Life is wonderful and difficult... and I am grateful!

Friday, April 29, 2011

Circles

First of all, I haven't been blogging as much as I was in the past. I found out that people who I never expected would know about my blog not only know of it, but are reading it. This makes me feel vulnerable. Too vulnerable, perhaps. It is much easier journaling when I don't know who is reading this; when I can write assuming no one is reading it. I am sensitive to judgement and feeling exposed.
Some are asking for an update on Liz. She is home and doing better. She is still not well, as she is fighting the infection. She is very tired, which she admits- she NEVER admits being tired. Or, I should say, she never used to be tired. Fighting such a nasty infection can make anyone tired. Add in her trying to get back to her normal activity level quickly after 8 days of virtually zero activity, and also being on a medication that can cause drowsiness, you can get a picture of how tired she is.
She was out of a diaper for the first time today. She had to use them because she wasn't making it to the bathroom in time - part of CDiff. She wouldn't appreciate me sharing this with anyone. Having said that, she at least has had to wear them before after surgeries or previous bouts of CDiff, so it wasn't a bother to her to be in them this week. Her little bum can still fit into size 4/5 Pull-ups, so there was no trip to the store needed. I just got out the unused stash I had leftover from Jackson and pretended like it wasn't a huge deal. Sweet girl.
She had two nights of fevers this week, which had been gone for about 6 days, so yesterday the doctor asked to see her. She had labs done and the GREAT news is that her platelets and hemoglobin have gone up! A big deal, as they were still low on the day of discharge from the hospital and since she'd been having bleeding and both counts have to do with bleeding, it was important we saw the counts going up rather than down. She is excited because her platelets are in normal range and this means she can ride her bike and scooter again (they had been low enough that the doctors told us she had to keep both feet on the ground until they went up).
She has 9 days left on the antibiotic. Today I tried taking her off of her Zofran - the anti-nausea med. she has also been taking-, but that proved to not be a good idea, so she's back on it.
So the plan is to stay on the meds, let the antibiotics do their work and have her rest. Hopefully she'll be well enough for at least a half day on Monday of school. She will see her GI doc on Thursday and at that point he'll talk to us about a plan to try and keep her gut healthy so she doesn't get yet another case of CDiff.

I am exhausted! Physically and emotionally. As I expressed to some, Walter and I have had so much stress as the medical bills seem to be drowning us. I had the nerve to ask Walter how much we owe in medical bills for Elizabeth (bills that have accumulated) and I was shocked at the amount. He estimates - without sitting down and adding up the bills we know of and the ones that are sitting in Collections- that the number is around $20,000. We make enough to pay for our insurance and for a horrible illness or hospitalization to occur and us be able to pay for. But, 10 years into Elizabeth's health issues, it is just too much. I know the medical bills upset him the most as he is the provider for our family. Also, those who know him know how frugal he is. To be in debt over something we cannot control drives him crazy. It is just so hard to get ahead of it because it doesn't stop. Co pays alone are $45 for office visits. Her labs and procedures mount in cost. Even with insurance the bills add up. Sigh. For years it has been a burden that Walt and I don't talk about with others because it is just too overwhelming. This week, though, a dear friend talked openly with me about it and so I was forced to have another of the conversations with Walt that we both dread. On Monday I will try, once again, to find a loophole that will allow Elizabeth to qualify for CCS, a medical coverage option for children who qualify either by income (we won't qualify based on the fact we make too much) or diagnosis. It just feels like going in circles.

On a happier note, after Liz's appointment yesterday I took her to Luan's Dress Shop to choose a dress for her Most Inspiring Student dinner/reception. Of course she was beautiful in the dresses she tried on and I started to cry as I watched her twirl, smiling, in the dress she chose. She's been going in her own cirlces of feeling well and then being sick and rounds of tests and appointments for so long...and still, she twirls.
How can I not do the same, or at least try to.

Tuesday, April 26, 2011

Liz plays a mean game of Candy Land.



A butterfly sent to her from Holly. Liz LOVES it!




We came to the ER with only my purse...and Liz accumulated all of this.




The garden outside her window. Liz hung a butterfly wind chime in this garden 5 years ago after a hospitalization...and it is still there!




Nurse John, who made her smile many times while showing her magic tricks




Kate and Liz were all giggles during Kate's visit









My brave girl, who other than wanting to go home, did not complain ONCE about any procedure or poke or painful exam.




After 8 days of not being able to leave her room, the fresh air felt so good to her!

Saturday, April 23, 2011








Megan is the best. Not only did she color eggs and decorate cookies with her girls and Kate and Jackson, she cleaned it all up and brought it to the hospital to do all over again with Elizabeth! So fun.




What a happy room!





We are all ready for the bunny in room 235!

