More Than We Thought ... Update on Rees (Day 5)

Hi Friends!!  We're still here!  Sorry about skipping a day for updating but I'll make up for it today.  We are still in the hospital (Children's Hospital of Wisconsin) just hanging out and progressing pretty well now.  Our little Rees is such a trooper and we are so proud of him.  We imagine him thinking back to our conversation about going to the hospital and having surgery ... we think he must be saying to himself, "OK!  This is NOT what I signed up for!"  No matter how well we explained to him what he was going to go through, it's impossible for him to really know, ... until it was actually happening to him.  And, of course, he went through More Than We Thought. Isn't that the way it goes, though?  

I had a feeling as we got closer to the day of surgery, thinking I knew what we were going into and familiar with the procedure and recovery process, that God was giving me a little 'tap on the shoulder' or 'whisper in my ear' ... "It's not exactly the same.  More will be experienced.  And more will be required."  So, while there have been many new differences from when Molly had this surgery, none of the new differences have been terribly shocking or surprising.  

There is the little voice inside me ... the one that likes to put me into a "panic" ... that starts asking me the various questions that lead to anxiety.  But then there's the other voice ... the Voice of Truth ... the One that tells me to TRUST and take it One Day at a Time.  Whatever will be, will be ... I knew this when we started to process to adopt Jonah and Rees.  I knew it was going to be A Lot, that it would require A Lot of us, from us.

Yesterday, we had visits from several of the surgical staff.  Of course, Dr. Denny came by and he talked to us (in his street clothes) for about 30 minutes.  He checked on Rees and told us that there were some things "we need to talk about".

He talked with us about the various issues that Rees is dealing with as he heals and gave us more detailed explanations as to why those things are happening the way that they are.  

Rees' eyes have been such an issue because Dr. Denny actually moved the eye sockets manually when he brought his forehead and face in/closer together.  Because of this forced movement, he had to detach and reattach the ligaments that are around the eyes.  This is why he was bleeding from his eyes and why they were so painful.  This is also partially the reason that they have been so swollen as well.  Because he manually moved Rees' eyes, he told us that there is a chance that he will be cross-eyed or blurred vision once his eyes are open.  We can now see, as his eyes are beginning to open, that his right eye is going inward quite a bit and there's a bit of yellow-ish film over it.  His left eye seems to be centered well.  Interestingly, prior to surgery, Rees' left eye was a slight "wanderer" and now is more centered.  Anything can still happen at this point so continued prayers for his vision and eye muscle coordination is very much needed.  

As far as Rees eating very slowly and not talking, Dr. Denny really helped us to understand what it must be feeling like for Rees inside his mouth.  This type of surgery really affects so much!  First, the incision that is across his head, literally goes from one end to the other.  In the photo below, you can see how it is on the left side of his head.  The incision goes all the way across and ends above his right ear exactly the same.  Right above his ears is where the joint connects for his jaws.  When he talks or chews or swallows, he can feel that and it is tender, even painful, which is why he has been very slow to eat or open his mouth.  His teeth are in a completely different place than they used to be.  That's right ... so he needs to get used to how his teeth meet.  He may bite his tongue or the inside of his cheek and as this happens, it might slow him down because he doesn't want to do it again.  We knew that Rees had a very small incomplete Cleft lip (so small that we were not even considering correcting it) but there was no indication that he had a cleft palate.  Even after he had the CT, I don't think they mentioned anything about it ... BUT ... yesterday, Dr. Denny DID say that there is, in fact, a cleft palate and that because of the surgery, Rees may actually become aware of it because there is now officially an opening.  Prior to surgery, the hamartoma tumor may have been obstructing the cleft.  So, this is something that will be taken care of during one of Rees' future surgeries.

So, next, Dr. Denny talked about the hamartoma.  He told us that he has only had one other patient with something similar and that because the type that Rees had is so rare it has been difficult for him to find any literature on it.  Now, to put this in perspective, the photo below is of Dr. Denny.  GREAT Guy!  

Excellent Surgeon, Medical Director, Professor, ... he's been around the block a few times.  You can see that, right??  But in ALL his time, he's only had one other patient with a similar anomaly.  That tells us it really is quite rare.  He told us that he's NEVER seen a patient like Jonah ... oh boy, ... but that's another time.  So, he's trying to look into this more and he's hoping and we're hoping that MORE can be found.  In the meantime, Rees will have another CT scan and MRI in about six weeks.  They will use these scans to create a new "base" and then he will have more scans in the next few months or so to determine if there are any changes, to see if the tumor is re-growing, which Dr. Denny said IS POSSIBLE.  That could create problems. that could UNDO everything Dr. Denny did.  We hope that won't happen.  We hope and pray that it stays away!

Rees was also visited yesterday by the Anesthesiologist.  She stopped by because she wanted to see how Rees was doing.  She also was in her street clothes ... so impressive.  She talked for a bit and was happy to see him doing a lot better.  She said it was remarkable because he had to have his blood volume replaced "just shy of TWICE" during the surgery.  Lightbulb!!  Ohhh ... that makes sense after she said it but it hadn't clicked before.  The average blood volume of an adult is 10 pints of blood but Rees is not an adult.  His blood volume is about half that at 5 pints and they had to give him 9 pints of blood during the surgery.  WOW ... that really is a lot!! We are so thankful to our designated blood donors and also to all the other unknown donors who are faithful to give blood on a regular basis.  It's SO IMPORTANT!!!  We are so blessed just by a simple blood donation.

Rees felt good enough to play in the children's play room on his floor so he went in there a couple times.  It was in this room that he actually tried to use his fingers to pry open his eyelids because he wanted to see the toys.

For dinner he had some butterfly shrimp and he even started feeding himself more.  This was great to see.  A big improvement!

Today, Rees can open both of his eyes his appetite is improving!

They have even let him be "unhooked" to the IV pump as long as he takes in the required amount of fluids.  When he isn't drinking enough from his cup(s), then we just get him a popsicle to help him out a bit.  So far ... so good.  It's really nice to have him free of the POLE.  We even got to go down to the first floor and look at the fish aquarium.  Rees really enjoyed this so we did it a couple of times.

He's also playing with some toys that were brought for him by our neighbor ...

... and his Auntie Jen-Jen came today with Brian and the kids and got to spend some time with Rees as well!!  Visits are SO NICE!!

And speaking of nice visits ... I feel terrible because I did NOT get a photo and I'm usually pretty good about such things ... but we had a really nice visit from Della and Jerry from Green Bay.  Their visit was our first time meeting them.  Yep, that's right!!  They read the news article about us and we started chatting via email recently.  Their son lives near Milwaukee and because they were going to be in the area, they asked if it would be okay to stop by.  It was SO NICE to meet them and they were able to meet ALL the kids everyone was at the hospital at that time.  They brought lovely gifts for the children and we are just SO THANKFUL for them.  They have blessed us immensely and their visit was a bright moment in a disappointing day (because we weren't able to go home).

The LORD has continued to bless us.  We may be dealing with some challenging stuff.  We may be tired (exhausted, even).  We may not know exactly what is going to happen going forward.

BUT we know that God is Good.  He is with us.  He is not unaware of what's happening today nor what will happen in the future.  We are trusting Him.  We will keep trusting Him.  

Prayer Requests:

Continued strength and endurance and good health for us as caretakers.

Continued improvement for Rees, especially for his eyes.

That the tumor will not return.

Compassion and understanding from everyone in our household, especially when we get Rees home.

Strength and healing for our daughter, Molly, who continues to fight sinus issues and colds since returning from China and now has a form of Shingles.