updates needed and coming soon

I have had such a busy holiday season and into spring now that I have not been able to update how I would have liked.

We have had a lot happen in our house including another surgery, and I am expecting another baby. (July 2, 2013) I was feeling so sick that I did not feel like using any spare time for blogging. But thankfully I have been feeling great lately and  I have a few posts that I am working on and hopefully I will be able to post them soon.

I hope everyone is doing well and looking forward to spring and summer as much as I am.

Another Syndactyly Blog That Helped Me

I thought it would be good to share a blog that helped me  a lot through this process. Irina is the mom of two very beautiful girls. She shared her families own story of syndactally in a very meaningful way.
Actually her blog inspired my own. I thought that if she helped so many people with her blog then I could maybe help someone with one of my own.

The more information that is easy to find on the syndactyly topic makes it feel like you can get through it. It helped me to read such a personal blog because i knew that they were real people going through what we were going through.

http://syndactyly.wordpress.com

Life after surgery (the first week)

The adjustment to home went better then I expected. It really did help to stay that first night in the hospital and let them worry about all of his pain and vitals and things that I would have been concerned about. By the time we got home it was time for him to take a nap. So we laid him right down. He slept for a long time. For the rest of the night we just tried to play and distract him. It was nice that for the most part his pain meds were helping.
The first few nights he did wake up at night after the bedtime dose of meds had worn off. I would just give him his next dose and hold him in the rocking chair in his room and he would be out with in a few minutes.

Before I had been concerned with trying to keep his pain under control. However, I could tell by the time for a new dose he really needed one. Especially the first few days. I thought that because he is two years old, it would be hard to tell if he was in pain or just sad. but I could always tell the difference. Thankfully his pain meds helped him feel mostly normal and he was back to his very active self in no time. The week before my mom had actually had hernia surgery and she said she was not feeling good until about day 4 and so that helped me know a rough time period and not end the pain meds too soon. In fact, we kept him on meds longer than 4 days. (Not as many doses, it helped to kinda slowly cut back.)

We were able to give him some baths with a little work. I would take one of Andy's socks and pull it on over Anderson's cast. Then I would roll over the top so that it was bunched around the top of the cast. I figured it would soak up any water that might get past the bags. We would take two shopping bags and tie them on one over the other. 

Then we filled the bath tub up only about two inches . (His skin graft site is in his groin area and they said it can get wet but not soak in water.)  Andy washes his body while I would try to hold his cast arm up and out of the water.
It has worked pretty well. Anderson just loves baths so he actually does not even mind that I was holding his arm up that whole time. 

We heard alot of "cast off!" the first few days and it was great when we could get out and do things.

To keep Anderson busy after his surgery and to distract him from his new cast, we went to the zoo for a few hours on Friday.

I see monkeys!

Is there a tiger in there?

I love giraffes!

He was thrilled that Thomas was there too.

The next day. (Morning in the hospital)

We had a great morning at the hospital. Anderson's pain was under control and he seemed much more like himself. Here is our morning in pictures.

We gave him a "bath" with nice warm wipes and this cool shower cap.
It had soap inside of it to wash his hair.

A very helpful nurse suggested that we move my bed next to his bed.
To those of you who will be going through surgery,
I highly suggest this if you can do it.
 It was great to be only an arms reach away during the night. 

Our first nurse Michel tried to help Anderson not pull out his IV from his foot.
 He taped a cord on this bear to show Anderson that it was o.k

Attempting to do things with one hand is a new challenge.

I love that little face!

Our room number.
It's a tradition for me to take a picture of room numbers.

Exploring the hospital 

Andy's room in the Ronald McDonald House

Bathroom in the Ronald McDonald House

Shower
It was so nice to shower in the morning,
it made the day seem nice and fresh.

Fun little game in the Ronald McDonald House

Anderson loved this car. He drove it all around the hospital. As long as we kept up on his pain meds he was doing great. We did hear a lot of requests to take the cast off however. :) 

Little car, little driver, little cast.

On the way home. Tired little guy!
I brought a shirt i did not like that much for him and we cut off the sleeve.
 It worked great.
I also bought some lady's leg warmers that were really fuzzy. We put those on and it made his cast much softer. a good thing for all of us.

Staying in the Hospital

Disclaimer: Some of this will be long and boring to those who may not care. I know it is somewhat a long post. I wanted to put details to remember the night for ourselves and also for those who might be reading this blog who may have a child go through the same thing and wonder what it could be like. Thanks for understanding.

When we got to the room Anderson was transported to a nice big bed.
His first nurse, Michael, checked him out and hooked him up to the machines in the room that would moniter his vitals and also to the I.V. that would keep him hydrated and help him take some of his meds.

We sat there with him for a while.  He was just laying in bed so miserable. It was strange to see him so still, normally he is very wiggly and active. Grandma and Grandpa Toner and Meme Johnson all came and tried to make him feel better. I popped in a thomas the train dvd to help distract him from the pain and the cast and the cords.

hooking up Anderson to the machines  

recovering

lots of love!

blood pressure 

not feeling very good.

