We have been home for two weeks now, and what a wonderful two weeks it has been. Cade is definitely enjoying being home. Running around and being free to do whatever and go wherever he wants to. We have taken advantage of the fresh air as much as possible playing outside, riding the gator around, and taking Henry for walks. One of the best parts has been that Cade is back in his OWN ROOM!! Haha. As I mentioned times before, whenever we would be home between rounds he would always be sleeping in my bed with me. He napped in our bed and slept in our bed, wanting nothing to do with his own bed or room. This was understandable as he became used to me constantly sharing a room with him in the hospital being no further than 3 feet away. Chris even joked the last time we were home saying “ok, well goodnight. I’m heading up to my room now for bed.” As he would sleep in the guest room the whole time we were home. We explained to him that once we were home for good, he had to learn to sleep in his own bed again because he can’t continue to sleep in our bed forever. He would just say “I know.” I talked up Cades room a lot to him trying to get him to be excited about having his own room back and his own bed. We allowed him to sleep in our bed the first few nights of being home and then told him we were going to work on sleepin and napping in his own room. What made him excited about this was that I told him that since we were home for good, we could put the comfy foam mattress topper that I used in the hospital on top of his mattress now and he can have a super comfy bed to sleep in. He was giddy with laughter at the idea. And it worked! There were definitely nights where one of us would end up in bed with him at some point in the middle of the night, but that has become less frequent. Although he still wants one of us to lay down with him “just for a few minutes” at naps and bedtime, he is sleeping great in his bed by himself once again, which is wonderful. One tiny step closer to feeling normal again. If feeling “normal” and back to how things were per say will ever really be possible.
We had an appointment at the day hospital this past Friday in anticipation for needing transfusions of blood and/or platelets by then. There was an unfortunate outbreak of the Norovirus on the in patient unit, which Chris and I both said we got out of there just in the nick of time! But I was incredibly nervous to take him back for our day hospital appointment since he was doing so good and it was just days before Christmas. I called clinic and talked to the NP we were to be seeing and she assured me that they were taking very extra precautions in the clinic and day hospital and that the inpatient unit was on lockdown so to speak. They would get him straight in to his room and out as quick as possible. So we made the trip down and I barley let him out of the room and washed both of our hands very well a million times. They drew his labs and changed his dressing and when Megan our NP came in to see him, she told us that his labs look great and he would not be needing any transfusions at all! This was a very nice surprise! His counts were holding well and his red blood cells and platelets were even holding strong. She said that they would send orders to the home health company to have the nurse come out and draw labs the day after Christmas and New Years to see how things look and then this would also allow time for him to come in to the day hospital in the event that he would need any transfusions either week, without making us drive all the way to the hospital in case he didn’t need anything done again. It’s always nice to save a trip. She also discussed with us a tentative plan for having the tubs removed. He will come back January 9th for the repeat MRI’s and then as long as those look good and there is no new evidence of disease and as long as he’s not needing a lot of transfusions, then she anticipates him being able to have his central lines removed a couple weeks later. She scheduled it saying that it could always be changed if necessary. Then the feeding tube will come out as soon as he is eating well again on his own. This ball will be in his court of course, and can be a flip of the switch as he gets further and further away from chemo and his appetite begins to return as he begins to feel better and better. She also said that we could begin to wean him off of his anti-nausea medication. Suggesting to begin after the holiday just so he wan’t miserable for Christmas. All in all, a very positive and exciting appointment.
