when you don't get the answers + big picture

When Olivia was diagnosed with PFAPA (pronounced "fappa") I wasn't surprised. It wasn't scary. It was actually the diagnosis I prayed for. It sounds silly, but I had a peace about Periodic Fever Syndrome, I was ready for it. I had done the research and talked at length with a woman with a daughter who was diagnosed with PFAPA. But before all of that, when it was just us against the fever, with a seemingly endless cycle of motrin and tylenol, I was scared. It was that shake you to the core, anything is possible, paralyzing fear. Because we didn't know what monsters were lurking in the shadows of that fever.

That's why I'm writing this post.
For the mama out there, who doesn't know what's going on with her baby and will scream if she hears "virus" even one more time. I want you to know that you are not crazy; there is an answer to all of this. And good for you for not taking a doctor's word as gospel, and being your child's advocate.

{the sight that stopped my heart}

If you're new here you can read this, this, and this to catch up. 

To put it simply. Olivia gets fevers, regularly. For no reason. There's never any specific virus, or bug that the doctors can identify. Just the fever. PFAPA is characterized by a recurring fever of unknown origin. It took the doctors at Vanderbilt about 20 minutes to diagnose her. If you are going through something similar with your little one, and you don't feel like you are getting the answers you need- I would encourage you to seek another opinion. We were very lucky to have a doctor who doesn't have a God-complex, and knows she doesn't always have the answers. I know not everyone is as lucky. Remember, the doctors work for you. If you don't feel like you are getting the best possible care your (& your baby) deserve better. {stepping off my soapbox now}

Next, I would tell you to seek community. As with most things- walking through the unknown of childhood illnesses is easier when you are surrounded by your people. It is important for you and your child to have a support system. There were many instances where I had been sitting at Olivia's bedside for days with no break, and a friend or family member would all but push me to the bathroom so that I could take a shower, or brought dinner by. Those acts of service were exactly what we needed in that moment.

That brings me to the next point; take care of yourself. I'm sure you've been told before, "if you don't take care of yourself, you're no good to anyone else." Y'all, it's so true. You have to make time to shower, eat and rest. Let the people in your life help. Yes, I agree no one can take care of that baby better than you. But I doubt anything horrible will happen because you take a 5 minutes shower. And you'll feel like a different person after those 5 minutes.

My final piece of advice is to pray. There were many days (and still are) that I would lay in bed with Olivia, her body so hot I could barely stand to hold her- but couldn't let go. In those moments I prayed. I prayed about the temperature of her body, I prayed about the terrifying thoughts in my mind, I prayed He would give the doctors wisdom. This is your baby, the most special tangible thing in your life. You can't just leave it to the doctors- you've got to hand it over to the Great Physician too. These precious babies that He has placed in our care, are after all not our own. They are His.

Blessings Abound.

Last Thursday we took a day trip to Nashville, TN.
As soon as we got to Nashville we headed to Joe Naturals and had lunch with new friends..

Y'all I got to have lunch with Raechel and her sweet babes! Let me tell you, as delightful as she seems on her blog- multiply that by about a million and that's what you have in person. She's amazing, and I pretty much love her heart!

Olivia and Hazel were born only a week apart and had a blast playing together- they were so cute!

Lunch was amazing- and reason enough to drive 2.5 hours; but the main reason we went to Nashville was to take Olivia to see the specialists at the Infectious Disease Clinic at Vanderbilt Children's Hospital.

{If you are not familiar with Olivia's medical condition you may want to read this, this or this first.}

After about 2 hours, and a ton of questions- we finally got the answers we've waited since November to get. She has been diagnosed with periodic fever aphthous pharyngitis and cervical adenopathy (PFAPA.) Commonly referred to as periodic fever syndrome. She will require medication at the onset of each episode, and will grow out of it between the ages of 7 & 8. This is definitely the diagnosis we were praying for, and it eliminated a lot of very scary alternatives.

The staff at Vanderbilt was truly a blessing. They were so thoughtful and thorough. It was such a relief to finally feel heard. The Lord has shown His grace and love to us through the people we have met during this season and those who've prayed with us for healing and answers. We thank each and every one of you! God is good friends, and His blessings abound.

if you came over...

