2 hour scream fest...

So I picked up S from school today. She seemed okay, but when we got home, all HELL broke loose!! She constantly had to be touching me and yelled and screamed and seemed in pain. But I couldn't find any reason for the pain. I lasted a whole 45 minutes before M came home and entered the scream zone. She wouldn't sit still, wouldn't eat, wouldn't drink. It was a nightmare! So we gave her tylenol and 30 minutes later, she was perfectly normal. Ate a bit, and drank her milk, played and laughed and then finally went to bed. We'll see what happens when the Tylenol wears off. It could be a long night at our house!!

In other news: I do know that her liver tests results are back to her pediatrician, but when I called this afternoon - she had S's chart, but hadn't looked at it yet. Tomorrow morning hopefully.

Of matters of the heart, liver, etc.

I haven't written in a while because I have been so hesitant to write all that is happening down - maybe for fear if I do, it will actually be real. WARNING: This will be a long post. If I can actually finish it.

There is something wrong with our girl.

It really began at Christmas when she had the flu, and she has been fighting one thing after another for the last 5 months.

In Jan, a week after starting daycare S got Hand, Foot and Mouth.
In Feb it was the Adenovirus that had 2 trips to the ER and an overnight stay in the hospital. There were some issues with breathing and her heartrate then, but they were attributed to her dehydration.

Starting in Jan. she had seven ear infections and hearing loss that led to a tonsillectomy, adnoidectomy and tubes put in her ears in early March. She had some complications (see previous posts) which led to some heartrate (215 bpm post surgery) and breathing issues as well and 4 nights in the hospital and one more trip to the ER. Additionally she had high blood pressure every time it was measured. She was on two rounds of steriods and nebulizer treatments to treat the residual inflammation from the surgery (and the damage to her upper airway).

We honestly thought that the surgery would really help. And it did. But when the roar of the constant infections died down, there were more underlying issues that took shape.

The week she returned to school after her surgery, there was a stomach virus running rampant through her class. She got hit with some gastric issues that seemed to indicate that there was a liver issue.

One day I picked her up from school (they called since she had a fever) and when I got her home, she promptly fell asleep in my arms. I discovered that her heart was racing and she was breathing twice as fast as she should. (Max respiration rate for a toddler is 35 and she was consistently in the 60's. Her heart rate was 165 and should be closer to 110.)

Oh and did I mention her lips turned blue??....twice...only momentarily.

So the next morning we went to see the pediatrician and she ordered a chest X-ray which showed lung inflammation (but not pneumonia) and we were sent to the pulmonologist for an emergency visit. (It was here that her pulmonologist noticed that S seemed to stumble a bunch and wondered if it was related to sleep apnea and scheduled a sleep study for 2 weeks in the future). They changed her nebulizer schedule and added additional steriods and sent us home. For a while. Then the pediatrician called at 6pm. Due to the blue spells and the rapid heartrate (186!!) in the pediatrician's office, we need to be admitted for cardiac observation.

So we spent another night in the hospital (complete with S's first Easter egg hunt) and had an echocardiogram, EKG, and additional x-rays done. Her blood pressure was still up in the hospital and there were no clues given. They sent us home on a 24 hour heart monitor and she seemed to get better. She was still breathing rapidly and her heart would race and race, but no more blue spells or anything.

Until...

I picked her up from school a few days later and she was swollen. Her toes and fingers looked like little sausages. She wasn't acting abnormal, but just looked off. I knew that if we called the cardiologist that they would tell us to take her to the ER. But frankly I'm tired of the mystery diagnosis problem and the excessive co-pays every time we go.

So we went to urgent care first. They agreed that she was swollen and then they checked her blood pressure. Her arms were 106/62 (a little on the high side) and then her legs were 130/89 which is high....really high for her age. Her pulse was kind of fast too, so they sent us back to the ER. The ER doc suspected kidney issues (possible failure indicated by fluid retention) and ran a series of test. All kidney tests came back normal. But her liver, yeah, those enzymes were elevated. The mystery deepened.

