Those of you who know me well, know that the last week and a half have been pretty difficult for my family. On October 17th, John’s dad passed away unexpectedly. It was a devastating loss for us.
On Friday the 23rd, we flew to New York to attend the services for Pop. The church was packed! I’m not sure I’ve ever seen so many people attend a funeral service, except maybe on television. Everyone from the mailman to the guy who works at the corner deli was there to celebrate his life, and all considered Pop to be a close friend.
It was an amazing thing to be a part of, and also a very heart wrenching experience. The world has lost a great, great man.
The Sunday after the service, we flew home only to check Tiana in at Shriner’s in Chicago for her posterior spinal fusion (with instrumentation). The surgery was performed on Monday, and took a little over seven hours to complete. My girl came through with flying colors, just like she always does.
While she was in surgery, John commented to me that this surgery hadn’t been as terrifying as some of those that had come before it. He thought that maybe he was just numb, and I agreed. I likened it to my cup already being too full, I just couldn’t add anymore, there was no room for the fear and anxiety I would have normally been feeling.
Wow, was I wrong.
My mom spoke to me a couple of hours after Tiana had gone into surgery to let me know that Jenna was running a very high fever. It had lowered a bit with ibuprofen, but it wasn’t remaining stable. Throughout the day, Jenna continued to have a temp that ranged from nearly normal to very high, and as soon as Tiana was out of surgery I headed home to check on my other baby.
When I arrived in Racine, Jenna was a little warm, but nothing high enough to write home about. I took her temp twice at the hotel where she was staying with my parents, and the highest reading I got was under 101. I decided that she would be fine for the night, and left her there to sleep while I went home.
Just two hours later, as I was settling into bed, I got a phone call saying her temp was over 104. Panicked, I didn’t even change out of my pajamas, but threw on a pair of shoes and ran to the hotel to get her and take her to the ER.
At the hospital they filled her with fluids, and managed to get her temp down to something a little less scary. They also screened her for the flu, and the test came back positive for Influenza A.
I’d had quite the scare. Worrying about two kids at once, who are in separate states, has got to be a mother’s worst nightmare; or at least it would be if you were ever in a situation where you could imagine that would happen. I made Jenna sleep in my bed with me, and I kept my hand on her forehead the entire time, alert for the slightest rise in temperature.
I’m not ashamed to admit that I cried a little bit too. It all felt so overwhelming. I wondered how much more I could deal with, and I was pretty confident that I was reaching a breaking point with the level of sadness and worry that I’d felt over the last week, not to mention the lack of sleep and the bad dreams I've had since Pop died.
But hey, trouble comes in threes, so it had to be smooth sailing from here on out… Right? Right?!?
Not so much.
Being the good, responsible, concerned parents we are, John immediately reported Jenna’s virus to the staff at Shriner’s. They were sympathetic, but only mildly concerned, and for the next 24 hours, life stayed on track.
Tuesday evening, I arrived to take my shift with Tiana. John and I like to trade off every night so at least one of us is getting a decent nights sleep in a real bed. It limits the exhaustion that quickly snowballs if you have to stay on those horrific torture devices they call “parent beds” for too long. John and I talked for a few minutes, and he headed home.
Tiana had been coughing a bit when I arrived, and her temperature was elevated a little, but that’s not all that unusual after a surgery like she’d had. As the night progressed, the fever went up a small amount, but she never felt hot to the touch and since the temp display was in Celsius I wasn’t sure how high it actually went. Her cough pretty much stayed the same though. At around 10pm, they decided to put her back on an oxygen mask because as she was sleeping she wasn’t taking deep enough breaths to keep her oxygen saturation at an acceptable level. Also, completely normal for the surgery she had. Simply put, it hurts to breathe after they mess with all of the muscles and bones in your back.
After she had been on the oxygen for about an hour, and complaining about it the whole time I might add, a nurse came in and asked her how she was doing. She said her throat hurt from the mask, and asked if she could please take it off.
Wrong thing to say kid… Wrong thing to say… A bomb blast would have gotten a less subdued reaction.
