Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Wednesday, March 28. 2007 at
Day 15 post stem cell infusion
Counts from 04:00
Asher has really kicked up the whining a notch and basically, whenever a nurse is anywhere near him, he whines about it. Last night, everytime a nurse was in here to do something (lines, diaper, blood pressure) Asher would whine 'daddy, daddy, hold my hand, daddy daddy'. Not sure what triggered the start of that behavior again.
Asher took his oral Acyclovir last night in a syringe mixed with Cherry. That wasn't how we wanted to do it, but Asher squirted it in and then drank a little water to wash it down. This morning, he did another dose with the powder mixed in about 5 mL of milk and that wasn't a problem. So, Acyclovir and milk is probably a good combo.
Also, last night, Asher ate 5 mini-ravioli and 1 meatball from a Chef-Boy-R-Dee can that I brought from home. He kept it down without gagging. I saved the rest of the can, so I'll try and give him some more of it today, maybe he'll eat later after his TPN stops at 9am.
The night nurse brought some oral zofran to have on-hand if there was any nausea, but we didn't use it last night and it got disposed of this morning.
Asher's had 3 messy diapers during the night and peed quite a bit. When he's awake, he's still be consistently using the urinal as Steph has mentioned a couple of times.
Today, there really shouldn't be any surprises. I noticed he has some petekei under his left eye, which showed up yesterday a.m., which is usually an indication of low platelets, so we'll see when counts come back. He'll be on Normal Saline for fluids today and again, they asked me to see if he could drink. For the most part, it's all the same stuff that Steph has talked about for the last few days.
Right away when Asher woke up today (around 9am) he looked at me and asked to play a game on the TV - spongebob. So, off to play spongebob battle for bikini bottom PS2 game.
-- update 3:30 --
Asher is choosing not to participate with anyone today.
PT, speech, Psychologist all were basically ignored by Asher, and he even took to hiding under his superman blanket during one visit. Even the NP, who was in earlier this morning couldn't get Asher to play frogs & lizards with her. When PT was in here, I even tried to "leave" for a few minutes to see if he was being 'shy' for my benefit, but it didn't matter. As always, PT said he looks really good and she has no concerns for him as we were able to get him out of bed at least standing and walking.
A new speech lady came in that he had never seen before and she tried really hard to engage him, or make him laugh, or at least talk. I did warn her that he's used to her collegue and that it takes him days to warm up to someone, and in a few minutes she decided that I was right and left.
The psychologist who administered all of our pre-transplant tests "just stopped by" and tried to just talk to Asher for a few minutes, but he buried his head in the pillow. She tried just about all of her bag of tricks to get him to engage, but she saw it was not worth it after a while. After she left, I could see her go over to his chart and write some notes. I suspect she was writing some follow-up notes on his current mental state. When I gave her to 20 second version of how people were using the 'H' word so much, she seemed to understand, and seemed to empathize with the fact that he must be getting tired of being stuck in this small room.
at 3:30, Asher just asked for his favorite child life lady to come in to see him. He has said he doesn't want the other ladies to come, just his favorite one. He's going to trade some of his tickets in for a toy. When she walked in, he was being pretty shy, but after a few minutes of playing, now has started to play with her. He seems to be having a good time with his Elmo toy (from a nurse) and his two lizards.
Asher looks really tired and will probably fall asleep soon.
-- Update 17:00 --
Not remembering if it's been mentioned in the blog before, but I just noticed that Asher really looks like he has a sun tan. Almost his whole head / arms / legs look brown. His face isn't as dark, but you really can tell when he turns his head and you look at him from the back when the shade is up. He really looks like he has a tan. Will be interesting if it turns out to be permanent, cuz I think I remember them saying it's permanent on some kids and not on others.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Tuesday, March 27. 2007 at
Day 14 post stem cell infusion
RBC Morphology - anisocytosis (variation in size of RBC's) slight & polychromasia slight
Chest xray is clean and "quick" nose swab tests are negative (as I figured they would be....he always just gets this runny nose after aggressive chemo).
The social worker came in to talk to me this morning. We had a good talk about this and that, personal stuff to me. I know I have mentioned this in the blog before, but she said she is even going to look into counseling and my insurance for me to get me started since I said I think I will need that now that this is "over." It will never be over for me. She said something really interesting to me that I have never heard before....she said she doesn't like the words "counseling" and "therapy" because if you find the right person it is more just about "growing" in your life. Very interesting point of view. I like this social worker. Hopefully I can find someone like her on the "outside."
I think I have finally figured out where Asher's irritation is coming from....I watched him really closely this morning....first it is all the new nurses that Asher has never met....second, it is that the nurse comes in and first thing he says today is, "Asher looks great. As soon as he eats he can go home." DOWNHILL FROM THERE!! And, honestly, if one more person says the H--O--M--E word in front of Asher I'm going to lose it more than I did today. I said, "No more saying HOME in front of Asher; put up a sign on the door so every nurse and doctor knows." They haven't even switched him from IV meds to oral meds and that has to be done prior to Asher going home. Asher CAN go home on nutrition and IV fluids, and if he just can't eat yet, he can't eat. And, truly, the doctors and NP need to get on the same page and write things down they tell me because yesterday the NP told me NO fluids during the day so Asher will be more thirsty and this morning the doctor said NO WAY she would consider that, he needs fluids. Whatever, just get on the same page. I don't want to be told different things from day to day.
