Day 3 Post Surgery

Yesterday started off well. Charlie ate a good breakfast and was much happier. We started him on his antibiotic, Bactrim, to prevent post-operative infection. We hadn't given it to him on Friday because we was so miserable. After we gave him his first dose he stopped eating. At the time I didn't think much of it considering he had just had surgery. He had one episode where I thought he vomited and swallowed it but I wasn't sure. He refused lunch and dinner yesterday. Last night he started having diarrhea and around 11pm he started vomiting. After an hour or so I called our local advice nurse because he was due for a dose of pain meds and couldn't have them because he was vomiting. So between being in pain, being nauseous and tired, he was miserable. The advice nurse told us to call the surgeon. He said he wanted us to take him back to ER for IV fluids and anti-nausea meds.

So around 2am my mom and I arrived at the ER. it was almost two hours before they called us back. It was horrible. Once back there they have him some Zofran for the nausea and then prepped his arm and hand with Emla cream in case he did need an IV. After that we were essentially ignored by the nurses and docs. By 6:00am we just wanted to leave. So they gave us a prescription for Zofran and we left.

The rest of the day has been pretty uneventful. He is waking up from naps really upset and seems to be in pain but we are managing it with Tylenol and Ibuprofen. He has been eating a little most of the day and then tonight we gave him a piece of pizza which he DEVOURED!

The one complication we are still having is diarrhea. It is worse than yesterday and really bad. I think it's a result of his stomach still being upset from yesterday.

Changing his diapers is actually one of the worst parts. When we lay him on his back we try and put his head on the place without an expander but he has expanders almost all around the back. So he freezes when we lay him down like he's afraid to move because it hurts. He cries and moves his little eyes but won't move his head. It's always heartbreaking. I've tried doing it standing up but with the diarrhea it's impossible.

As I've said every update, I'm really hoping for sleep. Last night I didn't get any sleep until about 6:30am this morning and then I've only been able to get in two short naps. I honestly don't think I've ever been this tired in my whole life.

You can see from these pics from last night that his little eye is almost swollen shut.

24 hour post surgery update

So a little update. Last night Charlie started having a lot of trouble breathing. He woke up from a short nap not able to catch his breath. He sounded like he was gasping for air. So after a quick call to the doctor we raced to the ER. There they did a chest X-ray and found that his lungs were clear but he had croup, not viral croup but croup caused by his airway being irritated from the LMA tube and the gas from the anesthesia. So they gave him a steroid called Decadron to help open up his airway. The upside is the steroid should make him feel better overall because of it's anti-inflammatory properties  but the downside is he can't have ibuprofen for 48 hours. While in the ER I asked for another pain medication to help him sleep better (at that point we were only getting 15-20 min naps) but he said the Hydrocordone (Vicodin with Tylenol) was a good pain killer for him. 

So, we headed home around midnight and settled in for the night. I pulled out our bouncy seat and he seemed to sleep a little better in that. Throughout the night he slept for about an hour at a time and then would wake crying for a bit. We did this all night until about 8:00am. At that time he went downstairs and ate a little and played. It was the first time we got smiles out of him and he was content.

Since then he has been taking short naps every hour or so. In general though he is happy when he's awake which is the best improvement since yesterday. I'm still crossing my fingers for a long nap at some point today.

Thanks again everyone for your support. Here are some shots from yesterday. 

Surgery is over and we are home

Sorry for the late update but it's been rough since Charlie woke up. We were called up to the recovery room about 10:30am. When we walked around the curtain I must admit I was shocked. The nurse was rocking him and feeding him glucose water but his incisions were much bigger than I expected and I was surprised to see the swelling and no hair. His whole head was so distorted. When he saw me he immediately broke down into tears. I scooped him up and breastfed him. For the first hour or so I just nursed him and if I moved he cried. So I just let him nurse and sleep. They were giving him morphine because he seemed like he was in a lot of pain.

We met with the surgeon and he said the surgery overall went well. He ended up putting in 3 tissue expanders because the ones he used in the back were smaller so he used 2 back there and one in his forehead. The three lumps on the nevus side are where the ports are. He injected just a small amount of saline for now. We will see him Tues for a post-op appt and then we will start fills in three weeks.

