Wow!  Friends, it has been exactly 24 hours since I posted to give an update on Rees and in that time so many things have happened.

Each time the nurses come to do vitals, there are certain things that are assessed such as heart rate, blood pressure, temperature, pulse oxygen, reflexes, etc ... Now because Rees had a lumbar drain in place, they would also have to check his back just to ensure that everything looked as it should.  

Below is a photo that I just pulled off the internet because I did not take photos of Rees' back.  The photo below shows a lumbar drain placement on an adult.  

Rees' placement was much smaller and the bandage did not cover but a 4 x 4 inch space.  Late yesterday, when the nurse checked Rees' back, the coverings that he was laying on were all wet.  It was discovered that the drain had come loose and one of the stitches around it had broken free.  This was cause for concern and so the Neurosurgeons were paged.  A quick, simple procedure needed to be done to repair the broken stitch and secure the drain again, however, as we are finding out with Rees, nothing is quick or simple.  I was so proud of Molly, Brynn and Jonah who were present for the whole thing.  We had to have Rees lay on his stomach (which he did not do willingly).  The whole thing was quite the ordeal and Rees was uncooperative and very distressed.  The boy can really scream and I have now been privy to it twice (the first time was when they removed his staples along the incision across his head).  

Another concern that the nurses have noted is that Rees' heart is what they call "tachy", which is short for Tachycardia.  Tachycardia is an abnormally rapid heart rate.  In adults, this is usually defined as >100 beats per minute (bpm).  In pediatrics, the normal heart rate varies with age.  Rees falls into the 5-7 years of age category which is 65 - 133 bpm.  Rees has been gradually increasing in rate and was up to 150 bpm earlier today.  His more average number was about 105 - 112.  The nurses have noted this several times, but so far the doctors are not as concerned.  Rees may have anxiety as he does exhibit a pattern of behavior that suggests that he is nervous, especially if someone new comes into the room or if they want to check his IV or lumbar drain.  He whimpers and tries to "shoo" them away; he refuses eye contact and he won't speak.  These are things we have learned from Rees that show us he is distressed.  

During the night last night, Rees' IV "failed" or was "blown" meaning that it had to be removed because his vein would no longer support it.  This happens when an IV is in place for a long period of time.  This meant ...that a new IV had to be inserted.  This meant ...that Rees would have to be poked with a needle so the new IV could be inserted.  

This.meant.Rees.was.going.to.be.VERY.UPSET!  

There were three nurses trying to help the procedure go quickly and smoothly, however, ... remember ... quick and smooth are not on our side with Rees lately.  Those nurses could not get Rees to relax and after poking him twice and not being able to insert the needle and get the tubing placed correctly, they had to take an alternative route.  Nurses from the Emergency Room were called and they came up to place the new IV.  They were all commenting how strong Rees was ... well, that's something to be proud of, isn't it???  We are always telling Rees how strong he is and he shows us his arm likes he's trying to make a muscle and he repeats us, "Reesy strong!"  Again, Rees was screaming so intensely, all I kept worrying was that something drastic was going to happen due to all the pressure that he was creating around his head and face.  The poor little guy was turning purple and drenched with sweat.  These ER nurses were successful after two attempts and Rees eventually calmed down.  Needless to say, he was pretty tired and slept a lot longer than usual this morning.  

Earlier today, Rees' bedding was again wet and it was determined that the lumbar drain needed to be removed instead of just clamped.  The nurse and I talked about the steps that involved in removing the drain and I suggested that they make sure that there were plenty of extra hands available to assist based on the two previous experiences during the night.  Thankfully, it was suggested that I actually leave the room for the procedure so I walked around the floor a few times.  Unfortunately, I could hear Rees screaming despite meandering the halls.  When I did come back to the room, he had calmed down and seemed to be relieved that he could move around with more ease.  

AND THEN ... our nurse came into our room at one point and said that she needed to let me know that a test result had just come in based on a culture that was taken during the surgery last week.  She said that the culture tested positive for MRSA (methicillin resistant staphylococcus aureus), which meant that Rees was considered to be in "Isolation" and they would need to put on special disposable gowns and gloves each time they came into the room.  Of course, I wanted to go into an immediate panic!  However, they did say that other than the isolation precautions, nothing with Rees' current treatment plan would be changing (at this point).  So, ... I will not panic ... I will not panic ... I will not panic.  Apparently, this is quite common and that many people can be carriers of MRSA and not even know it.