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I LOVE Easter. I love going to church, I love what the day really means, I love being with family and friends, I love that it feels like Spring on Easter Sunday. All of it makes me happy. Boo for missing out on it tomorrow. Elizabeth actually has spent a birthday in the hospital (her 6th) so spending a special day in here is not new for her. Liz is still in isolation and cannot participate in the fun things the hospital is doing, so Megan brought the fun to her this afternoon.

I am SO exhausted. I am also moody and short tempered. Both of us are. For the past 4 nights, Liz turns into a disrespectful, naughty girl at about 8:00pm. I know she is tired and feeling caged, as she has been in this same room, on isolation and unable to walk past the doorway, for 7 full days. Tonight I left for 2 hours to go to dinner with Walt and to Target for Easter things. Target had not one bag of plastic eggs left. Not one! I finally asked someone and ended up pleading "Please look in the back. My daughter is in the hospital and I NEED eggs!" I realized I had the same sass in my voice as Liz has had in hers, out of exhaustion and frustration. The employee looked at me like I'd lost my mind.

So, the long and short of it, since so many are asking, is this: One of the first days here her urine was tested for infection. It came back positive. They retested it and that came back negative. So odd. SHe was started on an antibiotic. After two days, they decided she hadn't had an UTI afterall and stopped the antibiotic. They kept looking for infection, knowing she had one somewhere based on pain and bloodwork.
She has had her stool sample tested 4 times for CDifficile. Yesterday's sample came back positive. So, she was started on an antibiotic for that. She's had CDiff 4 times before (after surgery and being on an antibiotic). Her GI doc told me today she is his only case of a child with so many times of reccurring CDiff. There are only two antibitotics used to treat CDIff and I worry about her building a resistance to them and then not having something to use the next time she gets it. There is a scale of how "bad" CDiff can be for someone. Obviously bleeding isn't good. That is a sign she's developed colitis.
Her labs from today show her platelet count has dropped again, so tomorrow she will have repeat labs to check that and some other counts that were abnormal. They are watching her bleeding (with stool) carefully.
I am leaving out a lot. Motly because I am too tired to recall it all and the order in which everything happened. I DO know that I can't believe whe have been here this long.

I am praying there is a chance we can be discharged tomorrow afternoon or evening. That would be SO great. After 8 days here, we need out! If Eizabeth's fever stays away, she is able to eat and drink more (she still has the iv), her pain is manageable and her bloodwork looks better, that may be a real possibility!


Wednesday, April 20, 2011

Wednesday update

Oh for the love of it, we are still here! It's been 5 days and gosh, do I look it!Today is Wednesday, the day of the week I parent mentor here at the hospital.... how crappy to be on the other side of the bed right now. My mom brought Jackson to the hospital for me to spend some time with him and I couldn't get enough of his yummy hugs and kisses. Walter has been working this week and my sister has been a Saint caring for Jackson and Katie while he's gone. He doesn't work a normal 8 hour, 9-5 shift, so she has been doing dinner, homework, baths, all while caring for her own kids. What would I do without her?! My heart is torn with missing the kids and sadness when Kaitlin cries for me, but I do not worry when they are with her and that is a gift!
So, there have been a lot of bodies in and out of Liz's room today. Her surgeon came in to examine her, talk and then view the CT scan results himself. He has cared for Liz since she was 4 months old and literally knows how she looks inside from chest to tummy. That is all his work in there and so he has always treated her almost like his own 9 year project...except he also brings the personal care of a kind father-like physician.
Her GI doctor is back on-call starting today which means he will be caring for her. It was a relief to see him! Other doctors have been great, but he has been caring for Liz since she was 7 weeks old and knows it all when it comes to her. He spent an hour and a half (!!!) with us. He chastised me for not calling him from the ER to let him know she was here and is trying hard to "fix" her. He is such a kind and thoughtful man that he told me, in private, that he wanted to talk to Liz about things because he cares for her so much and she is one of those kids who has forever-touched him. And he did... he told her how she mustn't associate this illness with the Grand Prix and how special of a day that was for her (she got sick hours after that). He knelt beside her and added that she shouldn't ever worry about her tummy...to leave that to him.

So, without going into detail with everything else that has been said today, here's the summary of what is happening now: She will have an ultrasound of her kidneys and pancreas tonight. She developed left-side back pain on Monday and it has worsened along with her abdominal pain. Both on the left side, primarily. She has more labs drawn about an hour ago to check her counts and about 13 other things.
They are saying there is infection somewhere...we just need to find out where and what.
It seems nothing is ever easy when it comes to her case.

For now we still have a private room, as one of the things she's being tested for is contagious (by stool). Until we rule it out, she is stuck in isolation. Isolation is nice because of privacy ( I HATE sharing a room, separated by just a curtain!), but it also means she can't leave this room. Not even to walk the hall. After 5 days in here, she is tired of looking at these walls. Since she is not feeling super great though, she is not fighting it.

Thank you to those who think of us, pray for her and send messages!!