It really has become a point of frustration for me....the new people to Asher, the mixed messages, them telling Asher (well, me, but in front of Asher) that it is his fault he can't go home right now (that's what he hears when they say he has to eat in order to go home)....and he does try. They forgot his breakfast I guess because I actually called at 9am and it is now noon and the food just came (after it got reordered)....he has a piece of french toast in his mouth that he still hasn't spit out or swallowed. Not all kids are the same and maybe some eat, but Asher takes a bit longer I guess, so the doctors just need to deal with it. Whatever doctor is on call the week we are dealing with it or talking about going home, that's the point....
After I got frustrated, to the point of tears, with the doc (no NP today) and nurse in the room, Asher's mood completely changed. He was almost smiling, he liked his frog and lizard again, and he even started talking to the doctor (and 10 minutes earlier he had slapped her hand while she was going for his diaper and then she yelled at him for hitting her). I even told her the reason I don't talk to the doctors is because they don't stop and listen....I was trying to talk to this doctor this morning and she just kept interrupting me saying, "This is the first time you are telling us this" (the part about not to tell Asher about "home") and I said, "Yes, it is, so please let me finish telling you what I am trying to say...." Asher started to say, "Yeah, my whole family is at home. I want to tell Daddy to take lizard and frog home cuz Lexa would probably like them. And Aubree too."
It is hard to sit in the hospital when he's technically not sick anymore or receiving chemo or anything like that. For some reason I am having an especially difficult time this go round and I think it is because after 10 months we are dealing with doctors and nurses (transplant team) that truly don't know Asher and aren't really hearing what we're trying to tell them about Asher. It is a process, it is something we have to do, but it isn't easy, especially with the emotional mommy stuff I have. Most of the time I just sit and observe and keep my mouth shut, and get emotional. Usually I don't know why Asher is acting the way he is (mean to PT, slapping a doctor, not wanting a prize/new toy....) but today I figured it out.
I brought out several toys for Asher from 12pm-2pm today. We blew up a punching balloon and played catch. The first one had several holes in it and Asher had a good time laughing as I tried to blow air in and air blew out on his face. Then he played trains for a few minutes. Then he colored in his Spiderman Coloring Book that he got in the mail as a gift. I was so impressed with how well he was holding his blue crayon and he even seemed to be coloring inside the lines (course when I commented on him doing that he started going out of the lines and giggling about it). Around 2pm he started to get tired and I let him watch TV before his shower and dressing change. OT came in, a different gal than last time, with items to do an evalution on Asher's motor skills and I told her it was shower and dressing change and naptime....so....I told her either come earlier in the day one of the next few days or we'd have to do it outpatient, so guess we'll see. He's been sleeping since around 3pm.
Asher's dressing is now tegaderm again. He can have it changed every other day or every 3rd day and we can't get it wet in the shower.
The NP came in and just chatted with me....she said she was sorry she couldn't be here this morning, she was doing a transplant with another patient. She said a lot of the frustration could have been eliminated had she been here, because she has also been calling Scott every day and she does know what Scott says too, and the doctor just didn't know everything. The NP has been our one consistent person throughout the past 4 weeks. Anyway, so we talked things through .... I need to decide by tomorrow if I want to give Asher a NG tube or I want him to go home on TPN....if TPN, she only wants to see it go for a week at most. So starting tonight Asher will try to get his first oral med and then tomorrow, both of his oral meds. She also reminded me that someone needs to clean the house before Asher goes home (especially since we have had workers there)....so....I suppose I need to make the time to do that as well....his antibiotic is done Saturday....So we're looking at Asher going home sometime soon, between Thursday and Sunday most likely.
I keep telling myself we're so close to being outta here....just one more day, one more day, one day at a time. I have started a lot of blog entries, and not finished, regarding how I "feel" lately and I know there is just SO MUCH emotion in me about this being "over." I know I have a lot of fear concerning being in the "out of treatment" phase. I know I shouldn't let fear control me. I know I "should" feel happy. I know I should celebrate. But, it isn't that easy, or that simple. (Thanks Kathleen for the guestbook entry that helped me see why it is I feel this way and that I'm okay and normal....)
Thanks, to SO MANY of you, for following Asher's progress and uplifting our family in prayer!
