Amazing surgery results...

Monday's surgeries were a  big success.  Corban's surgery began shortly after 7:30am and he came out around 10:15am.  Tegan went back about 10:45am and came out around 1:30pm.  Both came out of anesthesia easier than last time.  Corban couldn't sit still in his bed by dinner time and ate a decent dinner.  Tegan, on the other hand, was still not interested in food till about 9pm but they were able to give him oral pain meds and he kept them down, so that is a huge change from last time. 

Dr B was able to remove a nice portion of Corban's back Nevus, down to just below the waistline. And it's amazing how different Corban looks without the cute spot in the middle of his forehead - makes me miss it already. Check out the before and after of this back: 

And without the spot on his forehead:

Dr Bauer did some amazingly, creative work on Tegan.  Tegan's left eyebrow was enveloped with Nevus.  I had briefly wondered what should be done with it, completely remove it, leaving him with no eyebrow or leave the eyebrow with the Nevus under it.  Who knew there was a third option, well Dr B did.  Since Tegan's tissue expander was just above the eyebrow, on his right side, Dr Bauer made the incision in the middle of his right eyebrow (taking it down the middle, the long way) and shifted it over to make him a new left eyebrow - how amazingly, creative is that? I had never even thought of that as a possibility.  God gave Tegan deep eyebrows for a reason!!! I can't wait till everything is healed so it can better be seen.  We are completely amazed and grateful for Dr Bauer and his expertize. Without further ado here is Tegan, before and after:

Wow, look how much he has "grown up" in the past 3 months. The "before" pic was taken in December. He has gone from "baby face" to big boy. 



 We have many stitches that we will have to take out next week.  All of Corban's and some of Tegan's.  Once again, I am thankful for nurses, who go to our church, that are willing to assist us! So appreciative that God know just who to put in our lives.

Expander removal on Monday...

Quick catch up on the past week.  As of the last post, Tegan's expander was beginning to show. By Monday morning, last week, his expander was ready to come out.  With the help of a friend, who is a nurse, the expander was removed. I am so very thankful for her assistance because I'm really not sure I could have done it.  I was also glad I was able to hold and do my best to comfort Tegan during this. I don't think it hurt but probably caused him some discomfort, on top of being scared.  So glad that is over with. Tegan has not been in any pain or discomfort in his neck, since.

This evening, we did the final fills on the boys expanders.  Unfortunately, I won't get any new pictures posted but wanted to post the final fill numbers for those who have been following along, wondering just how full we got them.

We got Tegan's forehead expander filled to 197, our goal was 250. The back of his head we got to 375, our goal was 350 (yay!!!!).

Corban's forehead expander is at 80, our goal was 70 (yay!!!). His left back expander we got to 795 and right back expander to 783, our goal was 700 (YAY YAY YAY).

This coming Monday morning, the boys will each go in for surgery.  Corban is scheduled for 7:30am, we are supposed to be at the hospital at 6am (I'll shoot for 6:30, he's the first surgery, not like we're going to go in any earlier). Tegan is scheduled for 10:40am, he is supposed to be there by 9:15am.  I presume Corban's surgery is projected to take close to 3 hours. I am not sure how long Tegan is scheduled for, probably close to 3 as well. The boys will spend the night in the hospital and we will head home on Tuesday.

Please pray that all goes smoothly.

If you can stomach it - visable bag..

His expander is much more visible today.  I have tied a stretchy gauze around his neck to help support the weight for now.  As you can see, there is only on small piece of skin holding the gap closed.  I don't think it will hold for long. Keeping a close eye on it. Ready to get it out so we can stop worrying about it and he can have full range of movement with his head, once again. 

Will it fall out tomorrow - very likely...

His fragile skin has not been able to withstand the weight of the expander and the skin began to separate in the three weakest places today.  It went from no apparent separation to larger than expected gaps, overnight.  From the looks of it, we will be lucky of the expander doesn't "fall out" tomorrow. 

I am not looking forward to this.  It was hard enough removing the Tegaderm tape, this evening, to clean up the seeping that has come from the openings.  Seeing the expander peeking through just made my heart sink.  I cried right along with Tegan as I slowly peeled the Tegaderm off. It broke my heart that he, we are going through this. 

But with God by our side, we will make it through.  He will heal and we will restart the process again this fall.

Below is a picture of what the area looks like tonight.  It is not for the faint of hearts so if you get queasy, easily, don't look.

