A Rough Few Days

This week has been a hard one.  On Monday night Lizzie was really fatigued...I just attributed it to a busy day that included therapy and lots of running errands, etc.

Tuesday morning I went in to wake her for school and she couldn't wake up - she was very unresponsive.  I thought at first that she had just overdone it the day before and so I decided to let her sleep in.  Around 10 a.m. I went in again and she again just was very unresponsive.  I made her sit up to take her meds and then she crashed again.  About an hour later I made her get up, she almost couldn't even walk down the stairs, and then we headed out to her pediatrician's office.

She couldn't eat and said she felt like she was going to throw up which completely freaked me out.  Her pediatrician, whom we love, was very concerned when she saw her lethargy and did an exam.  She found out that Lizzie had strep throat and a staph infection on her body.  She recommended admittance to Primary Chilren's Hospital again...so we left immediately for the hospital and were directly admitted...I was very glad to bypass the ER.

Her heartrate was very high and they determined she was very dehydrated.  They started an IV which took its usual hour because it is very hard for them to find veins on Liz, even with the specialized IV team.  We were also very concerned because we had decided to try again the night before her human growth hormone which evidently made her very ill as well.

Her hormone levels were all over the place and her lethargy on Tuesday never really ever let up.  They gave her a CT scan as well b/c everyone is a little freaked out with her past history...this came back normal thank goodness!  Wednesday was better during the day...she perked up finally after receiving fluids and getting her meds a little more regulated so we decided to prepare to go home and just treat her at home for strep and staph and getting her back on balance with her medicines.

About an hour before getting released, she started going downhill with a horrible headache and extreme lethargy again.  I expressed my concerns to the dr. and she told me it's not a big deal and a result of strep throat.  Lizzie was crying to go home so I just figured we'd get her home really quick and treat her there.

On our way home Lizzie screamed that her head hurt and then vomited huge amounts.  I admit I went into a state of shock because right before her original diagnosis in February, on our way to the ER she screamed that her head hurt and vomited too.  So, I pulled over to a gas station and went to get her emergency shot of cortisol out and then realized that the liquid had dried out - I freaked because Lizzie doesn't make any cortisol and her body can't handle it when she vomits - kids can go into a coma or have serious problems if they don't get that medicine after an injury or trauma.

We went into the gas station and Lizzie couldn't even walk well b/c her head hurt so bad.  She laid down right in the middle of the gas station - I didn't know what to do and was in a bit of shock.  I had the gas station worker call 911 and an ambulance came and took Lizzie back to the hospital.  We got to the ER and I expressed my concern about her getting the cortisol asap and so they were good to hurry and admit her and get her the meds.  They also gave her a good dose of motrin to get her pain down. 

Poor Lizzie was so fatigued and could barely walk when they wanted to do a neuro-exam.  About an hour later Lizzie just miraculously perked up and was chatting our ear off - we were a little shocked at how fast she rebounded.  The doctor explained that sometime's with strep it can cause these huge headaches and vomiting too, so we decided to get home while Lizzie was still okay to travel.  We would have stayed the night at the hospital, but Ben had given Lizzie a Priesthood blessing which calmed our fears regarding her condition.

It seems that the littlest infections are going to quadruple their effects on her body - it's just so hard to know what to do because past history dictates how we and the dr.'s react.

We are a bit of a wreck today - exhausted on every level.  Lizzie is extremely worn out today and hasn't gotten out of bed yet so we'll just have a few days of downtime and then we feel like she will recover just fine.  This experience was good for many reasons - we and the doctors have both decided to completely take her off the growth hormone...even though it is vital for her body, the balance of pressure in her head is so precarious right now that she just can't have anything that may change that balance.  We also figured out her meds a little bit better and we feel that going forward we will be better prepared to handle crisis situations.

I continually marvel at how many times a heart can break and keep going - our hearts have broken at least a hundred times this year for what Lizzie has gone through and will continue to go through, but for today, she is going to be just fine.