Five months Post Op

I cannot believe it has been 5 months since her last surgery. At this point, she now has had her expanders out longer than they were in. I still get teary when I think about the procedures she had to go through to get to this point (that’s a lot for 4 year old) , but we are so grateful for it being such a success. Solana is doing well and happier than ever. She doesn't wear bandanas or hats anymore when she leaves the house; she is much more comfortable with herself than before.

Four months Post Op

Thankfully we have had no incidents this past month. The scar area is still red and sometimes changes in shades of redness, which makes me nervous; however we have not seen anything alarming. Thank God. When I look closely at the area you can see blood vessels which is causing the redness that you see (I am assuming, of course). My thought is because the skin is so thin you can see the blood vessels much more easily than with “normal” skin. Either way she is happy and healthy and we are so grateful for this blessing. As long as things progress well we will not see the surgeon again until March 2013.

Three months Post Op

So it has been a little over three months since her surgery and things are looking well. Her scar has healed well, but it has started to spread like the doctor advised might happen. When the expanders are removed and the skin is stitched together the skin naturally wants to pull back into its original place which causes the scar to widen. We are watching the area and will address it later on, if ever. From her last check up with the surgeon everything looks good and he doesn’t even want to discuss options or do any kind of surgery for at least a year. This will give her a break from the hospital and surgery procedures. We are thankful that the “big” surgery is completed and we can discuss possible further options at a later date. We are thankful that she will be able to start school next year and will have some sense of normalcy. Praise God.

 

 

Two Month Post Op

 

 

One month Post Op

So far things are going good for Solana; PRASIE GOD! She got the ok to swim two weeks ago, so she’s been swimming at school and we’ve been taking her to the pool on the weekends – trying to jam pack summer into the last few weeks. One thing we have noticed is that the incision area has been become increasingly pink. We are not sure if this is related to swimming, perhaps it is irritating it. I emailed the Dr. but he is on vacation, so we’ll have to wait for his reply. We don’t have any real concerns right now. She is doing great and her hair is growing in. I worry sometimes that her hair might hide a problem underneath so I check her head every day when we get home. Today she had two little puss pockets that I drained and put hydrogen peroxide on. I’m hoping my diligence will help her once this is really all healed, probably in a few months or so.  

2 ½ Weeks Post Op

On 7/20, Solana had her first post op checkup and the Dr. said Solana looks great. (Thank the Lord!) We were very happy to hear that! We had started to notice her skin changing colors as it heals and the dissolvable stitches start to dissolve. I noticed specifically in an area that looked like it may be puss, but the Dr. checked it out and said it was not – it was just part of the skin. Because it started to increase in the days after our appointment I decided to (once a day) put a small amount of hydrogen peroxide on the area to help keep it clean. For the most part it is all gone now and the stitches have almost dissolved completely in that area. I still keep the stitches moist with Neosporin as the Dr. said this would help the stitches dissolve quicker and to help protect again infection. I will probably stop once all the stitches have come out. I would estimate there are still about 45% of the stitches still in place.

She was upset at me = the reason for the “mean” face

One Week Post Op

It has been a week since her surgery. Things are looking good. The first few days after major surgery is always the scariest, but thank the Lord she has been healing well. She went back to school on Monday and has had some difficulty transitioning, because she had become used to being home with me each day.

There is a small area on the front right side where there is still glue and the Dr. said there was not enough skin to make it there, but they did try and implant some hair follicles there.



We are home now

We were released yesterday, which is great news! All of her vitals were stable and she was eating, drinking and going to the bathroom on her own. Very little fluid was coming out of the drain, so that was removed in the afternoon and we were released shortly after. She was more tired than normal, but some of her personality was starting to come through.

She has ‘would care’ that she doesn’t enjoy too much. We can’t get her head wet for a few more days so we clean it softly with gauze and water and put antibiotic cream on the stitches.

The surgery was a success!

So the surgery happened as scheduled on July 10, 2012. It was amazing how at peace she was about the whole process. They typically give her versed in the pre-op room which causes her to be get “silly” before they put her under anesthesia, but they didn’t even give her anything since she was so calm and at peace with the entire situation. It was a miracle; we are positive it was God’s grace in her heart.

