Third Filling

We performed the third filling last night. Things went well, other than my husband getting poked with a needle and realizing we ran out of a certain needle we need to extract saline from the bag. The medical supply company is supposed to deliver supplies tomorrow (Monday). Let’s hope they come through since Solana is due for another filling by than.

We originally filled both with 15ml but decided to pull out 5ml from the right expander. This is the side/expander that has had problems from the very beginning and we noticed a small crater like dent in her suture line that has slowly showed up this week so we decided to take it more slowly on this side. We are not sure what it is and it may be nothing, but we would rather be safe than sorry.

The right expander/suture line

                                          Expanders filled to 45ml (left) and 40 ml (right)

Second Filling

On Wednesday April 25, 2012 we performed the second filling into the expanders. My husband and I did it together at home, without incident. We put 15ml into both expanders, so there is now a total of 30ml in both expanders. Our goal is 300ml. Solana watched TV while we did it and said she didn’t feel a thing. I also give her Children’s Tylenol about 30 minutes prior to help with any pain or pressure she might feel. One of the benefits to having external ports are that she never has to feel a needle poking through her skin.

                                                     Expanders with 30 ml in both

Expansion Process Started

Great news! The staples were removed and the doctor said the area looks good and we are ok to start the expansion process. At the appointment they taught us how to fill the expanders (she has external ports taped to her shoulders). We put 15ml into each expander. Our goal is to fill both to 300ml (a little larger than a Coke can) over a 6-8 week timeframe, which is 45ml a week equally 15ml three times a week. 

Thankfully the filling process is quite simple. My husband and I completed it with ease.  The only thing that concerns me is how Solana’s skin will respond to this. The doctor and I both agree that the right side, which has had all the complications, may not fill to our set goal. So, we will be watching this side quite closely. The first expansion went well. We will be adding another 15 ml tomorrow or the next day.   

With 15ml in each expander.

Our First Setback

On her first follow up visit on April 9, 2012 they removed her stitches and we were advised a small part of the incision line did not close and heal. I got this pit in my stomach as soon as I heard this. Already we were being hit with more bad news! The doctor put in three staples in that area in hopes of it closing and healing. I continued to wash both incision lines and the tube portals in the back of her head. I communicated by email with the doctor for the two weeks we waited for our next follow up appointment. Things appeared to be looking well, but her hair started growing and it was hard for me to really see in that area. I felt like I was paralyzed with fear. I would wake up in the middle of the night and not be able to go back to sleep obsessing about what else could possibly go wrong. After several days of this I admitted this was not the way I wanted to live; I was worrying about things that may or may not happen and were not within my control! I have been practicing daily to do the best I can (keeping the areas clean and covered with antibiotic ointment) and surrendering the rest to God.  

The open area.

                                                          The staples.

Implanting The Expanders

On March 29, 2012, Solana had two tissue expanders implanted into her scalp. During the operation they put 20ml of saline into each expander. We were told this is standard practice, that if they are able to start the expansion process during the operation they will, and that it also will let them know immediately if there is any defect or possible problem with the expander. In Solana’s case, some bruising started to occur on the right side, in the same area that had been torn by the self expanding expanders in June. They watched the area closely and the next morning decided to remove all of the saline in hopes the bruising would subside. Thankfully, the bruising did go down after this.

After the tissue expanders were implanted.

 The bruising.

This really concerned me. Having your child go through surgery is scary enough, but when complications start to arise immediately afterwards it can throw you into a panic. I broke down crying to my husband explaining I don’t think I can handle much more of this. To date, Solana had undergone six surgeries and she is only four years old! Not just that, but when your child’s spirit is nowhere to be found it really exasperates the situation. For the record, Solana is out going, energetic, silly and extremely loud, so watching this child in bed who is quiet, lethargic and needy was worrisome. As her personality slowly returned, my spirits would lift. We both also rely heavily on our faith to get us through these situations. We continue to pray and surrender and give our precious daughter to the Lord.

Solana was released the next day.

Dog Bite

Solana was just your average two year old in April 2010. Solana, her older sister Amara, and I all flew to my grandparent’s house in Modesto, CA on April 1, 2010. The following morning, Solana was bit on her front right scalp by one of my grandparents many black Labradors. We have a dog at home, whom Solana is very comfortable with, but these dogs have not been around small children ever. I don’t believe the dog was in any way evil, I simply think the dog may have been startled by Solana and reacted by biting her. Because of her age and where he bit here, he caused significant damage to her scalp, but thank the Lord it is all cosmetic and she did not suffer from any brain damage.  We rushed her to the local ER and she was later care flighted to Shriner’s Children Hospital in Sacramento, CA, where we spent two weeks.

                         Waiting at the airport to board our plane to Sacramento.

They attempted to return the torn skin to her scalp, but it was too badly damaged by the dog/incident. (The skin was kept on ice during her ER visit and flight). A few days later, they grafted some skin from the back of her head, although this skin had no hair follicles, so she was bald in this area. We were advised tissue expanders would be the best option to restore hair to that area.

                                             Original skin returned to scalp.

New grafted skin.

In June 2011, we flew back to Sacramento, where they implanted three self expanding tissue expanders into her scalp. These types of expanders have been used in Europe for years, but were just recently approved for use in the US. The day after they implanted and her head was unbandaged we saw that the expanders were tearing and bruising her skin. The day after the original surgery, Solana went back into surgery to remove one of the expanders. The following day she went into surgery again to remove the other two.  It was immediately evident things were not going to progress well using these expanders. Solana underwent three surgeries in three days and the process was completely unsuccessful. We were advised to wait a minimum of six months, to give her a rest from the hospital, and then we could try using “regular” tissue expanders.

                                 The self expanding expanders (tearing her skin).

Later that year Amara started Kindergarten so traveling to California would not be as easy. We ultimately decided to have the next procedure done locally at Children’s Medical Center in Dallas, TX. This brings us to the current procedure.

Purpose Of This Blog

The reason I started this blog is because when I was researching tissue expanders the only information I could find was product definitions and explanation of the process, but I could find no real information that related closely to Solana’s situation; her age and placement of expander. Most information was in medical journals and involved adults. Some information was helpful, but what I was really looking for was a family’s step by step story that portrayed the raw emotions and intense fear related to this agonizing process.

The sole purpose of this blog is to help any other parents who are going through similar situations and need support and encouragement along the way. My plan is to include several pictures with each post, as in my research, I found pictures to be extremely helpful.

I pray this blog will find you when your heart needs it.