Two weeks. We leave again for Chicago two weeks from tomorrow. My next surgery is two weeks from this Thursday, which happens to be Thanksgiving. And we return two weeks before Christmas. Yes, it's going to be a busy holiday season!
It has been a wonderful few months since my last surgery, especially since I was able to play as a boy should be allowed to without regard for germs in disguise. But it's time to start again, and we are gearing up.
My pre-op appointment was held this morning and everything seems to be fine, except that I am at the tail-end of a cold (we hope!). My doctor gave mom a script in case I don't clear up by the end of this week. But everything else is looking good.
About a month ago, Dr. Bauer asked mom for some updated pictures of me so he could begin planning this next round of expansion. All of us are still on board, albeit cautiously, with Dr. B placing 4 expanders for this next round. That sounds like a lot to handle, and it probably will be at the beginning. But we know, from experience, that jumping in feet first to these difficult situations is the only way to do it. I'm sure we will all adjust in time, and I only have to live with them for 12 weeks anyway. If things go well -- if I get through this round sans infection, if my skin stretches well, and if I don't get sick too many times during expansion (requiring us to skip injections), this could very well be the last round of expanders. We tread lightly, and don't have our hopes up too much, but it is a possibility that we pray for.
So, please think of me on December 8th, as I undergo this 5th surgery, and help us to pray for an infection-free and successful round of surgeries. As always, we will keep everyone updated. God bless.
Monday, November 21, 2011
Wednesday, September 7, 2011
Round "1" is Officially Over
It's done. I have made it from expander insertion to expansion to removal to healed. Officially, this wasn't round #1, but it was the first successful round. And it's over.
Yesterday, 4 weeks and 5 days after my removal surgery, the last of my wounds finally showed us that it had healed. There is nothing left to do except to sit back and watch the scars begin to fade. I am now gauze-free, ace wrap-free and worry-free for the next two months! Surgery #5 is still three months away, but the germ consciousness will begin long before we leave. Until then, we will savor the successes that we achieved in this round, and thank God for the gift that He has given me. See for yourselves...
Over the last weekend, we celebrated this accomplishment and beat the scorching Phoenix heat by taking an impromptu trip to San Diego. It was wonderful and we all had a great time. It was just what we needed to wash away the last 4 months and re-energize the family.
Yesterday, 4 weeks and 5 days after my removal surgery, the last of my wounds finally showed us that it had healed. There is nothing left to do except to sit back and watch the scars begin to fade. I am now gauze-free, ace wrap-free and worry-free for the next two months! Surgery #5 is still three months away, but the germ consciousness will begin long before we leave. Until then, we will savor the successes that we achieved in this round, and thank God for the gift that He has given me. See for yourselves...
 |
Sis (below) and me (above) hanging out in Old Town |
 |
| No sibling rivalry here! |
 |
| I love to play "upside down Josh"! |
 |
| Checking things out |
 |
| First time at the beach. Whoa, what is this stuff??? |
 |
| Well, whatever it is, it's hard to walk on! |
 |
| Wooo, this water is ice cold!!! |
 |
| My first carousel ride. Sort of. I didn't want to actually "ride" so mom just held me! |
 |
| My first ferry boat ride! |
 |
| A happy boy! |
 |
| Flying a kite at Seaport Village |
 |
| Man, this trip tuckered me out! |
Monday, August 22, 2011
Healing Power
Yes, it's true. I am healing. And healing nicely.
When I last updated, my parents had noticed that my incision had opened, and they were worried about signs of infection. Well, to tell the truth, it got worse before it got better. A lot worse. But the good news is that we are now in the upswing of "better".
A few days after the first little opening was discovered, a much larger opening appeared. It was in the center of the back incision right under all the goop! Mom was given instructions by Dr. Bauer's office to begin a new dressing routine of applying a wet-to-dry dressing three times a day. This was intended to clean off the goop and help the new tissue to develop. And, as usual, they were right. The goop began to come off... but then mom and dad saw that my incision hadn't just split -- it had widened. I had a hole in my back! And a good sized one. We never actually measured it, but it seemed to be about a half-inch or so wide.
