Comments (49)

By Lana, May 31, 2010 5:37 pm

The last 8 days have been exhausting. Thursday we didn’t think Carmen would make it through the day. She is still here and actually doing better. By better, I mean that she is breathing better. Although her oxygen levels have been sporadic, they are mostly in the 90′s with 1-2 liters of oxygen. We’ve given her morphine and Ativan as needed to keep her comfortable. Her lungs are crackly but clear.

Despite the higher oxygen levels, Carmen’s Hospice nurse still thinks Carmen is moving into the end stages of life. She is extremely swollen. Even her tongue is swollen. Suctioning Carmen is hard even without a swollen tongue because she clamps down. Suctioning her with a puffy tongue is down-right difficult! She hasn’t pooped in 11 days despite giving her suppositories. She has unusually hard and fast pulses in her hands and feet, something she has never had. And regardless of the morphine and Ativan, she still goes through periods of very fast and labored breathing.

We are doing our best to keep Carmen as comfortable as possible but the ups and downs of all of this are extremely difficult.

Comments (15)

By Lana, May 26, 2010 10:05 am

Carmen update: Carmen is hanging in there. Will she get through this sickness? We don’t know. She is up and down, fever and respiratory distress one day and then no fever and calm the next. Right now, she is doing OK. She is still on 3 liters of oxygen but she is staying 90% and above. She had another fever last night. She has been peacefully resting and hasn’t needed morphine. Thank you for your continued prayers!

***

Every once in a while, we cross paths with a truly amazing person. Carmen and Lauren had a babysitter a few years ago who is just that…amazing. She sent us this letter to Carmen last month. Thank you Tina.

April 12, 2009

Dear Carmen,

We will never get to have a conversation on earth, but I hope you’ll be able to read this letter in heaven. Carmen, I want you to know what a difference you’ve made here. You came to us three years ago and stole our hearts. That was before the Tay Sachs stole you. We had only a few months of pure joy with you before finding out that your stay on this earth would be so short. You’ve made the most of it, though.

I know that you can’t talk or walk or smile. You can’t thank your Mommy for everything she does or hug your Daddy goodnight. You can’t play with Lauren or make Hope giggle. But Carmen, you have not wasted your life. You see, Carmen, you’ve changed us. There is not a single one of us who has not learned something from you. You have pushed us towards our heavenly Father, whether that means holding onto Him in pain or asking angrily, “Why?” Because of you, we have prayed more and believed more. We have fought harder to hold onto our faith when it seemed like the last shreds of belief were slipping through our fingers. We have clung to God when we didn’t understand, or rather, He has clung to us. He never lets go.

I live on a different continent now, so I don’t know if I will ever see you again here on earth. Carmen, I consider it one of the greatest privileges of my life to have known you. I was one of the few who got to give you a bottle, feed you your favorite vegetable and put you down for a nap. For a long time, I couldn’t believe that the Tay Sachs was real. I still don’t understand why God would take you away from us.

Do you know what our one hope is, Carmen? Both your family and I, as well as many other people who love you, know that this life is not the end. We know that someday soon, you will be free. In reality, it is now that we have lost you, while this disease has taken away the Carmen we knew. But when you see Jesus, then you will be Carmen like we never could have dreamed. You will be able to talk and walk and dance and laugh and worship your Creator without your broken body holding you back. Carmen, that’s what keeps us going. It’s knowing that this is not the end and that someday we will make new memories together when all of us are whole and healed and free.

I always believed that God could heal you on this earth, but I don’t know if He will choose instead to heal you by calling you home to Himself. All I know is that this story, this sickness, does not end in death. Only time will tell how much life will be given to so many people because of one little girl named Carmen.

Carmen, I will miss you, but I will never forget you. You have impacted hundreds of people simply by being. Thank you for your life. Thank you for coming to us. Thank you for teaching us what is really important in life. I am so grateful to have known you.

I love you, Carmen.

With all my heart,
Tina

Comments (7)

By Lana, May 25, 2010 7:45 am

Carmen had a fairly good night. No fever and her oxygen levels were above 90% for most of the night. I’m sure the night nurses are extremely relieved that Carmen is doing so well at night and saving all of her shenanigans for us during the day!

