Tuesday, March 14, 2017

Life Flight

You know what is worse than being sick, even worse than being diagnosed a chronic illness..what's worse is seeing your child sick. Even just temporarily. I recently shared about the week I spend in the hospital as I was diagnosed with Lupus Nephritis. That week was nothing compared to the week I spent in the hospital with my 5 month old baby girl.

The crazy thing is, I wasn't even there that night. I wasn't there when Janessa stopped breathing and became unresponsive. I wasn't there when my Dad had to make the 911 call for an ambulence to come get a pale blueish baby. I didn't hear her 4 year old brother yelling for her to breathe.  I wasn't there when the EMT's rushed in and scooped up baby Nessa and said "Oh she doesn't look good" and rushed her out to the ambulence.  I didn't see when they couldn't get an IV and had to put it in her shin bone. This nightmare, it's a burden my parents had to bear.

But I was at the hospital waiting for her. Praying that the moment I got a glimpse of my baby girl that they wouldn't be performing cpr. Praying that she would be breathing, crying because if she was crying that means she was breathing! We had gotten a call from my dad that Janessa was coming in to the ER and I didn't think much of it because she had already been to the Emergency Room a couple days earlier.


As I shared recently, just a week earlier I had spent a week in the hospital and had been diagnosed with Lupus Nephritis. Even when I was released home, I spent most of my time in bed recovering, struggling with extreme exhaustion, headaches, fevers, and catching whatever virus' that kept coming into my home. All 3 of kids were fighting congestion and coughs. I was too weak and sick to care for them so my husband was holding down the fort and my sister and mom were helping out as well! My two girl's cough kept getting worse so when Janessa started a fever we thought it was best they go see a doctor. I didn't have the strength to take them so my sister and mom took both Alaya and Janessa and it was confirmed they both have RSV.

Alaya is two and said she would fight the virus off herself and wouldn't need medication but Janessa would need to have some breathing treatments to help with her labored breathing. At the clinic, when they put her in her carseat to go her O2 levels kept dropping. They were concerned how low it would drop so they wanted her to go to the Emergency Room for further and better monitoring. Since she couldn't be in her carseat, they called an ambulence to take her. My poor husband (local firefighter) was working the day they called for first responders to take a 5 month old baby to be transported to the emergency due to labored breathing and low O2. He knew right away it had to be Janessa and was then able to be with her in the hospital alongside my sister and mom.

At this time I had no idea Janessa's O2 was low and was being taken by ambulence to the E.R.! I was home sick in bed. I remember when my parents came in and told me the news. They told me I didn't need to worry, instantly I started to worry, and then explained that Janessa was in the E.R with RSV. It was a bit overwhelming for me after the weeks we had just had. I was still trying to cope with my recent diagnosis and still recovering from my time in the hospital. I had caught an upper respiratory virus as well and fevering on and off. It's already hard to be sick as a mom! And to be sick and have sick kids is even harder! And to be sick and UNABLE to care for sick kids, it's hard. I felt hopeless and hated I couldn't be there for Janessa. And yet so soooo thankful for family nearby and the care and help they gave!

Janessa was given a steroid shot and sent home that day because her O2 levels seemed stable. At home she continued to receive breathing treatments. As I mentioned, I was still awfully sick myself and spent a lot of time in bed so my husband took care of the kids and even stayed up in the night with Janessa since she wasn't sleeping well because of her cough and labored breathing. Being we were both being stretched to our limits those weeks even with help, my parents offered to take all 3 kids for a sleepover Sunday night to give Ryan and I a break and a chance to get some good rest.

That Sunday evening my Dad called Ryan and said they were bringing Janessa back into the E.R. We didn't ask for details we just said we would meet them there! Again, I didn't get too worked up because she had just been to the E.R. a couple days earlier and thought maybe she just needed another shot and continued monitoring. It wasn't until I got to the hospital I found out she would be coming in on the ambulence and that my parents had call 911 because she had stopped breathing and had stopped responding to them.