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Monday, March 26. 2007 at
Day 13 post stem cell infusion
RBC Morphology - anisocytosis (variation in size of RBC's) slight
WBC Morphology - toxic granulation present (increased number and prominence of the azurophilic (primary) granules; seen most often with bacterial infections and in association with cytoplasmic vacuolization)
Asher's okay today. Coughing lots (I really don't think this is a platelet reaction....I think he's sick with something), really bad runny nose when he is sitting up, just kinda blah today. Had a few smiles, but other than that, blah. Laying down. Watching TV or napping. He was mad at PT and wouldn't cooperate. He gave his mad face to the doctor and NP. He's been irritable. He just doesn't seem to feel too well but he is okay. He is peeing in the urinal only (not his diaper) since midnight last night. He has had several really small messes in his diaper but hardly anything to weigh on the scale. The doc and NP say he looks good. They want him to eat and then he can go home. I don't see that happening too soon. Tonight when they hang the TPN it will hang for only 12 hours and be 50% of his calories and they will NOT give any additional fluids the other 12 hours, so they can see if Asher will drink tomorrow. They will only give him a one day chance. So, tomorrow's the day. Today Asher refused all food and drinks and said, "I can't eat, I'm coughing right now." I'm not real big on pushing him....it isn't even a month post chemo, or two weeks post mouth sores or vomitting, and I think it is a lot to ask of him to eat. I have told him the sooner he eats the sooner he can go home, but I am not pushing him more than just telling him that. I am a bit worried about the cough, actually. They already came and did a chest xray (about 25 minutes ago) and they just did a nose swab too.
Asher weighed 16.2kg at 6:30pm. He also had to have his nose swabbed again! They only had snot from the first swab, no cells. I forgot to mention, the PCA was taken away this morning. Asher had pushed it one time this morning and later on, by a couple of hours, he cried, "I need my button." He hasn't asked since then. He continues on with no fever, just the cough and runny nose now. I was surprised when I saw his butt owie (otherwise known as the skin graft site that was to finish healing his head, which didn't take) last night, it was almost healed. Just a tiny area of the skin remains "open." I continue to put bacitracin and a 2x2 gauze on it at each diaper change to keep the yucky stool off of it. He continues to use his urinal (with no accidents) but is still having a greenish color stool every 2 hours or so. I think the C.diff medicine ends this coming Saturday, so maybe he is still recovering a bit, or maybe that is just how it looks with TPN and nothing in his tummy. He did try one bite of hotdog tonight, with ketchup on it, and just about threw up, so I let him spit it out. I'm tempted to just NG tube him tomorrow to get going with the food thing. He does need nutrition and he isn't going to eat. He won't eat with a NG tube either, but at least he will get "food" (formula) in his tummy and not have TPN going into his veins which isn't the best long term anyway. So....anyway....Asher had a good nap on the couch today, but it was short because I had to wake him for the chest xray (which still really scares him because of a big machine in his room, two strange people in his room, and I have to wait outside the door)....but he seemed in a better mood late in the day and we just finished playing Zingo and now he wanted to watch Nemo. He's going to fall asleep soon. Tomorrow will hold more of the same. Not a lot going on this week I don't think.
The transplant NP asked me why Asher looked different. She said, "Are his eyes swollen?" I said, "I noticed it too after being gone 3 days, but I think it is just that his eyelashes are all gone now." She looked closer and she said, "Yup, that's it." After being with him a full day now he looks "normal" to me again
Asher earned 3 tickets today and he just put them in his piggy bank. He earned 1 for his dressing change and 2 for 2 nose swabs. His nurse awarded them to him but he was kind of upset at that moment so she had just put them on the table. He'll be excited to trade 5 tickets for a prize tomorrow I am sure!
He's still not asleep. He was talking and being silly with his favorite night nurse. She was thrilled to see him sitting up and talking to her and she said he looks really good.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Sunday, March 25. 2007 at
Day 12 post stem cell infusion
Asher's counts appear to have stabilized today, if you can go by one day as an indication of anything.
Counts from 4:30
Asher's ANC didn't go down hardly at all since yesterday. Hopefully that's an indication that his body is going to take over and the neupogen isn't artificially propping him up.
Asher's pretty tired still today after waking up around 8:30 am. He is yawning often. He was complaining of pain during the night, so we pushed his button 3 or 4 times. (Mommy wants to make sure if it is tummy pain you ask for the nausea med that is PRN (0.5 ativan) instead of pushing the morphine.) He seems to be okay now that he's up.
Also, Asher picked up this cough last night while he was getting platelets. It isn't very often, but it's still there today. There is less blood in his nose, so hopefully the raw spot up there is healing itself over.
Today, I think we'll take it easy and play video games and watch TV. depends on how he feels as the day continues.
My sweet little guy is sleeping. He stayed awake long enough to see me come back and tell me about a few new things here and watch a little TV (I notice he is feeling more comfortable changing the TV station with the remote all by himself). He is coughing; he says it doesn't hurt. All of his eyelashes are gone now but he looks really good. I may squeeze in a nap with him now. I was able to get an afternoon nap Friday afternoon with the girls and then last night I got 9 1/2 hour of sleep with only one bathroom break around 4am (that's a pregnancy record). So....I feel a lot better this morning after 3 nights at home and ready for the week ahead. I sure hope we can bring Asher home next weekend.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Saturday, March 24. 2007 at
Day 11 post stem cell infusion
Asher continues to not have any fevers and he continues to heal up.
Albumin Serum 1.8
Asher probably will get platelets later on today, depending on if the Dr's want to do it tonight or in the morning. As of this writing, they haven't done rounds on Asher yet to decide.
Everything else, according to the nurse, looks really good.
-- Update 21:00 --
I'll try and recap the day as best I can.
