Scariest Moment of our Lives

Yesterday we woke up in Fresno. We had been visiting for Kansas' 1st birthday party, which was AMAZING! She had a Hungry Caterpillar theme, and her moms went crazy with decorations and food. So much fun!

So, we went to bed after a long busy fun-filled day. The next day, Monday Feb 21st (president's day) we were relaxing and planning to get ready to head home with the 2.5 hour car ride. Makena was fussy so I went to lay down and nurse her and she fell asleep for a nap. She was fidgety and restless the whole nap. I couldn't get up and walk away like usual because she just wasn't sleeping soundly at all. After an hour had passed, she woke up and we went back to the playroom to play with Kansas. Makena was warm. Pam had noticed it earlier, but now she was definitely feverish. I nursed her and then I walked into the kitchen with her and she threw up. Luckily, I was standing next to the open trash can. lol. We took her temperature and it was 100.4. That was at about 10:30am. We gave her ibuprofen to help with the fever.

We decided to take it easy and make sure she wasn't going to be puking while on our car ride. She seemed fine, was walking around and playing, so we hit the road a little after 2pm. We were supposed to be back for her 1 year old photo session that evening at Sears, but canceled the appointment. For the 3rd time...oy! Makena napped for over an hour, then she woke in a good mood so we stopped at Casa de Fruta. We looked at doggies and ducks and rode the train.

While waiting in line for the train I shifted Makena in my arms and my fingers touched the skin on her back. I could feel how cold my fingers were on her warm back, and she shivered and threw herself backwards oddly. I went to sit down and she...shivered again a bit. It was different, and I told Pam about it and we wondered if we should get on the train, but she seemed fine. We took the little train ride, and Makena was still and watching the whole time. Didn't even flinch when we went through the tunnel and the driver had everyone scream as loud as they could (not cool) and a few times we checked her but she seemed to be just relaxed and watching the stuff go by.

Got back to the car and I sat and nursed her, and then when she sat up she threw up again. We put her in the car seat and drove home, and she fell asleep again. Odd for her to sleep again so soon after waking. But we knew she wasn't feeling well. She was warm, and Pam noticed she kept jerking a little bit, kinda like when you are falling asleep sometimes and do a little jerk. (You've had that happen, right?! It's crazy.) We got home at about 5:50pm. Came upstairs, said hi to Donte and Dorothy, and Makena was walking around and happy to be home with her toys. She grabbed her baby doll. Pam took her temperature, it was 101.9. We gave her a second dose of medicine.

We were minutes away from the worst, and had no idea what was coming.

She didn't like taking the medicine, so I was soothing her and she melted into my lap as I sat on the floor cuddling her. I sang Baby Beluga, and Pam was about to take the broken TV down to the dumpster so she was outside. Makena was staring at the Elmo balloon that we still have from her birthday party. She was staring at it without blinking, but she started to look higher on the ceiling. I followed her eyes, and couldn't figure out what she was looking at. I looked back at her, knowing something wasn't right. Her eyes were slowly rolling back. I told Pam to call the Dr. We couldn't get the right number for the night nurse, but called the regular number to be re-directed at 6pm. I was looking in my phone because I have the number in there, and then suddenly Makena went limp and turned blue. It was the fastest scariest thing ever. Pam said "She's blue!" I passed Makena to Pam as I was dialing 911, and her body was like jello, her head fell forward, she was completely blue, and totally non-responsive. I panicked, yelled at Pam to do something. She said something but I don't know what. But the look on her face was enough to show me that I was not overreacting. This was a real emergency. According to the phone call history it was 6:02 when I placed the 911 call.

It was beyond a nightmare. It was mere seconds that lasted a lifetime. It was the horrifying thought of "this can NOT be it. NO this is NOT the end. THIS IS NOT HAPPENING!"