If you came over to my house today you'd see a sick little girl...

if you came over today you'd see a Momma-heart that's breaking...

if you came over today you'd see me camped out at Olivia's bedside...

if you came over today you'd see a family that is imparting more grace on me than I deserve...

if you came over today you'd see me getting caught up on my #shereadstruth bible study after a busy work week put me a little behind...

if you came over today you'd see a house that may or may not get cleaned before our big family get-together this weekend...

if you came over today you'd see that I'm in desperate need of a shower...

if you came over today you'd see that friends of the stuffed variety provide sweet comfort to a little girl...

if you came over today you'd see that I compulsively check Olivia's temperature, just to see if it's moved in the last 10 minutes...

and you'd have seen the 4 degree jump it made within a 15 minute period...

if you came over today you'd definitely see the pile of laundry that is causing me much embarrassment...

but mostly, if you came over today you'd see a Momma who is desperately praying for answers...

 and that her little girl would feel better...

and that He would cover her family with protection and peace...

and that that laundry pile would find a way to wash itself...

The Fever Continued...

We had big plans for our Memorial Day weekend. We spent Thursday and Friday prior preparing the yard, and grocery shopping. We planned to grill out with friends and family, swim and maybe even set off some fireworks. 

Yeah, not so much.

Sunday morning greeted us with a particularly grouchy Olivia. She is usually very good during church, but she had a hard time this day. That should have been my first clue for what we had coming. We survived though, with minimal embarrassment for Momma. We went to family's for Sunday dinner. Olivia fell asleep on the way over there, which is typical because we go over right at nap time, but she always wakes up happy when we get there. This time she kept on sleeping. Again, another clue. When it came time to eat we laid her on her nap mat and I noticed she was kind of warm- but just attributed it to the fact that the kid's a furnace when she sleeps. A few minutes later, I felt of her again and she was on fire. I didn't have a thermometer with us at the time (a mistake I won't make again) but I would wager that her fever was upwards of 103. 

We called the nurse line when we got home, because we still had not been able to break her fever and there was an ominous bug bite on her upper arm. Given her history and the current conditions they advised that we bring her to the ER. They did more blood work, a urinalysis, and a chest x-ray. The ER doctor said he saw some inflammation on the chest x-ray and that her blood count was elevated. And Momma and Daddy breathed a sigh of relief that we finally had an answer and not another "virus brush-off." {Side note: if hear the word virus come out of another doctor's mouth I will scream.} 

The fever continued through Monday with a little coughing and vomiting sprinkled in. We had been told to follow up with our regular doctor so I called Tuesday morning to make her appointment. She was just miserable all morning. Luckily her fever broke a little while before we had to leave for the doctor and she was saying she wanted chicken- so we went for chicken. After lunch we headed to the doctor, they took us back quickly. So thankful for our pediatrician's office. They are so wonderful. We always see Miss April, the PA, she is amazing with Olivia.

And that makes me pretty much love her. She had been copied in on all the tests that the ER had run and to my dismay, she disagreed with the ER doc. She saw no elevation in her blood count and nothing remarkable on the chest x-ray. So here we are with another unexplained fever. Ugh. We agreed that we would reschedule an appointment with the Infectious Disease Clinic at Vanderbilt Children's Hospital.

After her appointment (and lots of stickers and suckers from Ms. Doris at the front desk) Olivia was still in high spirits so we decided to run a couple of quick errands. By the time we got home her fever had come back and it wasn't here to stay for a while. She just laid at the end of our bed and looked blankly at the TV until she fell asleep. She woke up every hour on the hour, crying inconsolably. Heartbreaking.

I ended up staying home from work on Wednesday. She continued to fight the fevers, and we waited on the phone call from the doctor's office about our referral to Vanderbilt. I prayed that they could get us in, prayed that the fever would break, prayed for guidance and wisdom, prayed for rest for her- and me, but mostly I thanked God that we are surrounded by group of people who love us so well. 

