I’m going to have to try to write this quickly.
In about an hour Ben will be here with the girls (they spent the night back down in Fort Myers with Ben’s family). and they will take everything that isn’t necessary for me to live in the hospital for the next couple days, and they will start the long trek home in the rental car that the girls and I drove down here.
Kendall and I will be here for hopefully only a couple more days while we wait to ensure that we are on top of this infection with the right antibiotics, and then we will be flying home whenever discharge happens.
I’d be lying if i said I’m totally ok right now. I’m not. I’m scared in a new place, I’m scared for Kendall’s health, I’m frustrated at my utter lack of control over this crazy situation, I’m sad that we had to miss the last 4 days of our girl fun. We were having the most amazing time, and we had so much fun planned for our trip back home. I’m sad that my girls have had to get used to this sort of disappointment with life. I’m sad I couldn’t just take a whole week to give them fun and freedom from the chaos. I’m sad that we are once again in this cycle of infection/icu stay/home on antibiotics, break for 7-10 days, then start it all over again. I am doing my best to find positives to focus on, and I really truly am full of gratitude that I find myself surrounded by so many good friends who are willing to step up to the plate and do whatever it takes to get us all safely home again. I am happy for the memories we DID make this past week. I look at all our beach pics and I think of all the times in the car we spent just laughing at the silly things that happened….and my heart is full.
I am exhausted – physically, mentally, emotionally. I am just drained. Advocating for Kendall’s care with an entirely new and strange team has sucked the life out of me in a way I don’t think I can put into words. These are just my thoughts and feelings right now, on day 3 of this crazy stay, with a very nebulous ending. So many of you have reached out to say you want to help and I feel helpless about how to direct you. What I feel like I NEED: sushi, a day at the spa, a bloody mary with a beer chaser, a whole pan of brownies (with the powdered sugar on top), and some good strong coffee. I need to distract myself with what I think of as “real life” things – I wish I was shopping with my girls right now, heck I’d even rather be doing laundry at home, cleaning sand out of the everything, getting life back in order for school to start again on Wednesday. I’d love to have a really good meltdown cry right now.
I never did cry on Saturday. When I was so scared, and so all alone, and couldn’t ask anyone what to do or how i should act and I had no idea what was going to happen to us….I wanted to. I wanted to real bad just sit in the corner of that hotel room and just cry. I couldn’t do it. I had already BEEN doing it all all week – mobilizing four little bodies every morning, supervising showers and hair combing and teeth brushing and meals and snacks and potty breaks and entertaining activities and charger cords and ……everything. It’s not that I’m not used to being a “single mom”. Even before Ben and I had separated, his job took him away for weeks on end and i’ve always prided myself on being able to hold it all together and do whatever needs to be done. My 4 baby girls are my life force, they are the reason for everything I do in my life. I love them fiercely and of course I’m going to do all of the things for them that they need because it is just what you do when you’re a mom.
But that morning…as I knew i had a very sick kiddo on my hands and literally NO idea where or how to even get to a hospital, and then do I schlep all of them with me? Do i leave them in the hotel with just Kealey to watch them hoping maybe i’d be in and out of an ER with Kendall in a couple hours? We were supposed to check out in a few hours, what do I do with all our stuff? I called Milwaukee, they said call 911 immediately and call us back as soon as you know where they are taking you.
And then there they were. 6 gruff firemen, woken from their sleep to come get my sick, fevering, possibly seizing child and take her to a hospital. Me, throwing a half torn medical travel chart at them and trying to describe what the issue was with having a child with a central line and vomiting and a 105.9 fever. Them not understanding that just because her BP was ok right then, it didnt mean it would be ok in twenty minutes or an hour or five hours from now. And I am panicked, man am I panicked. She hasn’t been that high in forever, and it was from a Doc McStuffins thermometer, not my regular handy dandy Vicks one I always use. The way she was not able to control her movements and her eyes darting all over the place and her talking in complete nonsense garbled jibberish….Yeah. Panic.
But they brought in a stretcher, and I picked up my little oven hot baby and I strapped her onto that gurney and I caught more puke in my hand and i told her it was all gonna be ok, I would be right behind her and that she had to go with the firemen now. And I looked at them, imploring them with my eyes to please just get her there safe and to make it be ok….They were shocked I wasn’t riding with them and I explained I had three other little girls in the other room and I needed to pack up this room so we could discharge and I….I just trailed off. They didn’t wait for more of an explanation, One threw an address at me, I gave him my cell phone number, and then they disappeared.
