Unexpected Admission, Again (sigh)
Sadly, the ER was calling our name last night, and today we sit in TCH, AGAIN, with no discharge in sight. Yesterday we were in Clinic all day with platelet and blood transfusions so we could “juice up” for the weekend. Jake looked great, in fact everyone was surprised that we were having to transfuse. His color was good, he had energy, he was smiling and eating, but his platelets were 5, his hemoglobin was 7.1 and his ANC was a BIG fat ZERO. So we transfused and at the end of the day, we happily left to prep for a weekend of Thanksgiving, Meghan’s birthday and Ryan’s birthday, plus Two Mom is here to visit… a full weekend of at-home stuff, including putting up the Christmas tree (which Jake has been so excited about). Then he started getting warm, and a bit warmer, and a bit warmer, and HOT. CRAP! It’s pure anxiety as you watch the numbers, knowing there is nothing that you can do. Jake’s body can’t fight fever, he has absolutely NO white blood cells and there is no way that we can get it down on our own. Of course we tried anyway with lots of fluids, undressing him, making him flap his arms so he could air out his underarms – just in case – you ever know… and he thought this was funny. It’s crazy, for a kid whose fever was going up, he was cooperative… but he knows he doesn’t want to be here unless he has too and he was doing what ever we asked with no questions, no complaints. We must have taken his temp 100 times and with 4 different thermometers… wishing for just one of them to say something different. Eventually we looked at each other knowing there was no option, fever means hospital. I have to admit, I’m so disappointed… and sad… and pulling a big ‘ole “woe is me”. We were so looking forward to this weekend and Jake has done SO WELL this round. This just doesn’t make sense, he looks amazing compared to what neutrapenic fever looked like last time – and this makes 5 hospital stays in 7 weeks. We have so much to be thankful for… I know this. But spending Thanksgiving and the weekend here, away from everyone, away from our home, and our dinner, and our dinner table has me feeling weepy. As they rolled Jake from the ER to his room in the early hours, he didn’t even open an eye. He was wiped out, so when he woke up this morning and realized we were still here, there were tears, big crocodile tears and quiet sobs to go home. My heart knows what he’s feeling. The craziest part of this stay is that we aren’t even on our floor. Our home away from home is the 9th Floor – Oncology. Cancer patients are to be housed on the 9th Floor, no matter, but it’s sick season and the floor and hospital are FULL. Our 9th Floor home with familiar nurses and playful hallway with special friends is full. So we sit on the 14th Floor of West
Tower – the Respiratory Floor… home of RSV and pneumonia and other respiratory illnesses. This has us completely isolated, signs on the doors, docs and nurses entering in full cover and masks. We truly appreciate their caution and care for Jake’s situation and can’t help but think that they too would prefer to be home. It’s especially hard because he actually feels pretty good and could be riding the trikes rather than being cooped up if on the 9th Floor. The worst part is that the playroom is right across from our door… we can see it through the glass window in our door, we can hear the kids. Our energetic toddler wants out! He wants to play too. It’s scary, really. This is NOT the floor for a neutrapenic cancer patient with no immune system. Something like pneumonia can bring a multitude of horrible things for him and I’m afraid to even go to the family area where the ice machines and coffee are. There are kids and family members hanging out, some of the kids are coughing and they are in gowns so you know they are here for a reason – what if I bring something back into the room? They too are nervous and are trying to get us moved. Several different hospital reps have come in today to say they are working on getting him to the 9th. I am appreciative of their effort and constant communication. Right now, we have markers that we have to check off in order for us to go home… 1. Eating Drinking, Peeing – check. 2. Fever free for 48 hours 3. Waiting on blood cultures to come back. 4. ANC (white cells) to recover. (This should start rising anytime since we are 10 
days out from lst chemo, but because he may be fighting something, it may be delayed.) This stinks! Look how good he looks?!! See… woe is me, woe is us! What I should be doing is praying for these families who are here too and be thankful that we have a room and aren’t down in the very crowded ER. I can’t seem to do that right now, I just want to go home, I just want to take my baby home, I want to spend time with my mom, eat Henry’s delicious Thanksgiving dinner, and decorate our Christmas tree. So, I call on our sweet friends and family… you, our loving prayer warriors to pray for all these families who also would love to be home and are missing their families, their traditions, their visions of what should be. Tomorrow will be better and we’ll be thankful, for deep down I do know there is so, so much to be thankful for. But today I’m pulling a Scarlett for “tomorrow is another day”.Trackback from your site.
