STILL WAITING

We are still in the hospital and still waiting… waiting on cultures to grow (or not grow), waiting on Caleb’s counts to come back up, and overall of course waiting to go home! We are starting to get more anxious to see if this hospital stay will delay our scans, and therefore delay our return to Florida.

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The last couple days I’d say Caleb has been running at about 50%. He will get some energy but then tire out after a little while and want to rest. This has a lot to do with the meds he is getting. On top of 3 different antibiotics (Cefepime, Vancomycin, and Septra) he has also had to get his pre-meds for his transfusions. He had to have blood yesterday, and both platelets and blood today. Before each transfusion he gets Benadryl, Zantac, and Tylenol. Those are his pre-meds to prevent any allergic reactions. So between all of that he gets pretty sleepy.

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But we have had a little bit of fun in between all the meds. Yesterday there was a knock at our hospital door. Usually a knock is a nurse or doctor, or sometimes the Nutrition department or our social worker checking in. But this time it was someone from Music Therapy. She had a guitar with her and asked Caleb if he’d like to hear a song. Caleb was pretty cranky at the time. We had just forced him to take his morning meds and he wasn’t happy about it. BUT, Caleb loves music, and the second she asked him that question he smiled and nodded his head yes. She came in with her guitar and also a drum, a shaker, and a tambourine for Caleb to play. She let him take the lead by banging the drum and she played along at his tempo. It was adorable. He LOVED it! When it was time for her to leave she asked if she could bring him a toy, and returned with an awesome Lego set. Caleb was so happy! It turned his whole day around. It’s amazing to think that there aren’t just wonderful doctors and nurses here, but also other people willing to share their time and talent and help in other ways. It was a very cool experience for Caleb, and so fun for us to watch.

Yesterday afternoon I picked up Tyler from summer camp and we brought Caleb a Happy Meal from McDonalds. I didn’t really want Tyler getting too close to Caleb because he had been at school and they had a field trip to the Memphis Zoo. So instead of Tyler going to Caleb’s room, Caleb came downstairs and out to our van to get his dinner.

Today was Saturday, and Tyler came to hang out with Caleb for a bit before running errands with daddy. I can tell Caleb misses Tyler because he immediately said “do you want to lay in my bed and watch my iPad with me?” It was so sweet. Tyler also came at just the right time because the Happy Cart (the cart with all the toys) came around and they each got to pick a toy. They picked LEGOs of course, and immediately started building their sets. This kept them busy for quite a while. It was so cute to see them playing and hanging out together.

Tyler and James left to run some errands and Caleb was exhausted, so he took a little nap.

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Tyler and James came back around dinner time to bring Caleb a couple surprises they picked up at the store, and to bring him dinner again.

That was pretty much our day. It’s a lot of sitting around. The doctors really want to see Caleb’s counts coming up before they discharge us. Also, the spot on his ankle that we originally came in for is still very sore, red, and puffy. So it’s either one of two things… they haven’t honed in on the right antibiotic yet (apparently it can sometimes be hard to find the right one because there are so many, but that’s why they are watching to see what grows on the cultures), or he hasn’t had enough of the antibiotics yet. They did a test and said his levels were low, so for some reason the doses they were giving him weren’t enough, even though they are huge syringes that look like this:

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Don’t worry, all of that gets pushed through his port, he doesn’t have to drink it! But anyways… since his levels were low they put him on a continuous pump of Vancomycin to see if that increases the levels and kicks this infection. Our nurse tonight drew a circle around the infected spot. We have done this once before and I don’t know why I didn’t think of it earlier. But the circle helps you tell if the spot is getting worse or better. If it spreads outside the circle it has gotten worse, and if it shrinks inside then we know it’s getting better. I am definitely concerned about how red it still looks after days of antibiotics, but I feel ok because as they say, he looks good clinically. This means his vitals are good, his color looks good, he’s eating and drinking, etc. There are a lot of signs that would point to other major problems, but right now everything is stable.

So, we will wait and see what doctors say during their rounds tomorrow morning. I am not sure how much longer they are going to want to watch the cultures. I know they are hoping to see an increase in his counts, or at least for them to hold steady so no more transfusions are needed tomorrow. I of course can’t stop thinking about getting home to Florida, but I am trying to calm my mind because all that matters right now is solving this one problem, so we can have our scans next week. That is the most important next step for Caleb. Many people have asked if we have a date that we are coming home, and the truth is we probably wont know until about a day or 2 before we are coming home. Once Caleb has his scans, and they show that everything is clear (praying they will), then we’ll get the all clear to go home and make a plan to go into crazy mode and pack our van, pack our suitcases, make piles of things to donate, etc. So, this is the calm before the storm. I am trying to enjoy it, trying to envision the future, and trying to appreciate every moment that has gotten us here, to the END of cycle 5!

3 thoughts on “STILL WAITING

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  1. Sweetest picture ever of the two boys playing Legos in the bed. Patience is a virtue that I never quite learned; you all are showing amazing patience in dealing with things beyond your control. I’m praying for your strength to get you through this home stretch. Home.

  2. 🙏🙏🙏🙏❤️❤️❤️❤️🙋

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