At about 9:30, we got Asher up for the day and proceeded to give him a shower and a dressing change. Yesterday, Steph and I had figured that this would be a good day for me to head home for the day to spend time with her and the girls (as it had been 21 days since the girls saw mom and dad together) and have someone sit with Asher in the hospital. At about 10am, Grandma Eunice and Grandpa Jerry came by the hospital. Initially, I was really hesitant to leave Asher for the day. Mainly because of the nurse we were assigned. Neither Steph nor I really cared for this nurse, but ultimately, it ended up working well and I got some high praise remarks from Grandma/Grandpa when I returned. It appears that the nurse handled things very well, was prompt, and very thorough and did everything I had requested prior to leaving. It sounds like the same nurse is back on Sunday, so I bet we'll have that same person again.
After teaching Grandma and Grandpa the ins and outs of being in a transplant room, I headed home, but was sure to check in every couple of hours to see how things were going. Ultimately, things turned out okay, but there were a couple of rough patches.
With Asher's platelets so low, and having his morphine discontinued, Steph figured he would be tired today and having withdrawal symptoms from his morphine, and sure enough, Asher conked out shortly after lunchtime. When he woke up, he was pretty upset. We were able to get his button pushed twice, giving him a short burst of morphine and that seemed to do the trick and he played pretty good the rest of the afternoon. I had actually forgotten to mention the PCA button and thankfully the nurse was able to come in and show them how to push it.
During the middle of day, the nurse noticed that Asher had a blood in his runny nose, which he had been having for a couple of days. With his platelets at 22,000 to begin the day, he decided it would be a good idea to call the doctor and see about getting the platelets today instead of tomorrow like the doctor had initially planned. The platelets were hung around 5:30-6:00ish and infused over about 90 minutes after Asher had been premedicated with Tylenol.
When I came back to the hospital, the day nurse told me that Asher had started coughing during the infusion of the platelets. I talked to the night nurse about this and she indicated that really the only reason kids had this reaction was that if it was an allergic reaction. To make sure didn't get worse, she gave Asher a dose of hydroxizine, which has antihistimine properties. Asher only caughed once after he got the hydroxizine, so something worked. I remember that kids can sometimes have a reaction to platelets from certain donors but not others.
When I walked into the room, Asher immediately gave me the update on his hot dog that had been ordered from the cafeteria. Apparently, they had forgotten to give him mayo. Over the next hour, he kept asking me to go downstairs and get him mayo. I told him I'd go and get it if he'd take a bite, but he didn't want to, so I didn't. I didn't really think it was safe to get mayo from the community dispenser anyway...
Also, I showed Asher one the things I had brought from home per his request. I brought Spaghetti-o's with meatballs. After talking to mommy around 7:45pm, he asked to eat them about 8pm and one of our hospital-friends Suzie was able to get one of the kitchen people to open the can. Asher actually ate some of them too! He ate one meatball and about 10-15 circles of noodles. He washed it down with a single drink of water. Not bad for a "first meal" Now the key may have been the talk with mommy 15 minutes prior....as she has told Asher to "take a few bites and drinks" and "do the best you can" because "if you eat you can go home much sooner." So, she's thrilled he is eating!!! Yeah!
Asher was pretty exhausted, I could see, from playing with Grandma and Grandpa and he just crashed now at 9:00 after watching some shows on Disney Channel. It sounds like they played with most of the toys in the room and made a bunch of balloon figures out of the long 'balloon animal balloons' that we have here. Also, Child life came by with a CARS balloon. From what I heard, Tigger and another character were around the hospital and they peeked in the window at Asher from the anteroom, but he was sleeping. Asher wasn't really interested in playing with me when I got back and he just wanted to talk, sit by me for a few minutes, and watch his TV shows.
Here's what's going on with the medicine at the moment:
The ativan, hydroxizine, morphine, narcan has been stopped
the zosyn will be stopped sunday
This leaves Asher just on the three antibiotics (flagyl for the cdiff, and Linezolid for the enterococci, and acyclovir) and one antiemetic (zofran). He's still on the Zofran, but the doctors want to discontinue that. I think I'll talk to her tomorrow and ask that it stay a couple of more days, depending on how he's feeling. He's come off of so many meds all at once that we're expecting that he'll start to have some small withdrawal and we'd rather not re-introduce nausea into the picture, as the antibiotic may cause some nausea.
Asher had one medium sized poop today, and is keeping up with his intake of fluids.
Before bed here, I put the room back to it's normal configuration. I had moved things around yesterday to do some cleaning and arranging and tried a new configuration with the bed over by the front wall and the trash can. To make it work, I basically had to sleep on the couch backwards and that didn't work very well, so I'll go back to the way that's actually more comfortable. I got one of those yellow-eggcrate-foam-mattress-cover-things to fold in half on top of the couch for this stay and it does make a difference and makes this couch a little bit more comfortable. Thankfully, I am still able to get a good amount of sleep here at the hospital and will be trying to stay at night as much as possible I think in the coming week, assuming Steph and I can work out the logistics of coming and going. Once I know what a noise is, I can pretty much sleep through anything.
