Sunday, September 15, 2013

Zoya's First Hospital Stay

It's been a long couple weeks around here. Poor Zoya got sick almost two weeks ago with petechiae and vomitting. We kept her out of school for three days thinking it was a bug. She seemed to start to get better, and then worse, and back and forth. We thought maybe she had a UTI with some of the symptoms she was having but her test came back negative. A week after she got sick we noticed the petechiae was much worse and she had lost two pounds. If you're a mama of a precious one with DS, weight loss plus petechiae plus sick equals THE BIGGEST SCARE OF YOUR LIFE. Thursday morning we took her to the doctor and they ran some tests including another urinalysis. We waited in complete anxiety for 36 hours (after being told it would only take 2 hours for the bloodwork to come back). Seriously, people, I've never been so sick with worry in my life! Thankfully her CBC did not point to Leukemia. I cried with such relief, okay I sobbed. With the results of the bloodwork, they thought it was mono that was making her so sick. Right after we received that news, Zoya slept for 14 hours straight, woke up for a few hours to eat, then went back to sleep for 4 more hours. Mono made total sense, plus, hey we could TOTALLY rock Mono. Afterall, we'd spent 36 hours in agony worried sick that she may have Leukemia. Praise the Lord we're not walking down that path...so many emotions there for another post. We will follow up with a hematology appointment to check for blood disorders due to the way the petechiae presented itself (and has in the past with other minor illnesses). 

At the doctor on Thursday. Her poor little eyes just didn't look right :( 

By Friday night she was just not right :( 


And Saturday morning after sleeping 14 hours she looked as if she didn't sleep a wink :( 

Upon waking yesterday her fever had gone up to 104, she was collapsing in pain and grabbing her knee crying. She continued to complain of a belly ache and was going on her second day of hardly eating or drinking. Her limbs felt like they were on fire. She was just getting worse instead of better. We just felt like something was NOT right, even if she DID have mono. Zoya is rarely sick and bounces back pretty quickly when she is. After calling the on call doctor they suggested we take her to the emergency room. So off we went. 


AT the ER they said that her previous bloodwork did NOT point to a current infection of mono but it's possible she was exposed in the past. The initial bloodwork they did in the ER showed a pretty big jump in her WBC count since the day before and high bands and inflammatory markers which likely meant an infection somewhere. They decided to start her on IV antibiotics and wait for more lab results.  She was admitted and started on IV antibiotics and fluids. 30 minutes after the antibiotics went in she was much perkier...is that possible? I'm going to say YES since it was such a drastic change. At that point they had not even started the fluids yet. They're still waiting on some of the labs, but at this point are treating her for a UTI. Are we convinced that is the source of the infection? No, but, we do know the IV antibiotics are working. They decided to keep her again tonight to make sure she continues to trend in the right direction. So Shawn and I switched off and he is at the hospital with her tonight. 

Here she is after she finally fell asleep last night. We got up to her room around 11 and she fell asleep around midnight. I tell ya, hospitals are NOT a good place for people who need sleep HAHA! 

Zoya learned to yell "NO OWIES" to everyone who entered the room (and Shawn says she's still doing that). She tried to get people to promise they wouldn't give her an owie before she let them near. The sweetest part of all is that she repeated, no less than 30 times, "always safe with Mama" to reassure herself ! She also decided that the only way she'd listen to directions from the nurses and doctors was if we pretended to speak as if we were cookie monster, holding cookie monster up, as if HE were giving her the directions, then it was fine LOL. Hey whatever works, right? :)


Here she was this morning. She's still not quite herself, but starting to cause some trouble, so we are really hoping that means she's on the mend! 






I tried to take pictures over the past couple of days (although bad cell phone pictures haha) with intent to make her a picture story. Zoya tends to have a lot of anxiety around doctors, and I don't blame her. She actually did REALLY awesome and was so brave this time around! But anyways, my plan is to make her a little story about what happened to help ease her anxiety about what she went through and hoping that if she should ever end up in the hospital again it won't seem as scary. 

Thanks for your prayers as Zoya continues to recover. So tough seeing my girl so sick, but I believe she's doing MUCH better now and hope it will continue! We are counting our blessings because we know the alternative diagnoses would have been much worse! Perspective is a beautiful thing. God uses times of trial to bring us to deeper understandings and for that I'm thankful! 

