So many of you have emailed or asked me on Facebook how Gabriella is doing. She is still sick. She is still baffling doctors. We are still waiting on test results.
The first phone call came yesterday saying she is dehydrated and has pneumonia. And? They are waiting on more test results from her blood to find more answers. Oh, the agony of watching my poor baby girl while the amazing nurses tried to draw blood from her dehydrated body. I know how much it hurt her. She was such a trooper! I cried just a bit watching but never when she saw me. They said they were still waiting on some blood work results to come back but one of the results showed inflammation in her body but not what they would see with pneumonia. (So what is it?) Her ears hurt but they see no sign of infection. Yet, she hurts and cannot hear very well at all. They “see” no reason for that.
I want answers.
The second call came today saying they were not sure about the pneumonia. (I saw the x-ray. Her lungs definitely had something going on there.) When I questioned it, I was told the nurse would call me back. She, too, saw in inconsistencies with chart results. I insisted that it was the doctor that needed to call. I wanted to talk to her doctor and make him explain what is going on with my baby girl. The doctor never called me back.
I want answers!
We are going on day 8 of a fever that does not go below 100 degrees and topped off at 104.7. I know fevers are meant to fight the germs but this is too long. I give her ibuprofen around the clock and her fever goes down to near 100. But doesn’t break. It only broke a few hours on Saturday. Then it shot back up.
I want answers now!
She doesn’t want to eat. She doesn’t want to drink. (Though I am pouring Gatorade and water in her around the clock.) She even refuses to eat a Popsicle.
She is breaking my heart. All she wants is to sleep and lay on the couch. Many times with me there. Most of the time just alone and in a zone. She is fighting something we don’t know about. She is battling an enemy where our only weapon is antibiotics and hope that it works.
I want answers now from someone!
And of course I am exhausted so when this song I love and have heard a million times came on the radio tonight, I pulled over and sobbed. A phrase here and there sucker punched me. (I know the song is about something more serious that we (think) we are battling, but the words got to me anyway.)
By the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there’s something less about her
And I don’t know what I’m supposed to do
So I sit down and I cry too
But don’t let her see
For those of you who may not know the lyrics, here they are. It is beautiful song Rob wrote for his wife who is fighting Lupus. We are not fighting a battle like that. I can admit the dragons I am slaying all night and day are minor comparatively, but I know the helplessness of watching someone you love hurt. My cousin has Lupus. My mom had MS. It sucks to watch someone you love hurt and be able to do nothing to fix it.
Lyrics: Oh what the hell she says
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what Im doin’
Like I don’t know now
By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what Im supposed to do
But if she feels bad then I do too
So I let her be
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
Shes down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
She sits down and stares into the distance
And it takes all night
And I know I could break her concentration
But it don’t feel right
By the light of the moon
She rubs her eyes
Sits down on the bed and starts to cry
And there’s something less about her
And I don’t know what Im supposed to do
So I sit down and I cry too
But don’t let her see
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
Shes down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
She shuts out the night
Tries to close her eyes
If she can find daylight
She’ll be all right
She’ll be all right
Just not tonight
And she says oooh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cuz I can’t help her now
Shes down in it
She tried her best and now she can’t win it’s
Hard to see them on the ground
Her diamonds falling down
Hi Jennifer. Do you have a childrens hospital you could take your daughter to? You might get answers more quickly. Just a thought. You and your daughter are in my thoughts and prayers. Please let me know if there is anything I can do for you.
Catherine
Because of the storms we’ve been having here in the Philippines, and the flash floods, we’ve had relatives getting sick too. I hope your daughter gets better soon and the doctors finally find out what’s happening and treat her right. hugs
Our neighbor’s daughter had something very, very close to this. And for many days as well. They took her to urgent care at first and was told it was “just a virus.” But when she didn’t get better, they took her to ER and she was admited. She had pneumonia. I think she was in the hospital for two days and stayed home for a few more days after. But now she’s doing great.
Here’s hoping your little one is soon on the mend. And thta you get your answers.
Just read this and didn’t know your poor baby was so sick. I’m so sorry that you’re not getting the answers that you want and so desperately need. Please know that I am keeping her (and you) in my prayers.
~ Jennifer
http://thetoyboxyears.blogspot.com
Dear Jenn,
Praying for your daughter and your family.
Hope she gets better soon – maybe the doctors will get her admitted so they can monitor her closely and put her on IV so she does not get dehydrated…
Take care..
Jenjen
( I found out thru Becki from theMotherhood)
Thinking of you hun – I know those feelings you’re feeling. Have they ruled out Kawasaki’s Disease? That persistent fever is worrisome as heck.
I will be praying that you get some answers and your daughter recovers soon. My daughter just got over a bout of pneumonia and not knowing is too hard. I understand you heartache and frustration.
You need to insist that they admit her to the hospital. Her dehydration can be taken care of by IV fluids and they may be able to figure out what is going on faster.
Push harder and stay strong!
(((hugs))) for both of you. I will be praying that she gets better soon and that you get some answers.
Hugs and prayers! Any new info yet?
sending love and healing thoughts to you guys.
(hugs) hope you’ve gotten some answers.
Sending cool feverless thoughts you way. I hope that you get some answers to start making your little girl start feeling better. Thinking about you guys!
I hope the test results come soon, that your girl is feeling better, and you get the answers you need!
Jenn – what an agonizing ordeal. Thinking of you, for what it’s worth…
So sorry your little girl (and you!) are dealing with this… and how frightening when the doctors don’t know (or can’t tell you) what is wrong. Hoping you get answers (and healing) very soon.
wow. I am so sorry she is so sick. there is nothing worse for a parent than when when their child is sick and we are powerless to do anything. She will get well. Here’s a virtual mom hug for you and much hope that she gets well quickly!!!!
ouch! sorry for the lil kiddo.:(
hope she get well soon
I’m thinking of you-
Steph
Damn Jenn. Answers WOULD be nice about now. I can’t believe you poor baby girl’s been suffering so long! I hope they have something, anything for you soon! That’s not right.
Thinking of you!! XO
I was watching this Nightline episode not long ago about children with persistent low grade fevers and how they can be deadly because physicians don’t know what to look for. It talked about there being a infection in the blood or some other organ in the body and how it’s totally treatable but had to be diagnosed first. Regular antibiotics won’t treat it. I wish I knew the exact name of the infection but maybe you could ask your doctor….it sucks when we can’t protect our children and the doctors we rely on to ‘fix’ them are not ‘fixing’ them fast enough.
I realize your post was a while ago, and this is the first time I’ve read this blog, but I’m wondering if you have answers yet. Your daughter’s symptoms sound much like those of my friend’s daughter. She ended up being diagnosed with Kawasaki Syndrome as well as mono. She was a sick, sick baby girl but recovered. Hopefully your baby girl is better by now!
Oh gosh, I sure hope she is all well by now. My daughter had a fever for 7 days recently which hit 40 degrees Celsius and then it would come on and off for the entire week. She had a bad chest infection which saw her coughing a very wet sounding cough and her nose had green goo all spilling out. It turned out she had a bad ear infection though she never complained of any ear ache. I’m just glad it’s over because I have a newborn and we really couldn’t afford our newborn getting so sick too! I really hope your girl is better. One of the remedies I truly believe in is Reiki 🙂 Let me know if she’s not better.
You haven’t posted in a while and I’m wondering if everything is ok. I’m praying that everything is ok. Take care.