Anyway, Asher will hopefully get a good platelet boost for Sunday and should have some more energy. It will be interesting to see if he's cranky from being off all of these medicines so fast.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Friday, March 23. 2007 at
Day 10 post stem cell infusion
Asher woke up very Smiley today. For most of the morning, he was in a good mood and was even up and playing on the floor with me for a couple of hours without complaining of leg pain.
Counts 6:00 DIC Panel
Red Cell Fragments NONE SEEN
This morning, they TPA'd the white lumen because they couldn't get it to draw. Asher got a dressing change and a shower around 10am.
He appears to finally be clearing up the Cdiff because his stools are a lot less. Just a little bit a couple of times today. The doctor did make a comment that it should start to heal itself now that his counts are coming in.
Pain control is going down on the morphine to 0.1 continuous today and want to eliminate it entirely tomorrow but leave the demand dose (PCA) there in case he needs a little boost. he only pushed the button once yesterday (and that was when mommy did it before his shower and dressing change) and we've pressed it twice today.
albumin low, so they're giving him some today just as a push in his IV.
Asher is finally showing interest in food, and they are taking his TPN down to 75% of his daily calories and run 18 hours a day. Hopefully this will encourage him to eat.
decrease ativan by half
look to lessen the hydroxizine as well.
16.9 weight at 6am
-- Update 15:00 --
Asher fell asleep at around 2:30 pm after playing pretty hard until then. We had decided to clean the room up and make it more livable after accumulating stuff over the time we've been here. so, the room is rearranged a little bit and once Asher wakes up, we'll either play on the floor some more, or we'll play playstation.
-- Update 17:00 --
Talked to the NP about a few things we had questions about.
Asher's albumin is low because by default they don't put it in the TPN anymore. the pharmacy believes it could interact negatively with some of the drugs in the hospital, so they only put it in with kids who need it. Basically because Asher just wasn't getting enough of it because he's on TPN.
The magic number for restarting Neupogen is ANC below 1000. And that really is anytime over the next 6 months or so. Anytime Asher is in clinic and has an ANC below 1000, if that happens, they'll give him a boost of neupogen.
Saturday the Zosyn will be discontinued and they'll also discontinue the hydroxizine and change it to only as needed (PRN).
-- Update 23:00 --
Asher played hard tonight after he woke up from his nap. He slept about 3.5 hours and woke ready to play. He asked for a hot dog for dinner, but didn't eat any of it. later on, he asked for noodles that go round and round. After thinking a while, I figured out that he wanted spaghetti-os. All I had was chicken noodle, so I tried to get him to taste a few noodles, but he wasn't interested.
We played playstation most of the night and at about 10:30 he got tired and fell asleep.
Asher had no fevers today and contintinues to look really good.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, Hospital Stay, Infection, on Thursday, March 22. 2007 at
Day 9 post stem cell infusion
I used to just think the difference between night nurses was how quiet some were and how loud others were. Now I know the real difference are the ones that just hang and run meds and the ones that care.
Asher got a nurse tonight that has never taken care of Asher. There aren't too many nurses left here at PCH 2nd floor in that situation, but we got one tonight. That fact doesn't bother me, but I found it odd she never asked anything about Asher or what she could do for him tonight or anything prior to him going to sleep.
This nurse doesn't check one diaper. Curious why she wasn't warned that he had C.diff and fills a diaper every 1-2 hours. She hangs her med and leaves. She has no intention of checking Asher or his diaper at that time either because she comes in without a yellow gown and gloves on. So, already two times tonight I watched her come in, start a med, and leave. I get up, Asher's diaper is so full it has overflowed to the chuck (pad on his bed) so I change his diaper and the chuck. The third time two pumps were beeping for 10 minutes before I got up, shut them off, and then changed another diaper. Seconds later she came in, "Sorry I let them beep." Then she said, "The last stool had blood in it." Yeah, I know...I changed his diaper....oh well....
In situations like this, I prefer to just stay up all night and take care of Asher because I want someone who isn't afraid to change a diaper or afraid to touch his head to see if a fever is starting....so that's me tonight.
And, the moral of the story....I am really amazed and thankful for the night nurses that are willing to stand by a kid and take care of them when a mother or father is tired and needs some sleep at night! Asher and I have been quite blessed with a few wonderful night nurses the past 9 days, one in particular....she had Asher 3 nights last week and 3 nights this week. Whenever I would wake up, she was always there with Asher. She stayed by him during vomitting, she changed all his diapers at night, she mixed a special cream-powder for his butt to protect it from all the diahrea, she carefully lifted him to weigh him at 6am, he even took Tylenol from her so I could sleep, and she bought him a special Elmo twirly flashing light toy and gave it to him the other night. She's great and she's making such a huge difference! Hope she's back next week so I can tell her just that.
The good news, for tonight, is his temp has been 36.8-37 since 9pm! Yeah Asher!