{Umm, who besides Zsa Zsa Gabor and Mariah Carey wears a sleep mask while in the hospital?}







{Crashed, as I write this. She had a burst of energy this afternoon and crashed hard. That cute bunny Pillow Pet was a gift brought to her this morning by her school counselor and principal. So sweet!}

Tuesday, April 19, 2011

Update!

I thought we would be home by now. Goodness, I didn't think we'd be here in the first place. I am exhausted and have repeated this update 10 times already, so this will be short. I wanted to post an update though because SO many of you have been so faithful in prayer, supportive and caring. Thank you for that, truly!
Liz still has tummy pain, especially on her left side. Since last night she's also developed back pain on the left side. She was off Morphine, then of the Tylenol with Codeine, but today went back on that. Her CAT scan shows that her organs look good! That is great! It does show, though, an excess of fluid collected in her pelvis. There could be a couple things causing this and they are testing to figure that out now. What they do know is that she has infection. Her urine shows a bacteria that isn't usually seen, she's started in antibiotics for that and they are already retesting her urine. GI is trying to figure out if her stomach pain is being caused by something else or by the bladder infection (her pain is not where is "should be for that, it is higher). She's also being tested for Cdiff. She has had it in the past after being on an antibiotic or having surgery. They are also testing her stool for other things. Today felt like taking a few steps back as her pain increased and her appetite decreased. She's still on the iv. Her pediatricians, GI and Hem/Onc are all caring for her.
The dietitians also tried to start her on a nutrition supplement, but it is disgusting and she refuses to drink it. That is something we'll have to figure out, as most of the good tasting supplements have too much sugar in them for her to tolerate given her Dumping Syndrome.
So, we're waiting for tests and watching her pain. Oh, and I have decided I cannot live on a deserted island, alone, with Elizabeth Claire! Actually, I could, but we'd definitely need separate huts!
We appreciate all of you who love her so much!

Sunday, April 17, 2011

Show me the money!

Elizabeth is AMAZING. Seriously.....
Before her CAT scan she had to drink 12oz of a disgusting contrast. It would be hard enough to do on a normal day, but given she has been wretching and dry heaving and feels so sick, it seemed an impossible task. For many it would be impossible. Not for Liz. She is so strong, she did it. She has always had this amazing self control when it comes to doing things we ask her to do to her body. I literally had images flash through my head of her giving birth or talking herself through a scary experience....she can do anything.

This was her face after her first sip...




As amazing as she is everyone needs some motivation....tonight, hers is money. I cheered her on (literally with a song and dance) and Walt waved money in her face. I counted and coaxed and told her ow very strong she is and how proud I am of her.



.... and she did it! Super nauseous and in pain, she got down 12 ounces of yuck! Now we wait two hours and then she goes into the CT machine...which may cost me another $30!

Sunday, April 3, 2011

Takes my breath away...

Elizabeth has had a goal of growing her hair long enough that it reached her bum. She's just about there...and so very proud.




Oh wow. My Elizabeth is amazing; her faith is amazing. Tonight she came to me and asked if I could play the song "Blessed be Your Name." I have mentioned this song in a past blog. I love it and so do the girls. Today we heard it in church and I am sure that's why it was on her mind tonight. I sang a bit of it { Every blessing You pour out I'll turn back to praise. When the darkness closes in Lord, still I will say blessed be Your name. Blessed be Your name on the road marked with suffering. Though there's pain in the offering, blessed be Your name} and asked her what she thinks the words mean. She immediately answered "it means that even if you have bad times or go through really bad stuff, God is with you and you should always remember that." Then she said "This may sound dumb (oh my Liz, if you only knew how smart you sound), but I know that God gave me my surgeries to show me I can trust Him." It was so matter-of-fact I actually (shamefully) said "do you really think that Liz?" before I told her that I am so proud of her.
You must know how Liz has grieved for her situation at times and how she has even said that God loves Kaitlin and not her because she is the one who gets sick. BUT, my Liz has a faith that runs deeper than many adults I know and it only gets STRONGER over time; stronger with every procedure, surgery and diagnosis. Tonight she took my breath away.
My little Jackson with his "Swimmer Jackson." Jack was so excited for his school Open House. He asked a million times over a week if it was "tomorrow yet." He didn't eat dinner as he said he was too excited to show us all his Under The Sea themed classroom and all he'd created.





Look at all the cute "Nemo" fish. Neatly painted black and white stripes. All except for the one Nemo in the upper center...




....that's Jackson's. Swirled paint and the eye stuck on the backside of Nemo! Um, maybe he isn't as artistic as I thought.




All of the other sea anemones had their spikes scattered. Check out Jack's in the center of the photo...he just took the clump of toothpicks and plopped them in one spot. SO artistic, ahem, lazy (or just a rushed little boy in a hurry to play, if you ask my dad for his analysis)





My little Monet redeemed himself artistically. Doesn't this look just like a whale?! He added a fin!





We should give the teacher a bonus for having these two together in her class.




Jackson and his beautiful, patient teacher.