While that sounds pretty awful, it really wasn't that bad. It looked bad, but it wasn't open to the inside of my body like the opening that occurred with my first surgery. So it didn't need to be re-stitched, which was a blessing. Dr. Bauer and Mim assured us that if we continued the wet-to-dry dressings the area would heal, and they were right. Well, I don't want to get ahead of myself -- it hasn't healed yet. But it is getting there. Mom and dad have been on top of the triple dressings for a week and have seen a lot of improvement. So maybe in another week, we can say goodbye to the ACE wraps. Man, I am getting tired of those (not to mention they don't make the 113 degree temperatures any easier). Oh, and I am happy to report that the first little area that opened has healed up just fine.
I also got my sutures out today!! This was not fun. We estimated about a hundred or so stitches that had to come out, and it ended up taking over an hour to get them all. It was pretty predictable that it would be a difficult appointment, so mom arranged for Dr. Price's office to give me an anti-anxiety medication before we got started. It's hard to say if it helped, but I was calm for about the first half of the removal. The second half was rough, but that was probably a combination of me being tired of the restraint, the effects of the medication, and the pain caused by the removal itself. And it did take a long time for the medication to wear off, during which I had some negative side-effects, so I'm not sure if we'll try that again. But hey, it was worth a shot.
So there it is. We are very happy with how this is coming along. Before we know it, all the redness and irritation will be gone and I will be left with nothing but a thin scar line. What a miracle.
When I last updated, my parents had noticed that my incision had opened, and they were worried about signs of infection. Well, to tell the truth, it got worse before it got better. A lot worse. But the good news is that we are now in the upswing of "better".
A few days after the first little opening was discovered, a much larger opening appeared. It was in the center of the back incision right under all the goop! Mom was given instructions by Dr. Bauer's office to begin a new dressing routine of applying a wet-to-dry dressing three times a day. This was intended to clean off the goop and help the new tissue to develop. And, as usual, they were right. The goop began to come off... but then mom and dad saw that my incision hadn't just split -- it had widened. I had a hole in my back! And a good sized one. We never actually measured it, but it seemed to be about a half-inch or so wide.
While that sounds pretty awful, it really wasn't that bad. It looked bad, but it wasn't open to the inside of my body like the opening that occurred with my first surgery. So it didn't need to be re-stitched, which was a blessing. Dr. Bauer and Mim assured us that if we continued the wet-to-dry dressings the area would heal, and they were right. Well, I don't want to get ahead of myself -- it hasn't healed yet. But it is getting there. Mom and dad have been on top of the triple dressings for a week and have seen a lot of improvement. So maybe in another week, we can say goodbye to the ACE wraps. Man, I am getting tired of those (not to mention they don't make the 113 degree temperatures any easier). Oh, and I am happy to report that the first little area that opened has healed up just fine.
 |
| August 14 |
 |
| August 17 (a clearer picture of how the stitches had entirely unraveled) |
 |
| August 21 |
So there it is. We are very happy with how this is coming along. Before we know it, all the redness and irritation will be gone and I will be left with nothing but a thin scar line. What a miracle.
Thursday, August 11, 2011
Trouble is Lurking
There is something familiar going on. Something we don't like. Not at all.
As usual, we went in to Dr. B's office for one last check up before coming home on Monday. At that time, we all noticed that the areas of new skin that link up to the nevus were reddening, and there was now some discharge coming from one of the reddened areas. Mim and Susan told us that the skin was stressed, but that this was normal. They warned that the incision may even open up, but if it does, not to worry. There are stitches above the skin and stitches below the skin, so it will heal -- one way or another. Another little surprise we got was that one of my drain tubes wasn't working, so they pulled it early. Although there was still a lot of fluid, they hoped the other drain would get it.
Now we are home, and mom and dad are doing all the inspecting themselves. Pretty quickly, mom noticed that the other drain tube wasn't working either. She got the blessing to pull it, so now I get to be drain-free a little early. That's not so bad except there is still a lot of fluid that has to find it's way somewhere. It may leak out the incision, or it may re-absorb into the body. It will resolve itself, we hear. It will just take time.
