Tuesday, August 28, 2012

Summer's Storm

We had no idea the storm that was going to be hitting us.  
This was Summer on Monday.  She had fever beginning Friday night and a really bad, non-stop cough and as I stated in my previous post I finally went to the doctor on Monday.  I was told that she had a fever virus that was aggravating her asthma and to do breathing treatments every four hours.
 
Although, the doctor told me to watch it for 48 hours, by the next morning I could tell there wasn't any improvement and I called for another appointment.

My poor little girl was coughing her head off and struggling to breathe.  Turns out her oxygen levels were low so they put her on an oral steroid to work in combination with the breathing treatments.
Wednesday morning, as you can see she still wasn't herself (forgive my post workout appearance).  The oral steroids weren't showing improvements like I had seen when she has taken them before.  This mama started to get ticked off...my baby should NOT have fever for 6 days and a doctor tell me it is OK.  The day had been long and when Zane woke up from his afternoon nap I popped them in the car for a drive.  I decided to call the doctor to get an appointment for the next day (as I knew my doctor was out of the office).  They said I would have to wait to schedule the next morning or I could come now (5:15pm).  I hadn't planned on getting out of the car but thought it might be a good idea to see a different doctor for a different set of eyes. 
 When we got there her oxygen level was 88 which is not good.  Even after a breathing treatment it did not improve and the doctor said we needed to go to the hospital.  OK. I tried to keep it calm.  Then the doctor came back in the room and said that we needed to go in an ambulance.  WOW, I had to breath deep after that information.  Summer lost it and started crying hysterically.  Zane, was in the baby bjorn and was on his very best behavior (thank you God).  I tried to call Chad and my mom but the background noise of crying felt like I couldn't really communicate.  When the ambulance arrived they said that Zane could not ride in the ambulance and that I could drive behind and meet them at the hospital.  Say WHAT?! No way am I letting my 3 year old, who is already terrified, ride alone in an ambulance.  The pediatrician nurse offered to drive my car with Zane and meet me there.  I was relieved and said yes without a second thought. 
I was able to calm Summer down once inside.  We said a prayer and tried to appreciate this "once in a lifetime" ambulance ride.
When we got to the hospital room Summer asked me, "Where I bed?" I told her that she was sitting on it.  She responded, "But it not pink."  Luckily, Nana brought her pink blanket (along with all of our other nighttime necessities) to the hospital that night and made her more comfortable. 
Next question, what do we do with Zane.  He has to be with me since I am nursing and I don't want to leave Summer (even though daddy was there) yet I feel that it is too germy for a baby.  I spoke with the doctor and he thought that we would be fine as long as we stayed in our room and don't walk the halls.  So all four of us had a spend the night party in the hospital. 
That night, they taped the oxygen line up her nose in preparation, thinking that once she fell asleep her levels would drop.  Surprisingly her oxygen levels stayed up.  By 4:30am, I requested that the tubes be removed as they were causing her MAJOR grief...it was sad.  And so they did.  And after that time, her levels dropped and they had to put them back on.  Oh, that was sad because she fought it going in the second time.  We requested an oxygen mask and although it was against their policy, they rigged one for her.  
On Thursday, they continued to diagnose Summer with a viral virus in the lungs and no medicine.  She was still doing breathing treatments and her oral steroid.  Coughing remained non-stop yet her fever had gone away.  Thankfully Nana came to visit both days to lift her spirit and give Mama and Zane a chance to go home and take a nap and shower.
 We are so grateful for our church group, family and friends who came by to bring us meals and gifts.  And all of the prayers from everybody everywhere.  God's love was shown in such an obvious way.
Friday the doctor said that Summer was stable enough for him to feel comfortable with her recovering at home.  I asked about a chest x-ray and so he did one (pictured below, Summer was unsure about the unknown of an x-ray).  He said it came back showing a nasty viral virus of the lungs.  He told us that she was "as contagious as any other kid on the playground" and when I asked about her cough and being in public, like church, he said he would allow Summer to be in the same classroom as his kids.  Ok. We were discharged Friday night and thrilled to be going home.
We came home Friday night and Mimi flew in to stay with us.  Over the weekend Summer's cough continued to be non-stop and so hard that she started throwing up/hacking. She would cough and hack about every ten minutes.  If I coughed as much as she has over the past 12 days, I would have six pack abs by now!  Monday, we went to the pediatricians office for a follow up appointment with a different doctor in the practice.  Her oxygen levels were low again.  Once we got in the exam room I could see that she looked pale.  They gave her a breathing treatment and this doctor suggested she get tested for walking pneumonia.  I asked if that was contagious and she said Yes.  I was then upset...we had just been told that she was "as contagious as any other kid on the playground." What if I had sent her to church or school?! 
Earlier in the week the doctors office pricked her finger for blood to test for pneumonia and it was negative but VERY traumatic.  Therefore, to have to go down to the lab and have a needle stuck in her arm and draw out a large amount of blood was literally making me jittery.  I was trying to stay calm but I knew I was leading her into the lion's den and she was clueless.  God was with us and it was actually less traumatic than the finger prick.  Ironically, they did not do any blood work in the hospital...leading me to have a lot of questions about the quality care we received. 
Test results came back Monday (yesterday) that Summer has walking pneumonia.  I was thrilled that there is medicine that she could begin taking.  She took one dose last night and slept thru the entire night without coughing and no breathing treatments! She hasn't done that in the past 12 days! However, I couldn't sleep for getting upset and frustrated that the cure was so easy if only diagnosed accurately!  I googled walking pneumonia and she had EVERY symptom! I feel that the doctors jumped to the diagnosis of virus, which has no treatment, without ruling other illnesses out.  In fact, I had to push them to do a chest x-ray.  I even asked if taking antibiotics could harm anything and they said yes.
Summer has had 3 doses of antibiotics and is doing dramatically better.  She is back to her old tricks of drawing our her bedtime like usual with every question and "gotta tell you something" but this is not over yet.  We have another appointment on Thursday and I really hope to get some answers from the doctor as to why this was missed over and over and how I can better advocate for my children in the future.
Our Bible lesson on Sunday was so fitting (watched online), in Luke 8:22-25 Jesus led his disciples into a storm.  He knew it would cause them fear and grief but he did it to strengthen their faith.  I can tell you that the storm we just went through with Summer, and the outpouring of Christian love we received increased my faith.  God never let's go of his children and I can always lean on him for strength.

2 comments:

Lisa said...

Oh Jana! My heart goes out to you for your frustration...I think all of us have been there. We are so blessed to have a dear friend up the road who is a Pediatric Hospitalist so he sees kids admitted every day and has seen us on his doorstep a few times! You are a great mother and keep fighting for your kids health and care. All 4 of us keep praying for her daily.

gabyom said...

Hi family! I read and totally understand your feelings! I am so happy your trust is in God and that you have been covered by His grace all this time! I love you guys so much, you cannot imagine! Big hug and more blessings!