The door slammed shut and I stood there….in shock I think. My mouth still open but no words coming out. Not able to move. And then I did move, and I didn’t know what to do first…..I didn’t know. There was a corner by the door, the only corner of that entire room not taken up by our stuff…..and i was so tempted to sink into it, bury my face in my hands, and just cry. I wanted to really badly. But after a few more circles, I went into the other room and tried to gently wake up the other three, explain that an ambulance had just taken Kendall and we had to get up really quick and get dressed and pack up so we could go find which hospital she was at. They were more than a little shell shocked….But I kept them moving. And God bless Kealey – that kid can move faster than anyone i know when she needs to. She had that room almost entirely packed up by the time I threw a few things into a bag for the hospital.
So we came down, got our rental car, I explained to the front desk that it was my daughter they had just taken in the ambulance and that I was very sorry we werent going to be checked out by 11 but that if they needed our room (it’s a saturday on a busy beach, I knew they needed that room!), they could just pull our stuff out and put it in bell check. The kind man reassured me it would all be ok and the gentleness in his voice threatened to overwhelm me and make the tears fall. But still I held it together.
I was shaking trying to enter the address the fireman had given me. 45 minutes the GPS told me. I was 45 minutes away from my baby girl and I had no idea how to even get a hold of anyone who could tell me she was ok. I just had to pray and hope she was ok. I had to keep it together for the big girls. They all watch me in these times. If i’m sad, they will be sad. If i’m strong, they will be strong. So I dig deep and I find my strength and I keep them talking so they don’t panic like I am panicking deep on the inside.
Finally we get to the place. There is easy parking. It is still dark outside. We go in and I explain they brought my daughter in by ambulance. They tell me only i am allowed to go back because siblings are not allowed. So I once again have to leave then in a strange place alone. I look at them and they tell me they will be ok, go be with Kendall. These girls, they are amazing. I walk down the long hallway to Kendall’s room. Nurses are in there trying to push meds. She is surrounded by ice packs and there is blood all over her sheets. I know the firemen tried to start an IV and were unsuccessful There are bandaids and bruises up and down her arms. She is burning up. You feel the heat coming off her body as you enter her room. She is bright red and so puffy. They are on their third IV bolus in an attempt to keep her blood pressures up. They are hardly successful, but enough to stave off bigger interventions.
I spend the next couple hours making treks from Kendall’s room back out to the waiting room to check on the big girls. My big girls. So brave, so good. Making themselves as comfortable as they can on the vinyl chairs of the ER waiting room. Karissa asks me at one point – “mommy, why is kendall here? what happened?” and i realized they really were completely in shock from the events of the morning. So I explained that she was very sick, she might be really REALLY sick, and that I was doing my best to figure out how to get them to a place that was better than the waiting room and I would figure this all out they just needed to trust me. They all looked at me with those big eyes and I wanted so bad to just tell them I’d figure it all out right then but what could I do? We looked on my phone for breakfast. There was nothing we could see from where we were. The closest open place was a starbucks in a hotel a half mile away. Kealey said she could go get stuff and be back quickly. I sent Karissa with her and took Kaylen back to the room with me. She’s never seen her sister still being “worked on” and she sat quietly in the corner just watching everyone moving in an out of the room. I was on and off the phone with Milwaukee…..oh our precious Milwaukee team. The NP I was on the phone with all morning called me later that afternoon just to see how I was doing. She said I know it was a rough morning, how are YOU doing? And I choking on my tears said what if she’s sick because of me? because i let her swim, because I let her get too hot, too sunburnt, too….. And She said No no no – you let her LIVE. No one could ask for anything more than that. You let her be a kid and that makes you the best mom to her ever. I just needed to hear that.
