Sucky Week:28975 – Us: 0

So this week wins.

But I will not cry.

I will not cry.

i. will. not. cry.

Roll back to 2 weekends ago when we discovered that the fish tank in Ben’s office had leaked out of the filter, and into the carpet, and into the floorboards below that. we had to rip up the carpet, live with the crappy feeling of mold circulating in the air for the last couple weeks, and now replace the padding in that room. This past monday the week came roaring in with a “derecho” – basically an inland hurricane. I’ll spare you the details but let’s just say that for a few seconds I had a VERY REAL FEAR that I would become infamous for being that woman who the whole neighborhood saw on the toilet when the entire side of the house got ripped away. It was one of the loudest noises I have ever in my life heard. The whole house was shaking side to side. Then we had to go out  and clean up stuff out of trees and from two streets over because it was trash day. Good times.

Tuesday was Kaylen’s birthday, and the birthday fairy DID deliver the special new bike she wanted! Since it is her 4th birthday, this is her year for a real party (with friends, vs just family at home with cake), but of course, life is

all crazy-like right now, so it won’t be anytime soon. We tried to go have a good time with some friends, but Kealey started feeling very badly so we headed home early from those festivities. Kealey fell asleep in the car and basically went right to bed when we got home (at 1 in the afternoon) – and within an hour of us getting home, the nurse let me know that Kendall had a fever also. Kendall gets “fevers” anytime she’s outside for more than ten minutes, but they usually respond to ice packs/tylenol/going to sleep. This time she hadn’t been outside and hadn’t really gotten off the couch all day, and it was MUCH higher than her usual fevers (102.5), so I figured something was up. I took Kealey’s temp at that point and sure enough, she was 102 also. Now, in a kid with a central line, you are “supposed” to head in to the ER for  cultures/antibiotics/further evaluation whenever your temp hits 100.5 (technically a fever according to the hospital). However, Kendall can get up that high going from the back door to the car, so I had a little pow-wow with some of our docs up in Milwaukee about the unrealisticness of that as our baseline “come here now” temp, so we were able to get them to concede that 101.5 is our “fever” guideline. Keep in mind that Kendall typically hangs out in the low 97 range, so you can imagine the crazy swings her body is taking on most days. Of course the week after we agreed to the 101 range, she decides to start flirting with 101.3 or 101.4 every day. *Hand to forehead*  So anyways – I am standing there trying to convince myself that maybe 102 is her NEW new baseline and is probably ok, when we put her on the monitors at home and she is beyond tachycardic and working to breathe in spite of 2L of oxygen.

So then my argument in my head is – how can i convince them to let me draw cultures at home, since I am relatively sure that she and Kealey probably just both have a summer virus? We decided to go to Edwards, where they a.) don’t know jack shank about complicated kids, and b.) are scared to death of her and her attachments so they try to shuffle us out of there ASAP! PERFECT!!!! I’ll take it!  So we headed in – leaving the other three wailing and gnashing teeth because they know when we go to the ER, we usually don’t come out of it for a few days. No one was in the mood to have us be admitted so I looked them each in the eye as I held them tight and promised them that we WOULD be home. It might be late. But we would be home. It was so hard to walk out and leave them there with the nurse, Kealey just doubled over in pain from her head, stomach and throat, and spiking up to 104. I hate hate hate times like this. Where I can’t be a good mommy to all of them at the same time. Of course Ben is up in Green Bay (about as far away as he can get, a good 7 hour drive away), and EVERYONE of our usual “support” people are on vacation or out of town. my parents, our babysitters, even casual acquaintances who I thought MIGHT be able or willing to sit in the house of ebola with three crying kids – everyone kaylen bday1 was gone. I thought I might lose it right there in the ER when it was looking like they were going to admit her cause her BP was through the roof, HR not responding to the oxygen, and her temp going HIGHER in spite of double doses of ibuprofen and tylenol.  When the nurse commented “oh my gosh it’s like she doesn’t even absorb the meds in her gut!!” I asked where the nearest brick wall was so I could go bang my head against it for the 93rd millionth time in Kendall’s short life because I THINK i’ve been telling them that for, oh, almost three years now. Anyways – I begged them to call milwaukee and talk to our doc who DOES know me, and knows that I can handle just about everything at home, and please please please let us wait this out at home and i promise that i will bring her right back if anything crazy grows in the cultures or she gets worse. so they opened up the floodgates on the fluids, which managed to stabilize her vitals after about 3 hours (with more fluids than she normally gets in one day, and enough to definitely bloat up an adult!), so we went home! She was obviously headed towards something not good because she got the equivalent of 5 cans of coke, and did not pee a single drop till we were JUST about ready to leave. Keep in mind that she is on IV fluids for the better part of the day also. Yikes. We got home around 1 in the morning, and THANK GOD for our amazing nurse who had stayed with the other girls because I was desperate, and then stayed to help get Kendall get hooked up to everything again and asleep in her own bed. (Thank you E – we couldn’t do it without you!) After checking on the other girls and waking kealey up to drink a little something and get more meds for her still high fever, I managed to crash around 3, only to start it all over again at 7 when Kaylen was up and ready to go ride her new bike!

