His nG feeds have been cut back to 12 hours, instead of the 16 that he was on. He needs to eat about 400 calories a day in order to keep this schedule. I'm not sure if he will be able to do this every day, but it is looking good so far. He is still on a 10 hour IV hydration. We had discussed staying on it for the next week. After tonights diaper, we need to stay on it for a while longer. In my opinion.
Counts. This is where I get hesitant and start to wonder. His counts stalled for a while. This last week they have taken a dip. We are at day +57. I don't know what they SHOULD be, 'cause "should be" doesn't apply in this realm. It could be normal, it could not be. I did not press the issue with the team. Not yet. If his ANC drops below 1000, then I will get worried. They have made it to 2200. Thursday's ANC was 1340. His hematocrit dropped and he was transfused on Sunday. His platelets are dropping, too. Add to that the blood in his urine and I don't know, really, what to think. Nothing is conclusive. When we were still in-patient Dr Andrews talked about doing another Chimerism study around day 60. When I mentioned it to the team at SCCA, they stated that a chimerism study at day 60 is not done. Unless there is a reason to question it. (The Chimerism study looks at peripheral blood cells {from a blood draw} and determines how many cells are donor and how many are not.) Of course, while at the appointment I did not question any of this. I have a habit of needing time to chew on stuff before I ask questions and get pro-active. It's not that I'm not quick on my feet. I just need to think about what was said, mull over results, make sure I understand what is going on and then fill in the blanks. Trust me, Monday I will have a whole lot of questions. Especially if his counts continue to drop. He started the different anti-biotic on Thursday. He discontinued Bactrim and started Dapsone. Apparently Bactim can suppress counts. Yet, we discontinued it on Monday and his counts continued to dip on Thursday. Was this enough time for his counts to recover from a Bactim induced dip? I dont' know. It's not a question I was prepared to ask on Thursday. We have had so much going on that my mind has not been as focused on his counts as I was when we were inpatient. (Tell me, how to you represent these words? In-patient? Inpatient? Out-patient? Outpatient? Either way it looks weird.)
Here's how the last week has gone down:
Monday! First day out-patient. Clinic at 8:45. Really rough day for Gregory.
Tuesday: Tried to get organized at the apartment. Ugh! Mainly laid around all day. Man I was exhausted.
Wednesday: Prepared for Mom's arrival, later that evening. Managed to get some of the apartment organized.
Thursday: MY CAR QUIT WORKING! (See below) Clinic at 8:30. Gregory had a great day. Thankfully mom was here and we also did a grocery trip. Gregory got to pick out some goodies. Picked up prescripton from Seattle Children's pharmacy.
Friday: Dad arrived in the AM, he worked on and fixed my car. My brother Travis arrived from London.
Along with all this, we have been finding our groove with his meds, trying to ease him into eating, dealing with nG feeds, diaper changes, IV fluids and just learning how to live out-patient. It's alot.
Thursday, me, Gregory and mom went to leave for clinic. I went to unlock the doors with the remote and...... nothing. I thought that maybe the alarm was just acting wonky. I do not know how to turn it off, once it is activated, without the remote. Dad does. I figured the alarm was just acting weird, dad would turn it off and we would be OK. Thankfully mom was here and had her car, so we trucked off to Clinic and errands with her car. Dad came down today only to find that it was not simply the alarm. There is a wiring problem and the car likes to eat batteries. Dad put a new one in and we are good to go. The last battery was replace three years ago. At least I feel comfortable knowing that this one should last at least until we get home. Car troubles do not get me down as much as they once did. Honestly. There is always a solution and there are always other options of getting where you need to go. Going through this with Gregory has really taught me not to sweat the small stuff. While car issued used to be catagorized as "big stuff", it really is small potatoes. Yeah, it can delay stuff, but it's OK. I need to remember these words, when the car has issues and we are two years past successful transplant.
Anyhow. The gist is that we are busy, trying to settle in, have lots of company and his counts are dropping. I don't know what to think about the counts thing and only time will be the answer. It's completly out of my hands and no amount of worry is going to change it. (OK. Gregory is "cutting the cheese" like CRAZY! Holy cow the kid stinks!) The best part is that Gregory's spirits have been great. While his energy level varies from moment to moment, it's still really good. Mom picked up a helmet for him and yesterday we spent a few minutes with him riding his tricycle on the basketball course, in the "park" next door. He loved it. The weather has also been considerably cooler. Yay!
Once again, another really disjointed entry. Which in a way is very telling. This "planner" is taking a crash course in moment-to-moment. Thankfully the feeling of moment-to-moment is finding a home within my head and all is well. Had I learned to live a little moment-to-moment earlier, I would have had more moments that were pleasant to remember. It's time to quit slamming the keys (which is just how I type, not related to my mood) and get Gregory to some shut-eye. He took quite a nap today and is still up. 'til later, gotta jet.
Monday! First day out-patient. Clinic at 8:45. Really rough day for Gregory.
Tuesday: Tried to get organized at the apartment. Ugh! Mainly laid around all day. Man I was exhausted.
Wednesday: Prepared for Mom's arrival, later that evening. Managed to get some of the apartment organized.
Thursday: MY CAR QUIT WORKING! (See below) Clinic at 8:30. Gregory had a great day. Thankfully mom was here and we also did a grocery trip. Gregory got to pick out some goodies. Picked up prescripton from Seattle Children's pharmacy.
Friday: Dad arrived in the AM, he worked on and fixed my car. My brother Travis arrived from London.
Along with all this, we have been finding our groove with his meds, trying to ease him into eating, dealing with nG feeds, diaper changes, IV fluids and just learning how to live out-patient. It's alot.
Thursday, me, Gregory and mom went to leave for clinic. I went to unlock the doors with the remote and...... nothing. I thought that maybe the alarm was just acting wonky. I do not know how to turn it off, once it is activated, without the remote. Dad does. I figured the alarm was just acting weird, dad would turn it off and we would be OK. Thankfully mom was here and had her car, so we trucked off to Clinic and errands with her car. Dad came down today only to find that it was not simply the alarm. There is a wiring problem and the car likes to eat batteries. Dad put a new one in and we are good to go. The last battery was replace three years ago. At least I feel comfortable knowing that this one should last at least until we get home. Car troubles do not get me down as much as they once did. Honestly. There is always a solution and there are always other options of getting where you need to go. Going through this with Gregory has really taught me not to sweat the small stuff. While car issued used to be catagorized as "big stuff", it really is small potatoes. Yeah, it can delay stuff, but it's OK. I need to remember these words, when the car has issues and we are two years past successful transplant.
Anyhow. The gist is that we are busy, trying to settle in, have lots of company and his counts are dropping. I don't know what to think about the counts thing and only time will be the answer. It's completly out of my hands and no amount of worry is going to change it. (OK. Gregory is "cutting the cheese" like CRAZY! Holy cow the kid stinks!) The best part is that Gregory's spirits have been great. While his energy level varies from moment to moment, it's still really good. Mom picked up a helmet for him and yesterday we spent a few minutes with him riding his tricycle on the basketball course, in the "park" next door. He loved it. The weather has also been considerably cooler. Yay!
Once again, another really disjointed entry. Which in a way is very telling. This "planner" is taking a crash course in moment-to-moment. Thankfully the feeling of moment-to-moment is finding a home within my head and all is well. Had I learned to live a little moment-to-moment earlier, I would have had more moments that were pleasant to remember. It's time to quit slamming the keys (which is just how I type, not related to my mood) and get Gregory to some shut-eye. He took quite a nap today and is still up. 'til later, gotta jet.
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