And to top off our day, there is now a small-ish blister-type spot (that looks very suspiciously like the ones that Rees was getting on his face) directly above the four staples that are in Rees' head incision.  Remember, this is where his already healing incision was re-opened just slightly (about an inch and a half) so that the nasal bone graft that was removed could be "saved for later".  It appeared very quickly, as in it wasn't even there when the doctors came to do rounds this morning and then within probably 30 minutes, there it was.  It progressed very rapidly from a small red spot to a raised blister.  It is not at all even close to being the size of the ones that Rees was getting on his face, however, it did start to drain after a couple hours and the drainage, in my opinion, looks exactly the same as the drainage that was coming from Rees' face.  Hmm ... I have my suspicions!!  Again, the doctor, at this point, is not overly concerned and even joked that Rees has been here so long now that he's going through puberty and it's just a "ZIT!"  I can assure you that I am keeping a very close eye on it!

Rees has some really great nurses and we are very happy about that.  It definitely helps to make our stay more tolerable.  His evening nurse has really gone the distance to soften Rees up, to help break down the barrier he puts up when she comes in to do her assessment.  They are now on very friendly terms and she has been teaching him how to operate the IV pump.  No Kidding!  He is actually starting to remember some of the steps and knows which buttons to push each time she has to administer a flush or his next round of antibiotics.  

Another one of his nurses has become his very best buddy and when he hears her voice, he simply puts out his hand, reaching for her to take it.  We're not sure exactly what it was, maybe just the sound of her voice, but she is the nurse he is most fond of and he will even perform better for her, such as drink extra fluids (which he's been slow to do), follow all her commands and even open his eyes for her (which he does not like to do for anyone else).  She even brought him some toys and played with him for a while.

By the way, Rees' face looks even better today and we hope and pray that this continues!!!

Jonah had his Pre-Surgical appointment with the surgeon today and we were able to discuss his up-coming surgery, which is scheduled for March 23.  They are leaning more towards the jaw distractor devices being placed on the outside of Jonah's face as opposed to placing them internally.  While this may be unsightly to some, there are benefits to the device being external that cannot be achieved if it is placed internally.

Then Baba took Jonah to see the Orthodonist as today was the first appointment of three over the next three weeks that will prepare Jonah for the surgery.  Today, they placed Jonah's spacers and took impressions.  He did not mind showing me at all so I figured I better take a photo.

The poor guy, he has been so anxous for his treatments and medical care to begin because he wants balloons and toys and balloons and presents and balloons and treats ... and did I say balloons??

However maybe he's going to change his mind because he kept pointing to his mouth this evening saying, "Owie!"  He looked confused and we could tell that it didn't feel so good.  Hoping the Tylenol kicked in by the time he got home tonight.  

So, while it seems that the enemy just keeps coming at us ... I am just reminding myself of the following Bible verse:

The Lord himself will go before you. He will be with you; he will not leave you or forget you. Don’t be afraid and don’t worry.” ~Deuteronomy 31:8

I don't know, friends, but it sure seems like we just cannot get a break. The nurse came in this morning and said that a lab result for a culture that was taken during the surgery last week came in today and it is positive for MRSA!! Seriously ... what else?? PLEASE JUST KEEP PRAYING!! I'm told that they aren't going to change anything at this point and I will talk to the doctor in a couple hours when I take Jonah over to see him. (in the meantime, I'll be googling ... ) ... seriously wondering if all the trouble we've been having was actually caused by MRSA!  

More Rees Follow-Up ... On the Cusp of Starting Jonah's Treatment

Hello Everyone!  

Are you still here?  ... We sure are!

I'll try to make this update a bit more brief than most of my other ones.  

So, remember in the previous post we talked about the photo below and that one of the doctors attempted to aspirate the "bubble" with no luck at retrieving any of the fluid.

Well, from that point on, the "bubble" released all its fluid in less than 24 hours ... SCARY AND EXCITING at the same time! 

This is what our counter looked like when first entering the room!  We have had a plethora of supplies to tend to the wound!

 

And NOW take a look!!

THIS IS HUGE FRIENDS!!

This is progress ... we're so afraid to say that ... but this is the best we have seen Rees' skin look since the first surgery nearly six weeks ago!