We had a followup with S's cardiologist who did a second round of extensive testing. Another 24 hour monitor, echocardiogram, EKG etc. and pronounced that the issue was NOT cardiac related. There were no structural defects, no major issues that he could see. As grateful as I was that it was not her heart, I was really hoping to draw some conclusions from the cardiologist. But no such luck....Additionally, the cardiologist said that S's high blood pressure could not be substantiated because blood pressure readings in toddlers are not reliable. Even though she has had elevated readings (highest I've seen was 152/98!!) in multiple clinical settings over an extended period of time.

So armed with new lab results and a pronouncement of a "non cardiac related issue" we headed back to the pediatrician a few days later and she ordered follow-up blood work and seemed perplexed. She consulted with our gastroenterologist about the liver issue and they both seemed to think it was left over from a virus and so we are having blood work done in the meantime to recheck her levels.

We went to our sleep study in which M had to stay with her for the night.... In his business suit... Without even getting the chance to go home after work! M and I both had food poisoning a few days prior and I was not in any shape to be spending the night with a kid tethered to electrodes. The sleep study showed that S has mild sleep apnea (very, very mild) and so although sleep apnea can cause hypertension, this study didn't really show a cause for the extreme fluctuations in heart rate, breathing and the high blood pressure.

Which leads us to this morning. ..

This morning was the follow up appointment with the pulmonologist to review the sleep study and explore our options. Gratefully, we got the amazing nurse practitioner and she spent an hour discussing S's case. It had been brought up previously that there was a chance that S had an immune deficiency disorder, but she had never been tested. Florida law mandated testing for cystic fibrosis AFTER S was born, so in addition to the immune testing, she'll be doing a sweat test for CF as well. Oh, and looking to see if she has an alpha 1 antitypsin deficiency which could account for some of her lung and liver issues. Oh, and her heart rate was 160 at rest in the doctor's office.

Due to her balance issue (she is unsteady on her feet for a child her age) and the fact that she had some benign hydrocephalus issues when she was an infant, our pulmonologist is ordering a brain MRI to see if there is a neurological cause for these issues.

One thought (Guess???Isn't this all guessing at this point??) was that S's reflux had returned and she was silently refluxing in her sleep, so once the BIG things are ruled out/in then we can address that issue. Basically it involves a bronchoscopy to explore S's upper airway and upper lung tissue for damage (new damage from reflux or old damage from her earlier bout of reflux).

So if you are keeping track, since Christmas we've had 5 trips to the ER, 6 nights in the hospital, countless ultrasounds, heart function tests and blood test. And now we move on to:

A brain MRI
countless screenings for immune deficiency disorders
a sweat test for cystic fibrosis
blood work for her liver (which if elevated leads us to another ultrasound and possibly liver biopsy)
bronchoscopy to check for reflux

and wherever this road leads us next.

On the plus side, I think S has met her yearly max so the tests mentioned above should be co-pay free. Sad, isn't it...

Are you tired yet? We are! :(

I was fired from my job last week because I've missed too many days of work taking care of my girl, and then yesterday it seems like I have been UNfired. I'm sure when my boss hears about the impending tests and the work I will be missing, I'll be re-fired again. Sigh....

S's is the best thing that has ever happened to us and it breaks my heart to see her endure all of this. It breaks my heart for our family too - because this isn't how it is supposed to be!! We have our moments where we just want to scoop her up and run away to the mountains for a while - where no doctors can find us and just be. Simply be.

There are moments that this simply seems like too much. Too heavy of a burden, but then with a small giggle or her fantastic way of calling Elmo, Melmo....we are able to continue down this uncertain path. Together.

We are grateful for the messages, prayers and notes of encouragement (as well as the referrals to Duke, Johns Hopkins, and CHOP) and the support we have been shown over the past few months.

M sent me this in an email today after I called him to tell him the news...

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” -- Philippians 4:6-7

Side note: My brother joking said tonight that maybe her balance issue is because I had her in the wrong size shoes. Wouldn't that be wonderful if that was true.... :)