Carmen’s Hospice nurse visited yesterday and said that Carmen’s lungs do not sound good. We don’t have a definitive “pneumonia” diagnosis but that’s our best guess.

We will have another Hospice visit today to further assess Carmen.

Dave is on a business trip but will be home tonight. Thank goodness! Dave is a very calming factor in our lives and having him gone during crisis moments is not fun!

Hope is saying, “Daddy, help, help! Hurry home and rescue me!”

Comments (21)

By Lana, May 24, 2010 12:45 pm

Carmen had a horrible day yesterday. When Dave let the night nurse go, Carmen’s oxygen was 70-80%. Carmen was on 3 liters of oxygen and still unable to maintain her numbers. She was taking 80 breaths per minute and looked to be in terrible distress.

We were surprised as the day before we had gone out for the day and Carmen had done very well.

We called Hospice and the on-call nurse came out. For several hours we talked through our options and what we want for Carmen. We are not treating illnesses anymore with antibiotics but simply trying to keep Carmen comfortable.

All day we alternated Tylenol and Motrin, trying to reduce her fevers and keep her comfortable. We gave her morphine every two hours.

Last night we went to bed, fully expecting Carmen to have a rough night. We set our alarms for every two hours so that we could give Carmen morphine. At 2am, Dave checked on Carmen and the night nurse said she was doing well so he did not give her morphine. At 4am, I went in and Carmen was peacefully sleeping so no morphine. At 6am, Dave checked again and she was still doing well. At 8am, the night nurse told me that Carmen did not have a fever all night. In fact, she put the heating pad on her because she was cold!

I felt immense relief this morning at 4am when I saw Carmen calmly sleeping. I have accepted the fact that Carmen is going to die but I cannot stand watching her struggling to breathe. I can’t stand it. Whenever she gets like that, I pray that God will spare her suffering and just take her home.

I’m not sure yet how this day will progress for Carmen. I did give her morphine a short while ago and also an extra dose of Ativan to calm her breathing. She does not have a fever. Perhaps she will pull through this.

Dave and I have talked until we are blue in the face. There are so many decisions to make for Carmen and none of them are easy. We feel confident in our decision to stop treating illnesses but the guilt does set it. Especially when others express disapproval of our decisions as if we make any of these decisions lightly. I sometimes wonder if I am the only mom of a child with Tay Sachs who goes back and forth in my thinking so much. I wonder if the road is much clearer for others.

We want Carmen to be comfortable. We don’t want her to suffer. We look at her quality of life and think that she will be so much better off in Heaven. And honestly, we are all tired. This is an emotionally and physically exhausting journey. But, then we look at her and realize that this little person has had a more profound impact on us than anything else ever could. We are grateful to her and we want to make the best decisions for her. She is our daughter.

This picture has nothing to do with any of the above but made me smile today.

Hope and her daddy

Comments (3)

By Lana, May 21, 2010 10:14 am

As many of you know, Dave’s older brother Wes has been through quite a lot lately. He underwent a kidney donation from Steve, the youngest brother, a few weeks ago. After a few short days, the kidney died. Wes continues to struggle with a great deal of pain and sickness. So, today, please pray that Wes has a fabulous birthday! To leave Wes a birthday message, click here.

Oh Happy Birthday to you,
oh Happy Birthday to you,
every day of the year
may you find Jesus near
oh Happy Birthday to you,
oh Happy Birthday to you
and the best one you’ve ever had!

Happy Birthday Wes!!!

Here is a picture from a few years ago, with Wes sporting a pink tutu.

Dave took this picture of Wes. Definitely a Dave-shot!

***

Carmen update: Yesterday was Carmen’s 46 month birthday. Carmen will be FOUR in two months. Carmen has been struggling a little bit with oxygen levels going up and down lately. And quite amazingly she gained weight on 300 calories per day. She did lose one pound but then gained some back. Amazing. I guess she has the same problem that most of us do…her body adjusts to the new low calorie regiment and refuses to lose weight! I am going to talk to her pediatrician about possibly reducing her calories more.