PTT Time 14.3
Thrombin Time 15.3
weight 17.6kg I think at 5:30am this morning - the transplant staff said this is okay, but hey, his diapers are barely fitting and we're talking about 3 1/2 lbs extra on him right now
They are stopping the anti-fungal medicine and the neupogen with his ANC over 10,000. They got the bacteria sensitivities back; the bacteria in his blood (Enterococci) is resistant to Vancomycin so he is getting a different one as of this morning (Linezolid) and he has to get it for 10 days so his hospital stay is for sure another 10 days. They will slowly take other things away too, the morphine, the TPN, etc. He hasn't had a fever since 4pm yesterday. He hasn't thrown up since morning yesterday, I think. His stools are still pretty big/heavy, and he's averaging 8 a day they said (sure seems like more than that to me, but every now and again he will have a urine only diaper).
Asher's skin started peeling yesterday from the Thiotepa chemo skin burns/Paliferim skin rashes. His head and elbow were the first things and now I see his armpits are next. His elbow was really bothering him and he kept rubbing off the dead skin onto his pillow last night.
Asher is up and looking really good. Not as tired anymore and more himself! He's on the couch playing game boy now (I had gone to the shower and he said he wanted to sleep there but I put game boy in his lap just in case and sure enough, when I got back he was playing Curious George). He said to me, "I like you sitting by me." He's too cute.
Asher has started getting nosebleeds. They aren't too severe yet. They started as pink tinged mucus that he just blew out but this morning the other nostril has blood that just runs. So, we'll keep an eye on it today.
So, I asked Asher if he wanted to call his sister to say happy birthday. Asher said, "No. It's my birthday. Cuz I need it more. It's not Lexa's birthday yet. Cuz it's mine." Earlier this morning he said, "I don't know how to make a cake." That came from our conversation on stem cell collection day (when he thought as soon as he got his stem cells he could go home....he was quite upset when I said it would be a few weeks yet) when I told Asher when he was bigger and stronger we'd go home and celebrate Alexa's birthday, make her a cake, and celebrate Easter too, and look for Easter Eggs. So, he remembered that. Anyway, Happy 3rd Birthday, Alexa Belle! Mommy and Asher will celebrate with you soon!
So Asher was up from about 9am-1:30pm. He sat on the couch with me the entire time and after a shower and dressing change he napped till around 3:30pm. I tried to sneak a little one in there too.
Asher's eyelashes and eyebrows are about gone now, with some just hanging on. I notice his left eyelid isn't opening all the way.
At a "typical lunch time" hour Asher asked for pizza! I was thrilled. He is asking for food. I didn't expect this meant he would eat anything, but I ordered it anyway. While waiting for it (it takes about 45 minutes to get it from room service) he said he wanted mushrooms on it. I tried to tell him the hospital didn't have mushroom pizzas but when we get outta here I'll be sure to get one from Pizza Hut for him. He cried (he is a bit emotional/moody/irritable today, like yesterday, although better today). Anyway, I had ordered cantelope and pizza and potato chips and a chocolate chip cookie. He took a bite of cantelope. He held it in his mouth for a bit and then started to chew it and then whined. He wanted to spit it out. I expected this. But, I'm thrilled that he put it in his mouth! He didn't drink anything today at all. I think I forgot to metion the last two days he had drank a bunch of water, although usually threw it up after.
Asher looks to be back to his almost old self already, schedule wise. Although, he is napping again now, but will probably wake up when Scott gets here.
I talked to the transplant NP around 4:30, during and after she played with Asher and his frog and lizard. She said he is looking great (although she just noticed his runny nose and is talking about swabbing him now, although, she wants to wait to see what his platelets are at because of his nose bleed). She said if Asher is only on the one drug for the Enterococcus, he could go home on it, but it will still probably take about seven days to get him ready to go home. So I told her I want the calories on the TPN cut back. They wouldn't want to cut back on the electrolytes, which makes sense, but in the past we have learned that Asher just won't eat if he is getting TPN or NG tube feedings. So, at least I threw it out there now. Also, Asher's morphine will go to 0.1 continuous tomorrow and we'll see how he does with that. I think he will do okay. We really only push the button when I shower him now because of the bone/skin pain. Oh, I also talked to the NP about cutting back on the antinausea meds, starting with the Ativan, going back to 0.5 if he is still at 1.0 (and she said 0.25 if he is at 0.5 now but I don't think he was yet). I also told her I want the hydroxyzin stopped. She mentioned if he remains fever free (forgot for how long) she will remove one of the other antibiotics too.
In any case, we're on the road to bringing our boy home. It's been an emotional week. When it gets too quiet in this room, with Asher napping, I am brought to tears at just the thought of one part of how this past week was for him, for me, how the past 10 months has been for him. I am sure the pregnancy hormones don't help my emotions right now, but I have decided it is time for a break. After crying several times last night, trying to get some sleep, trying to make sure Asher stayed dry with his diapers, I just need a 3-day weekend. I need to see the girls and just get some fresh air. Hopefully the house isn't too torn apart from the warranty repairs that have reeked havoc there this week. Scott will be here soon and I'll head home. Be back Monday morning or Sunday night I guess.
Oh, and I forgot....