A little thomas might help.

We love you buddy!

very snuggly and tired

We went to get dinner at the Ronald McDonald house and Andy's parents watched Anderson. He got very agitated and wanted to get out of bed, so our nurse Michael suggested a wagon ride. They stuffed the wagon full of pillows and blankets and plopped Anderson in on top. Grandpa pulled the wagon and Grandma pulled the I.V. stand. They met us in the hallway coming back to the room. We all headed over to the craft area.

On a wagon ride to get out of bed for a while.

Making a pillow case in the craft time

They drove him in the wagon and his I.V. In the waiting room area they had a craft where the kids could draw with markers on a pillow case.
After a while Anderson was getting tired so we went back to our room.
It was getting late so the grandparents all decided to leave and go home.
 After they left Andy and I and Anderson hung out for a while but everyone was getting sleepy.
Anderson had a moment of pain that I hope I never have to see again. He was almost screaming and grabbing at his skin graft incision area. I was trying to calm him down but I couldn't. He wanted all of the cords off of his body and he wanted "cast off" he was crying and crying like I have never seen him. Thankfully we called for the nurse, who came in and gave him another dose of morphin and he calmed right down. I think that it had worn all the way off and they were not going to give him more if the pain didn't come back.
At around 9 pm Andy went to his own room in the Ronald McDonald house, with the plan that we would switch off at 1 am
Anderson got slightly itchy and got beydril for itches. He almost had to have another catheter because they did a scan of his bladder and it was very full. Anderson had 2 diaper changes but there was not much pee in them. I was feeding Anderson some apple sauce and said that I would try to get Anderson to pee. I told him that he should go potty in his diaper. He grunted and worked really hard at it just like he was pooping. When Michel came and check He had a super wet diaper. Yay! I have never bee so excited for him to pee before. (I only tell this story because this was something I had not thought of after surgery.)

He had some more pain med.s and check at 12:00

I tried to help Anderson get to sleep but with all the different cords hooked up to monitor him he kept making one of them go off and the alarm would go off right as he was drifting to sleep. I even got in his bed with him and tried to hold him.  He fell asleep for a few minutes but then the alam went off again he woke him up in to a frenzy and pulled at all his cords. I was wrestling him trying not to let him take them off, but then I just let him take the oxygen one off of his foot. I decided that if it was a big deal then the nurses could yell at me, but He was not getting any sleep.
One of the best things to help me at this moment was a smart nurse who suggested I push the couch bed right next to Anderson's hospital bed. This was great. I was able to snuggle him while each of us had our own space. This was one of the main reasons we ended up falling asleep.

The nurses did come in and it was time for a shift change. The new nurse ( I loved her! but I don't remember her name.) let us take off the rest of the lead cords and all that was left was his I.V.  Finally with the machines and Thomas dvd turned off,  we fell asleep.
I brought Anderson's sound machine and night light from home and it was a big help drowning out the typical noses of the hospital that may have otherwise woke Anderson up.

Andy came to check on us and switch with me at 1:00 but we did not switch because Anderson was finally asleep and I was too, so we decided he should come back at 3:00
We slept most of that time but Anderson woke up and needed pain meds.
Andy came back at 3 and we were still sleeping so I sent him back to his room to sleep more. Anderson and I both woke up at 5:15 and Anderson was crying hard and asked for daddy (awww!) So I called up Andy and he came right over. We got him more medicine, then went on a wagon ride because he was so restless.

We came back and he slept from 6ish to 7:30 and then he was whimpering in his sleep so I wanted to get him his tylenol so I asked the nurse to come and give it to him and then he woke up for good.

All in all the night did not go as bad as I thought it might. Sure there were some hard moments when Anderson would be in pain or was wild because of the cords and having to be still. But they were few and far between. We had wonderful nurses who helped us at every problem. And it was great to have access to the Ronald McDonald house. That helped us all get more rest then I expected.

Recovery Room

We got called back to go see Anderson in recovery. This was much much different and harder then I expected. Anderson was sitting in a nurses lap and very out of it. He was crying a little bit. I started talking to him right away. “Anderson it's mommy and daddy. We are here. We love you” The look he gave me was not the normal sparkle look when he hears my voice. It was much more blank and pained. So much pain and confusion. I quickly sat down and the nurse handed over my baby. He was so uncomfortable and not himself at all. He was even crying in a strange way. I had to hold a tube of oxygen near his mouth to try to help him get back to normal. There was a machine regulating his oxygen that kept beeping in the background sometimes slower and sometimes faster. I don’t think he was ever in danger but it is still unnerving to hear. Anderson asked for water. We gave him a sippy cup and he drank it in huge gulps. I was afraid that he would puke if he drank it so fast so I kept telling Andy to slow him down. But then Anderson kept asking for more water over and over again. Then very next thing he said was “I want to run.  I had to explain to him that no he could not run right now he had to sit with mom so he could feel better soon.  We discovered that Anderson still had his cathidor in from his surgery. So the nurses had to figure out if he was supposed to have it out or supposed to leave it in until we got to his room. Thankfully they took it out there.  After that we put him on the car bed and gave him a second cup of water and wheeled him to his overnight room. 