It was terrifying. I could hear Pam saying "Makena! Makena!" And I ran outside. I think I wanted to be sure I had clear reception?? And I couldn't handle being in the house. The 911 operator was annoyingly calm. She asked for my address, made me specify if it was "d as in david" or "v as in victor" and I think I yelled "V! VICTOR!" I wondered if any neighbors were hearing me in hysterics and then realized I was relatively calm. I spoke with urgency and fear, for sure, but it was not chaotic. Then she asked for my phone number. (I remember thinking with dismay that I was calling from Pam's cell phone, and not a land line. And they always say not to call from a cell because it takes them longer to arrive. But, we don't even have a land line. I have always looked up the direct number for emergency services in whatever city I lived and had them saved in my phone, but I never put in the number for our city because I couldn't find one.) I was appalled that I didn't even get a chance yet to say what was wrong and that we needed help. FINALLY (a few seconds later...) she asked me to state my emergency. "My 13 month old daughter just turned blue and we need an ambulance, she has a fever then her eyes rolled back and she went blue and" and she interrupted me and asked if she was breathing. I realized with horror that had no idea. I HAD NO IDEA IF MY BABY WAS BREATHING. I ran back inside and I could hear her crying. Pam was sitting in the bathroom with Makena in her arms. "She's crying! She's breathing! Can you still send someone?" I was not as composed as I wish I would have been, and know I was supposed to be. She told me the paramedics were on their way but she wanted more info from me first. She had me count the frequency of her breaths, so I had to say "breath" every time she breathed. It was slow, and Makena was making a little grunt with each exhale. The 911 lady asked if she had made any jerking or twitchy movements before turning blue, and I said yes. Then she told me it sounded like she had a febrile seizure. In the back of my head I knew immediately what that was. A seizure brought on by a fever. Not life threatening. I picked up my cell phone and pressed the speed dial number for my parents house. My dad answered, I asked him to tell mom to come over as fast as possible. He gave the phone to her and I was crying and just said the same thing. She said she was walking out the door and I hung up.

I heard sirens and realized they were for us. We hear sirens all the time, sometimes they are so loud that I get worried/annoyed that they will wake up my napping baby. We are very close to 2 fire stations. But to hear that very familiar sound and hear it get louder as it comes rushing to help you, was a very different feeling. I went downstairs to flag them down, and the 911 lady kept trying to ask me questions but I just wanted to deal with an actual person who would help me. She told me to stay with the baby and not leave her alone, that the paramedics would find us. But I told her she was okay and with her other mom. (I had a very brief moment of wondering what she made of that.) A fire truck pulled up, and an ambulance was right behind it. The driver hopped down and was NOT in any rush. He was walking towards the back of the truck to meet up with the other guys who were getting out. They were all walking. WALKING. Infuriating, but I felt a thousand times better seeing them. I told the 911 lady that I was with the firemen, thanked her, and hung up. Actually I think I just turned my phone off.

I filled in the fireman with what happened as we walked up the stairs and in to our apartment. Pam was sitting with Makena on the couch. She was sitting up, but still not right, looked very lethargic and out of it. I can't remember what happened next. I think I was so relieved that everything was okay in that moment that my brain turned off. They attached a blood oxygen monitor thing to her toe. They took her temperature. I don't remember what it was, 100.4 or .6, but they were happy to see she had color. They listened to her lungs with a stethoscope. I think there were 5-6 firemen in our living room. They had a lot of gear with them, and we had just walked in the door from our road trip so we had suitcases and stuff all over the floor as well. 2 paramedics started to come in but they told them it was okay and they left to wait outside. I knew that was a good sign.

She slowly became more like herself, and they were talking and telling us what a febrile seizure is and what to do now. They said to undress her, and told me to get a cool washcloth, but then they thought she looked fine and didn't feel hot so she didn't need it. The fire captain said something to one of the younger guys that sounded like "go get a bear." (what?!) She started to fuss and cry, and they said that was very good, that after the seizure her brain needed time to re-boot and that's what was going on. They said she looked stable, and said they recommend we go to the ER to get her checked out by a doctor. They said we could take an ambulance or drive ourselves since our hospital is so close by, and that she might have another seizure but they don't think she will during the drive. If so, to pull over and call 911 again. We opted to drive ourselves. We signed paperwork, and as they were finishing up my mom walked in. A fireman gave Makena a small stuffed bear with a Santa Clara Fire Department shirt on it. I told them that I was surprised how fast they arrived, since I called from a cell phone. But they told me that the county calls are all passed through the Santa Clara city dispatch, so that's why there's no direct emergency line for this city.