THANK-YOU JESUS!!  PRAISING THE LORD!!

We are truly praying that this positive progress continues.  

There are a few spots along the incision that we are watching closely but at the moment, things seem to be improving.

We've had plenty of visitors and playtime with Baba!  That is so important!

Our Pastor Bob and his wife, Becky, came to visit and they brought Rees a cool set of flashcards about BUGS!  He loves them and will actually engage in conversation with them about the various bugs.  He even showed one of the doctors who came in to check on him.

This evening Rees' Grandma and Grandpa Prendergast came to visit again and this time they brought a lovely quilted blanket made especially for Rees from the Prayer Shawl Group at their church.  This is such a special gift and Rees really liked it and wanted it on his bed.

And then Rees wanted to take a photo of me ... just so you know I'm still here.  

Oh, and you don't have to tell me ... I know I look gorgeous!  Hahaha!!!

So, here's the actual update: While there seems to be improvement with Rees, not a lot else is going to be changing any time in the immediate future ... meaning there's no word of us going home.  Now, as disappointing as this is on the one hand, it is also understandable and a relief to know that while we are still watching and waiting to see what Rees's skin and tissue is going to do, we are HERE ... at the hospital ... and as often as we have run into complications, we are A-OK with being here for a bit ... just in case.  Tomorrow, the lumbar drain may be clamped to stop the CSF from draining.  They will not remove the drain just yet as they want to see if clamping it off causes any sort of changes in Rees' face.  While the neurosurgeons are almost 100% certain that there is not a CSF leak affecting Rees' facial healing, the Plastic Surgeon is not convinced.  So, the extra cautious route is being taken and after everything we have gone through with Rees thus far, this route works for us.

Now, while we continue dealing with Rees and his healing, Jonah is about to start his treatment plan.  In fact, tomorrow, he will see the Craniofacial team and also the Orthodontist who will begin the first steps in his care.  We expect to learn much more about the upcoming steps and the surgical procedure itself.

He has been doing really well despite the current disruption in our home and family routine.  He enjoys going to school as much as he enjoys being at home with all of us.  His understanding of and attempts to speak English have come so far.  He understands very well and to the best of his ability he can speak conversational English.  We understand him best because we are used to the way that he makes his word sounds; some he is able to do very well and others are very garbled because of his mouth's inability to form certain letters and letter combinations.

Jonah seems to really enjoy the Arts!  Granted, he isn't able to function yet in a reading or mathematical capacity, but, he really puts forth a lot of effort in doing things like painting, cutting, glueing, coloring, etc ... 

We have been fortunate that his teacher takes photos of many class activities so we have several photos of Jonah's participation.  So, enjoy these photos and stay tuned for the next post, which is sure to be full of more progress and new information.

Latest Update on Rees (Post-Surgery #4)

Sometimes it seems like so much happens in a short amount of time and sometimes very little happens.  Well, since my last update, various things have happened but I also realized that there were a few things that I hadn't shared in previous posts.  

Truly, I have gone to both ends of the spectrum (of emotions) in the last week (MONTH) so then I sometimes share too much and sometimes maybe too little.  The posting is for benefit of keeping our readers up-to-date but also for documentation purposes so I usually like to be thorough (bet you couldn't guess that about me ... :=)  

Anyway, so here's what has been happening here.  Over the last few days, we've had some visitors each day.  Visitors are GREAT!  Having other people here helps to pass the time and also allows us to share what's going on (instead of keeping it all in).  

Grandma and Grandpa Prendergast came on Tuesday while Rees was still in surgery.  They brought us some lunch and snacks.  On Wednesday, we were visited by Pam and Bill, dear friends ... who brought us some snacks and gifts for Rees.  

Big Brother Ben also came on Wednesday and hung out with his 'lil brother for a while.

On Thursday our wonderful next door neighbor, Joyce, came to visit (but I forgot to take a photo).  Soon, Joyce, we're going to have tea and I'm looking forward to it.

A special co-worker of mine, Diane, who also happens to volunteer at Children's Hospital, also came by on Thursday.  She stayed with Rees for a bit so that Baba and Mama could go out for lunch.  While we were out, that Diane, ... she's so good, she figured out that Rees was trying to ask for his little tablet and then she helped him as he tried to play with only one hand.

