The Easiest Way To Update

I haven't had much time to update the old blog, it's been quite a crazy year since Charlie joined us with many ups and downs. I won't be going into all of those right now and unfortunately my reason for blogging again is not one that I'm really excited about. With everything that's been going on in the past couple of days it's just easier to go back to the old way of updating everyone.

The best place to start is the beginning. Our little Amber has been fighting some nasty on and off viruses and respiratory infections since October (really even before then too). She's been on and off antibiotics, additional breathing treatments, comfort meds and increased O2. Finally right after Christmas she seemed to have finally kicked it but really wasn't back to 100%. New Years Eve she started to have some breathing issues again and her heart rate starting creeping up. We really didn't think much of it since she always has some apnea or other breathing issues after a prolonged illness because her body is so tired. Usually it last a few days to a week once she starts to really recover and gain strength again.
Unfortunately it seemed with each passing day her night time breathing was harder and her heart rate continued to climb. By Thursday night she was really starting to have really bad  nights. Each day and night has been worse with desaturations/apnea even during her nap times (something she has never had before). By Sunday night she was up to 4 liters of O2 (the highest we could go with her cannula) and on the maximum amount of comfort meds we could give at home with no signs of her getting better or giving her any relief.
Last night we made the decision to have her admitted to the hospital. Last night was a very rough night for her. Her heart rate would not come down from the high 150's to low 160's. It has been this high at home but she was having some periods where it would come down into the 120-130 with sleep. They started her on a CPap machine via a very large cannula and that has helped her O2 levels stay where they should, as long as she keeps it in her nose otherwise she plummets into the 70's. They also increased her doses of comfort meds and decreased the time between the doses. She finally settled down around 2am and kind of slept until 7:45. Her morning has been some what better. She has a small chunk of the day where she has decent energy levels and she tries to play and talk to us. Today she was definitely struggling more during this time but she is such a fighter. Unfortunately her heart rate has not been improving with medication today and at the lowest has been 144 awake. She is sleeping comfortable right now and thankfully her heart rate has dropped into the high 130's.
We are still waiting for a cardiology consultation to see how bad her heart is and to get a better idea of what is going on. It is a horrible waiting game. When she is awake she tries so hard but the nights are so rough for her. We could increase her comfort by giving her meds through an I.V. but she would not be able to go home on it. She is doing somewhat better on the CPap but there is no home cannula option she would have to tolerate a mask which she will not. Her poor little body has been working so hard for so long. We are praying that we can keep her comfortable and that she will pull through this.



It's very strange to be sitting here in the hospital again on the same floor we were on almost 3 years ago, in a room that looks exactly the same as the one she was in while she recovered from her hernia surgery. I remember talking about similar things and even watching her struggling then.

She was so so tiny back then!

 It amazes me how much she has gone through and how far she has come. We were so blessed to celebrate her 3rd birthday with her this September, something that at one point looked like we would never be able to do.

"Therefore we do not lose hope. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18 (NIV)

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV)