It all started May 9th. Ordinary morning...except for the first time ever she woke up complaining that she was full and her tummy hurt. I thought maybe just a tummy ache and we left for the book sale. That lasted all of an hour before we had a fever spike and she was crying. We left and went straight home! She had some Motrin and rested for the day. She seemed better that night, but the fever returned Sunday. She was acting like she does with ear infections, so Daddy took her in on Monday and they diagnosed an ear infection with no explanation about the tummy ache. After about 3 more days of fevers, all just once a day and lasting a few hours, Daddy took her to another doctor. They said no ear infection but probably just a virus. It could last about 10 days, keep her comfortable.
Jump ahead a few more days. Fever every day....from 100.5 to 103.4, seems to be only in the afternoon, and just wipes her out. She is eating about 1.5 times a day, is acting OK in the morning but exhausted by evening. STRANGE! We continue to think OMG - shunts! Panic ensues and we are driving to Phoenix Children's Urgent care in Southern and Higley.
These guys are awesome, they do blood cultures, they start rattling off all sorts of stuff but do not feel this is shunt related so we have a small sigh of temporary relief. We spend about 2.5 hours there and come up with the now infamous line.....we think its a virus. They can last about 2 weeks. Ride it out, keep an eye on her and if it gets worse go to the ER. Ok, heard that before.
Home we go, calmer if nothing else, thinking just a virus that's hanging on to our poor baby! The pattern continues. Fever every dang day, not eating, lethargic in the afternoon, just yucky. She missed a week of preschool and Daddy missed more work than Mom could....and eventually she went back to day care because we just couldn't get to her to 24 hrs without a fever, but she had NO other symptoms so she just couldn't be contagious. No one else was sick, just her. I was (and was up till 6/4) convinced that this had to be something she picked up from playing in the dirt. Damn dirt!
Finally we hit the 2 week mark. Finally we could say its been 2 weeks and they all said it was not a virus if we hit 2 weeks of a fever every day. Off we trot to the ER at Phoenix Children's Hospital. Naturally we say unexplained fever for 2 weeks, 2 VP shunts placed and BOOM! You are in the hospital and they are poking and prodding and swabbing and making a worn out baby hurt. She did make out on the stuffed animals though! :) We had test after test, doctor after doctor. No one could say why this was happening. Yes, white blood cells elevated, inflammatory markers present. No clue why.
Mommy finally hit the wall when after being here for 2 days they do virus swabs (up the nose by the way....NOT pleasant!) and THEN they gown up!! She has been all over the place, seen by everyone, touched everything but now they decide she might be contagious and confine her to a room with a port a potty no less! The next morning the first doctor came in and Mommy apologized in advance for him getting the brunt, but he got the brunt of it! How could it be that no one had a clue? How come no one checked on her to notice her fever spike? How come no one acted like this was real? If we are watching a fever grow, we can do that at home. There was more....if you know me you know that, hahaha. Needless to say the next doctor said we believe this is a virus, she has no other symptoms and it could last up to 3 weeks. We know you don't want to hear that but it is what it is. Neurosurgery cleared her through xrays, labs were still growing, ultrasounds ok, etc. No one thought to do a CT Scan. So we packed up and left. Frustrated parents! Tired baby! Thank God it was a three day weekend because we all needed that Monday at home!
So....Monday is better, lower fever. Tuesday she spiked at 103....dunked her in the pool, clothes and all. When she shivered we got out and went to bed. Wednesday no fever! OMG!!! Breakthrough. Finally! Thursday no fever....we are on a roll!!!
She had a dr appointment Thursday, they ordered a CT with and without contrast because I thought she may have had blood in her stool. Daddy took her to Casa Grande. They decided not to do the contrast CT. They call and say its all ok, see you Monday. I feel its very important to note that they were the first ones to act like we were telling the truth, that something was very wrong. That feeling was such a relief, to know that someone believed me, that this was real and she was really sick. I cried.
Thursday night - DAMN - 102. Sad for all of us. Friday she was 102 but not till late night. We went to Chucky Cheese for a party with AJ, her friend. She LOVES CC! She played but could not run. She was tired but she tried. A friend recommended a chiropractor she works for so I told her we are desperate at this point! I will see you at 8 on Monday morning. Maybe he could help! Saturday about 100.5, Sunday 100. Roller coaster again.
