Sick Little Girls

Sometimes when I look back at things I wish I would have recorded more of my thoughts and feelings about events.  It is really true hearing the saying "life can change in an instant" and while our life changes are pretty small and insignificant they are changes nonetheless.  Ilene has an abnormal heart murmur.  We have known about it for a year and a half and it has checked out fine in all of the tests they have done.  She has been a really happy, busy, energetic, sweet little girl pretty well her entire life. Happy-go-lucky pretty well describes her for the most part.  This summer she has been sick a lot more than usual.  Normally we are pretty lucky and mostly avoid sicknesses and viruses.  We have our share occasionally, but she has had croup (two winters ago) followed by chicken pox (same winter, but she hadn't had her vaccine yet) and this past winter she had one good cold.  She did get a problematic abscessed tooth, but that would be thanks to the dentist not her catching it somewhere.  Other than that it is pretty minor-cough, runny nose, occasional stomach bug but nothing that really slows her down.  This summer she has had some nasty fevers about once a month or once every 3 weeks.  Her temperature would usually be from 101.5-102.5 for 4-5 days with really no other symptoms.  This has happened 4 times including this past week.  I took her in earlier this summer and was told it was a virus-it probably was? but neither Alli or Cam would ever catch these viruses.  She would also complain of knee pain a few times a week.  Nothing major, it would hurt for a bit and then she would play again.  At her well check this summer I asked about that so I would know how to differentiate between growing pains and problem pains.  They continued after that and I could tell they were in no way the typical growing pains.  This week she got pretty sick.  She was really lethargic, fussy, bad fevers (spiking to 103.4 with labored breathing two nights ago).  I was concerned so I took her in yesterday morning.  She seriously laid on the doctor's table, wanting to be held but not having enough energy to really put up much of a fight.  The NP who checked her (our favorite pediatrician was not in and I didn't want to go to the one we have seen earlier this summer) was concerned because with everything together it could be a problem.  This was for sure the sickest she has been.  We were sent to UVRMC for chest xrays (to check for her heart getting bigger which is a sign it is having to work too hard) and blood work.  And we were told to come back in to the fave ped this morning to have his take on the situation and review the labs.  She was in and out of sleep the drive to the hospital and the wait period, just wanting to be held.  She had to be standing or sitting for the chest xrays so some gum helped wake her up enough and after that we went for the labs.  She was a champ! She sat on my lap and cried just a little bit both times they got blood, but she didn't fight it at all.  She just looked at a book with me.  They didn't get enough from the first arm so they did her other arm so they would have enough for all the tests.  Today her fever is down (99.5 yay!) and she is acting only a little bit sick, but she has some energy back.  She is congested now so her breathing when she is sleeping has some issues, but not too bad.  At her appt today her xrays were good and most of her bloodwork was pretty good.  Her sedimentation (ESR) and CRP were fairly elevated so the ped said there is obviously something going on.  Those indicate inflammation in her body/blood which is consistent with an acute infection.  A lot of the other markers they checked for (lupus, arthritis etc) came back fine so I was glad for that.  Now we will go see the pediatric cardiologist and the infectious disease doctors in a few weeks and hopefully they can make some sense of what is going on so we can help my little girl not keep getting so sick! I worry because it seems like as far as her overall "sickness" this was the worst time and sometimes she doesn't fully get back to  herself before it starts again.  Hoping for some answers!  So now it is Friday night and she is trying to sleep.  Poor girl fusses in her sleep and has a hard time breathing.  It makes me nervous listening to her and she still has a fairly high fever (102.1) so I worry because I don't know what else we can do for her, but I know more and more there is something going on.  I scheduled her visits to the specialists, but they are not for a few weeks.
Alli has also been having issues the past few days, but is now doing good thankfully! Wednesday she had a puffy, watery eye and we figured it was allergies.  Thursday she woke up with a lump in her tear duct.  It was only about the size of a grain of rice, but it made me nervous and since Ilene was going to the doctor Alli went to.  They figured it was allergies, but just to be safe put her on an eye drop to kill anything and said she was fine to go to school.  After school it was the size of a pea and she had a fever of 103! So I nervously decided to wait until Ilene's followup the next morning and we went back in.  The doctor was really concerned given her history with MRSA so he started her on an oral antibiotic along with her eye drops, but said to watch really closely because if it gets worse she needs iv antibiotics :(.  Luckily she has responded well to both anti-biotics and it is getting better each day :)  so it looks like we will not be going to the hospital! I really wasn't sure which child I was more nervous about Thursday night and Friday morning.  I figured Alli's was more of a short term concern, but we have already been down that rode with antibiotics and MRSA is notorious for coming back over and over again throughout life.  I am so so thankful we were spared the trauma of having Alli in the hospital-that would be so traumatic for her, anything medical and she has her guard up so an iv would literally be a nightmare with her!  Her eye drops sting pretty bad, but she doesn't want it to get worse so she is a champ about taking her medicine and getting the drops 4 times/day.
It really just makes you think about things. I am really hoping that Ilene's further testing and doctor's appointments will reveal something small and hopefully temporary, but we really don't know.  We know a few things it isn't-Lupus and arthritis being 2 that were ruled out, but we don't know what it is or if it continue to come about once each month and get worse each time? Is it an infection? Where is the source? Is it an autoimmune disease? Is it something with her heart? I don't know which I would prefer, but it has been a little nervewracking thinking of my precious baby girl going through something difficult! And thinking that Alli could possibly have MRSA again made me nervous because it was hard being in the hospital the first time and now we would need to split the time there and home and she would be old enough to know what is going on :(.  So I am still nervous for what is going on with Ilene, but I am so grateful she is doing better and that Alli is mostly in the clear!  

 You can see Alli's first day of school outfit she picked out and also her left eye that is quite puffy.  But right them she was focused on finding her friend who lives up the street.

 Ilene showing the treats that greatly helped the lab work-and her lovely bandaged elbows :(.  She is the toughest little girl!

This morning at the "follow up" appointment for these funny girls.  Alli's poor eye! But luckily Ilene was more chipper this morning than she has been.