Immediately the nurse was on the phone, to whom I’m not sure as we later learned that Tiana’s doctor was never notified of the situation, listing off her symptoms as a sore throat, cough and high fever. Hmmm…. do those symptoms sound anything like something you’ve heard about in the news? Everyone was sure she had H1N1, especially considering that her younger sister had just been in the ER for the Flu. Of course Jenna had Influenza A, not H1N1, but that was apparently just semantics.
They made sure that I knew how dire the situation was. She has a compromised immune system from the surgery after all, and with her sister having been so sick, it was likely to hit Tiana like a ton of bricks.
They moved her to an isolation room to keep her from infecting any of the other patients with the deadly virus they were sure was taking hold of her body, and I slipped outside and sat on a patio for awhile; snippets of news reports I’ve heard and read flashing though my mind. I totally broke down out there in the cool, quiet October night. I cried, I begged and pleaded with God and anyone else who was listening, I felt as if my soul had snapped in the middle.
“You already took Pop,” I muttered over and over, “You can’t have her too.”
I have never been so afraid in my entire life.
I sat there for a long time, crying so hard my breath came in gasps and my face burned. I called John and cried, I called my mom and cried, and then I called John and cried some more.
And all of it… All of it was over absolutely nothing, like I’m sure any health care professionals who are reading this already realize, but I was not to learn that for another 12 hours.
The next morning her doctor came in, furious when he learned what had transpired overnight with out his knowledge. To speak plainly, he was pissed. He let us know that all of the flu symptoms she was exhibiting were also extremely common things that occur after a posterior spinal fusion, and that they had over reacted based on the fact that Jenna had the flu; Influenza A remember, not H1N1. I asked him about the high fever, and he informed me that the highest fever she ran all night, when translated into Fahrenheit, was just a little over 101, a perfectly normal post-op temp.
They took a sample to test Tiana for the virus, but in the meantime decided that John and I needed to wear masks outside of the isolation room as a precautionary measure since we both had been exposed to Jenna. This was at about 11am on Wednesday morning… Wait… They were informed that Jenna had the flu at about 2am Tuesday morning, if we do the math quickly we come up with the 33 hours it took them to decide on that “precautionary“ measure. John and I were understandably stumped. Why now? The doctor had just informed us that Tiana’s symptoms were just as likely to be from the surgery as they were to be from any form of the flu. Oh, I get it… Guilty until proven innocent.
At this point Tiana’s starting to get a little freaked. Everyone coming into the room looks like they’re getting ready to take her into surgery. She asked me several times what was wrong with her, and if she was going to be OK.
She was ready to be discharged from the PICU, but they didn’t want her in the general ward until they knew what was going on with her. So we waited on the test results…
Tiana’s fever broke, and we waited…
They pulled her catheter and IV’s, and we waited…
She got out of bed for the first time after her surgery, walked around the tiny isolation room, and we waited…
She watched two DVD’s worth of Animaniacs and three Futurama movies, and we waited…
Finally they decided to just take her down to the ward. They said the results weren’t back yet, but that they would just put her in an isolation room to be on the safe side.
So downstairs we went, but the room wasn’t quite ready yet. As we were standing there waiting for them to figure things out, one of the nurses on the floor asked why she was going into isolation. The nurse who had just told us that they didn’t have the results back yet said they were taking “precautionary measures.” To which the floor nurse promptly replied that the results were back and they were negative.
John and I looked at each other, and then quickly turned to the nurse who was rapidly shaking her head no at the other who had spilled the beans, and demanded to know what was going on. She stammered something about preliminary results, and tried to make a get-a-way through the nearest door. Unfortunately for her, she was still pushing my child in a wheel chair, so I had cause to follow her.
Once cornered in the room she told us that even if Tiana’s results were to come back virus free, they would still keep her in isolation until she was discharged as a (can you guess?) “precautionary measure.” It seems that with the H1N1 panic, you’re guilty even after you’re proven innocent.
Hearing that, Tiana started to cry. She wanted to go out to the mall where they were having pet therapy, she wanted to pet the dog. She wanted to be able to participate in the craft activity on Thursday, she DID NOT want to be cooped up in a tiny little room any longer, especially if she was NOT SICK!