Monday morning came and off we went. He was awesome and made an xray and saw some constipation in the beginning stages. Made sense, she wasn't eating right, she was out of sorts. Could this be the answer we had been looking for?????? He did not do anything. Said go to your appointment at 11:30, show them the xray and then call me back if you want her adjusted. I was so hopeful. I got Faith to her 11:30 appointment and felt full of purpose. I just knew we were going to get things fixed. I was wrong. They were even more concerned that this has continued. I was told she goes back to the ER today. Go home, pack a bag, go to the hospital until they find it. Look at infectious disease, get her neurosurgeon involved, not just the one on call. Heartache flooded in. This was so not good!
Went home, called Daddy, got the bags packed and headed out. Same as last time, immediately to a room, blood work, doctor after doctor. Admitted, ct scan, told we will not be released until we have an answer. Thank goodness it was summer break finally!
They had a CT scan done with 2 kinds of contrast. It was read as unremarkable which means it was hunky dory. Our heart sank again. All the previous labs produced no virus, starting from square one all over again. But wait......we met Dr. Cowan and let me just say the man ROCKS! He was working with another doc and was going over the CT scan again and found a hiccup. One tiny solitary spot that called out "Hey LOOK AT ME!" He had the scan reread by the radiologist, then it was changed to Warning, Warning, Danger Will Robinson!!!!! Can you just hear the angels rejoicing with that....I still do!
Then we had another ultrasound (3 now) and they isolated the spot. Then Dr. Shafron (who walks on water in the neurosurgeon world, in our opinion) came in and tapped her shunts. This means that we went to a sterile room and he cleaned her noggin, shaved just a tad of hair off, and used a tiny needle to aspirate some of the cerebral spinal fluid (CSF) and had it tested for infection. If it was positive that would be terrible, that's an infection in her brain. It was negative. That meant exploratory surgery.
So yesterday she had exploratory surgery of the abdomen to locate the fluid sack and draw some for a test. They also removed her appendix. It was OK, but if she ever had an appendicitis in her life, even if her shunts were great they would have to be replaced because of the bacteria. It was a preventative measure on our parts but we feel it was a wise decision.
The picture at the top was of her after surgery last night. They went in and made pictures of the inside, took out her appendix, and found the source of the problem all with these tiny cameras and instruments. Dr. Shafron was involved as well and once they determined that it was an active infection her shunt drains were externalized so the fluid could be checked. She had white splats all over the inside of her abdomen. This was the root of the fever and pain. 25 days and finally an answer.
The good and bad of my long story......
Good: We were not imagining the whole thing. She is a sick kiddo and will be better soon. She has not had a fever since Wednesday and that alone will bring tears to Mommy's eyes even as I type. Its real, and now they all know what we knew the whole time.
Bad: She (we) will be here for about 2 1/2 weeks while this is fixed. She had a gram positive infection in her abdomen, from unknown origins, and has yet to be named as it is still growing in a dish. ALL shunts and tubing will have to be removed, a temporary drain placed, and meds for 7-10 days. Once she is all clear, she will go back in for another major surgery and have them all replaced. (we may only have to do one shunt next time instead of two! WooHoo!)The first major surgery is Friday at about 9.
We know the power of prayer has been at work here. When the request went out for prayer that this be found, God gave us Dr. Cowan and within 3 hours we were on the path to correcting the problem. Please pray again that Dr. Shafron is able to do what he needs to do with no adverse affects on our baby girl and that she has a speedy recovery.
As soon as we have news I will update her blog! Check back for updated photos, and send me good luck vibes in finding some really cute stretchy headbands for Faith as her beautiful blond hair grows back over the next few months!
Lots of love from room 3, PICU, PCH,
Little Faith Marie's Mommy,
Vicky
Brother Blake with Faith
Aunt Tracy came to visit!
AJ brought PRESENTS!
So did Sammy and Auntie Kim!
And Thursday Grandma JuJu came......Mema and Papa Cliff came Wednesday but Mommy forgot to get pictures! We also had a visit from hospital friend Kaylee!
AJ and Aunt Tracy came back for some awesome painting before we are down for the weekend.
Faith had her modified bath and her hair was cleaned, ready for surgery tomorrow. We are so praying that Dr. Shafron has attended some beauty school courses on haircutting techniques, haha!
We will update Friday! Lots of Love!!!