We thanked them, and they left. We got Makena dressed in some snap footless jammies, and took her to the hospital. My mom followed behind us. We had stuffed the diaper bag with a bunch of stuff, not knowing how long we'd be there. We didn't think to get any food or water. Pam and I were dressed ridiculously- When we had gotten out of the car at Case de Fruta it was cold, so I threw on a v neck sweater over a t-shirt, and Pam put a scoop neck long sleeved shirt over a t-shirt.

We got to the hospital a little before 7pm and I didn't know where to park. And I was frustrated that the signs pointing to the emergency room were not very clear in the dark. They should have been lit up! We parked in a close Out Patient Only spot and went inside, checked in and sat and waited for about 50 minutes. Pam was a genius and had thought to bring a phone charger, and that was awesome. I nursed Makena a bunch, she tried to sleep. We read her books. Watched Jeopardy and Wheel of Fortune. Pam called the Doctor again and left a message for Dr. Wally. The nurse said she'd let him know and we'd probably hear from him tomorrow with a follow up call. We were called in to the triage room and a nurse weighed Makena (24 lbs) took her temp (100. something) and told us to undress her and asked some questions. THANK GOD when she asked if she'd had any recent vaccines we could say no!! It felt GREAT to know that this wasn't brought on by a vaccine. Oh yes, check those vaccine inserts and sure enough some of them pose a risk of febrile seizures. And it's listed as a minor side effect. In fact, if a child has one following a vaccine the doctor is required to report it. I couldn't make this stuff up if I tried. Infuriating. I wish we had what happened to Makena on tape and could show that to people who are considering vaccinating their babies. /vaccine rant.

We were told to go wait to be seen by a doctor. We knew it was 8pm when The Bachelor came on. Then Makena's name was called and we went to follow the doctor but he said only 2 adults were allowed so my mom stayed in the waiting room. (Hindsight, we should've asked her to go get us some dinner! lol.)

We were put in a room, right across from the nurses station, with just a curtain for privacy. It didn't keep out all the light and noises, and Makena was so exhausted. A young female doctor came in and we told her what happened and that they were going to run a few tests to try and figure out what is causing the fever, since she didn't have any symptoms like a runny nose or cough. She mentioned getting some blood work done, a chest x-ray to check her lungs, a catheter to check for a UTI. She left and I broke out my phone to google alternatives to a catheter, because I knew I wasn't going to consent to that unless it was absolutely necessary. A nurse came in with the catheter kit and started to explain what they were going to do and I said, "Actually we're going to decline the catheter."

[Silence, for slightly longer than a normal pause in a conversation.]

"Ok... I'll let the doctor know."

She left and I could hear the low voices at the nurses station "...says they don't want it..." "the patients mom" "declined" "I'll call the doctor."

I could almost hear them rolling their eyes and shaking their heads.

Here's the thing. I don't have a lot of faith in doctors. I believe they are by far great people who want to help save lives, and that's extremely admirable, no doubt about it.

I also think they want to be efficient. And I think that's a system that works well when you are dealing with a lot of cases and want to hurry and see everyone as soon as possible. But I'm not willing to blindly follow everything they recommend without being fully informed first. So yes, I'm that person who questions and wants to research and get second and third opinions. And now that I'm that parent, it's even more important. The doctor looks at a sick child and wants to fix it and move on to the next patient. I look at my sick child and want to fix it too, of course, but I want to take the time to be absolutely sure I agree first with what the doctor suggests. I want to take the time to do what's best for MY child. Not what's best for the doctors schedule. Selfish? Perhaps. But I feel proud that I know how to stand up for what I know is the right thing. It bothers me GREATLY that so many people will do whatever a doctor says, no questions asked.

So, I stood up for Makena. I didn't want to subject her to a catheter unless it was the last resort. And, I know there is the option to have a bag taped to her to catch the urine before it hits her diaper, so I wanted that choice to be offered. The doctor came in shortly after that, and I knew it was coming. The scare tactic. She was all sweet and smiley, but inside her head I knew she thought I was being a pain.

