My son who is now 4 1/2 (the half is very important to him) was born with a hemangioma right smack dab in the middle of his forehead. When he was born it was a small faint red dot, but by the first week, it was pretty big, by the end of the first month it was huge.
I wouldn’t say that I was concerned too much, but I felt bad because I knew he would have a lifetime of bullying and people looking at him differently. So I decided to go the route of getting it removed.
My naive self thought that it would be semi – easy. But it wasn’t. The Pediatric Dermatologist treated him with a glaucoma medicine called Timerol. I put it on him daily but I didn’t see any changes. We opted for this route because the other one seemed more invasive. The other medicine was going to be harder on his heart. The goal was that it would stop it from growing larger and would help it to shrink down.
I think it did stop it from growing bigger and eventually the color did fade and it shrank down. I am not sure if it was the medicine that helped or not. Well, we left him “as is” for several years each year, we saw very little changes. We had lots of staring and questions over the years. I coached him with various answers as he asked. He learned to answer some questions that came up and really didn’t seem to notice it to much.
A few times he expressed to me being frustrated that people asked him questions. Most of his frustration came from the kids at school. His school was amazing at helping him to feel confident about “his gift from God”.
But the day at the park when kids around his age were calling him a freak, I knew it was time to look into removing it. He felt sad about the name calling, but didn’t really understand. But my momma heart was sad.
The process started in June
1st Appointment: Pediatrician appointment. They referred us to a dermatologist.
2nd Appointment: Dermatologist referred us to a specialty dermatologist.
Weeks of waiting for the referral. Lots of calls and more waiting.
We went back to the Pediatrician who then referred us to UCSF.
3rd Appointment: UCSF Pediatric Dermatologist referred us to Pediatric Plastic Surgery.
4th Appointment: UCSF Pediatric Plastic Surgeon: Confirmed that they could do the surgery
5th Appointment: Surgery at UCSF
6th Appointment: Follow up appointment at UCSF (6 months since it all began)
Each of his appointments at UCSF was a whole day event. The city is not that far from us, but the traffic is absolutely insane. I tried to make appointments so that traffic would not affect us, but each time it was awful. Knowing this, I wanted to make sure that we stayed overnight for the surgery date.
Our surgery time came quickly. I was expecting it to be in a few months, but they had an opening and called us right away. I was a little caught off guard. I immediately began planning for the day. I signed us up to stay at the Ronald McDonald House and started contacting friends that I knew lived closer to the hospital. I was not having much luck with finding a place to stay and the Ronald McDonald House doesn’t know until the day of the procedure.
I started calling hotels and didn’t find any that had openings or that gave hospital discounts. I wanted to stay two nights so we wouldn’t have to leave too early in the morning and a place to stay after the procedure. I looked at Air B&B and the rates were good, but all the fees added up a lot. I was feeling so stressed, if you know one thing about me, I like to feel secure (I am Enneagram 6), safe and planned. So this was not good for my soul.
I finally called a friend and asked if we could just stay there for the first night. I figured we would be at least 2 hours closer. The day of the surgery was still in the air. I also didn’t have anyone to watch the girls so they were coming with us. We headed to my friend Kelly’s house after the kids got out of school. She and her husband were so sweet to us. We all went to pizza and hung out at their house. She had comfy beds for us, gave the kids ice cream and we talked TPT all night! We had so much fun.
On Tuesday we woke up early, packed the car and headed off to San Francisco. Oh the traffic, I knew it would be bad. I figured for 30 miles it would take 90 minutes. Boy was I wrong. It took us 2 1/2 hours! Oh my goodness the traffic was horrendous. Did I mention the traffic?
We got there a few minutes late, but that was ok, we were there. We got Jay checked in and he was so nervous. You could tell he was scared but trying to be really brave. He had his blankie, big blanket and his puppy. They took us back to Pre-opp and fortunately the girls were able to come with us. He was such a trooper about putting on the gown, he went for a ride in the ride along cars they had, watched a movie and played video games. They really do make it pretty comfy for these kids awaiting surgery. He got to pick the flavor for his anesthesia, watermelon was his pick.
They were a bit behind so we waited for awhile. The girls were getting antsy though. We had all agreed to fast with him and the hunger feeling was starting to affect all of us. The girls started to fight and I questioned again why I had brought them along. But we survived and soon it was time.
I really liked how UCSF runs their program. Once it was our turn, it all moved fast. I had to scrub up (gotta love those outfits), I carried Jay into the operating room, a scary sight for any mom to see, and laid him on the table. They had a heated surface for him to be on. I am glad that they prepped me before as to what would happen because it would have concerned me, had they not done that.
They put the mask on him with the watermelon smell, then the smell got really bad and he started to wobble back and forth and they laid him down on the bed, let me give him a kiss and I walked out. Ooh that was hard to see. I started to tear up a bit but then remembered that my 10 and 8 year old were waiting and I didn’t want them to see me and get scared. So I put my big girl pants on and wiped the tear away and said ok lets get some food.
The girls could sense me being ok with brother gone and we headed to the cafeteria for some lunch. We were starving. They had quite the selection of choices and the food was really good, expensive but good. They definitely took advantage of the I don’t have any food with me and I am here all day type of person and this is what I have to pay.
We had time to eat, use the restroom, I made some calls and time to pick out 2 new stuffed animals for Jay at the gift shop. I got the alert (they alert you throughout the surgery) that he was already done! It was really fast. We headed back up and I got the girls settled into the waiting area and I went back to see Jay in recovery. I let him sleep and he did sleep. While he was sleeping his wound was bleeding. Fortunately, the surgeon came by and put some ice on it and and bandaged it up more. Finally, after an hour they said that I could wake him up. I couldn’t believe how well he did. He was tired, but woke up and I changed him. Then we were done! Just like that.