Friday, which is today, brought Auntie Jen-Jen and Uncle Dave and they brought him a few "Minion" surprises!  

Rees and Uncle Dave even played together.  Rees would smile and even giggle a little bit.

I'd like to introduce you to "Kevin"! Kevin is the teddy bear in the photo below ... he was the designated hospital buddy (who was previously known as Teddy) for Rees on the day of this most recent surgery. As we drove to the hospital, Rees all of a sudden referred to him as "Kevin" and now that is his name. (this is no doubt because he loves the Minions Movie) 

(I just love this photo!)

Well, "Kevin" has had to go through all the same things Rees is going through ... he got a hospital bracelet and he had to get the "goofy" juice just like Rees did.  Kevin didn't like the way it tasted any more than Rees.  By the faces they made, it is pretty YUCKY stuff!

Kevin's eye is taped, just like Rees!  

He gets to have popsicles and he EVEN has nausea. We're so glad that Rees and Kevin are in this "together".

So, you will recall from my previous post that Rees is basically laying flat and not getting up at all.  This is because he has the lumbar drain and it has made him nauseated to the point of throwing up.  So, on and off, they have been treating the nausea and usually makes him sleep for quite a while.  Yesterday, when we thought the nausea had subsided, Rees was so hungry that he ate three orders of scrambled eggs.  He kept this down and we were thrilled!!  This morning, the nausea started up again and he threw up all the juice he had drank.  This time, though, we did not choose to medicate him and within a couple hours, the nausea had passed and Rees then ate another order of scrambled eggs and then he proceeded to eat most of the croissant I was having with my lunch.  I had to go get another one and he ate half of that one too!  Crazy kid!  

In other (new) developments, during the last night, Rees started to ooze some fluid from the base of the upper incision.  I was asleep and unaware of this ... halleluia ... but I was informed when I woke up.  I was told that Rees was being put on "NPO".  NPO is a medical abbreviation that means nil per os, or nothing by mouth. It means that a patient isn't allowed any food or drink for medical reasons.

So, I was thinking something was wrong and they were anticipating taking Rees back into surgery.  I did find out a bit later that Neurosurgery had come by during the night and that they said they didn't think the fluid looked like CSF.   After I was up with him for a while, the oozing started again.  Oh, I could tell ... here we go again, I thought ... so I asked the nurse if she could get some gauze pads because my assumption was that shortly, more than just a tissue would be needed.   

She very willingly complied and she came back with a pack of 200 gauze pads!   

And it was a good thing because within just ten minutes, the fluid started running out.  This actually alarmed our sweet nurse but we assured her ... "This is what always happens!"  Nonetheless, we were irritated ... very irritated!  The doctors had just been in literally minutes before and, of course, he didn't start the draining until they left.  Well, the nurse had them paged and said she thought they should come back.  

It seemed that there was some irritation on everyone's part ... the surgeons had just scrubbed in for a surgery and it would be a while before anyone could come up.  Well, not too terribly long after, the Plastics Resident and Student came.  And I unloaded ... calmly and kindly ... but I unloaded.  I said that since they were the ones that came, they were the ones to get it.  I shared my frustrations and explained all the steps that had gotten us to this point (that they weren't really unaware of as they have been a part of this the whole time).  We learned from them that the lab results of the fluid that was collected during surgery were returned.  Guess what folks??  The Beta2 came back negative!!  Remember, Beta-2 transferrin is a CSF-specific variant of transferrin and is used as an endogenous marker of CSF leakage.  

So, we were pretty interested in moving on to other measures!!  We had asked on previous occasions as to whether or not the fluid/bubble could be a seroma and/or what might be an indication that it is NOT a seroma.  The Resident did agree that it could be a seroma but that typically seromas do not occur on the face.  I have also read that in most cases the fluid is more clear than bloody looking.  We discussed possibly removing the fluid using a syringe and they said that had been a possibility.  We were grateful to be able to vent our frustrations and to discuss the situation further.

      

The nurse was then contacted and she came in and applied a cream that acts as a local anesthetic and then a clear bandage to keep the cream in place.  The cream would take about 30 minutes to take effect.

The Plastics "Fellow" came next and her plan was to aspirate the bubble of fluid.  We were expecting this to be a piece of cake!  