"If you don't want to do the catheter we might have to do a lumbar puncture, and that's a lot more serious of a procedure than the catheter, which is just a verrrrry thin tube that collects a urine sample from the bladder."

I heard her explaining more, but stopped listening. I'll fill you in on what was going through my mind.

A lumbar puncture is a spinal tap. It's takes a sample of fluid from the space between the spine. It's normally done to test for meningitis. Yes, I knew all of that. A catheter is a tube that is inserted in the urethra, to test for a bladder infection or UTI. Totally traumatizing, and comes with risks. None of these risks were explained to us. No other methods were offered.

And the doctor was no threatening me that if I didn't consent to the catheter that we might have to get a spinal tap. Umm, they test for 2 different things. Scare tactics won't work on me. I'm too suspicious of you to begin with so you are only making yourself look worse in my eyes.

Meanwhile, Pam said "Katy, you probably know what a lumbar puncture is, but I don't, so can you explain that?" and the doctor looked at me and asked if I were in the medical field. "Nope, just very informed." Oh, if looks could kill. She turned to Pam (probably willing her to be a sheep who would follow her) and explained the procedure. Luckily, Pam has put faith in me because she knows I'm passionate about this stuff to look into it and discuss before allowing anything.

She left the room and we waited some more. It was late, and we tried to keep Makena entertained and comfortable. She was still in only a diaper. The longer we waited we were frustrated that they hadn't attached the bag yet to catch her urine, because she kept peeing in her diaper. A nurse came in and did the nasal swab, and sheesh that swab goes far!! Makena cried but it was quick and she was fine.

Outside we overheard them mention Dr. Wally's name. He's Makena's pediatrician, and we love him. Then we were called to get the x-ray, and Makena had to sit on a little stool while Pam crouched next to her wearing the lead vest. The technician explained that if she couldn't sit still to get a clear x-ray we'd have to make her wear a huge scary looking clear tube contraption that would force her to be still. Luckily, she did great. Then she had to turn and get an x-ray from the side. We went back to our room to wait some more.

Then Dr. Wally walked in. I had a quick moment of wondering if he was called to lecture us about getting the damn catheter. But it was clear that he came to offer us support. He said he was in his office finishing up paperwork and was ready to leave when he saw the fax that the night nurse sent. And instead of going home and calling us tomorrow, he decided to stop by to offer a friendly face. :) This doctor is so freakin awesome. We felt like celebrities. The staff all knew him, we kept hearing "Hi Dr Wally!" and we couldn't help but feel special that he was choosing to spend his time with us instead of going home at 9:30 pm on a holiday.

He listened to our whole story, then gave us advice (stopping to tell us about when he first moved to CA and saw the brown dead grass on the hills and realized those were the golden hills...lol?!) and he asked us about 10 times if we had any questions for him or if there was anything he could do to make us feel better. I asked what he recommends we do, and he said whatever the doctor assigned to us suggests. Then he said he'd check who was on our case because he knew everyone and would be sure we got the best. Makena was asking for milk so I started to nurse her and he got up and closed the curtain all the way. haha. Then she fell asleep so he turned off the lights. He's just so sweet and thoughtful! He left after about 20 minutes, and then I went to ask the nurse what exactly we were waiting for. She said it looked like our test results were back and we were just waiting for the doctor to come back from doing some sutures on someone.
Around 10:30 we were visited by a new doctor. An older man who said "I saw Dr. Wally was here, he and I go way back. You have a great doctor!" Then he explained that the tests looked good, there were no infections, and we were free to go home. A nurse came in with discharge papers and told us to keep fighting her fever for 48 hours with Tylenol and Motrin switching off. Which is funny because Dr. Wally said not to do that. He says he doesn't like that method, called it an old wives tale, and feels that there is no benefit. Also he thinks Motrin can upset your stomach so just to use Tylenol. Fine with me, the less medication the better!

So we left and went home. Pam went back out to buy some Tylenol, and then Makena fell asleep. Poor baby was exhausted.

What's the most ironic thing? She had the nasal swab and a chest x-ray.

....