Comments (16)
Lisa
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Mardon,
Our thoughts are with you today and we too will be praying that you get to go home soon and have the rest of the weekend together!!
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Angie w
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You have every right to feel how you do and it is ok to be upset and angry, as I feel also today! I will pray for both your family and mine that we are not angered in these hard times but find peace in Jesus.
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Lisa DeLue
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Words can’t express how saddened we are to hear you’re having to spend Thanksgiving at TCH. We’ll be praying for good numbers and no fever, a move to your floor, and a speedy exit. We carry you in our hearts always.
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Jenn Vaughan
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I’m really sorry y’all have to be at TCH this holiday. We are praying for you and hoping for a quick transfer and discharge. Much love!
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Connie Arrington
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Mardon,
Your attitude is amazing. You see the glory of God in this whole process. In and of that, a pity party or a Scarlet O day is so appropriate. I do not think I would be near as positive. Hang in there and know that I am praying for your whole family during this time of Thanksgiving, because we all have so much to be thankful for but prayers for supplication are necessary at anytime and place we can turn to the Lord.
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Diane Pargin
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I am so, so sorry you all are having to go through this, this makes me very sad 🙁 Although having to come back to TCH (and right before the Thanksgiving weekend, no doubt!) is completely lousy!!!!…you are a really good mom, and you are doing exactly what you need to do right now, for Jake. Thank you so much for the update, I think about y’all so often!!! You do sound like you have a medical degree, btw…I was thinking the same thing as I was reading.
Praying that they find the perfect spot on the 9th floor like, today!…and that you two are back home with your sweet family before you know it. Much love to all of you, Mardon….I ❤ You!!!
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Elisa Eddleman Oliver
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Oh Mardon! I would be feeling the same way too and I love how you are trying so hard to turn that frown upside down! Jake really looks good… Smiling in the pics… He has a great mama…that is why!! I will pray for the room situation now and for you both to be able to spend time with your whole family this thanksgiving weekend! Love ya!
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Sam Molina Dellaughter
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I am praying, and my family will keep praying that you and Jake get the family time and Thanksgiving you deserve!! We love you and send you big hugs!! ♥♥♥
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Nonnie
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Although I can’t know how you feel, I wish I could help. I will continue to pray for you and your family. You have my heart and prayers.
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Kelly Stevens
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Sweet Mardon & Baby Jake, my heart breaks for you. I pray that next year’s Thanksgiving will be that much sweeter when you can look back on these moments and bask in the freedom from fear of illness. This is my family’s prayer for you!
“Let them thank the Lord for his steadfast love, for his wonderous works to the children of men!” Psalm 107:8
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Paula Mosemann
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Awwwww Mardon. I’m really sorry. I would be mad at the world right now, and i totally get how frustrated you are. I remember when I worked there on holidays, and it was tough to think about with the family at home but when you’re actually there, it’s just another day! Try and think of it that way. Just one day closer to NED. We love you so much.
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Amy McCann
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I’m praying for you, love. I know there are no words I can say that can make it better, so all I will say us that I love you.
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Ginna Goodenow
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You are loved.
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Mary Ann Day
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I am glad you feel free to share so honestly and all of us would wonder if you weren’t feeling really crappy about this. Praying for you and for tomorrow to get better (hoping for that transfer to the 9th floor!) Love you much!
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Fran Geoca
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Mardon, I am so sorry. 🙁 My heart is aching for you and I know I would want to be at home too. Try to think a few days ahead, when you and Jake will get to go home and enjoy yummy leftovers. Got all of you in my prayers!!!!!!
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Carrie
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I am so sorry you guys are back in tch. I was so praying for an uneventful holiday for you all. He does look great – that is the Jake expression I miss. Thinking and praying for you all. I love you
PS. You sound like you have a medical degree and it probably feels like you have gotten one in the last month.
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