Yesterday, I went ahead and went to work. Olivia had been fever free for 10 hours so I decided to give it a shot. We made it to 1 o'clock before I got a phone call. The fever was back, and it was back in a big way. She was having trouble swallowing and was dehydrated. There was a fury of phone calls. One grandmother driving across town to pick up a thermometer from another grandmother, then taking it to another grandmother. (did you get all that?) And then more phone calls. One to Daddy, one to the doctor. We talked with the nurse for about 20 minutes and at the end of the conversation we all agreed that Olivia needed some fluids for hydration. She had only had 1 wet diaper in 48 hours. So I left work, picked her up, and headed straight for the ER. We must have sat in that waiting room for 2 hours before a friend who works there happened to walk through. She said that she would get us back as soon as she could. We were in a room 15 minutes later. Thanks Jess!

No one wanted to give Olivia an IV unless we had to, so we waited for about 2 hours while I tried fruitlessly to get Olivia to drink something. Let me tell you, if a 2yr. old doesn't want to drink- they're not gonna.  In all that time she maybe drank the equivalent of about 2 tablespoons. So it was decided that an IV was necessary. Rip my heart out now. Three very sweet nurses came in and talked with Olivia before the procedure, then another came in for the actual stick. She was less than patient with our little one. :( It's sad that it only took that one nurse to make our visit to the ER so unpleasant. She scared the pants off Olivia, and every time the IV monitor would beep Olivia would start to cry again because she knew the mean nurse was coming back.

Options

They also did a throat culture since she was having difficulty swallowing- it of course, came back negative.  Thankfully, the IV process went pretty quickly (30 minutes maybe) and we got to go home soon there after. I'm so thankful to those of you who have been praying for Olivia and our family during this time.

Today, Olivia had been fever free so far and seems to be in good spirits. Praying it stays that way. We go to Vanderbilt on the 14th. I'll update everyone after that.

The Fever.

Olivia was always a very healthy baby girl. Not so much as a runny nose of a diaper rash; until November. That's when the fevers started. Every 2-3 weeks, like clockwork she would spike a high fever, ranging anywhere from 101.7 to as high as 106. Terrifying. We went through 6 or more rounds of antibiotics, with no results. The fever kept coming back. She's had 5 chest x-rays, nasal and throat cultures, urine analysis {via a rather torturous catheter experience,} and more blood work than I can count; with no answers.

{at an appointment back in December.}

We kept getting the "it's a virus" run around. But I just didn't buy into that theory. A momma knows her baby, and I wasn't about to let it go at that. We reached the end of our rope in March of this year, and at her 24 month well visit Olivia's pediatrician decided that it might be time to seek another opinion. She referred us to the infectious disease clinic at the Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville. We discussed what they would do and say at our appointment. My stomach did a somersault when the words "spinal tap" escaped her lips. 

Big, scary words like cancer and immunodeficiency swam around in my head. It was a scary time for all of us. We tried to prepare ourselves and Olivia as much as possible. In true fashion, I researched the facility to the ends of the internet. Read tons of information on preparing your child for these kinds of procedures. My mother-in-law got Olivia a play doctor set and we began talking about what they would do when we got to the hospital- as best we could in terms a 2 yr. old could understand. We prepared for an over night stay in Nashville if that became necessary. And then we waited for April 19th, and prayed a lot.

Two days before her appointment we had a conference call with our pediatrician and his P.A. It was April 17th, and Olivia had not had a fever since March 26th. We started to think that maybe it was just a virus all along. We all agreed that it was not wise to put Olivia through the traumatizing invasive tests at Vanderbilt, unless we knew it was absolutely necessary. So, we canceled her appointment. The next day, on the 18th, she spiked a fever. Of course. This fever, however, did not go a high as the ones before and only lasted one day. 

So now we wait. We wait to see if she has another fever- or if the fever on 4-18-12 was an isolated incident. And we pray. We pray for peace and understanding, we pray for healing for Livi's little body, we pray that if she is sick- that the doctors are able to find out what's wrong, we pray for wisdom for her doctors. And then we pray some more.