Kealey and Karissa survived their inner city breakfast run and we all ate muffins in the waiting room. They were admitting Kendall to the ICU. We got her up there, and she was just conked by this point. It was pretty touch and go all afternoon with her vitals, but eventually we got more on top of them. It was hours of me explaining her medical history to new doctors, over and over and over again. I could hardly think or see straight, let alone repeat complex medical history. My other babies spread out on the floor of the ICU room. They found colored pencils and a Jenga game in the game room and they played together, they entertained themselves while I talked to doctors. At some point that afternoon their dad made it to the hospital and after checking on a very sleepy kendall, he took them back to the hotel and was able to make arrangements with them for our stuff/another night. I was glad for the big girls. They deserved one more night of fun after their chaotic morning. I was able to check into the Ronald McDonald House. I took a few minutes to just lay on the bed before coming back here to spend the night at Kendall’s bedside.
And at some point that night I crashed on the box of bliss. It’s just one long bench here. With a deep divot in the middle. which is actually more horrible for your back than separate boxes. I never knew.
Since then she’s been improving. We got on top of this infection with massive doses of antibiotics and steroids. Today we upped her antibiotic dosage a little more even
We might be able to come home on Wednesday, but more likely Thursday or Friday. Ben was able to “reserve” tickets for us to fly home Not that flying with this kiddo is ideal, but it’s definitely better to get her home in the quickest way possible vs a few days in the car.
I still can’t believe i’m sitting here in a hospital, thousands of miles away from home. My babies in a car somewhere between me and home. No familiar faces to come pop in and say hi. No familiar hallways to roam when the walls feel lke they are closing in on me. I walk outside and lizards scatter in front of me and I have to stop myself from screaming. The air condiitioning in here is cold. They have an easy access cafeteria but I am tired of cold cuts and industrial mashed potatoes and burnt coffee. I long for something familiar. Something comforting. Even a nice blanket. It is weird the things you miss when you don’t have them.
I forgot clothes for Kendall. I literally have a pullup to take her home in, if I don’t steal an open back hospital gown. Or shoes. I have no shoes for this kid. The things I don’t think of….
There is no target around here. There are (oddly), womens clothes in the gift shop, but nothing for kids.
I am still scared. I am scared that even though she looks good, we will get on a plane and she will crash on me again. I am scared that I cannot keep her from getting these infections. I am just…i am all alone and I am scared. I know God is with me. I know that. Please don’t repeat it to me. I know He is here and that is evident from the fact that Kendall’s care is so well taken care of but unless you have sat in a strange place with a very sick child all by yourself and just wanted someone to hug you and tell you it was all gonna be ok….don’t tell me know what it’s like.
I am scared and I am sad and I am doing my best to keep it all together.
I am beyond grateful for this place. I am beyond grateful for everyone who has volunteered to find help. I really truly am. I wouldn’t be keeping my head above water if it weren’t for some of you.
But I miss home. I miss my babies. I miss my bed. I’m just having a rough day, forgive my whininess. You know it will be better tomorrow. it always is.
I meant to type a more factual update about how Kendall is doing – but just know that she is doing ok. We are waiting for negative cultures and we hope we are getting them. Her labs look crappy but that’s to be expected. I bet they look better on Wednesday. I guess this is just what I needed to get out today.
Thank you for praying, thank you for thinking of us. Thank you for just being here. I appreciate you all more than I can say.
So many of you want to help – and honestly, there isn’t much that can be done physically. Donating to Kendalls medical fund is always appreciated – especially since her medicaid will likely not be picking up any of the slack of this stay and our copay will be astronomical, i cannot even think of that right now – but you know how much i hate asking for help like that. I’ll put her link at the end of this post for those of you who feel so led, but please please please don’t think i’m asking for it. It’s just, it is always such a help to know that things like this are just a little less burdensome, and it means the absolute world to me to have help from any of you in any way.
So I guess that’s about all I have to say about that.
I hope I can get a few pics of our fun vacation onto here soon so you can see that there WERE some fun times over the past week, some of the most fun I can remember having with my babies (or just at all!) in a while. It was a good trip. I will cherish every bit of it, including the less than ideal ending. You have to, right? The bad is what makes the good so good. You appreciate it more. You recognize it easier.
anyways – now i’m just rambling. I gotta go try to walk to the RMH without screaming my head off at the little lizards.
Peace out party people. I will be back for more tomorrow i’m sure. I am kind of finding myself back in a writing mood. Or at least a vlog.
Terra.
paypal.me/hopeforkendall