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