She was in the operating room for 4 hours; those hours felt like forever. We finally met with the doctor around 7pm. He said the surgery went well and Solana did great. However she lost a lot of blood and may possibly need a blood transfusion. This had me extremely worried, but thankfully she did not need one after all. He said they were able to cover all of the area; however there is one small area where there was not enough skin. They attempted to transplant some hair follicles to that area, but we won’t know if they took or not for a while. It looks as if she has a ‘widows-peak’ in one area of her head. He mentioned there was extra skin in some areas and not enough in others, this being one of those. He also explained she has a drain coming out one of holes in the back of her head to collect blood and other fluid. He also said her scalp will not be perfectly curved like before, there are “lumps or dents” because of the trauma that has happened to her head and the numerous surgeries she has undergone. To be honest I didn’t care too much about her appearance at this point, I just wanted to see my child.

Shortly after we were able to see her in the recovery room and I was expecting her to be screaming and upset (like last time) and she was again so calm and at peace. There was no crying or screaming. She was talking and also very tired. Jedi held her for a while in recovery than we were taken to our own room. She slept most of the night, but did have periods where she would wake up and interact with us and eat. We were interrupted periodically through the night by nurses, and I didn’t sleep most of the night, I had such a hard time quieting my mind and not worrying about my precious daughter.  

Even though her surgery was a success, I find that I am still pretty much a nervous wreck until I start to see Solana’s personality “come back.” I just don’t feel right when she is not herself.

Seeing your child in the hospital NEVER gets easier.

In the recovery room

Smiling

Tomorrow is the big day!

We had a small scare today. Solana was not feeling so hot yesterday. She had some minor congestion, little appetite and more tired than normal. When she went to bed she had a low grade fever (99.5 underarm). Thankfully during the night she felt cool and although she had a little congestion this morning, which cleared up almost upon her waking up, she has been her outgoing silly self all day. I advised the doctor of all of this and was not sure if the surgery would be postponed due to “illness.” Her health and safety is our first priority. He confirmed this evening we are still on for tomorrow, but Anesthesiology will have the final say in if they put her under. So, we are preparing and praying for tomorrow.

                                     Left expander is at 327 cc and right expander is at 329 cc

                                                               Downward View

Fifty Sixth Filling

No news to report; just pictures.

(Her mad face)

                                       Left expander is at 322 cc and right expander is at 324 cc

         
                                                                      Downward View

Fifty Fifth Filling

No news to report; just pictures.

Left expander is at 317 cc and right expander is at 319 cc 

                                                                Downward View

Fifty Fourth Filling

We filled both expanders with 5 cc on 7/2/12, but I forgot to take pictures.

[Left expander is at 312 cc and right expander is at 314 cc]

Fifty Third Filling

The expanders will be removed a week from today. We are feeling anxious and excited, while not placing any expectations on the outcome. We trust in the Lord, that what happens is His will and we will all be ok.

Left expander is at 307 cc and the right expander is at 309 cc

                                                                 Downward View

WE MADE IT TO 300 CC!!

Tonight, both expanders are past our goal of 300 cc.

The left expander is at 302 cc and the right is at 304 cc

                                                                     Downward View

Fifty First Filling

The visit with the surgeon yesterday went well. He said everything looks good and we can continue expanding up until her surgery date. He said it was really up to us; basically that he trust our decision on to continue or not. So, we play it by ear and make a decision daily. Today we decided to expand only the right expander again and left the left side alone.

Solana is still in good spirits, just like she has been throughout this whole process. I explained to her that the “balloons” are coming out soon and she is looking forward to the popsicles and ice cream she gets to eat after the surgery.

The left expander is at 297 cc and the right is at 304 cc

Downward View

Fiftieth Filling

Today we decided to only fill the left expander, for a couple of reasons. The skin around the expanders is clearly becoming thinner and has us a little concerned. Solana was standing by a window yesterday and the sun was shining through and we could see the expanders; they appeared to glow red. It was rather strange to see.

The great news is that the right expander made it to 300 cc, which to be honest I was not sure would happen. Praise God. Because the left expander is still behind “goal” we decided to fill that one this evening to help close the gap between the two. We have a doctor’s appointment tomorrow, so I will discuss our concerns about the thinning with the surgeon and see what he says. It may be that we stop filling and just wait for the surgery date or we will continue filling.

Left expander is at 292 cc and right expander is at 304 cc

Downward View

Forty Ninth Filling

No news to report; just pictures.

Left expander is at 287 cc and right expander is at 304 cc

                                                                         Downward View

Forty Eighth Filling

No news to report; just pictures.

                                     Left expander is at 282 cc and right expander is at 299 cc

Downward View

 

Forty Seventh Filling

No news to report; just pictures.

                                     Left expander is at 277 cc and right expander is at 294 cc

                                                              Downward View

Forty Sixth Filling

No news to report; just pictures.

                                         Left expander is at 272 cc and right expander is at 289 cc

                                                                        Downward View