When I discovered these details, I knew it would become very easy for me to become emotionally and physically distressed. Being I was already extremely sick and had not been out of the hospital long and still struggling with high blood pressure, I knew I physically couldn't let myself get too worked up or else I would end up back in the hospital as well. It had to have been God's grace that came over me that night and carried me through. I remember feeling almost numb, like I was in shock from everything that was happening!

I was so weak. I coudn't hardly stand. I remember not even having the strength to pray. All I could manage to say was His Name. I just cried to Him, "Jesus! Please Jesus. Jesus" That's all. And that was enough. I knew He heard my hearts cry and plea even if I couldn't say the words. And soon word would be out and the prayer warriors in life would pray on my behalf for my baby girl and prayer chains were started.

Being numb to it all, I can't hardly remember everything they did at the Emergency Room. Her O2 levels were obviously too low and she was becoming distressed. They needed to get her O2 levels back up right away and so they put her on forced oxygen as well as another steroid shot and fluids and pain meds because she was obviously uncomfortable. The doctors and staff at our local E.R. were absolutely great but Janessa needing more intensive care and monitoring and so they called for her to be taken by helicopter to the Iowa City Pediatrics ICU.

That was a sobering moment. Watching your baby girl being taking away from you in a helicopter.
Her flying away.
It was such a helpless feeling.

We were not allowed in the helicopter but we knew she was in good hands. The helicopter was incredible and the team on it even better. They called it the "limo of all helicopters" because it was fancy looking and beastly. I guess nothing but the best for Princess Nessa. She arrived safely and without any issues. My husband rushed up to meet her there and the rest of my family and I packed up and headed to Iowa City. With me being sick and needing rest, we stayed in a hotel room for a few nights so I could get plenty of rest to try to get better and fight off my sickness. It was SO hard to be away from her!! And for my parents as well, it was all so traumatic!!

The next day was another rough day for Janessa. Her color was still awful and breathing still labored as well as just cranky from being uncomfortable. You couldn't blame her though with being so sick and having to have so many tubes hooked up, she had to have o2, feeding tube, iv, and chest monitors all hooked up. I hated seeing her so miserable. The nurses were incredible of course and so helpful and great at calming and caring for her. By Tuesday we finally started to see some improvement and a little color starting to return!

 Prayers were being answered!!

And by golly, once she turned that corner, she improved at a significant rate! Tuesday night she was able to eat from a bottle. By Wednesday she was smiling and acting more like herself! We were able to start to see our Janessa come back!!

Wednesday we were able to move from the ICU into the normal Pedatrics floor. We hated to leave are amazing nurses in the ICU but the nurses in pediatrics were top of the line as well and took great care of her.
As I mentioned, once she started recovering, she did so at an incredible rate! We were so blessed by amount of people praying for our baby girl, people we didn't even know, prayer chains all over the country were started on her behalf and we were seeing all those prayers being answered right before our eyes!
By Thursday, she was completely off oxygen and the doctors said she could go home! She still had some labored breathing so we made sure to follow up with her local doctor the next day but we were all so excited to be able to head home!

As Janessa was recovering and getting better, I was starting to feel a bit better myself so we were anxious to get home and to our own beds! Not to mention how much we missed the rest of the family!!

Janessa got home and continued to be on breathing treatments and had a steroid added to her treatments for a few days but she recovered wonderfully and is a healthy happy girl now! She decided since being sick she no longer wants to sleep through the night anymore, I think she got completely spoiled being held by her Papa all those nights she was sick, but I don't mind. I love having my happy healthy Nessa back! We feel so blessed and thankful for help, love, and prayers from our family, friends, and more that got us through that week!

Friday, March 3, 2017

Ambulance & Needles

It's been a whirlwind.

Honestly I'm not even sure where to begin. It's already been 1 month since my diagnosis, a month. Honestly, it feels like so much longer than that. February was the longest month that dragged on and on. But to start from the beginning, I should probably go back farther into January.