By about 12noon the nurse thought we were okay to go home. If Charlie is awake he is pretty irritable but he is pretty groggy and keeps going in and out of sleep. By 1:00 we were discharged and on the road home. Luckily he slept most of the way home.

Now we are home and resting in bed. I think it's going to be a long couple of days but with the "village" we have I think we can make it through. I just can't believe we have to do this at least 3 more times (maybe more).

WARNING: these are graphic post-op pics

The surgery has started

After getting checked in we were taken back to pre-op where we hung out and played ball with Charlie. He was surprisingly really happy and didn't fuss or cry at all. I know he was hungry and tired but he was a trooper. We met with anesthesia, the nurses and Dr. Hoffman. Charlie got a spiffy gown and socks and I got a "bunny suit" so that I could go into the OR with him while they put him to sleep. Right around 7:30am we were taken back to the OR. They asked me to lay him on the operating table and he immediately started crying. He cried the whole time they had the mask on his face. Next time they said I can hold him while they put him to sleep. Once he was asleep (it only took a minute or so) they had me leave. They are going to start an IV and then the procedure should be about 90 minutes. He plans on placing two expanders, one at the back and one on the side that extends to his forehead. Once he's finished and wakes up they said we should only have to stay an hour or so. He needs to eat and drink a little and then we can go home.

Checking in at the hospital

6:00am: We've just arrived at UCSF Medical Center and are waiting to be admitted. Charlie woke up at 2:00am and couldn't go back to sleep because I couldn't nurse him. So we kept him up until we left at 4:30am and then he slept on the way to the hospital (1.5 hour drive). He seems to be pretty happy for now considering he hasn't eaten since midnight. I'll keep updating as things happen.

3 days until surgery #1

January 17...the day I have had a love/hate relationship with for months now. Part of me cannot wait to get this whole process started so that we can get it done and have this whole nevus thing behind us. But, as the day has gotten closer it is getting harder and harder to not be emotional about the whole thing. Just this morning Kelly said to me "I'm not really nervous about it"  and I agree that I am not nervous. I know he is in very capable hands in a top notch hospital. More than anything I am getting very emotional that I only have 3 more days to see him like this. In 3 days we will start a process that will permanently change how he looks. Eventually his hair line, eyebrows, and even hair color will all be different than it is now. As of today he doesn't have a single scar on his body but we are about to put them all over his head and face. I feel very, very sad about this and really wish it wasn't this way. I wish he had never been born with this damn nevus. But, it was the hand we were dealt and Kelly and I feel strongly that this is the best decision medically and cosmetically for him. We know these procedures will be much easier for him as a baby and in the long run he will be grateful that we made this decision. Even with all my emotions flooding me right now, I know this is the right decision.

So, onto the details. Charlie will be admitted to UCSF Children's Hospital this Friday, January 17 at 5:30am. He is scheduled to go back for surgery at 7:30am. He will have two tissue expanders that will be placed in his head, one on his forehead and one toward the back of his head, both on the non-nevus side. We are told the surgery should be about 2 hours. Once he wakes up from the anesthesia we should only have to stay about two hours assuming everything goes well. So we may be home by the afternoon if we are lucky. I will be keeping this blog and my Facebook page updated with lots of check-ins throughout the day so please look either place if you want to see how things are going.

I've heard that this surgery is the harder of the two in each round because they have to make a little pocket to insert the tissue expander and so there is some seperation if skin, muscle and bone so this surgery is more painful for them. I have also heard that most kids bounce back within a few days.  We have family coming to stay and help with Lily and we hope to just help Charlie in any way be comfortable and happy. Kelly will taking some time off of work to be here as well so I think we will be pretty set. A lot of you have offered to help in any way and I will definitely reach out if needed.

I'm still a little unclear what the process will be after surgery. I believe that Dr. Hoffman likes to wait 3-4 weeks for the incisions to heal before starting to fill them but I've heard that some doctors start one week later. Either way we have 12 weeks of fills in our future where we will drive to UCSF and Dr. Hoffman will slowly fill the issue expanders with saline. We are anticipating our removal surgery for sometime in mid-May.

So please think of Charlie on Friday morning and send him all your best thoughts. We appreciate it and I'll keep you updated as things happen.