasal bone (which he actually did not have before, despite the large bony mass).

In doing this, Dr. Denny also moved both of Rees' eye sockets one-half inch inward (is that the right word?), towards his nose, that is.  As he put it, that's HUGE!  He also had to make him two new airways because, again, he had to remove the large bony defect that was where his nose should have been.

Okay, so back to some photos and what's happened to Rees since the completion of his surgery.  It took quite a while for them to get him into his room set-up.  He is hooked up to A LOT of equipment!

There is a very large monitor in his room that shows ALL, I mean ALL, of his stats.  It has everything on it and later in this evening, I learned that the screen is for OUR benefit and WE CAN TOUCH IT!!!

Any of you medical people out there ... you know what all this means!!  With me being the freaky numbers person that I am ... well, let's just say I am eating all these numbers UP and watching them constantly!

Okay, so here's where we get into the MEAT of this moment that I am in right now, as I sit here at almost 9:30pm (8 hours post-surgery).  You might notice in the photo above, there is a section in the middle that has colored boxes and also a colored stacked graph that is mostly RED and has two other colors but in much smaller proportions.  This shows the amount of blood that he lost (the red color) and the other two amounts show what was given back to him in various forms.  Now, it's a little deceiving because it makes it look like he is SHORT on blood supply but he is technically NOT.  The average adult has 10 pints of blood in his or her body. One unit of blood is roughly the equivalent of one pint.  During the surgery, Rees continuously lost blood and he was given NINE UNITS of blood (the two from designated donors plus an additional seven units).  The nurse said that his blood supply was completely lost and replenished during the surgery.  WOW!!  I cannot even wrap my head around that!!  

Near the bottom of the screen in the above photo there is a section that says "Problem List".  It lists 'hospital' because he is post-surgery.  It also lists 'occular hypertelorism', which accounts for the fact that his eyes were very wide apart and were physically moved.  This is noted because Rees may have vision problems or be cross-eyed for the first few days.  In some instances, the problem can continue and would need to be corrected by further surgery so this is something they will have to evaluate.  The third point noted is 'acute respiratory failure'.  This is another hard one, especially to see it actually noted in relation to our little Rees.  

Due to the amount of blood loss and the fact that Rees was continuing to 'bleed' and 'ooze', Anesthesia said it was safer to keep Rees intubated to help him, which also meant that they would keep him sedated.  This was done to help him rest better and to be sure to get enough oxygen.  The tube has a "bubble" ... or a cuff, as they call it.  This would prevent Rees from aspirating if, say, he was to vomit, which is something that happened after Molly's first surgery.  And let me tell you, that was HORRIBLE so I was a little relieved that they were doing this.  

Rees has continued to lose some blood, though, and this has been a bit hard.  He continued to 'drool' blood and saliva and blood was also pooling in the sides of his cheeks and running out along his neck.  

Our very awesome nurse, Karly, had to come in frequently to suction out his mouth and throat.  

They felt that he was loosing more blood than he should and so they inserted another tube with a suction to keep the blood from draining into his stomach.

They also made the decision to add to his blood supply again.  Again, I learned something NEW!  They did not just give him whole blood OR EVEN red blood ... no kidding!!  They gave him what is called Cryoprecipitate, also called "Cryoprecipitated Antihaemophilic Factor", "Cryoprecipitated AHF", and "cryo" for short, is a frozen blood product prepared from plasma.

Guess what??

It is not RED.

It's YELLOW!

This evening, Rees' numbers have shifted a lot.  His heart rate has been in question as it is lower than they would like to see it.  The issue could be related to the numerous meds he is currently being given so they did reduce one of them a short while ago.  He also has a slight fever but they are keeping a very close eye on him.  The night nurse came in and he is VERY CAUTIOUS and constantly checking on Rees.  This makes me feel like I can at least try to relax and get some rest.  They are hoping to remove the tubes in the morning so that will prove to be an eventful start to the day.  For all of you who weren't getting the facebook group updates all day, thank-you for your patience, for your prayers and kind words.  You get the LONG, drawn-out, EXTENDED recap of our day but we hope you feel well informed and that you will continue to keep us and our little guy in your prayers.

Good-night!!