Last night Asher asked to pick from the "prize box" after his dressing change. He just brought it up out of the blue. He used to have only one dressing change a week and get a toy from a prize box while he was in the hospital, but in transplant he gets one every day and has never been offered a "prize." But, the nurse held up the toys outside the window to his room and when Asher picked, she washed them down and brought them to him. So today Asher wanted another prize. However, it isn't safe for Asher to get those toys yet. So, the child life specialist came in with a piggy bank with Asher's name painted on it and she said Asher would get a ticket for each dressing change. I talked to Asher and we agreed after five tickets we will call the child life gal and he will get to pick a prize worth five tickets. At first the said, "No, I get five tickets," he meant for today's dressing change. I reminded him he gets one ticket each dressing change and after he has five (so Monday) he will get to pick a special prize (one that is set aside for transplant kids - mainly that it is brand new).
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Wednesday, March 21. 2007 at
Day 8 post stem cell infusion
Right after my update last night, Asher started having more yucky diapers, lots of pure green liquid vomit (with hardly any flem problems this time) (I think that was at midnight), and fevers returned throughout the night.
I have asked a few times why his vomit is so green and I'll ask the doctor again today, but the nurse said green bile is what comes from the liver and when kids don't eat, that is the color of their vomit. That makes me feel very nervous! So I hope I can get a doctor to tell me more specifically why and if this is OK. I had noticed it start around the time the TPN started, I thought, but anyway.
The last two yucky diapers had very little to no blood, so I'll be watching it more today.
Asher's 6am weight was 17.3kg. My goodness....he must be holding some fluid somewhere!
Asher seems to have had some more pain through the night. My thought is maybe he's finally healing, and I'm sure his bones hurt too from his counts rising so fast and from the neupogen.
So, his counts are very big....will confirm when I get the actually printout, but here's what Asher's night nurse said:
Counts from 3am
I think I may actually go back to sleep here, see if I can get some more rest.
The doctor and other transplant team nurse/assistant were just in. They said Asher looks better today than yesterday. He's going in the right direction. They want to come back to see the Broviac site in person later today. Asher will get platelets today and stop neupogen in a day or two (if his ANC is over 10,000 tomorrow they will not give him neupogen tomorrow, if it isn't, he will get a total of three doses after his ANC is over 1000). His DIC is better today. They aren't changing anything else today. If Asher was able to take something by mouth, they would prefer to give the C.diff med orally, but won't do that just yet. They still don't know what the bacteria is sensitive to, but hopefully will know soon. They said obviously something he is getting is working for it. Nothing from yesterday's cultures has grown as of now. They said some of the fever can be due to the neupogen and the cells grafting.
The nurses said his stools are a little less watery and a little more brown in color, so maybe he's close to kicking the C.diff.
Asher is having more pain today and I think I'll ask the pain team to leave his morphine alone for today, so still 0.2/hr continuous with allowing Asher to push the button as well.
He's still sleeping.
16:30 38.4 - took Tylenol
Asher went almost 12 hours without a fever! Yeah Asher!
Asher has been more irritable while he's been awake. That's probably a good sign since he has more energy to be irritable.
The transplant team nurse/assistant has checked on Asher tonight and said he looks really good and he's not out of the woods yet, but he is improving.
Asher is up for the third time only today. He wanted to play Peggle Deluxe (free game on my laptop) first two times he was up today and the second time he fell asleep on me on the couch while playing. He does have little engery. He's up now; had a shower, dressing change and will now play with Scott some. Asher said, three times, "Thanks for coming back Daddy." Awe, kinda sweet and kinda sad at the same time. If only I could bring the girls too because I know he misses them and I know he would feel better, faster, seeing his sisters too.
PT stopped in but Asher was sleeping. She won't be back till Monday.
OT dropped off some little tasks that we can do with Asher at home (or the hospital).
Asher got magnesium today because he was low.
Not much else happened today.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Tuesday, March 20. 2007 at
Day 7 post stem cell infusion
Well, I crashed at 8:30pm last night. I sure was tired. I woke around 11:30pm, saw nurse with Asher and took a bathroom break, and then back to sleep, but not very good sleep, and at 1am Asher was calling out. He wanted a drink of water. I gave him one and then put my hand to his head and knew his fever was back. It was 39.9 ( 103.8 ). Not too bad, going all those hours without a fever! He was actually able to skip a dose of Tylenol, but got some at 1:15 now. He had also thrown up, said the nurse, as I got back from the bathroom. He went a lot of hours without throwing up too. Vancomycin seems to be helping.
The nurse also told me she had an hour break so she put TPA in one of Asher's lines and they draw now.
As I was writing the date, I realized my baby girl is 10 months old today. Can you believe it?! Since Asher was diagnosed the week she was born, I'll always remember the dates, the time.... Asher buddy, you have come a long way in 10 months and so many people love you and pray for you and are proud of you. Your mommy is at the top of that list.
Asher has 14 little baby cells. That means his bone marrow is working and that is why his ANC is going up. Woohoo!
band neutrophil 14
PT Time 18.4
Fibrinogen 663 (200-420)
D-Dimer 31510 (<230)
Vancomycin Trough 3.4 (5-10)
Vancomycin Peak 12.8 (15-40)
Potassium 2.5 (3.6-5.2)
Magnesium 1.6 (1.7-2.4)
Asher's fever didn't last long and then he got another dose of vanco and now at 7am he has a fever, 38.7, again. He just got a dose of Tylenol (after throwing up). He actually told the nurse, "I'm tired, leave me alone." It's good to see him talking and expressing himself. He's doing well.