Drain-free also means I can be bathed again. As soon as she got the go-ahead, mom unwrapped me for a bath... and then that's when she saw it. The incision has opened. This unwanted familiarity comes from the recollection of what my incision looked like when it was infected back at the time of my first surgery... back when we had to entirely ditch an expansion. The areas look (at least to our untrained eyes) exactly the same -- red, goopy, and just all-around bad. And there is another coincidence -- the incision opened up on Post-Op Day 6 both times.
However, there are some big differences, for which we are grateful. 1) This is happening on expander removal rather than insertion. There is no foreign body distracting my immune system which will help me to heal. 2) Although it looks bad, it is not likely infected. Mom and dad will watch my behavior and temperature closely for signs of infection, but for now, no one is concerned about this. 3) Dr. Bauer assures us this is all normal, and that the incisions will heal.
Overall, I am doing great. If you didn't see this, you would never know I'd had surgery one week ago today. I am feeling good - and ready to run around as soon as I am allowed. But for now, I am on restricted activity, and have to be bandaged up for another 2 weeks or so. Once my stitches are removed in another 1 1/2 weeks, we'll all feel a bit better. We'll keep you all posted on my progress.
As usual, we went in to Dr. B's office for one last check up before coming home on Monday. At that time, we all noticed that the areas of new skin that link up to the nevus were reddening, and there was now some discharge coming from one of the reddened areas. Mim and Susan told us that the skin was stressed, but that this was normal. They warned that the incision may even open up, but if it does, not to worry. There are stitches above the skin and stitches below the skin, so it will heal -- one way or another. Another little surprise we got was that one of my drain tubes wasn't working, so they pulled it early. Although there was still a lot of fluid, they hoped the other drain would get it.
Now we are home, and mom and dad are doing all the inspecting themselves. Pretty quickly, mom noticed that the other drain tube wasn't working either. She got the blessing to pull it, so now I get to be drain-free a little early. That's not so bad except there is still a lot of fluid that has to find it's way somewhere. It may leak out the incision, or it may re-absorb into the body. It will resolve itself, we hear. It will just take time.
Drain-free also means I can be bathed again. As soon as she got the go-ahead, mom unwrapped me for a bath... and then that's when she saw it. The incision has opened. This unwanted familiarity comes from the recollection of what my incision looked like when it was infected back at the time of my first surgery... back when we had to entirely ditch an expansion. The areas look (at least to our untrained eyes) exactly the same -- red, goopy, and just all-around bad. And there is another coincidence -- the incision opened up on Post-Op Day 6 both times.
 |
| The redness is obvious, the discharge is mostly concentrated at the point in the middle, and the incision has opened just to the right of that point. It is a small opening and probably can't be seen in this photo. |
Overall, I am doing great. If you didn't see this, you would never know I'd had surgery one week ago today. I am feeling good - and ready to run around as soon as I am allowed. But for now, I am on restricted activity, and have to be bandaged up for another 2 weeks or so. Once my stitches are removed in another 1 1/2 weeks, we'll all feel a bit better. We'll keep you all posted on my progress.
Monday, August 8, 2011
The More the Merrier
That 'ol saying "The More the Merrier" has never been truer. When we scheduled surgery #4 for August 4, we were placed on the same day as our nevus superhero and idol, Sully. That alone was something for us to look forward to. But then there was another. And another. In the end, we were able to share our surgery experience with SIX other families.
Of course, the surgeries weren't all on the same day, but they were all within a few days of each other. This gave us an idea: let's all stay at the same hotel! And then we had an even better idea: lets have a party!!
So party we did. On the Sunday evening of our stay, our spectacular hotel (which was new to us, but will from now on be the go-to for our surgery trips) allowed us to hold a party in their dining area. And to make it an even better experience, we were also graced with the presence four other nevus families who live in Illinois, Kristi (Dr. Bauer's office manager), and Dr. Bauer himself! Like I said, the more the merrier. And everybody had a fabulous time.
