Wednesday, October 21, 2009

It continues....

Where do I begin? Our nightmare is never-ending, I swear. I really feel like a black cloud is just over me...bad luck. Some of my friends would agree. Last night, Carly got really sick. I mean REALLY sick to the point where we were seconds away from throwing her in the car and heading to the hospital, our favorite place. She was coughing, but not too crazy, but she just could not get her breath. She would just gasp and gasp for air, almost like someone was choking her. Popsicles and cool water...and Jerad and I having her between us in bed all night. And Motrin. I just kept telling Jerad...we just have to make it til morning. All the while, Ally is still hooked up to fluids and needing us too. We did not sleep much.

Jerad was waiting at the doctor's office when they opened with Carly in his arms, still dressed in her pajamas. He told them our situation at the front desk...about Ally....about the urgent need to figure out if Carly had the flu, etc. He said they almost turned him away, but someone went and asked the other doctor there...and they let them back. They did test her for both flus (A and H1N1) but the doctor felt she had croup. It was easy to hear the stridor and see her difficulty in breathing, so they had to go to Children's for a chest x-ray and also a throat x-ray. Croup shows up in the throat as it constricts the airway and the vocal cords. It turns out the doctor was right...it was confirmed by the x-ray. They called Carly back into their office this afternoon and gave her a shot of Decadron (this is a steriod that Ally also takes) in the leg and she was also given a breathing treatment. Afterwards, she sounded better almost instantly and they got her oxygen level up to an acceptable level of 95%. We had a very scary incident with Evan having croup once and spent Christmas Day in the hospital. Earlier this evening the doctor's office called to check on her and also informed us that both of her flu screens were negative. That's good news.

As Carly was getting all this done, Ally went back to the clinic to be reevaluated on her methotrexate level. I was certain that her levels would be low enough. We were almost two days later than the last cycle. She has to be beneath .1% but the test came back at .64%. This was quite worrisome to me and they don't know why it is taking her kidneys so much longer this time to rid her body of the methotrexate. The doctors know I am upset...I know that having the chemo in her body too long can cause organ damage. But there is nothing they can do to speed it up. They did discuss doing a kidney test before she goes in to have this chemo for a fourth time on November 1st. They need to make sure that her kidneys can handle it. When Ally was first diagnosed, they told us that this would be a particularly hard time for her. It wasn't so bad the first two times, except for the inconvenience and isolation of the hospital. But now I know what they were referring to because she does not feel well at all. Not eating, not moving, not happy, not talking, belly ache, tired....I just feel so bad for her. I want to take it all away. So again, AGAIN, we are toting around the large bag of fluids. I carry it everywhere for her....it is sort of like having a baby again. And she is due back to the hospital for the 7th day in a row tomorrow.

The doctors wanted Ally and Carly to be in separate households. They don't want Ally exposed to these germs. While this is possible, we decided to isolate Ally here in our own house. It is just too hard on everybody to split up and we are fearful that one of us could still be making a night-time trip to the hospital and we do have a third child to take care of too. (sorry Evan) We barricaded Ally in her room upstairs with Evan...Jerad even put a TV in there. Carly stayed on the main level. We are going to try to keep it this way, but we do need help. I can't leave either one of them alone right now. I do have some help coming tomorrow. I hope I can manage it all.

So my worry went from Ally to Carly, back to Ally. I physically cannot worry anymore. I feel like I am just falling and never able to catch myself. Everything is building up around me, I hate the mess, I am lysoling everything....I haven't had even five minutes to catch my breath without someone yelling "Mom". It's rough. Everyone needs some downtime and we are just not getting it. At all. We have even been eating all of our meals while standing up and/or taking care of someone.

Every week I keep telling myself...this too shall pass...and it does...but then something else comes up. Nothing ever passes completely, we just move on to the next crisis. We just got over the stomach flu with her, back to the hospital, now this. Here I am worrying about her kidneys...and Carly breathing. I hope we get to sleep some tonight so that we can make it over this next hurdle.

Finally, did I ever mention this, I don't think I did: WE RAISED $40,000! We passed over the 4G mark last week. And that is just awesome.

7 comments:

  1. Janel,
    Please send out the "Bat Signal". What can the Army do? Food? Errands?
    We are all praying.
    I can tell from the post how, frazzled you all must be.
    Hugs
    Mary

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  2. Continued love and prayers to your family Janel. Hope Carly is on the mend and the germs stay away from Ally.

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  3. Hang in there Janel. I continue to keep praying for your family. Having been through this with our daughter, I know how it feels, but you will get through this and Ally will be cured. (my husband was the king of the lysol! he sprayed our entire house every morning and evening. He also did his entire office where he works. I'm a firm believer in lysol. It seemed to work for us.)

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  4. Janel, we all wish we could make this go away. All we can do is continue to pray for strength for you and the whole family. There are many prayers floating around out there for the Barnetts. Just picture all those prayers hovering around you. Things will look brighter soon. Love you.

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  5. Oh, Janel, I feel for you. Just the croup is enough of a stress, but on top of everything else...There is a lot of love around you, I hope that brings you comfort, and I pray for a better day today.

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  6. I am so sorry you are dealing with so much more than just the hassle of cancer treatment. I feel like I don't get a break, but you've got 3 kids. I don't know how you do it. I am not a fan of the saying ...this too shall pass... because like you said, something new pops up after the last episode ends. Praying for you all.

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  7. I don't really know how much more you and Jerad can take. Jennifer always says I am the glass half-full person so I'm trying very hard to help you see positives in your situation. It was very good that Carly did not have the flu even though she did have croup. I know Jacob (my grandson) gave us a real scare last week. We took him to the doctor worrying about H1n1 symptoms and it turned out to be two ear infections - and we were glad. When would you normally be glad to have ear infections except in this scare of H1N1 flu? Also, you have such wonderful people around to help you if you need it. I'm praying for you to get some rest and evveryone to feel better. You also have that awesome strength from a very special angel.

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