Category: Hospital Stays

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”.

We waited most of Friday morning for the call that Jake’s room was ready, which was a good thing considering Thursday was so busy and I didn’t get much packing done – so I was able to play catch up. When we finally got to the hospital we found that we weren’t ready to start his chemo meds because his urine was too concentrated – so we ended up hydrating him all night with IV fluids. Nothing harmful, but it means a longer stay. Evidently the pump with TPN that he’s been on has a tendancy to do this, especially if he isn’t drinking a lot on his own – which he hasn’t been. But everything checked out by Saturday morning and off we went… round 2! And so far, a very good round 2 it has been. He’s eating, the nausea is controlled perfectly, he’s happy, and he hasn’t had any pricks! Yet. Those are coming on Wednesday morning as he will finish each chemo round with a Nulasta shot to help rebuild cells, and this time they want to add a flu shot – ugh! (The Nulasta is a painful shot and it causes bone pain so it isn’t fun.) But so far this round has been different and better! I think round 1 started off on the wrong foot for so many reasons. We were fresh out of surgery, as in few days fresh, so his little body was still recovering, and he went into chemo 1 with fever. This time, his body was as ready as it could be. We’ve had some visitors that we’ve enjoyed seeing and he also has a friend this visit that we’ve been able to spend some time with… Pearl! She is such a doll and it helps to have a playmate while he’s here. We’ve taken walks and played in the play room and it’s been really nice to have another mom to talk to. I’ve also noticed that our son has a crush. Nurse Stacey has his attention and out of all of our nurses he has really taken to her. They’ve talked dinosaurs and he likes to go on walks in the hall so he can “find” her. Mrs. Jeanne gave him the coolest, walking, roaring, eyes that light up, remote control dino and he’s

taken to the halls with it. In fact, he wanted to go find Nurses Shelly and Brandy to show them too. But Stacey is THE one! She gives him fist bumps, tells him how cute he is, and that he’s her favorite… he BEAMS! The GOOD NEWS… he’s done so well he’s actually put on a pound and if all continues, we’ll go home WITHOUT the TPN pump! Woo hoo… the port will be de-accesed. He can have a bath… a REAL, dunk him in the water, no fear of tubes getting wet, BATH! Jakey will smell so good by the time I’m done with him.