I'm sad to say that we are pretty much on a different surgical schedule than our friends from now on, and it is unlikely we will have another trip with so much wonderful company. But we are grateful to have had them with us this last time. We will definitely miss everyone, but we captured the moments of this trip as often as we could, and have a lot of photos to remind us how blessed we really are as a part of this Nevus Family.
Of course, the surgeries weren't all on the same day, but they were all within a few days of each other. This gave us an idea: let's all stay at the same hotel! And then we had an even better idea: lets have a party!!
So party we did. On the Sunday evening of our stay, our spectacular hotel (which was new to us, but will from now on be the go-to for our surgery trips) allowed us to hold a party in their dining area. And to make it an even better experience, we were also graced with the presence four other nevus families who live in Illinois, Kristi (Dr. Bauer's office manager), and Dr. Bauer himself! Like I said, the more the merrier. And everybody had a fabulous time.
I'm sad to say that we are pretty much on a different surgical schedule than our friends from now on, and it is unlikely we will have another trip with so much wonderful company. But we are grateful to have had them with us this last time. We will definitely miss everyone, but we captured the moments of this trip as often as we could, and have a lot of photos to remind us how blessed we really are as a part of this Nevus Family.
 |
| Left to right, top to bottom: Dr. Bauer; Eric, Cherry and Ceci (Hong Kong), The Kings (IL), Katie and Daddy, Sylvia (IL), The Burmeisters (IL), The O'Bryans (MO), The Carraro's (Canada), Reid's daddy, Merilee and Brooklyn (MT), Reid and his mommy (IA), Zac and his mommy (AZ), me and my mommy, Sully and his mommy (SD) and Brookie's daddy and sis (MT) |
 |
| The Core My mommy, Merilee (Brookie's), Beth (Sully's), and Amie (Zac's) |
 |
| Hey dude, how ya feeling? Me? I'm ready to go! |
 |
| Me |
 |
| Zac |
 |
| My sis and Brookie |
 |
| Hey, why is it raining? We are supposed to be playing outside! |
 |
| Reid (IA) |
 |
| Mama, I want you! Kristi, on the other hand is happy and beautiful! |
 |
| It's ok, little bro, I've got ya. |
 |
| Michael, one of our faves at the hotel |
 |
| Sully and his mommy, holding the piece of AZ we brought him! |
 |
| Katie and Zoie (Zac's sis), having fun at the hotel |
 |
| Zac and me, shootin' the bull |
 |
| Katie and Callie (Brooklyn's sis), after their makeovers at Glamour Girlz! |
 |
| Overall, this was a great family trip... uh, minus the surgery |
Saturday, August 6, 2011
Whew, That Was a Big One!
Here we are again, in the great city of Chicago. The weather is actually kind of nice to us Phoenicians, despite temperatures that are high for the folks living here, and we are enjoying our visit. We rolled in Wednesday afternoon, and Thursday morning at 6 a.m. I was back at Highland Park Hospital. The routine was the usual, except that they also gave me a new medicine before taking me back. The nurse told us that it was an anti-anxiety med and that they typically give it to children over the age of one. It was a good idea, because mom and dad could tell that I recognized the hospital and figured something was amiss. It turned out that this med - Versed - is a little wonder drug that produces effects along the lines of being stoned. It did the job it was supposed to for me, and gave mom and dad a few laughs at the same time.
Mom and dad did not have any particular hopes for the results of this surgery, because they were just uncertain how it would turn out. My surgery lasted about 2 hours or so, and when Dr. Bauer came out to report, he advised that everything had gone well overall. He explained that the flap which had not expanded very well did not stretch as far as he had hoped, but nonetheless, he was able to remove more than half of the remaining nevus! That alone was great news.
To put things in perspective, he took out a pen and drew a picture on the pant leg of his scrubs. He drew what looked like a "W" shape on the picture of my body, telling mom and dad that the remaining nevus is in the center of my back, off to the sides, and from the bottom down. He was unable to do any "advancing" (manual manipulation, stretching and removal) from below this time as he had originally intended because of the way the skin was behaving. As a result, the next expansion will require FOUR expanders -- 2 in my back and 2 in my legs. Oh boy.