18 comments:

  1. So sorry to hear that Zoya has been so ill and I do pray that she is on the road to recovery. A parent feels so helpless when their children are ill no matter their age. Let us hope this will be a short hospital stay and that she will soon be back home with her sisters and parents.
    Sarah and Shawn do take care of yourselves and each other. Carol

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  2. SO glad she is doing better. She looks so pitiful in those first pics! Hope everyone sleeps well tonight.

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  3. Oh sweet Zoya... continue to feel better sweetie. Sending prayers your way. How scary.

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  4. So sad to read that Zoya has been so sick:( That must have been so very scary for you and your husband. So thankful that she is doing better now. She will be in my prayers. She is such a lovely little sweetie and she is very lucky to have a family to advocate for her and surround her with the love she deserves. Can't even begin to imagine how she would have made it thru a sickness this bad in an orphanage.......

    Susan from Boston

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  5. Poor baby girl! Hopefully she's on the mend. Prayers.

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  6. We are very sorry that Zoya is so sick! Our family will be praying for her. We have been down the Leukemia road and understand the fear you went through. Amy

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  7. Oh dear, I will definitely be praying for Zoya!

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  8. Oh, Sarah! My heart jumped into my throat when I came to your blog just now to see what's new with my favorite blogger and family. I have to look up that "p-word" illness cause I have no clue what that is but I have to say in all this time reading your blog I've NEVER seen beautiful Zoya look so sick!! I certainly will pray for your precious girl and would love to be able to send her a get well card/treat! So awesome that she is able to reassure herself using her "always safe with mama" phrase! Sending you all love and prayers from a friend in Maine! Lori

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  9. Oh, Sarah! My heart jumped into my throat when I came to your blog just now to see what's new with my favorite blogger and family. I have to look up that "p-word" illness cause I have no clue what that is but I have to say in all this time reading your blog I've NEVER seen beautiful Zoya look so sick!! I certainly will pray for your precious girl and would love to be able to send her a get well card/treat! So awesome that she is able to reassure herself using her "always safe with mama" phrase! Sending you all love and prayers from a friend in Maine! Lori

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  10. Precious girl!!! I'm so thankful that she seemed so much better when you posted. Praying that today is even better and that she is homeward bound if not already there! It would be nice to have some definite answers but feeling better and big smiles work too!! (((BIG HUGS))) for you and your sweet girl!!

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  11. Something to consider (a little girl on another blog I read was just diagnosed with this and Zoya's symptoms made me think of it.)
    Henoch-Schonlein purpura
    Rash (purpura). Reddish-purple spots, which look like bruises, are the most distinctive and universal sign of Henoch-Schonlein purpura. The rash develops mainly on the buttocks, legs and feet, but it can also appear on the arms, face and trunk and may be worse in areas of pressure, such as the sock line and waistline.
    Swollen, sore joints (arthritis). People with Henoch-Schonlein purpura often have painful, swollen joints — mainly in the knees and ankles. Joint pain sometimes precedes the classical rash by one or two days. These symptoms subside when the disease clears and leave no lasting damage.
    Gastrointestinal symptoms. Many children with Henoch-Schonlein purpura develop gastrointestinal symptoms, such as abdominal pain, nausea, vomiting or bloody stools. These symptoms sometimes occur before the rash appears.
    Kidney involvement. Henoch-Schonlein purpura can also affect the kidneys. In most cases, this shows up as protein or blood in the urine, which you may not even know is there unless you have a urine test done. Usually this goes away once the illness passes, but in a few cases, kidney disease may develop and even persist.

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    1. Thanks! I have been researching this and it sounds a lot like her! I'm going to ask the hematologist about it when she has her appointment!

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    2. Do you have that blog so I can check it out?

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  12. Thoughts and prayers for your family and especially Zoya. She looks so sick but we know you are giving her lots of love and attention. Get better soon little one!

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  13. Oh Zoya I hope you are feeling better. You are just the most adorable little girl! Wishing you smiles and joy. Hugs

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  14. Praying for Zoya to get better soon!

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  15. Your readers are anxious to hear how sweet Zoya is doing. How are Mila and Sofia doing with Zoya being ill? Carol

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  16. Sarah, just wondering how Zoya is doing? Also, how are YOU and SHAWN holding up? I hope and pray your sweet girl is feeling better. Hugs and prayers, Lori

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