Well, NOT SO, folks!  Not so!  She pierced the skin and pulled the plunger of the syringe and NOTHING came out.  He did bleed a bit and some fluid came out the skin but ... so, she thought the needle might be too small ... and went to get a larger one (used for thicker fluid?) ... Again, she pierced the skin, pulled the plunger ... and AGAIN NOTHING!

SO STRANGE!  And we've already asked ... there isn't a test they can do to determine WHAT EXACTLY the fluid is, only what it's not.  

A while later, the neurosurgeon came by to see how Rees was doing.  He did say that he's mostly convinced now that the fluid that continues to build up in Rees' face IS NOT cerebral spinal fluid (based on two negative Beta2 tests, the fluid isn't actually coming from the nostrils which is more typical AND the fact that HE COULD NOT FIND A LEAK during the exploration that occurred on 2/9) but at this point he does not want to remove the lumbar drain.  They just want to continue to monitor the situation and it's better to leave it then to remove it and have to do it again, especially since during surgery the fluid looked so similar to CSF (both times).  He did say they are still debating whether or not to inject dye into the spinal fluid which acts as a tracer.  From our perspective, it has at times, appeared that they are spending an awful lot of time attempting to treat something that isn't actually there but from their perspective, they are diligently addressing what could be a very serious and/or catastrophic situation and ultimately ruling it out.    

Regardless, we are still here ... doing the best we can do to deal with this.  Because of the drainage and the attempted needle aspirations, Rees (AND Kevin) now have pressure dressings taped across their faces.  

Have I mentioned lately how amazing this kid is??

After the morning's bout with nausea and vomiting, he went back to being incessantly hungry and cheerful again.  They've already told us we're here for the weekend.  We are all still residing in Uncertainville, located at the intersection of Baffled Boulevard and Unprecedented Avenue.  

And for those of you (and you are many) who have advised, suggested, and/or requested that we seek other professionals and organizations in getting to the bottom of this, ... we have considered this ... even before all of the suggestions.  We want to get to the bottom of this more than anyone.  And we have brought this up over the last few days.  But we also have been affirmed that the teams we have dealing with Rees' case are doing everything they can and are providing the best care possible.  For now, that's all we have and it has to be enough.  God is keeping our boy infection-free and stable for the time being.  Not sure what's happening under the gauze dressing; we'll see tomorrow when the team comes back to see Rees.  Until then, we're hanging in there and we really appreciate all of you who are hanging in there with us.  

Good-Night...God-Bless from all of us.

Family, Friends, Prayer Partners ... 

I know that some of my emails have been choppy; I apologize.  So, I wanted to try to give the best update I can as it is at the moment.  This has been another rough day with things not going as we hoped or planned regarding the 4th surgery our boy, Rees, has had in the last five weeks.

In the last five days, Rees developed a pretty significant hole in the tissue between his eyebrows.  As of yesterday morning, it measured 1/2 inch in diameter and was as deep as it exposed the titanium hardware attached to the nasal bone graft that had been in place.  I don't think some of you'd like to see that photo, but maybe the photo of his skull with the bone graft will give you a good idea.  The hardware that was exposed was the T-shaped one in the photo below (in between the eye sockets).  

The bone graft had to be removed and so what they did was open a small portion of the head incision and they slid the bone under the scalp and the plan is to keep it there 'in waiting" for up to three months while Rees' other issues are taken care of.  They did close the hole and cleaned the area, however, the area kept filling with fluid as they worked.  This lead them to believe that there was, in fact, a CSF leak, as they had thought previously.  So they called in a Neurosurgeon to evaluate and then called us in to consult with us.  

To get right to the point, the neurosurgeon inserted a lumbar drain so that the CSF has somewhere else to go, thus allowing the fluid not to build up in his head and face.  The thought behind this is that then the source of the leak would be able to heal and the tissue behind the surgical incision would be allowed to heal.  Now, here's the "kicker" ... they are still NOT EVEN CERTAIN that the fluid that has been building up is CSF.  Now, the fluid that is draining from his back is definitely CSF because they inserted the tube into his spine to purposefully drain it.  But below is a photo of Rees from last night as he was resting in his bed.

The "bump" in the middle of his incision is basically a wad of skin that was placed two surgeries ago as a defence.  The incision at that area actually has healed and they were able to remove the stitches there.  Above that area and below that area Rees has new stitches where they closed the hole and repaired the skin where the bone was coming through.  