At this point her doctor entered the room and asked what was going on. A brief synopsis was offered by the parties of each side. To his credit, he shook his head, sighed, and promised my little girl that if they hadn’t released her from her prison by the next morning, that he would let her go home a day early. I guess he believes that her improved mental state will out weigh the benefits of an extra day of in-hospital post-op monitoring. Personally, I agree.
I left shortly after that, it was probably a good thing because I was already mad enough to spit on someone, and the situation degraded even further after I was gone. They tried to confine John to the room with her, even though he is completely asymptomatic, as a “precautionary measure.” For those of you who have the pleasure of knowing my husband, I’m sure you can guess that he was having none of that.
A doctor, who is not Tiana’s surgeon, came in and told John that Tiana HAD in fact tested positive for H1N1. He said the negative result was an error, but at this point we’re not really buying it…
First of all, They lied to us at some point in time saying the test results weren’t in, when they were in fact there. Even if they believed they were erroneous, they lied about it, which makes anything they say after that automatically suspect.
Second, this is the second test result that they’ve made a mistake on in as many weeks. Either they need to get better equipment or someone is spitting in her samples.
Lastly, I’d like to remind you once again that Jenna wasn’t diagnosed with H1N1, Jenna has Influenza A and, two days later, is already over all of her flu symptoms (which further supports the conclusion that she does not have H1N1). What are the odds of two kids in the same family getting different strains of the flu at the same time? John requested a copy of those results, let’s see if he gets it.
Now the real kicker here is that Tiana was never in any real danger. They started her on TamaFlu right after they began to suspect she might have a virus, and her temp never hit a dangerous level. She does have a suppressed immune system right now, which makes it a little more difficult to fight off infections and viruses; however, it is not critically so, and with the aid of the TamaFlu, she will likely have an easier time getting over it than Jenna did without medication.
You keep hearing scary stories in the news about kids with H1N1, but let’s lay out some facts here…
So far the number of deaths attributed to H1N1 since March is just over 1000. That breaks down to about 125 a month. The average number of deaths each year attributed to the seasonal flu is 36,000. That’s 3000 a month. Looking at those stats, which one would you rather get?
Another thing we keep hearing about is that children with no apparent underlying health conditions are dying from H1N1. What the media isn’t reporting is the “apparent” part. On cursory examination most of these kids look healthy, but on autopsy they’re finding that the vast majority of them have undiagnosed health problems. Think about it, how many people are screened for a heart condition if no evidence of one exists? They’re not, it’s not until a problem occurs that they get checked. Then they find that they might have been living with a problem for many years without even knowing it. We heard this a lot about heart conditions with our HOS support group. Most of them never knew there was a problem until something went wrong.
So was there potential for Tiana to get sick? Yes. Was she going to die? No. You see, since she’s had her condition since birth, we know for a fact that she has a strong, healthy heart, liver, and kidneys. She was screened for all of those things when they were trying to figure out what her birth defect was. So H1N1 would be a nuisance for her, nothing more.
Now I know you’re thinking about the other kids in the hospital because I am too. Honestly, I would not care to have the death of a child on my hands. However, these kids can succumb to a multitude of infections that are passed from one person to the next, along with other colds and viruses. All of them have the potential to hurt them as much or even more than H1N1. The solution to minimize the risk is the same as it’s always been before the media decided that H1N1 was a killer. Proper hygiene is the key, not putting prison bars on their hospital room doors.
At some point you have to ask if you’re hurting more than you’re helping. They kept talking about “precautionary measures,” and saying “you can’t be too careful,” but you can. Shriner’s has always put the emotional and mental well-being of the kids as high as their physical well-being. Sadly, in the hysteria over a new buzz illnesses, they lost sight of that today. It’s disappointing to say the least.
The good news is that they corrected Tiana to a 30 degree curve, her back is looking straight and beautiful. She’ also recovering in her normal—faster than the speed of light—fashion, and should be home tomorrow. I want to thank everyone for your support, prayers, and love over the last two weeks. Our family couldn’t have made it through all of this without our awesome network of friends and family. We love you all!