Quite a long November

[babyblue21]

 This whole month has been the hardest this year. My husband and I have gotton probably about 24 hrs of sleep with in the last 3 wks! Through it all though we have become closer and stronger as a family and as husband and wife! It all started Oct 24th, Zoe got sick. See with our daughter, who is 21 months, has cyclic neutropenia (previous journal) so when ever she gets sick it is extremely important that she has a CBC done ASAP. So of course off we go and her neutrophil levels are low but within range which is good and she is diagnosed with an ear infection. But see it didn't stop there. She continued with a high fever fluctuating between 102-103, then a wet cough (mind you she also has asthma), and now diarrhea throughout the week. So of course back to the lab we go, which we are immediatly sent to Urgent Care (her labs are always STAT). She was swabbed for H1N1 and they began atenolol to try and decrease her heart rate which surprisingly is 164! This little swab comes back positive! My little girl is now diagnosed with H1N1, and being immunocompromised due to the neutropenia she is at high risk. Hours later we are released and sent home. Things start seeming to look good with in 4 days but she still continues with the high fever, chronic productive cough, and diarrhea this began the first day of being admited at Children's Hospital. By last Sunday at 1am things got a worse. She started vomiting, still able to hold things down and her labs actually look good. We all figure well most likely she also contracted a stomach virus. Monday morning she seems a bit better few vomits and there. By Monday night we're back to vomiting. All night she cried in pain, her back was hurting her. Dr's are coming in and out, nurses are trying to help ease the pain. Her IV blows in her left arm causing the saline to rapidly infiltrate and her left arm began to swell! It was the size of her thigh!! That IV is stopped and she began dehydrating so quickly that her peripheral veins are not able to hold the IV in place. Zoe is sedated at that time, and an IV is started in her neck. She's rushed up to isoplation in PICU. 1L of saline goes in and nothing, no urine output now in 12hrs. The decided to try sugar water instead and within 2hrs her diaper is overflowing in urine! I have never been so happy to see pee all over the place! We waited 6 hrs before they moved the IV back to her right hand before they woke her back up. It worked! Back to ped's and back on saline. All that rapid fluid swelled her face so much she could barely open her eyes. This was Wednesday afternoon still a bit puffy but her left arm looks a lot better!

 

She still continued to be in pain in her upper back and now she has not pooped since Tuesday morning. After a painful cath they found her left kidney to be swollen and pressing on her intestines prevent her stool from moving out! She has a kidney infection! She was also reswabbed for H1N1 which after 2wks and 5 days of completing Tamaflu she is no longer positive! Her labs look wonderful today and well above the range they want the only thing bothersome is her plateletts are high which could be due to the flu. We are now being placed on a study through Denver's infectous control for 6 months due to possible complications related H1N1 within a toddler that is immunocompromised. She has a port placed in her right arm for frequent blood draws as well as medication. We go back every other day for 6 months for her blood to be drawn and the port will be moved to her left arm in the last 3 months. And the best thing is she came home today!

So happy to go home even though she has to wear a mask!

And to top this month off we spent $500 replacing a dohicky in my car only to stop working again with in a week and we have a hole in our ceiling!

[kristen1983]

Nov. 20, 2009 at 11:05 AM

Oh my gosh girl you have had a bad, bad month. I'm so sorry!!  It always seems like bad things hit at once.. like they say, when it rains, it pours.  I'm just so happy to hear your daughter is getting better.  That must have been so scary.  I can't imagine having to see either of my babies in the hospital... poor thing.  Sounds like you are staying strong, and just remember for every real bad moment in life (or month) there is a good one just as powerful around the corner so keep your head up and just keep on keeping on!