The doctors came in this morning, both the Plastics/Craniofacial team and the Nuerosurgeon, at different times, and they were pleased and stated that he looked great and they think they got to the bottom of it this time.  

I am sorry ... but I am not so confident.  This is so hard because all I do now is wait for the "bad" to happen while I hope that God will heal my sweet boy once and for all!!  Below is a photo that I just took, now fifteen hours later, and that bumpy area is changing color and swelling and the healed incision line is looking like it is being slightly stretched ... JUST.AS.IT.HAS.DONE.BEFORE!!!  I have already expressed my concern and insisted he be looked at again, which is evidence that my patience is wearing thin and frustration is nipping at my heels.  

We need a MIRACLE people.  The doctors have admitted that they are in unknown territory.  They have not had a patient like Rees before.  This is clearly and entirely in God's Hands and I am trying so hard to "wait patiently for Him to ACT."  

I know that there are literally hundreds of people praying for Rees.  This is wonderful and supportive and encouraging to us ... and yet, at the same time, disheartening as it appears that Rees is not improving.  We don't know what God is doing and that is SO HARD.  My devotion today was from two Bible verses, which are as follows:

We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us! ~ 1 Corinthians 13:12 (MSG)

My response is to get down on my knees before the Father, this magnificent Father who parcels out all heaven and earth. I ask him to strengthen you by his Spirit—not a brute strength but a glorious inner strength—that Christ will live in you as you open the door and invite him in. And I ask him that with both feet planted firmly on love, you’ll be able to take in with all followers of Jesus the extravagant dimensions of Christ’s love. Reach out and experience the breadth! Test its length! Plumb the depths! Rise to the heights! Live full lives, full in the fullness of God. ~ Ephesians 3:16-19 (MSG)

Every time I read the verses from these devotions or the verses being sent to us in emails and comments and prayers, I try desperately to cling to them and to pray them and to TRUST and be at PEACE.  When I struggle with this, I feel worse because these WORDS are meant to free the believer, to strengthen the weak, to encourage the suffering ... so then I doubt my own faith.  

I wonder what God's trying to teach me ... and then I scold myself for taking so long to learn it.  This is definitely a roller coaster as I soar with new strength and renewed faith one moment and then plummet to the depths with doubt and discouragement the next.  

LORD, thank-You that Rees has maintained a normal temperature and that infection seems to be kept away.  Thank-You for blessing us with each of our children and protect their hearts, each of them, the BIGS and the LITTLES, that each would find YOU in this situation as we strive to feel your presence.  In the name of JESUS, Your Perfect Son and my Savior, by the POWER of His Precious Saving Blood, Wash over Your beautiful creation, Rees, and HEAL his body.  Your Blood was meant for all, including Rees, and I PRAY to YOU, HOLY GOD, with all my might, from the depths of my soul, that You would Touch Rees and Heal him.  TODAY.  In Jesus' Precious, Holy, Redeeming, Healing Name, ... AMEN.

  

 

Rees is going between sleep and struggling with nausea and vomiting. He seems to become so tired out from the vomiting. He clearly does not feel well. Very disconcerting issue is that the lumbar drain is draining CSF for sure, however, it is still not known if the fluid that has continued to build up in his head and face is actually CSF!! We are helpless in a 'wait-and-see' situation with a multitude of unknowns. LORD, I feel like I'm failing miserably as I "wait patiently for YOU TO ACT."

Rees Update: We have had a turn of events. PLEASE PRAYER WARRIORS - PRAY HARD!! Neurosurgery was called in during Rees' surgery because they are certain that there is a CSF leak (still? ... again? ... unsure?) and they decided the next step is to insert a lumbar drain. This means that Rees will have to be in the hospital for at least a week. LORD, PLEASE HAVE MERCY!!! They did remove his bone graft and have "banked" it under his scalp. Rees is now at higher risk for further infection, including meningitis. PLEASE, PLEASE, PLEASE PRAY AGAINST THIS and FOR REES TO BE HEALED!

