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 (10)

By Lana, May 1, 2010 7:47 pm

We are often asked, “How is Carmen doing?” We never know quite how to answer that question. If she has a respiratory infection then we say that she is sick. Or if she has an eye infection we might mention that. But, most of the time, we just say, “Carmen is doing well for Carmen.”

Carmen has days when her oxygen is low, 90% or so, but she usually bounces back without extra medication. She has days when she is congested and needs Robitussin to help thin her secretions and extra nebulizer treatments and suctioning.

We put her on a “diet” a week ago and she has lost one pound. We reduced her daily calories to a little over 300 and her total fluid volume to about 800ml. Already, she looks less swollen and puffy. We think she could lose about 5 lbs. and be at a healthier weight. All that extra weight can’t be easy on breathing, something Carmen has struggled with for two years.

Carmen still has loose stools but not every day. In fact, she sometimes goes 2-3 days without pooping. This is quite different from her C-diff days of constant diarrhea! (We do not miss those days.) We’re not quite sure whatever happened to the C-diff. We stopped treating it after multiple antibiotic treatments failed. Somewhere along the way, the constant diarrhea stopped.

Carmen also has bouts of very low temperatures, as low as 92 degrees. On the other hand, she often has low-grade fevers, 99 degrees or so.

Despite all of this, Carmen IS doing well for Carmen.

Strangely, Carmen seems to do better in the fall/winter/spring and then gets hit hard with pneumonia in the summer. I might expect that if she was from Antarctica but the Guatemalan girl really should be able to tolerate a Maryland summer!

Here is the “new” Carmen, one pound down!

Comments (19)

By Lana, April 7, 2010 11:37 am

Easter Sunday was a glorious day. Sunny skies and mild temperatures. After Easter dinner (which turned out pretty horrible because the ham I bought was gross…ham should not be the consistency of mashed potatoes!), we packed up and went to the park to take pictures. I’ll post some of those pictures over the next few days but wanted to start with this one of Carmen.

Dave and I had the same emotional reaction to this picture. Tay Sachs has taken so much from Carmen.

Carmen is lovely. But her eyes have lost their sparkle.

We know that the instant she passes from this life to the next, she will be free from all sickness. She will run and laugh and play.

Are we keeping her alive for us or for her?

We ask for your prayers. We need so much wisdom that we don’t possess.

Comments (1)

By Lana, March 9, 2010 6:30 am

Last night, Molly Grace went to be with Jesus. Molly had Tay Sachs and was six years old. If you would like to leave her family a message, click here for Molly’s site.

I have always been inspired by Molly’s mom and dad. They took care of Molly with no nursing care help. I often prayed for strength and rest for this family. Today, I pray for comfort.

Molly with her mom

Comments (7)

By Lana, January 26, 2010 7:17 pm

Elise, a six year old with Tay Sachs, is not doing well right now. Her dad posted this on her caringbridge site today:

I hate to write this, but we need to.  Elise is doing really bad now.  Her O2 sats are not coming up, and she is severely anemic.  We can’t do much else for her now except keep her comfortable and prepare for the end.  I wish we didn’t have to let her go, but it has to happen, I guess.  We’ll let you know what happens as time progresses. She’s on oxygen and just had some morphine to help calm her.   —John

Elise’s 7th birthday is a week from Friday. Please pray for Elise and her family. I am praying that Elise will pull through this and her family will be able to joyfully celebrate her 7th birthday. And I’m praying that Elise will be comfortable and that her family will feel God’s love, comfort and peace.

Update Tuesday night from Elise’s parents:

With an aching heart…Elise officially earned her angel wings at 7:07 p.m. She was being held by John and I as she took her last breath, surrounded by her loving family and friends. Rest in peace Sweet Angel.