January Symptoms

January was a month mixed with awful headaches, extreme fatigue, hairloss, weight-gain, and my appetite acting weird. I was 4 month postpartum so I didn't think much of how I was feeling because being a mom of 3, I thought it was normal to always be tired and perhaps just low on iron.What makes these feelings odd, even though they may sound like normal postpartum issues,  I was actually getting plenty of sleep but still always tired, my hair was coming out in handfuls leaving thin balding spots on my head, and even though I had started dieting and exercising I was gaining weight. A few days before going to the clinic I started having a little chest tightness and would lay awake at night trying to catch my breath a bit. And I already mentioned the weight gain but I was beginning to get quite puffy. Ultimately it was the swelling and trouble breathing is what got me to where I knew something was wrong and I needed to get a check-up. You can see the swelling starting in the pics below.

I figured I just had something wrong with my thyroid so I decided to into a clinic and at least see what they had to say. The nurse took my blood pressure and asked if I normally struggle with high blood pressure or had any complications with my pregnancies. I said no, I've always had low bp and my pregnancies went smoothly. She wouldn't even tell me the bp numbers and went straight to the doctor who didn't even come see me and advised that I head directly to the Emergency Room because they were afraid of heart failure with a bp of 205/113. Those words were paralyzing. Heart-heart failure?? I'm only 25!!!
 I was fortunate to have family nearby to take my kids right away and my husband was off work so he took me directly to the emergency room where they started a million tests to see what was going on.

Needles, Needles & An Ambulance Ride

That afternoon, I had so many tests ran I can't even remember them all. Multiple Ekgs, xrays, chest scans, ultrasounds, bloodwork...oh my, the blood work. That was an experience in itself. Apparently my veins were not cooperating and wouldn't allow any IVs to stay put. It took 4 different nurses and ultimately they called in an anetheisiologist and an ultrasound to finally get an iv in me. I was in so much pain from be poked and prodded and them moving the needles around trying to keep a vein. Once they got the iv, they wanted to get my blood pressure down so they started me on nitroglycerin drops through the iv and called for an ambulence to take me to yet another hospital better suited for my situation.

A bumpy 20 minutes later, by now it was 8pm, I was being wheeled into another E.R. They were still worried about risk of heart failure so I was informed to lay as still as possibly and not to get up for any reason. The nitroglycerin has started to make me feel pretty rough, an awful headache had set, chest pain still, as well as my tummy was beginning to not be happy after a full day of my body being poked at and having no food. Tylenol wasn't cutting it so they pumped some morphine into my iv...and let me tell you, I'll be just fine if I never have to have morphine again!!! They wheeled me to the Cardiac Care Unit for the night to wait for an ultrasound of my heart in the morning.

The Next Day

Tuesday morning was the worst! The absolute worst I have ever felt in my entire life. The nitrgylcerin caused the most painful headache and the morphine made it even worse and now I was beginning to feel nauseous from all the medication on an empty stomach, which of course I still couldn't eat because I was waiting on the echocardiogram. My entire body ached. I was so miserable I couldn't even open my eyes. I remember thinking, "oh great, I might have Cardiomyopathy and I've caught the flu!" They wheeled me to the echocardiogram and we finally heard some reassuring news, my heart looks strong and I do not have Cardiomyopathy! Such great relief!! So on to the next tests, they wheeled me to get another ultrasound of my kidneys as well as a CatScan. Let's not forget a gazillion more blood labs drawn. 15 MORE to be exact. In the same arm. I was sooooo sore. I just wanted to cry each time they came in to take more blood! When it was discovered I would be needing chemo treatments, they decided I needed a different and new Iv. I wanted to cry, actually I probably did cry. Poke, wiggle, poke they couldn't get a vein and called in a specialist to put in a PICC Line. Even THAT took 3 tries! My body still feels beaten and is most certainly bruised from all the needles. If I were to count, between ivs, shots, lab work, etc I had over 35 needles poking me that week!!!