The red areas is where the expander is showing through.  As you can see, there is only a small piece of skin left, holding it in. Lord, please grant me the strength to face dealing with this when it is time to remove the expander. This has been the hardest thing to face in this entire, crazy, journey.

Falling expandering in our future? Time will tell....

In keeping it real with the eventful expander journey we've had with Tegan, here is an update.  I emailed Dr B this picture last night stating that I thought a blood vessel had broke open as it appears he has a "blood" bruise.  The email I got back this morning was not the response I was expecting.  He basically stated that the skin is continuing to break down and that he expect it will eventually begin to split open, exposing the expander. GULP.  I contacted his wonderful nurse, Mim, this morning to get a crash course on what to do if this should happen.  She said worse case scenario is it splits to the point that the Tegaderm tape we have on it will not support it and we will remove the expander (or it'll fall out).  If so, we are to gause the area up and wait till surgery time. Since the tissue will have to be removed, it is not usable, it's not an urgent matter.  10 more days till expander removal, hope we can make it without the expander falling out.  Ugh.

There will be no progress made from this expander, they will cut out the dead/dying tissues and sew his neck back up.  We will let him heal for several months and have to give it another go this fall. How disappointing is that?

Another ER visit

We ended up at the ER again, this past week.  This time with Corban.  Thursday morning, after waking up, he kept walking around grabbing at his stomach and whining/crying.  I figured he was having gut pangs, as his routine lately has been a BM mid-morning or so.  He had no fever or other symptoms. He seems to be fine if he was sitting or laying down.  Well the morning came and went, with a normal BM.  Then was lunch time and nap time, in which he was either sitting or laying down; therefore, he seemed to be better.

After his nap, he didn't say a whole lot, we ate dinner and did their expander fills.  Well, after the expander fill, he was grabbing at his stomach again (more to the right side) and would not stop crying - in the midst of trying to play.  That is when I decided I better take him to the clinic to have him checked out.  A young girl from our church had just had her appendix removed the prior week so this concerned me as a possibility.

At the clinic, pressed around on his belly, not really feeling anything abnormal, took a blood draw and did an Xray.  His white count came back within the normal range and nothing noticeable on the Xray.  With the lack of further scanning available there, they referred us on to the ER to have a CT or ultrasound done.  Once again, I made the trek to the hospital, where we spend the next few hours.

At the hospital, the doctor, once again pressed on his stomach. She did not feel anything abnormal and he didn't wince; therefore, she had me stand him up since this is usually when it bothers him.  She wanted to see where he grabbed.  It didn't take long for him to grab at his belly so we noted the area and laid him back down.  She again pressed around on the right side of his belly, then began pressing on the expander, that is when he winced.  She ordered an ultrasound.

The conclusion from the ultrasound was that it appears like the expander may be placing some pressure in the liver/kidney which is likely causing the pains. We were released to go with the understanding that we were to contact the specialist the following morning to find out what he wanted to do. 

After an email to him, that evening, his response the following morning was to alternate Tylenol and Motrin to see if that relieves his discomfort.  He does not think that they are putting pressure on any organs due to how he placed the expander but did say that some kids do tend to become uncomfortable with the large expanders. 

So far, the Motrin and Tylenol seem to calm the majority of his discomfort but it is apparent that he still feels some pain as he grabs at his stomach from time to time, while he plays.  He does not tend to cry out though. Hopefully, that is all the problem is and we can survive the next two weeks, when they will be removed. 

The Lord will see us through, just wish I had some insight as to how it all looks. 

More expander fills

We have completed two.3333 more expander fills on Tegan and one on Corban since my post a week ago.

Tegan is up to 115 cc's in his forehead and 250 cc's in the back of his head. 

Now what is the .3333 for? Well, we had to add a little to his neck expander today due to the expander bag appearing to collapse and ripple from the decreased swelling, which stretched his skin.  Unfortunately, what we added, did not seem to eliminate the ripple.  We are also concerned about a few areas of the Cellulitis areas - not happy with the color.  Currently, we are awaiting response from Dr. B on if this is normal healing or if these are areas we should be concerned about. 

Here is a picture of what his neck expander looks like as of today - forewarning, it looks nasty but only seems to cause him some discomfort when we lubricate it up, to keep it moist.

Our areas of concern are the small purple area below his ear where the ripple is pressing outwards and the larger dark purplish area on the bottom.

Corban's expanders are now up to 60 cc's in forehead and 655 cc's in each of his back expanders.  The kid has really become heavy with all the fluids.  We are about 85% filled on all of his expanders!!!!