While I was waiting we had found out that we got into the Ronald McDonald House. I was so happy. It was a huge answer to prayer. I had no idea where would be staying and didn’t want to spend another $200 after I had just spent over $350 already. So we headed down there and they said we couldn’t check in til 8:30 pm! Yikes. Okay…. I later found out that we were taken in as their 1 emergency family for the night, and we were going to be staying in their Great Room and that needed to be open for people til 8:30. But at least we had a place to stay.
We got a snack in the cafeteria and Jay ate so much! I could not believe it. My other kids after anesthesia, I couldn’t get them to even eat ice cream. We went back to the Ronald McDonald house to hangout for a bit and we played some games. It is nice they have an area to do that.
Then we walked to Walgreens which wasn’t far, but I was worried with Jay not feeling well. But he did so good. It started to rain along the way which squashed our plans of playing outside. We got his medicine and he still had so much energy that we walked to the car and got our luggage. We did a lot of walking for a kid who just had surgery.
We then walked back to put our luggage in the Ronald McDonald house. We didn’t have a room yet, but we left it out in good faith that no one would take our stuff. Then we went in search for ice cream. I had promised Jay ice cream for dinner and he did not let me forget or get out of his deal. We found it… in the cafeteria. The kids indulged. Jay deserved it, he was so brave and never shed a tear or complained about the circumstances. The girls deserved it as well. I can’t believe they sat in the waiting room for about 90 minutes without me and they did so well with it. They too were super brave. I was proud of all my crew.
One of the nice things about the Ronald McDonald House is that they provide breakfast and dinner for the families that are staying there. It is all served family style and there are several options. They leave it out for awhile so you can can come between a window of time. The food was really good and we all chowed down. I really appreciated not having to make dinner after a long day or having to find a safe place to eat with the kids. It is hard being at a restaurant and I wasn’t sure how tired that Jay would be.
After dinner, Jay was really tired and to be honest, so was I. There was a movie playing in the main living space and the kids watched that while I sat and knitted for a bit. The whole day was all catching up to me and all I wanted was a nice hot shower and my bed. Neither would be happening that night, but it was coming.
My oldest was restless and begged to leave and walk around but Jay really didn’t want to and I couldn’t blame him. She visited with the staff that worked there (they were so sweet to her) and we worked on her homework.
Once 8:30 hit, the staff said it was time that we could settle into our room. They helped turn the couches into beds which was really cool and I put sheets and blankets on. We closed up the doors and went about our night routine of brushing teeth, pjs and good night prayer. I could not believe how exhausted I was.
Even though I was exhausted I lay there on the bed envisioning Jay going under anesthesia and the look on his face, and seeing him out of recovery, picturing the events of the last few days and feeling Thankful that I have a God that made all these things run smooth for us. There was so much potential of things to go wrong, but it didn’t.
We were woken bright and early to the fire alarms flashing and ringing loudly in our room. I popped up so fast as an announcement came over the loud speaker “Fire Drill for Floor 6!” Are you kidding me! At this time in the morning! Ugh! The kids and I lay down, not quite ready to face the day. Jay had a little blood that had come out of his bandage, but we survived without him bashing it on the bed, which is what I kind of was thinking might happen. He has done it many times before! It was almost time anyway to turn our room back into the open Living space, so we quickly got ourselves ready.
My oldest was a huge help and stripped all the beds and turned them back into couches. We joined the others for breakfast. They had a huge spread out for all the guests. The kids loved picking out their own food and having more hot chocolate.
I watched the rain come down outside the windows and the cars speed by. It was strange sitting there watching the world buzz around on a rainy Wednesday morning. People walking to work, their umbrellas were up and heads ducked down away from the rain. I sat there being incredibly thankful for the opportunity that we were given to stay in this place. I was thankful that we were there for a simple hemangioma and not one of the numerous other things that it could have been.
My oldest came over and pulled on my arm to see the TV, and flooded me with questions of what was happening. I walk over to see President Bush’s funeral on TV. So I embraced the moment, put my arm around her, drank my coffee and answered her hundreds of questions about what we were watching. She has never been to a funeral before, nor seen one on TV. So she had lots of questions.
It was time for us to leave, I was completely exhausted, not feeling well and ready to head home. We lugged all our stuff outside and to the parking garage. The kids were grumpy and tired as well. I was thankful we didn’t hit any traffic on the way home. The easy drive game me time to think, stress and become anxious, this surgery is just the beginning of so much happening in our family right now. I started going through all the days til Christmas and my upcoming surgery and the doctor visits…
The kids were happy to be home, but me not so much. Being away was stressful because we weren’t at home, but being home meant things needed to get done. I had work to do, meals to make, dishes to do, doctor appointments to make and go to, school presentations to attend, and my surgery coming so soon. I started to unpack and broke down.
I had buried all the fears I had of Jay’s surgery, of seeing him hurting and scared, being brave for him and the girls, the stress and fears of finding a place to stay and maybe not having a place to stay, the stress of taking the kids, not wanting to drive in San Francisco, and not knowing how much it would all cost. I had buried it just deep enough, but it still came bubbling out in a flow of tears. I cried all those feelings out. I stood in the shower and balled.
It is hard to stay strong for your kids and not let them see your fears. I talk about my fears with them, but I don’t want them to fear the situation, so I guard them and stay strong.
I am glad the hard part is over. Now is the healing part. He has to go back to San Francisco in a few days to get the steri-strips off, then he will wear a special tape for 3 months.
His wound looks absolutely amazing. The plastic surgeon did such a great job with him. I am happy we went with UCSF, though the drives and stays were brutal on me though.
The Ronald McDonald House was amazing to us and we were so thankful to stay. If you ever want to support them. CLICK HERE Ronald McDonald House Mission Bay for more information.