Saturday, March 28, 2009

Home from the Hospital!!!

We arrived at the hospital around 8:30 am on Thursday to get ready for Haven's surgery. She was all happy. We hadn't really told her too much about it yet. She gets very anxious now so we waited until we got upstairs to explain it all to her.

When we got upstairs we met with the anesthesiologist, Dr. Elliott, and her eye doctor, Dr. Guyton. I really want to say how happy we were and are with both of these doctors. You are handing your child over to someone you don't know and have to really feel comfortable. Both of them made us and Haven happy. Dr. Elliott is one of the best anesthesiologist we've ever had at JH. I told Kris I wish we could request anesthesiologists each time, because I'd request him.

Haven got the "G"s on the side of each eye. This notes which eyes will be done and Haven needed both.

Heading off to surgery. Bluesy went with Haven. She said all her other babies were too scared to go to the eye doctor. Bluesy also had her eyes done, Haven said. Dad took her back - as I said before I only went one time and won't do it again. She did very well. She put her own mask on to fall asleep. The flavor of the mask this time - Popcorn. I was informed by Haven that popcorn flavor is very nasty!
She did extremely well through surgery. When she came out after round 1 we were able to visit with her. I only went back to see her for a short time - Dad stayed with her most of the time. I helped with holding her down to get eye drops in. Then they put her back under for round 2.

All in all - we arrived at 10:30 and were released from recovery room at the eye center around 4pm.

Haven was taken to the 4th floor of the pediatric building. She had a private room to recover in. About 2 hours after surgery they said she could have something to eat and she was so excited because I was going to get to feed her like a baby. We had lots of fun playing "Guess what food this is?". She was very happy to get carrots because as she says "they are good for the eyes".

Haven finally gets some sleep. She had a couple doses of Oxycodone and this really helped with the eyes. They were burning quite a bit. She kept asking for a mirror but we told her that hospitals don't have mirrors on the kids floor. We knew if she saw her eyes that she would freak out.

Dr. Paz-Priel came to visit us on the 4th floor on Thursday to see how she was doing. We were very happy he came by. Then her nurse from Oncology, Katie, called to check in on her. She was very happy but couldn't understand why Katie couldn't be her nurse over here.

As soon as Haven was conscious enough she wanted to make some phone calls. As soon as she got out of surgery she was begging to call Lauren. She had to call Lauren because she told Lauren she would. We called Lauren twice and left a message. Then when Lauren called back she got in trouble for not answering her phone and was told that she couldn't put her phone back in her purse incase Haven needed to call. It was very sweet. Sorry family - Lauren came first! :) But Lauren is her bestest friend she says.

Haven's port. She likes to check out her port every day to make sure it is looking ok. She also likes to look at it a million times when it's accessed. She said I had to show everyone how it looks and that it doesn't hurt when it's paper tape.

Finally awake on Friday. Haven was moved to the 8th floor for Inpatient Pediatric Oncology in the middle of the night. We had hoped to receive the Rituximab in the wee hours but were not able to get it until around 11am on Friday.

This is Miss Haven's right eye. They had to do both eyes. The doctor said the absolute way to check the eye roll is when they are asleep. We thought only one of Haven's eyes were bad but when she is asleep both eyes roll very far out and a lot of correction had to be done on both.

While receiving our chemo on Friday Haven woke up with a bit of energy - not normal for her. She wanted to walk around the floor and check out the play room.

We all played a couple of games and after about 30 minutes she got a bit tired. We headed back for a bit of a nap. Around 3pm we learned that Cyclosporin actually comes in two different types. There is the "N" type and the "S" type. Even though we specifically went over it with the nurses on the 4th floor and we showed them the box of her Cyclosporin we somehow received the wrong type.

We now know Haven gets the "S" type. However, this evening she received the "N" type. Haven's levels are checked twice a week and she should be at 200, anything over 250 puts her at a toxic level and we usually skip a dose. Around 3pm the doctors came in and told us that we received the "N" type and Haven's levels were at 389. We had to run tests on the liver and kidneys and they checked her over for blood pressure and watch for tremors.

Waiting on our tests to come back from the lab Haven fell asleep on the couch for a long time with Dad. Dr. Evelyn was very apologetic and very comforting in our wait for the results. Finally around 8pm the results came back and Haven was clear to leave the hospital. We got all excited and started to pack up when Haven reminded us that she still needed her port out!

Haven's nurse, Kim, came in and this was Haven's most dreaded time. She had been anxious about removing the tape from the port and removing the needle. She wanted to make sure this nurse knew how to do it like Nurse Katie does. She asked if they could make her sleep to remove the tape. But we made it through and Haven helped out.

This is a close up of Haven's eyes on Friday evening. Check out the difference. The doctor did an awesome job and we are very happy with everything.

Haven slept very happy last night. She slept all night and never woke up and I don't believe she even talked in her sleep. She woke up around 8am this morning and went back to sleep around 10am. We told her she could sleep all day and even at 2pm she is still asleep. :)

We are happy to have our baby back home. All of Haven's photos are uploaded in to her FLICKR account. You can click HERE to see all of them.


  1. Hi!
    I am so glad the surgery went well...and so thankful the mix up with chemo got straightened out...that had to have been scary!
    Sending you Hugs Haven :)
    Mike and Hayley

  2. I am so glad the surgery went well. My prayers to Haven and her family. Haven, you're strength is so inspiring!! God Bless!!

  3. Haven,
    We are so glad your surgery is over and you are back home!! You are so brave and you eyes look great! Mason is working with his clay art you sent him and he loves it!! Have a great day. Give your mom and dad a hug from us - OK
    Julie & Mason

  4. Haven, your eyes look BEAU-TI-FUL !!!!!

    Take care kid.

    big ring

  5. Thanks to Dr. Guyton for giving our little Haven her gorgeous eyes back! Just look at this picture and see the miracle! It's heartening to see something positive happening to our Haven with all she has been through. I love you, Sweetpea! Love, Grandma B'ginia

  6. Hi! Just wanted to let you know I am sending prayers your way! So happy she made it though everything OK... : )

  7. Misty; this is actually the first time I have been able to check on Haven; her eyes are the beautiful color I remember when she was a baby.
    You and Kris look exhausted; I honestly do not know how you manage; working everyday and taking care of Havey. I know Kris is there I also do not know how he manages. I am up late myself going through all the info you have put on her site.
    Gram fell yesterday; she fell near the couch and landed near the TV I did not know about this until today; she is a little sore; she wanted me to find out more about Haven if I could so that is exactly what I am doing.