We took Rees to the doctor today. The main surgeon was out of the office all last week so he hadn't actually viewed what was going on with Rees' nose "in person". The first thing he said when we removed the gauze covering was, "Oh, that's bad." He feels that the area is all infected, though Rees has been fortunate not to have a fever at all. There is another area that is starting to form a hole about the middle of the incision and the bone is now even more exposed at the bottom of the incision. So, basically, they have to open the whole thing. The plan is to close the hole and remove the damaged skin. They may or may not take out the bone graft. For sure, they will have to take out the hardware that is exposed as it is "contaminated". If they remove the bone, they will re-open a portion of the incision across his head and slide the bone under the scalp. The say they can "bank" it there for up to three months. If they do this, they will likely have to do a skin graft when they attempt to put the bone back as the skin will have shrunk due to scar tissue; then they would use skin from the forehead and this would create more scarring. I told the surgeon that I was afraid that the skin was going to react and build up with fluid again and cause issues after another surgery and he basically said, "you can be afraid of that." He said that he's never had what's happened to Rees happen with another patient. He's doing all the things that he can think of to help Rees heal and it's not happening. Surgery is scheduled for 10:45am tomorrow (2/23) and they are saying that he will have to stay for one night for sure. Rees has been such a brave boy ... a super-duper-trooper! He's been working hard to exercise his 'lazy' eye and he doesn't fight all the gauze and tape that has to be all over his face. He doesn't fully realize what's going on but when he saw me packing a bag to take to the hospital, he said, "NO! Rees-y all done ... go home," which basically means he does not want to have to stay the night. PLEASE LORD, it's in Your Hands ... it's entirely up to You ... in the name of Your Son and my Savior, Jesus Christ, PLEASE heal Rees' tissue/skin. Please BE the Surgeon. BE the Healer. Go before us and with us, we pray ... in Jesus' name ... AMEN.

I did it!  

I actually did it ... it was pretty big but I'm sure it was not pretty ... 

... I HAD A MELT-DOWN!  

 I sure did.  I broke down in tears several times ... 

On Wednesday, I was feeling pretty good and resigned myself from worry and fear and unnecessary stress.  I even posted the below segment in my Facebook group to proclaim to the world (or at least the 83 group members) my rejuvenated faith.  

I think one of my biggest issues lately is that I have been fretting about being off work now for a month (unpaid) with no certain date of returning. And with Jonah's surgery coming up I just gave in to more worry. But that's IT! No more ... I MUST LIVE WHAT I BELIEVE! God provided SO MUCH for us (so much more than we could have anticipated) to bring these two boys home. He's not going to stop providing for us now that we have them home.

Protect me, God,
because I trust in you.
I said to the Lord, “You are my Lord.
Every good thing I have comes from you.” ...
... No, the Lord is all I need.
He takes care of me.
My share in life has been pleasant;
my part has been beautiful.
I praise the Lord because he advises me.
Even at night, I feel his leading. (NCV)
I know the Lord is always with me.
I will not be shaken, for he is right beside me. (NLT)
(Psalm 16:1-2, 5-8)

And then by evening, I started to waver a bit when Rees gushed a large amount of fluid from his incision between his eyes.  Within an hour, we found that he actually had a hole where all the fluid had vacated.  I have to tell you ... this was very scary to me.   

We have been fortunate to be able to communicate via email and/or phone with one of the doctors to provide photo updates and talk about any changes in Rees.  I immediately sent photos to her and also called her cell phone (yes, she actually said I could call her cell phone).  Rees originally was supposed to come back on Friday (today) but she asked us to come in the next day (Thursday/Yesterday).  Of course, I brought him in right away in the morning.  

The doctor removed the gauze we had placed to cover the hole and it had gotten bigger overnight.  And it made me want to be sick!  

She and the nurse had to get a culture of it and clean it out.  Ewe!!  I had to look away every few seconds.  Then she took a picture of it so she could send it to Dr. Denny (who was on vacation this week) for advisement.  In the meantime, she and the nurse took to the task of removing the staples that covered Rees' head ear to ear.  Rees became hysterical!  He screamed so loudly and so terribly, I just did not know what to do.  I tried to hold his hands and comfort him with my words and gently restrain him by wrapping my arms around him and placing my head against his back.  Nothing worked.  By the time they had removed the last staple, I'm not sure who was in worse shape, Rees or me.

They left the room for a few minutes and Rees and I were able to recoup.   

And that's when my bubble was BURST ... that's when the doctor came back in and said that we should come back on Monday to be checked and (then just added subtly) plan to come again on Tuesday to go back to the OR.   