That's right, she never had a urine sample taken. They didn't even bother with the bag. The (new) doctor decided it wasn't even necessary.

SO IF WE HAD CONSENTED TO IT, IT WOULD HAVE BEEN POINTLESS!!!! Good lord.

Makena has been fine, she's been playing and happy, but yesterday she was definitely more clingy and fussy than normal. She napped a lot, then it took 2 hours to get her to fall asleep at bedtime. My mom came over in the morning after I called and woke her up asking her to bring some groceries for breakfast. And some Krispy Kreme donuts. So she made us a big egg and potato breakfast then played with Makena while I took a bath. Pam decided not to go to her classes, so we just took it easy at home.

The worst part is that because the fever came with an undiagnosed cause, she has a higher chance of another febrile seizure happening. In fact some kids get them whenever they get a fever. Some kids only once. So scary to know if could happen again. And apparently Makena's was bad because she actually stopped breathing and went unconscious. That doesn't always happen.

Here is some more info, thanks to babycenter.com:

What is a febrile seizure?

It's a convulsion caused by fever in a child between the ages of 6 months and 5 years. If your baby has one of these seizures, he may roll his eyes, drool, or vomit. His body may twitch or jerk and his limbs may get stiff. His skin may appear a little darker than usual, and he may lose consciousness.

The seizure may last only a few seconds or 15 (very long) minutes. (If it lasts longer than a few minutes, call 911.) Afterward, your baby might seem a bit sleepy, or he might seem just fine.

In most cases, febrile seizures are harmless, but that doesn't make them any less terrifying for you while your baby is having one. And you do need to take immediate action when he has one.

Febrile seizures tend to happen in children with fevers of over 102 degrees F, but they can happen at lower temperatures. They don't necessarily happen when a child's fever is at its highest, although they do tend to occur during the first 24 hours of a fever.

How common are febrile seizures?

Between the ages of 6 months and 5 years, 3 to 5 percent of children will have a febrile seizure. One-third of these children will have another one, and about half of those will have a third. Febrile seizures are most common in the toddler age range.

A child is more likely to have febrile seizures if either of his parents had them when they were young. Kids who have their first febrile seizure in their first year of life are the most likely to have another one. A child is also more likely to have a second seizure if his fever was low when he had his first one, or if the seizure occurred early on in his fever.

What should I do if my baby has a febrile seizure?

Quickly place him on his side, away from hard objects. Gently turn his head to one side so he won't choke if he vomits. Loosen his clothing if it's constricting him. Make sure he doesn't have anything in his mouth, and don't put anything in his mouth while the seizure lasts. Don't try to lower your baby's fever during a seizure by giving him medication, putting him in cool water, or sponging him off.

If your baby's seizure lasts longer than a few minutes, call 911. Also call 911 if he has difficulty breathing, if he's choking, or if his skin turns blue. (Even if it doesn't last very long, try to note the length of time so you can tell his doctor.) Otherwise, wipe away any vomit and call his doctor after the seizure is over — no matter how short it was — if it's his first one. She'll probably want to examine him to make sure he doesn't have a serious infection or other problem that caused the fever.

Can I prevent my baby from having a febrile seizure?

Some parents try to prevent febrile seizures by promptly bringing down any fever. But seizures tend to occur suddenly, sometimes before you even realize that your child is ill.

If your baby has a fever and he's had a febrile seizure before, it's understandable that you'll worry about a replay. Talk with his doctor about your concern. She'll be able to tell you if and when it's wise to try to bring down his fever.

If your baby frequently has febrile seizures, his doctor may suggest a drug to give him whenever he has a fever to lower the risk of a seizure. Such drugs have side effects, however, and in most instances, since febrile seizures are generally harmless, it's unnecessary to take preventative measures.

Are febrile seizures ever a sign that something is seriously wrong?

Usually the fever that causes a febrile seizure is the result of a viral upper respiratory infection, roseola, or an ear infection. But in rare cases, the fever is a symptom of meningitis or another serious problem. Your baby's doctor will consider his symptoms and screen him further if necessary.

So that's that. And now we just try to go on with our life and hope it doesn't happen again.