It was a great weekend. Saturday me and the boys just had fun around the house in our PJ’s all day long. Them playing while I attempted to clean up the puddles of stuff everywhere and unpack and organize back in to our home. We had a last minute and very fun day of baking cookies with Aunt Shalina and Aubrey on Sunday while Grandpa and daddy worked in the basement. Monday, Rylan and I got to join my family for church while Chris stayed home with Cade. He even got to make s’mores with Santa after church. Cutest thing ever! Then before we knew it, it was Christmas morning. Which to no surprise in our household, began at 5:30am. We managed to get the boys to lay in bed with us until at least 6, but that was it. Then instead of the morning starting off with opening presents, it started off with Cade’s NJ tube breaking. I went to give his morning medications and as I pushed the medicine from the syringe, fluid started squirting everywhere. Oh no! I pushed a little more to see where the hole in the tube was, thinking it was small enough that I could put some tape around it to fix it. But of course not. The hole was actually a crack. The whole feeding tube was almost entirely cracked off from the big red port adaptor which is the part that connects to all the syringes and feeding tubing enabling us to give him everything. In a matter of seconds it completely cracked and broke off. All I could think of was this is not happening. And how or what could I do to jerry rig this and still use the tube, but there was not a chance. The opening left was a super stiff tubing with a pin point hole in it. All I could do was put some tape around it to seal it off and call the HOT unit at 6:30 in the morning on Christmas. All while PRAYING that they would not make us come in on Christmas to have it replaced. I explained to the nurse the situation and she had to contact the on-call oncologist and call me back. She called me back and said that as long as we feel like we can push fluids and get him to eat a little bit, then they aren’t concerned enough to make us come in that day. Thank goodness!! So we got to spend Christmas at our house together with all of our family (well almost all of our family 😢). It was a perfect day of presents, grazing on food and deserts, Prosecco and wine, and the love of our family. We definitely felt beyond blessed. And since he didn’t have a tube we figured what better time to wean him from the Kytrel then Christmas night. One less medication he had to take by mouth. He has been getting it only in the morning for the last few days and is doing great. Next step will be to stop the morning dose and get him off of it all together and see how he does. Fingers crossed!
Yesterday afternoon clinic called me back regarding the NJ tube situation and stated that he was getting the majority of his nutrition through the feeding tube and therefore would have to have it replaced. I didn’t expect anything less, however, it was a good trial run to see how he would do without the feeding for a couple nights. Chris and I were curious if he would get more of an appetite back without getting filled up by the formula feeding. By dinner time last night, he had eaten the best he had in a long time. We went in today to have the tube replaced and they were wonderful enough to plan ahead and call the CV team to have them come and change his dressing while he was asleep for the procedure. I was so happy that he got to be spared the anxiety and discomfort of it for an entire week. The tube replacement went great and they said he had begun to wake up from the sedation medication just as they had finished. Perfect timing. He woke up cranky as could be, which sedation often can do to the little ones. He was having no part of anything. They had changed the tube over in to the other nostril, which we had talked about beforehand so he wouldn’t be surprised and he was fine with it. Well now he wanted nothing to do with it, he wanted the tube out, he wanted it in the other nostril. He didn’t want a popsicle. He didn’t like popsicles or juice of any kind or water. Haha. After about 10 minutes of this, they disconnected him from everything and I sat him on my lap. He calmed down and instantly began asking for snacks. He ate an apple squeeze I had in my bag, then the whole popsicle they had brought him, followed by a bag of animal crackers and some water. We were on our way home in no time. He slept on the way home and was so cute telling Rylan how they changed his tubie and his dressing and he didn’t even feel it at all, it didn’t hurt because he was asleep from the sleepy medicine. I had also spoke to the dietician who was very happy to see how he had been doing and was on board with my idea of giving him only 2 cartons of formula instead of 3 and seeing if this helped his appetite to continue. She said we would have to try and wean him at some point, and now seems like a good time to try. Worst case scenario, if he loses a ton of weight then we would have to go back up to 3 cartons. We will see how he does from now until we go back on the 9th for his MRI. If his weight stays relatively stable, then we are doing great and we will continue to wean him from there. He has been doing great and eating and drinking very well since we got home.
Tomorrow morning the home nurse will come to repeat his labs so that they can see where he is sitting. His labs were stable from Wednesday, however his red blood cells had dropped down to 7.8, so they want to make sure if his body doesn’t bring it back up on its own, that he will be able to come in monday for a transfusion since the day hospital is closed for the holiday. His platelets had only dropped from 38 to 33 though, so that’s not to bad. I could see the reflection of the 7.8 for sure this morning as he was very whiny and tearful and he was passed out cold again at 9am for the drive up to the hospital. If his counts hold though, then we won’t have to go back up to the hospital again until the big day. January 9th.
I hope that everyone had a wonderful Christmas. I know the holidays aren’t as joyous of a time for many as people mourn the loss of someone they love or are reminded of the void that their hearts feel at this time of the year. My husband and his family included as this was the first holiday they have all spent without his grandparents. It was a different holiday this year for sure, but for me, that was overshadowed by the fact that I was just so happy to have Cade home and for the four of us to get to be in our home together for Christmas. But we all miss you Boomp and Boosh. Thank you for watching over our sweet Cade up there. To those of you who’s heart ached a little bit more this holiday season, I do hope that you were able to find some peace through it all. ❤️
Our Warrior Journey 