Sunday, August 21, 2011

It is exhausting

Yesterday, we celebrated TRex's birthday. As I alluded in my last post, I was very busy all last week with work and preparing for that party. I promise, I will post pictures and show what fun was had. But that will have to wait until later.  Today, I'm exhausted.

I'd like to say I'm physically exhausted from my crazy busy week at work, lots of extra time spent on putting the birthday party together, little to no sleep, and the zillion extra obstacles sent our way (like a dead battery when all we wanted to do was get the melting down children home or arriving home find trees on top of houses and people looking around lost--remnants of a huge storm that luckily did little damage to us). I'd like to say that is what has me exhausted. It did. Last night. I couldn't keep my eyes open to eat dinner. I was bone tired, but slept well for the most part.

None of that plays a role in this exhaustion. Today, I'm mentally exhausted. Today, is one of those days I want to roll into a ball in the corner and cry.

Yesterday morning, on the way to TRex's birthday party with Ma, the Dancing Queen vomited in the car. We didn't think much of it because we all thought it was probably excitement for the party. It had been built up huge all summer. And DQ did have a slightly runny nose while we were there, but we were swimming. That happens.  And she seemed totally fine otherwise. She ate (that's huge), she played, she had so much fun.

We started to get concerned near bed time, but DQ was fine. We checked her ears. They were fine. She slept fine. But, this morning, DQ had a runny nose. We went to breakfast at our favorite place because our house was empty of food. DQ took her first sip of juice and we were done. I tried to run out of the restaurant with her, but we didn't quite make it. Maybe 10 feet from the door, all of the mucus came up and out over my shoulder, down my back, and a little on her. We ran into the rain, DQ crying and upset.

An hour and a half later, we were home, playing and I went to move DQ's hair from her face. I couldn't. Her ear drum had exploded again. There was blood and gunk streaming down her cheek and into her hair where this morning it had been fine.

The Dancing Queen has an ear infection. Again.

Perhaps this seems tiny to you dear readers, but to us, this is just one more in the a long line of ear infections. DQ saw her ENT not but 6 days ago. The last ear infection from a couple of weeks ago was so bad that it burst a hole in her ear drum and knocked her third set of tubes out. The ENT ordered us to keep her ears healthy until he saw her again in 6 weeks when he would planto put the 4th set of tubes in in less than 2 years. I guess we failed there.

We have lived this same scenario: the vomiting, the ruptured ear, the pain, the crying, so many times. I no longer have count.  The Dancing Queen has been on antibiotics continuously since October 2010 (and before then, fairly regularly as well, but I use her last open hear surgery as the cut off since she was healthy then). For a couple of months, there was talk of putting her on IVIG (donated immunoglobins to up her immune system), but her immunologist changed his mind and didn't think it would help. Now, DQ just goes through course after course after course of antibiotics. And her left ear drum continuously gets damaged. And my poor baby cries because of the pain and she cries because of the things her illnesses deny her.

Today, she cried her heart out because she wanted to eat at our favorite restaurant (even though she wouldn't have eaten a thing). We had promised. We were there. We had to leave. And DQ knows why. She feels like she is being punished for being sick. We try so hard to not let her feel that way, to let her know we are not angry and that leaving is not a punishment, that we will go back when she is feeling better, but she is 3 and doesn't understand. My heart breaks a little more with each of these instances because as she gets older, she understands more and more.

I've watched my daughter endure so much pain, so much suffering, so many tests, procedures, and surgeries. I've held her as she vomited continuously because her digestive system was too slow because of heart failure. I've held her down so she could be poked and prodded. I've signed off on slicing her open and spreading her ribs. I've stood there looking at her scared eyes as dozens of doctors and nurses have worked over her body. All of that was so very hard to do, but each instance was finite.

With these ears and this pain and suffering, it is continuous cycle. It is always there. How much longer can we last? How much more can a little girl take?

A week ago, I found the notes that were taken during the multidisciplinary conference right after we had been given DQ's initial diagnoses. In those notes, the geneticist wrote that hearing loss is common for people with DiGeorge Syndrome due to boney anomalies in the ear or frequent infection.  Frequent ear infection. Is hearing loss next?

When will the Dancing Queen catch a break? Can't we have one month without pain? Can't we go three weeks without antibiotics? Can't she feel good for a moment?

5 comments:

  1. Many hugs to you and DQ and prayers for a break.

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  2. This is so heartbreaking. Hugs.

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  3. Sending healing thoughts for the Dancing Queen. Don't like to hear what's going on in her ears.

    I like the new look and think the header is most appropriate.

    Best,
    Bonnie

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  4. {{{HUG}}} Poor DQ and all of you. Praying!!

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Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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