we also managed to discover at some point on Tuesday that the TV was completely broken (a little indicator on the front of the TV was flashing “lamp”, which makes it easy for Captain Obvious’ like me to figure things out). So Wednesday I had some very tired, very ill-feeling, very cranky kids, who had NO CARTOONS!!!! (I know, the horror, right? Until you don’t have TV! And don’t have the energy to take them outside on nature hikes or crafting with noodles and recycled materials or any of the other things that good moms do instead of using the TV as a babysitter.) anyways – it just fit with the already crappy theme of the week, so not shocking. The two sickies managed to STAY sick all day on Wednesday, but we couldn’t get them in with their ped, and we were seeing SOME flickers of the fevers breaking or weakening at least, so we thought we could wait it out one more day.

sure enough by Thursday, they were all doing MUCH better, we still had no TV, but we somehow made it through with the help of some awesome friends with a pool who invited the big girls over so I only had to entertain Kaylen! By thursday nite, I was completely done (its my usual breaking point of the long weeks that ben is gone). So I thought I could sneak out for an hour or two of quiet time since we had nite nursing (such a rare but lovely treat!!!) As i get to the end of our neighborhood I get a call from our nurse and can hear chaos in the background that “Kaylen woke up screaming and dry-heaving and is running in the front yard……” So scrap those plans. I turned around and come home to absolute chaos – everyone is up, every light in the house is on, and Kaylen is screaming “take me to the hospital take me to the hospital” with wide crack-head eyes. Heaven help me. Given that Kaylen was conspicuously absent a fever or any kind of REAL vomit anywhere, I figured it was just her hitting HER limit, so after a LOT of threats from me to remove anything fun for the rest of the weekend, everyone managed to get themselves back in bed and fall asleep. I don’t remember crashing that nite, but again, thank God for our nurse who managed to keep it all together overnite so I could drug myself into more than 4 hours of sleep!

Friday Ben came home to the relief and joy of everyone. On his way to pick up dinner with Kaylen, she casually mentioned that she “did NOT swallow the screw by her bed”. Which is pretty much a dead giveaway that at the very least, it was a real possibility. So he brings her home and we get out the largest strongest magnet we can find, get the stethoscope, and start a white trash scientific search for one large screw in one little belly. I had seen the screw she was talking about the nite before, and I thought i might connect the dots of her crazy break from reality the nite before…..but after a thorough search of her belly from the outside, giving her basically the 5th degree of interrogation, and searching her room top to bottom – i THINK I found the screw in question. I am sure she did at one point have it in her mouth. But i am pretty sure its the only one from the floor and that its twin is not sitting in her jejunum or anything crazy. Friday nite the air conditioner started making strange noises, which led to us today realizing the air con was NOT on in the house, and that it was 75 degrees. Within an hour of us noticing this, it was 76. And upon visual inspection, Ben realized the outside unit looked like an ice sculpture because ice is just forming on the outside of the A/C.

God has provided us with an amazing source of support at our church however, and we were able to call a friend who is an HVAC tech. He was able to come over and begin testing and looking at things. which is SUCH a relief because Kendall was going on hour 6 of her nap and was already nearing that “101.5” mark with her temp, which was going to make for some VERY interesting conversations with her docs. It is so scary to watch Kendall just heat up from the inside out and not be able to cool herself off. And the next time you are in a good deep sleep, have someone come lay cold wet towels on your naked body and see how comfortable that is. But that was our only option at the time – that or let her keep cooking.

unfortunately, the news on our air con is NOT good. and that is why I will not cry. I WILL NOT let this week win the war. We were SO very blessed by the fundraising efforts of a team of 13 year old baseball players last weekend.  I know that if God can provide the money we needed for Kendall’s medical bills, he can provide the money we will need to fix the air con. and the TV. and the carpet. The bigger the problem, the huger the miracle seems when it comes, right? I mean, after all we have still SO MUCH to be thankful for. We are all home this weekend. My babies are all mostly healthy. We have a basement that is pretty cool temperature wise (cause its NOT cool decorating wise…). We have each other, we have our friends and our family, and I still have the internet. So I will at LEAST not go completely crazy.

But that’s about all I have to say about this week.

Good riddance.

Speaking of good riddance, have I ever told you how much I LOVE Billie Joe??????????? <3!!! This will cheer me up!

 

 

So anyways. Stay cool tonite. We have a heat wave coming through starting tomorrow, so we may still end up needing to either schlep half of an ER room to the mall (or some other large air=conditioned free venue), or just take our craziness to the ER! But one thing I have learned on this crazy journey of the past couple years is that just when I think it’s hopeless, Hope Shows Up. and usually in a very unexpected way. One I could never have thought of if i had tried to plan it out perfectly. I hope Hope still works in the 100+degree heat.

I hope…

 

Don’t stop believin’~

 

T-crest.

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Comments

  1. I am crying for you. Sucky mcsuck weeks suck, but ugh…that’s a topper. Please…what can we do? Next week is just too hot for you to not have ac.

  2. Hold on to that fee-le-ee-ennnnn!!! Thinking of you, praying for you, hoping for rest and reprieve and a little bit of normal.

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