Surgery to remove the Hickman Line

As you know, our lives and schedules change pretty quick. We were going to remove the line and then we weren't.....well.....

I received a phone call on Tuesday night around 7pm from Haven's Oncologist that we were to meet with the surgeon on Wednesday to get the approval for surgery to remove the line and have the surgeon check her over.

Kris and Haven went to the surgeon's office and signed all the paperwork to get that going. Dr. Price told Haven that this had to be the last surgery - he was tired of doing surgeries on her. He was joking with her but not really. I know he does not want her to have any more surgeries....I mean 6 in 1 1/2 years is A LOT!

Her surgery will be at the end of August sometime. Our surgeon is going on vacation for 2 weeks and then we will get the date of the surgery. I am happy to remove this line - it has been nothing but issues. I'll update on that when we have an exact date.

Hi CY - Day 2

Well it's been a bit crazy around here and we've met many doctors and nurses. But it's nice to know the ones that are assigned to Haven and that they are able to learn about her and this crazy disease.

Haven has been having wild sleep patterns - which we are told is due to the high levels of Cytoxan. I think she even scared her nurse Patel the other night. The nurse told me she came in the room in the middle of the night and Haven told her to be careful because there was a little girl outside her window that keeps staring at her. She told the nurse this over and over. Haven is on the 8th floor!! The nurse was joking and telling us that she wasn't going to come back in here.

Then during a diaper change Haven decided to become a ninja and beat everyone up with her superstrength. Kris said that was around 4am and by the time they were done changing her both had a big sigh of relief.

We finally got to give Haven a shower yesterday. She is required to have a shower each day to keep the germs away. This is a huge task. We have to get the nurses to unhook her cables and wrap up her central line so it does not get wet. Then we had to put a chair in the shower so she wouldn't slip - she fell the last time she was here and took a shower.

After all this we got settled down when the Cytoxan hit her bad. I spent the rest of the afternoon up to my elbows in diarhea! Yea, that was fun!

Around 6:30pm Haven said she was really tired and wanted to take a nap. She was asleep within 30 seconds and about 1 minute later I was calling the nurses and doctors in. She was snoring very loudly and very deep in her chest. The first nurse and I couldn't wake Haven up so she called the Oncologist in and by that time Haven was awake.

She fell back to sleep about 1 minute after they left and I watched her. I took 4 videos so I could prove I wasn't crazy. Her O2 was at 100 and her HR was at 130 resting. Everything looked good but she was extremely loud and having difficulty breathing. I opened the door and both nurses came out of the station and yelled down to me "is that her?". They grabbed the other Oncologist and headed in to our room. He listened to Haven for a few minutes before waking her up. He just wanted a base line to know if it changes over night.

The Hi CY is given to Haven at 10pm. We were going to give her Benadryl to help her relax during the treatment but about 10 minutes before it was to begin we canceled that. I was too worried that putting her in to a deeper sleep during chemo would be a bigger problem than we needed.

Confirmed to go

Haven's usual Oncologist, Dr. Paz-Priel, came in to see her today. I had a feeling he might show up and then I told Kris that I thought I saw him in the hallway.

He came in to talk to us about the Hepatitis B and what we would do if it came back positive. We passed back and forth a few jokes about how he just likes to make sure we're worried enough. He said a few more grey hairs wouldn't hurt! :)

He looked Haven over and checked her breathing. Everything looks great. He told us that the lab is not usually open to run these tests on a Saturday - which we were worried about. But they were able to call in a favor and the lab person came in to make sure we knew asap.

About 45 minutes later he came back in to the room with our Inpatient Oncologist, Dr. Farah, and said ALL TESTS ARE NEGATIVE!!!! Yeah! So we are good to go with Hi CY.

Haven should begin Hi CY within the next 2 - 3 hours. Our other Oncologist, Dr. Chen, will be checking in on her tomorrow. Haven will be required to go potty exactly every 2 hours after the initial receipt of the Hi CY. Even at night - the nurse will come in to wake her up every 2 hours to make her go to the bathroom. We can not leave the Hi CY in her bladded any longer than that or we will have major complications.

Also with the Hi Cy we are required to put this paper in to her diaper to check the amount in the urine.

We are extremely excited she does not have Hepatitis B. I'm really nervous now about the future blood transfusions she will have while on this treatment. But I really have no choice - I can't deny the transfusions.

Haven is finally sleeping. She did not sleep at all last night. She had the fevers off and on and was just very anxious to not be in her bed. So I am very happy she is finally out of it.

Recovery

Around 9am we met with the surgeon and Haven was headed to recovery. The surgery went very well - no complications. He was able to get the line in to her left jugular and the other line is playing perfectly in her artery to her heart right next to the line for the other port.


We like this surgeon because he is "real". He tells it to us straight and will tell us when we're crazy. He has remained informed over the past 1 1/2 years on Haven and how she is doing. He told us this only marks an extremely rough road ahead for Haven. His sincerity and concern truly make us confident in doing any of Haven's surgeries.


He did warn us that he is now out of locations on her body to put in any more equipment. As he said - "we are out of room - no more ports!" Believe me, we don't want any more ports either.


He thanked us for allowing him to care for Haven and to be part of her life and he looks forward to the day when she is no longer at Hopkins.


Hopefully in about 4 months she will only need one more surgery to remove the Hickman line (Central Line) from her chest as the risk for infection is so high we don't want it in there.


Thank you Dr. Price and thank you to your dedication to medicine....without your extreme skills my baby wouldn't be in the best hands! We owe you a lot!



Here is Miss Haven and her latest smile. She has decided that this is the new smile. Really - it looks like she's just puckering her lips but this is the only way she would smile for the camera.


This was taken around 1pm. This is the first time ever that we were not able to remove the oxygen line from Haven. She was out of surgery at 9am. Every time the nurses would test her O2 levels by removing the line she would immediately drop in to the low 80's. So we had to keep this on until she remained stable at 92.


You can see by this picture where the incision is at her jugular on her left side and her newest port in her chest. She is extremely cautious of this new port and will not walk fast at all. I was able to sponge bathe her and get all the orange iodine off her body.

Around 3pm she was well enough to go to the playroom. Little did I know we needed to have the mask on if she leaves isolation and we had to have her room door shut tight! The nurse let me know immediately and she put the mask on Haven. So I won't forget that next time.

Haven loves to do puzzles so we worked on a Spongebob puzzle. During this time I also met with Haven's 3 new Oncologists. They work in the Inpatient Oncology wing. Dr. Jennifer, Dr. Farah, and Dr. Chen. We'll be working with them a lot during these next few weeks.