Leaving the recovery area and heading to our overnight room

Upstairs on the "car bed"

Drinking and drinking water!

During Surgery

7:45
Anderson, mommy(me), and the nurses walked in to the O.R.. Everyone but Anderson had to put our masks on and Anderson thought that was strange so I kept saying, "peek a boo". He did great with the anesthesia mask, just like he practiced. I think the gas smelled funny so he tried once to push it away but we distracted him by talking. We talked about mommy and Anderson having purple on our hands and we talked about the cars he played with in the waiting room. The gas was starting to take affect, he started getting sleepy and he looked like he was not sure about that. I asked him about his bus at home that he had and he looked up at me with his huge blue eyes and started talking kind of silly and then within a minute he was out. As they laid him down on the table, I got a little teary but they let me kiss him on the cheek. Then they brought me out and I started crying a little bit when I was walking down the hallway. It was a long walk so I was mostly put together when I got back to my room but I started crying again when I saw Andy and he gave me a hug. I stopped crying really soon after that and hugged my mom.

My husband wants me to mention that Joe Mauer’s fiancé walked us to the waiting room. We are both big Twins fans so that made his day. 

We got our things and went to sit in the waiting room where I started documenting the day, Mom  texted some of our family and friends, and Andy posted updates on facebook. 

 The nurses gave us a pager that would help us keep in touch during the surgery. A nurse would call and tell us little updates through out. 
The waiting:
8:35 Got a page that told us they were starting the procedure. Dr. Lim had marked Andersons hand with all the cuts that he wanted to make and they were ready to start.

9:35 Page that everything is going just like they want it. Dr. Lim is working on the first fingers. He is going slow. On the first side of the hand will do the  back next then move on to the next finger.

10:00 We went to the cafeteria and ate gross, expensive, food. we desided not to eat there again. Andy's mom and dad arrived. it was great to have them come support us and Anderson.

10:30 Page: fingers are separated and Dr. is sewing it up, skin grafts will be starting soon, everything else is going well. 

11:30 Page: both sets fingers are separated, skin removed, now more sewing then start the skin graft

11:35 we tried to go to our overnight room but it was not clean yet. the nurses told us about Ronald McDonald house. Andy reserved a room for us for the night.

12:00 we went to the Ronald McDonald house for lunch. It was a wonderful space. A large full kitchen, beautiful spot to eat, a living room area to relax. Down the Hall there were many units, basically hotel rooms, where people can stay if they need a place while their loved ones are in the hospital.

 

12:30 Page: Dr. Lim had a little more suturing to do then would start grafting.
1:00 We headed back to the waiting room. I got the game "banana grams" from the Ronald McDonald house to try to speed up the time. It helped. We played a few games  and I hardly even had time to think about the surgery. 

1:30 Page: still grafting, casting in about a half hour

2:10 A nurse called us back into a consultation room where we met with Dr. Lim. He told

 us the surgery went well and he was optimistic about Anderson's recovery. I was so relieved that we could see him soon. I just wanted to hold him. Dr. Lim explained to us that the surgery had taken longer then planned because he had to figure out how far the webs should go down. In the end he said the extra time gave Anderson slightly longer fingers. This is great since his hand is shorter than the other, it may help them look even more the same.
We went back to the waiting room 

2:20 Last page: Anderson is getting his cast on and we might get to see him in 20 min. They were also going to start waking him up from anesthesia.
2:40 They came and got us to go to the recovery room.

The total surgery time was 6 hours but he had gone in to the or at 7:40 and we did not see him till almost 3:00. Thats almost 7 hours of waiting.

The waiting was a mix of emotions. I had strong moments and moments where I felt sick. Moments where I just wanted to sit on the ground and cry. Moments where I wished I could go lay down because I was so tired both physically and emotionally. I would be fine and then a thought would creep into my head. I thought of my sweet Anderson so innocently playing with all the toys and cars before going into surgery. He had no idea what was coming. I wished he did not have to wake up in pain. I would have moments where I would think about how great it was that he was getting his fingers separated and how some kids might not get the chance to get them separated. I had moments where I was nicely distracted by our family or by walking around or by eating lunch or drinking coffee.

The pages that we got about once an hour was very nice. It broke up what turned put to be a 6 hour surgery. I could make it to each new hour when we would get a page and a smigen of information that my husband would bring back from each phone call from the operating room.  I prayed quite a bit for God to give me strength and to be with Anderson and the Dr.s and nurses working on him. There is no peace like the peace that God gives when you trust in Him.