Strabismus - FIXED

Everyone has been asking me how Haven's eyes are doing and how they look.....check her out! She is wearing her new robe Great Grandma Ohio sent to her. She has been begging for robes! She actually looks like a little Smurf to me! :)


Her eyes are doing great. She handled surgery and recovery AWESOME! She did want to know EXACTLY what they did to her eyes. I didn't tell her - I told her I'd tell her later when she's older.

You'll notice one pupil is much larger than the other. During the past year Haven's vision in the left eye went from 20/25 to 20/70. We began Atropine drops last November to get her prepared for surgery. After surgery they tested her eyes and her vision has started to improve slightly. THIS IS GREAT NEWS TO US!!! So we are back on the Atropine drops twice a week.

What they do is actually blind the good eye (big pupil) and force her brain to learn to use the bad eye again. The doctor wants us to make sure she is doing lots of workbooks or coloring books as it will help with the vision more than anything else because it makes her have to focus more and work harder at it.

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.

Update

A short update until tomorrow - as we were admitted to the hospital but luckily my phone has Internet!!

Haven did very well through surgery! She made a couple of phone calls tonight before her next dose of Oxycodone and Tylenol.

She went in to surgery around 10:45 am and we finally got her out around 4pm.

Her surgery was done in two parts. 1st part: major adjustments of both eyes. He found that when she fell asleep both eyes rolled off to the side really far and there was a lot to correct.

When she was coming out of the anesthesia from the 1st round we were able to visit with her. I only went back for a few minutes - Kris went back first and stayed with her for about an hour. I can't tell you how hard it is to see your child with blood-filled tears streaming down her face and what looked like fishing lines coming out of her eyes! It was very very hard to see her. The whites of her eyes are bruised, bloody, and just horrible!

The 2nd round of surgery they put her back under after checking the alignment from the 1st round and then they make final adjustments, remove all of the lines and strings hanging out of her eyes and wait for her to come back out again.

Haven was definitely admitted for the night. Kris and I have spent the past 6 hours wiping bloody tears from her eyes. She still refuses to open them so we have kept wet gauze on them all night. She keeps falling asleep and then waking with sharp pains through her forehead - she is staying on the Oxycodone for the night.

Oncology came in to check on her around 7:30pm - which was a nice surprise. And Nurse Katie called to check up on Haven to make sure she was doing well.

Haven will be transported to the 8th floor around 1am for her Rituximab chemo.

I will update more tomorrow. I have a few photos - although I was yelled at constantly about the flash of the camera! More info tomorrow - good night.

Thank you to everyone around the world that have sent Haven prayers and good thoughts! We truly appreciate everything. Love to all

Haven's Surgery

I was able to talk to a few of Haven's doctors and nurses today.

We need to be at the hospital by 8:30am tomorrow. Haven can not eat past 6:30am.....THIS IS THE HARDEST PART OF ANY PROCEDURE! Haven's surgery will begin around 10:30am. Do you even know how many times we will hear her ask for food during that time!!!!!????

I talked with Oncology and due to her at home chemo needing to be mixed with milk she will not take that until she wakes up but we will take the blood pressure meds - if Haven misses one dose of BP meds her BP rises significantly and we have to keep it down.

Once her surgery is over Haven will be admitted to the 8th floor instead of the normal recovery on the 4th floor. Haven needs to go to the 8th floor because this is the only floor that has Chemo Nurses (ha ha - that's how they're known). When Haven comes out of anesthesia she will begin her chemotherapy Rituximab - which should take about 6 hours to administer.

Summary: Surgery begins at 10:30am and about 6 hours later she will be in recovery receiving chemo for about 6 hours.

Haven will be monitored at the hospital for the night. We will update every as we can. We can't guarantee when we will be able to contact anyone - we will definitely be sleeping all day Friday if we're home.

Love to all.

Medical Updates

Haven has Rituxan tomorrow - her full day of chemo at the hospital - and it has been requested by her Oncologists that I join Kris and Haven at this meeting to review everything. I do not normally go to the chemo appointments but since her doctors are urging me to be there I will join them.

(PS: Hi Oncology Doctors - they told me they read Haven's blog so this will be a test!)


What I know:

Haven will remain on Cyclosporin twice a day for a minimum of 6 months
Haven will remain on Rituxan for a minimum of 6 months

They will not alter this schedule or make any changes. I have been and will continue to keep a daily log of Haven and monitor her for any changes - positive or negative. At the end of her 6 months her doctors will discuss her files with the medical board for further review.

Haven is still on schedule for surgery on March 26th. Haven is at a high risk on this surgery due to the ROHHAD and the chemo. The biggest concern for her doctors is her being in anesthesia. The risk of her stopping breathing is significantly higher due to the ROHHAD. We have already been called about Haven staying over for observation - but I have requested that this only be done on an as needed basis and not automatically.

I also spoke with Haven's nurse today - the ABG (Arterial Blood Gas) will also be performed during surgery. She has to be under anesthesia to have this done so we had to make sure it happened at the same time as the other surgery. Haven's ABG will be done through her wrist. I am told she will have more pain from this than the actual surgery.

On March 27th - Haven will be back at the hospital for her full day of Rituxan.

April 9th - We will meet with Haven's Pulmonary doctor - Dr. McGinley. He will begin to handle Haven's case from this point forward - re: respiratory functions. He will review her ABG results with us and begin to keep a constant monitored file for Haven.

Early May - We will meet with Haven's Endocrine doctor Dr. Cooke - for her 6 month check up. We will look at her growth and talk about her immediate future where he is concerned. He has been working close with Haven's Oncology team and the Orthopedic doctor.