4 Months Old

Today is a week since her surgery. She had a rough start to the week. They were trying to keep her sedated enough to keep her still so the trach can heal and settle but not sedated to the point where she was a zombie. It took them a few days to figure out the perfect medication combination but they got it right and she had a better week.

Today was her first trach change and she did great! Now that she's had that done they can start to ween her off the sedation so that she's awake more and they can start to do more activities with her and have her a little more mobile. I got to hold her again today for the first time in almost two weeks and she was just beautiful! As soon as they put her in my arms she fell right asleep and just stayed that way until I had to leave. It just breaks my heart leaving her but she'll be back in Jersey soon! Next Friday she'll have her G-Tube surgery and then a week or two after that she'll be transferred to Children's Specialized Hospital in New Brunswick. While we're there Arthur and I will have to go through a lot of training to learn how to take care of the trach and be her primary care givers. Once they're (and we're) comfortable enough with the training they can release her. We're hoping by mid-September she'll be home. We'll have to have nursing for her when she gets home, especially at night, but at this point we're taking this process one step at a time. We just got through her first trach change and now we're focusing on her G-Tube surgery.

Miss Kennedy turned 4 months old yesterday! It's amazing what my little girl has been through in just 4 months. She's so strong and such a fighter, just like her sister! It has touched Arthur and I how many people have reached out to us to offer support during this time. People I went to high school with who I haven't talked to in years. Ladies I met on a chat board 10 years ago when I got engaged. She has love and prayers coming from Arizona, Florida, Tennessee and even all the way from beautiful Ireland! This whole situation has opened our eyes to many things but most importantly it has shown us that people are kind and good and selfless. It's truly a beautiful thing to see especially when so many bad things could be going on around you. We're truly blessed and so is our family to have such amazing people praying and thinking of Kennedy. With all of you on her side it's no wonder she has such strength.

We love you all,

The Crist Family

Arthur, Katie, Makenzie & Kennedy

 

Arthur picking Kennedy up for the first time. She was just days old.

Kennedy 4 month old!

Kennedy's surgery-UPDATE

Kennedy's surgery has been moved to today some time after 1. Please keep her in your prayers.

Love,

The Crist Family

UPDATE
Kennedy is out of surgery.  She did great!  Art and I went to see her. She was supposed to be sedated but she opened her eyes to say hello to us! She's simply amazing! 

My heavy heart

Kennedy had a broncoscopy done on Friday to check her lower airways to see why she's so agitated. He said that she has subglottic stenosis which is basically severe swelling and scaring right below her vocal cords. This is causing her airways to become severely narrow allowing only a little bit of air to pass through her airways when she breathes.  He had no choice but to put a breathing tube back in and put her back on the vent. They are giving her a high dose of steroids to try to get the swelling down but even if the swelling goes down a bit they don't think it will be enough. She is scheduled for another broncoscopy on Friday and they will also perform a tracheostomy.

There is so much about this surgery that upsets me and scares me but I can't think of that right now. I need to focus on the good things. She can finally start to be a baby and smile and laugh and play. This will finally bring her home to be with her family, all four of us under one roof. And Kenzie can finally start to be the big sister she is dying to be. This isn't a permanent solution, she'll be able to have it removed, hopefully within two years, and Arthur and I know we had the doctors try everything they could for her. This is what our little girl needs.

We're trying to mentally and emotionally prepare ourselves and our family for Friday. You all have been so loving and supportive during the last 16 weeks and it means more to my family than words could ever express.  If you could continue to keep Kennedy and our family in your thoughts and prayers, especially on Friday, it would be greatly appreciated. I will update when I can.

Love to all,

The Crist Family
Arthur, Katie, Makenzie and Kennedy

Our Hail Mary Pass

I'm sorry I haven't updated the blog in a while. We've had a lot going on.

On June 25th Art and I had a family meeting with the doctors at CHOP. Kennedy was making no progress with anything they tried. Any time they tried to lower her vent settings she would struggle and they'd have to put them back up again. Their recommendation to us was for her to have a tracheostomy. We knew that's what they were going to say but it's a lot different thinking it than hearing it actually from the doctor. They went over everything with us about the surgery and the timing of it all. It was all just surreal. I couldn't talk. Art had to do it all for us. I just couldn't believe this is where we were. We asked them if they could give Kennedy one last dose of steroids to see if they could get her vent settings down. They told us it was entirely up to us and what they thought some of the risks may be. We said we'd think about it and call them in the morning. Since we knew what the doctors were going to say to us in the meeting Art and I talked a lot about what we thought and wanted. If we were going to make such a life altering decision for our daughter we wanted to make sure we dotted all our I's and crossed all our T's. We wanted to go into this surgery saying "We tried everything we could for Kennedy and every road lead to this." That would give us some comfort. This was us giving her one last shot, our hail mary pass, and no matter what the outcome was we'd be ready to accept it. So we called the doctor's in the morning and told them to start her on the steroid.

They started her on Thursday, June 26th and she was responding well to it so they were being very aggressive with lowering her settings. By my Wednesday visit on July 2nd she had handled everything they threw at her so well they were talking about extubating her by the weekend.

Saturday July 5th Kennedy was taken off the vent and put on cpap! I can't even explain how beautiful she was. How wonderful it was to see her without that damn tube! How amazing it was to hear her cry for the first time since she was two weeks old! It brought me so much joy and I started crying! She was clearly agitated and worked up a bit so the nurse suggested I hold her and calm her down. I was able to pick my own little girl up out of her crib and put her in my arms. And we just sat like that for a few hours. When she got restless I consoled her, patted her butt or gave her the pacifier. I was being her Mother for the first time in her life and it felt amazing!

She had an ok rest of the day but that night she started to struggle and Sunday was a tough day for her. Her oxygen was going up and her breathing was very fast. Arthur and I called Sunday night to check in and after our conversation with the night nurse we were sure we were going to get a call in the middle of the night saying they had to put her back on the vent.

Monday morning I called around 5 a.m. and the nurse told me she actually had a pretty ok night. They switched her from cpap to sipap which gives her the same pressures but it's different head gear. It's more secure and she wasn't knocking it off like she was the original. She calmed down a bit and was able to get some sleep. I got to the hospital around 8 a.m. and she was sleeping comfortably.

The doctors came over to take a look at her. They were definitely happier with where she was at the moment but they're concerned about her agitation. When she's calm and sleeping she breathes nicely. But when she's awake she gets very agitated and her breathing increases and her heart rate goes up. Her blood gases and chest xrays have been good and her oxygen has been steady so the doctors asked ENT to come in and take a look at her airways.

They came in today and looked at the upper airways and they saw alot of irritation and swelling so they want to do another bronc so they can look at the lower airways. That will happen some time this week although we're pushing for sooner rather than later.

So right now that's where we stand. This is full day #3 off the vent, the longest she's been off ever! She's still struggling but every day she makes it through off the vent the better it is for her. If it is just that her airways are swollen then she'll just need time for the swelling to go down. They also want to see how she reacts to being off the steroids. Saturday will be her last day. They're expecting her to regress a little bit because that's what usually happens but hopefully it won't be that bad. She'll just continue to fight and do what she does best, surprise everyone! She's fighting like nothing I've ever seen before. This little girl just amazes me!

Keep those prayers coming! She needs them now more than ever!

Love to all,

The Crist Family