Kidneys & Protein

With my heart no longer the main concern, they started narrowing in on my kidneys. Because of all my swelling and test results they discovered there was an excess amount of protein spillage from my kidneys. Apparently it's normal to have some spillage but most people have less than 80mg spillage...mine was in the 8,000mg!!!! They wheeled me off again for another kidney ultrasound and ultimately a Kidney Biopsy that was then sent off to Mayo Clinic. My doctors were SOOOO good at keeping me updated and informed on all the tests they were running, what they were looking for, and possible diagnosis'. 24 hours later a diagnosis was confirmed...

The Diagnosis: Lupus Nephritis Stage lV

If you're unfamiliar with what Lupus is, I can relate. And even when I wanted to find out more of what it is, the diagnosis is so broad it can still be confusing. And even I am still learning about is so bare with me. Simply put, it's an auto-immune disease which means my own immune system fights against itself. There are varying forms and degrees of Lupus. Some people may develop a skin rash, others have pain-crippling rhuematoid arthritis, extreme fatigue, and other life complicating and even life-threatening symptoms.

Mine being Lupus Nephritis, my immune system attacks my kidneys which in turn also puts my other organs in danger. This would be why they were so concerned with my heart and reason for hypertension. At stage lV I am at high risk of kidney failure. The "good news" we got from biopsy, is so far no damage and scarring has not taken place so they started on medication and treatment right away to hopefully prevent damage. They immediately started me on iv steroids and the following day chemo treatments began. Stage IV is the more serious forms of Lupus being that is trying to destroy my kidney functions. The hard thing about this is it is hard to know what damage is being done until it has already been done.

A week in the hospital without my kids was so hard!! I'm forever grateful to live close to family who so willingly loved and cared for them while I couldn't! 

Treatment & Medications

At the moment, my daily medication list seems to be a mile long. I'm on strong steroids to suppress my immune system, meds to lower blood pressure, meds to lower high cholesterol, water pill, OS/Cal D,  iron pills, and plaquenil. I also will be going to get iv Chemo treatments (Cytoxan to be exact) every 2 weeks for 6 rounds. On top of my medications, the strong steroids I'm on make me what they call Steroid-Induced Hypoglycemic. Technically I'm not diabetic but my meds make it as if I am so I have to check my glucose levels a couple times a day and am on a low sugar diabetic diet as well as low sodium diet to help try and regulate and control my blood pressure. The doctors say my medication might permanently make me diabetic the rest of my life but we are hoping not. Which leads me to my diet...


Due to my high blood pressure I am on an extremely LOW sodium diet and as mentioned above, a diabetic diet as well. Even things you would think would be considered or might even say "low sodium" is still high for me. I'm fortunate to have married a health nut and if you know Ryan you know he is extremely knowledgeable in nutrition and how food effects the body so he has been amazing in the area of cooking and finding food I can eat. If you are curious what I eat, think vegetables! Lots and lots of vegetables (no salt added of course!) My carbs are WHOLE wheat whole grain and I try to stick with lean meats like fish and chicken. I don't entirely deprive myself of anything, but if I do eat something unhealthy it's a very small limited amount. For someone who's favorite food is pickles and mac&cheese a low sodium diet is not the easiest but I'm doing my best. Aside from the protein spillage numbers, the doctors were quite impressed with my lab numbers and how low my swelling has gone down and they said it's all kudos to my diet so that makes it easier to stick to. The last thing I want is to end up back in the hospital for a week again so if I can somehow help avoid that by eating healthier than by golly I'll try!


We are still adjusting from the month. I've only shared the FIRST week in February and as you all already know, so much more happened! But that's for another day. As you can imagine, our schedule these days are full of doctors appointments, more doctor appointments, and naps. Oh, and cuddles, lots of good cuddles.
Making up for the lost time we spent apart in hospital.