I barely got to our vehicle and the tears were already streaming down my face and when I got home, I sat at my table and I cried some more.  This time I couldn't really hold it in and poor little Rees came over to me and said, "Mama cry..." and he gave me a hug and then kissed me.  

Then later that day, I lost it again ... in front of my husband and all my children, I cried ... really hard.  They all came around me and hugged me and tried to comfort me and tell me it's all going to be okay.  I'm not really sorry that my children saw me this way.  I don't really think it is appropriate or possible, for me at least, to have my children think I'm always so strong and put together.  It's okay to cry ... whether it's them or it's me.  

I never expected any of this.  What has happened over the last month has been ... well, ... the EXACT opposite of what I expected.  After yesterday's visit to the doctor's office, I felt completely defeated.  I felt like I had reached my limit and I just could not take any more.  

But in the last 24 hours, things have changed a lot!!!

The emails and comments and messages that SO MANY of you have sent have been AMAZING and have given me strength and encouragement.  God has shown Himself evident each day this week despite the trials and disappointments.  We have been awe-stricken by the on-going LOVE and SUPPORT and GENEROUS GIFTS from so many very special people.  And while we just want our boy to be restored and we struggle with the process not going as expected and, at times, feeling that God is absent from the situation ... God has shown us with each day that He is with us, that He does love us, and that He will continue to take care of us.  Something made me think to look back to my new devotional (a recent lovely gift from a friend) to the entry for January 20th, the day of Rees' first surgery.  This is what it said:

APPROACH THIS DAY WITH AWARENESS OF WHO IS BOSS.  As you make plans for the day, remember it is I who orchestrates the events of your life.  On days when things go smoothly, according to your plans, you may be unaware of My sovereign Presence.  On days when your plans are thwarted, be on the lookout for Me!  I may be doing something important in your life, something quite different from what you expected.  It is essential at such times to stay in communication with Me, accepting My way as better than yours.  Don't try to figure out what is happening.  Simply trust Me and thank Me in advance for the good that will come out of it all. I know the plans I have for you, and they are good. 

I think if I had read that on the morning of the surgery, I may have become frightened as opposed to comforted or strengthened.  But to read it tonight ... after things have not gone smoothly or how we planned in the last month, I can certainly see that the LORD is doing something, "something quite different from what I expected" and now I am just working towards complete Trust and Thankfulness for the outcome that is sure to be GOOD.  

A few other things that I was thankful for today:

Baba stayed home from work with me to help me monitor and tend to the open wound on Rees' face.  

No FEVER!

The hole did not appear to get any bigger today.

Rees was in a great mood!!

Another Surgery ...

Well, friends, ... I'm beginning to feel like a broken record.  (Could somebody give the player a "kick" so it stops skipping?)  Our boy Rees is going to be having surgery again on Tuesday (2/22).  Yesterday late afternoon, after we were starting to think that his incision was beginning to look better despite the chronic fluid build-up and drainage, the part of the incision between his eyebrows drained a ridiculous amount of fluid and then caved in, causing a hole about the size of a pencil eraser.  

Since then, the hole has increased in size (it is now larger than a pea) and is draining some very "icky" fluid.  Rees is back on antibiotics to hopefully defend against any possible infections.  The hardware that is holding his bone graft is now exposed and will likely prevent the wound from healing.  The incision/wound breakdown is due to "fat necrosis" per the doctors.  "Fat necrosis can be observed when fat cells are destroyed inside the human body."  It does not really make sense to me but clearly this is a problem. The hole will likely increase in size per the doctors, which I am not happy about because I am already sick to my stomach with having to monitor and evaluate it, clean it, and change the dressings.  

They removed the staples on Rees' head today and that, my friends, was nearly impossible to bear as he screamed and cried so violently that I could hardly contain myself.  He is much better now though ... he hardly behaves as though any of this is happening to him.  His face is covered with so much gauze and tape and we're forcing him to use only the eye that is tired and draining with "goop" and tears ... the poor thing ... the only thing I recognize about him is his voice.  

This afternoon I broke down ... I just started sobbing uncontrollably and this little boy who would barely acknowledge my existence for nearly the first three months he was with us came over to me and said, "Mama crying ... " and he gave me a kiss and hugged me.  Of all that we are going through, this is something "good" and I thank the LORD that my boy has come to care about me.  

At this point, I don't know what else to say.  I will try to keep updating ...