Although I was very uncomfortable when I first came out of surgery, our stay at the hospital was rather short-lived because I perked up by the afternoon and we were discharged. I had a dose of Tylenol 3 around 5 p.m. and then off we went. As usual, I got into the car seat without fussing, and by evening time, I was able to sleep in my own bed. I even slept for a 9-hour stretch without waking for pain meds. Yup, I'm a champ!
Yesterday, we went in to Dr. Bauer's office to actually see the results for the first time. Wow. Just wow. First, mom and dad were a bit overwhelmed by the length and number of the multi-directional stitches all over my backside. But getting past that, they were truly amazed at how much Dr. B did remove. It was more than they had imagined based on his description in the hospital waiting room. They also saw that he was able to remove two troublesome satellites, so that was a bonus they didn't expect. They were also surprised that my back was kind of lumpy, but Mim was not concerned and said it should level out once the swelling and fluid goes down. She was very happy with the condition of the new skin and said everything looks simply fantastic.
Now, I know you're all wondering, so here are some before and after pictures. They are graphic, but this is me in all my glory right now. It looks terribly painful, but I assure you I am doing great despite these traumatic changes to my body just 2 days ago. The stitches will be removed 2 weeks from Monday, and we know from experience that the scars will probably be thin and light.
Now, it's time to RELAX for a little while. I'm going to take advantage of the next few months and play like a one-year-old should play. Mom and dad can actually forget about germs and bacteria and falling and just let me be a kid. Around the beginning of November, we will start quarantining again because my next surgeries are scheduled for December 8 and March 1. We pray that this will be my last round of expansion, and that I don't need any additional surgeries.
I will post updates from time to time on my healing progress between now and then. Please help me pray that my recovery goes well and that infection doesn't occur. We are taken aback, just a little, realizing that we have actually done a full expansion and that we are seeing so much progress. This is amazing. This is surreal. This is a gift for which we are entirely grateful.
 |
| Not too happy about being back at the hospital. |
 |
| A little better... |
 |
| "Super Josh" |
To put things in perspective, he took out a pen and drew a picture on the pant leg of his scrubs. He drew what looked like a "W" shape on the picture of my body, telling mom and dad that the remaining nevus is in the center of my back, off to the sides, and from the bottom down. He was unable to do any "advancing" (manual manipulation, stretching and removal) from below this time as he had originally intended because of the way the skin was behaving. As a result, the next expansion will require FOUR expanders -- 2 in my back and 2 in my legs. Oh boy.
Although I was very uncomfortable when I first came out of surgery, our stay at the hospital was rather short-lived because I perked up by the afternoon and we were discharged. I had a dose of Tylenol 3 around 5 p.m. and then off we went. As usual, I got into the car seat without fussing, and by evening time, I was able to sleep in my own bed. I even slept for a 9-hour stretch without waking for pain meds. Yup, I'm a champ!
 |
| Feeding myself in recovery |
 |
| I may be a superhero, but I still gotta show my true colors now and then. |
Now, I know you're all wondering, so here are some before and after pictures. They are graphic, but this is me in all my glory right now. It looks terribly painful, but I assure you I am doing great despite these traumatic changes to my body just 2 days ago. The stitches will be removed 2 weeks from Monday, and we know from experience that the scars will probably be thin and light.
 |
| December, 2010, just before the very first surgery |
 |
| July, 2011, just before this surgery |
 |
| August 5, 2011 |
 |
| August 5, 2011 |
 |
| August 5, 2011 |
I will post updates from time to time on my healing progress between now and then. Please help me pray that my recovery goes well and that infection doesn't occur. We are taken aback, just a little, realizing that we have actually done a full expansion and that we are seeing so much progress. This is amazing. This is surreal. This is a gift for which we are entirely grateful.
Subscribe to:
Posts (Atom)