Asher's transplant NP said she isn't doing the chest xray; Asher's lungs sound good and he didn't get much fluid yesterday and he peed out all the fluid from the night before.
Asher is about to get FFP because his DIC is higher today.
His diahrea is slowing down, but he has vomitted several times this morning. He keeps begging for milk but does end up drinking the water I give him, which sometimes makes him throw up again.
His temp at 8:40am was 38.4.
The bacteria in his blood is in the Gram-positive cocci family and we're hoping for it to be narrowed down today.
Vanco level was a bit low in his blood from this morning and so the next 3 doses will be increased.
They changed their mind during rounds and Asher will be getting a chest xray today.
Asher also got Potassium today.
This morning, right after my last update, the social worker came and chatted with me. I'm not sure why I haven't called to chat (and have a good cry) with her before....guess I'm not one to ask but I like her and she's easy to talk to. She's special for the transplant team. So I only just met her the week before Asher was admitted. She asked me a couple of questions, one of which was, "How are YOU feeling?" It isn't asked often. A few people have asked me and when they do I break down into tears. As the social worker said to me, I'm carrying some heavy things around with me right now, so that's been difficult. The doctor and NP came in to check on Asher and talk to me, so she left, but she said she would be back. After talking to her today I realized I will probably seek some type of counseling, if that is what I should call it, in the next few months. It was something I knew would be inevitable, as the last 9 months have changed me, in many ways, but carrying around so many heavy things on my heart and mind is not healthy for me.
Asher and I had a good early afternoon together. I think he woke up around 12:30pm. First time for the day. He played Game Boy and about 15 minutes later he fell asleep playing it, woke for a second, turned off his Game Boy, and while holding it still with one hand, fell back to sleep. But it didn't last long. He didn't want to sleep anymore. At that point I ran down to the cafeteria to get some lunch and Asher wasn't thrilled with me but watched TV while I was gone. After I ate, I brought Asher to the couch with me because he wanted to play "Snow" and "Christmas" (those are keywords for Sims2 because I got the new Seasons add-on). So, we played Sims2. It began snowing, and enough ended up on the ground that I had Asher (in the game) go out and make a snowman, with Daddy (in the game) helping. Asher had fun watching them. But, right after that, in the game, a social worker came and took all three kids away! Asher had been outside for too long and Aubree was crying in her crib too long. Asher was quite upset and he kept saying, "The witch took my kids away!" I don't know where he came up witch. In any case, we went back to "neighborhood" without saving and were able to go back in and play some more.
That's when PT came in to stretch Asher's feet/ankles. She's really good about not asking Asher to move. She just sat at the other end of the couch. She said Asher feels good, and even is 'helping' and 'pushing back' while she stretches him. I told her he walked to and from the shower last night, not too happily, but he did it. I noticed today when I try to change his diapers, his legs really hurt. He gets a bit upset when I make him stand on his feet and he says his feet hurt. I was told by the pain lady to push the button before I touch him, pick him up, or make him stand, and I still have a bit of trouble remembering to do that. Today I did when we went to the shower.
Speaking of his PCA....he didn't push the button at all yesterday and now today we did it two times this afternoon, but we're going to lower back down to 0.1/hr tomorrow. That way we can see if Asher needs more he can push the button, which is better than over-drugging him with morphine.
While PT was in, OT came in. She just said to let her know when Asher is back to himself (not really what she said, but what she meant). She said it might be 2 days before he goes home or outpatient, but he needs to be in cooperative manner to be evaluated.
So, after PT left, the chest xray guy came. Asher wasn't thrilled about going back to his bed, but I promised he could come back to the couch and play, which is what we did (he played Peggle Deluxe on my laptop)....until he overfilled his diaper (and he said, "someone smells")....then I took him to the shower and he had a dressing change at 4:00pm.
It is a bit more red again at the Broviac site on his chest....they are using bacitracin on it. The NP happened to come in at that moment so she saw it at least.
The owie on his butt (where his skin graft was taken for his head (which didn't take)) looks a little bit more owie today....like a big blister that popped, but it wasn't a blister to begin with. I don't think it is healing too well because it is getting too wet in his diaper (although I'm covering it with bacitracin and gauze and most of the time it does stick unless he has a monstrous diaper, which he has the last two times today. It is more pee than diahrea though...the nurse agreed and thought even 90-10, which is what she told the NP at 4pm.
Oh, and the NP told me they know the bacteria in Asher's blood...."Enterococci."
Asher sounds a bit stuffy, again, to me, with his nose running a bit before and after his shower. It hasn't been a huge issue so no one has really even talked about it, I don't think.
So, that's been our afternoon. Asher has very little energy and when he is awake, I can tell he is fighting to keep his eyes open. He still only opens them about 1/2 way too.
18:30 Changed another nasty diaper (that's 4 since 7am)....and, fever 39 (102.2) is back - gave Tylenol
19:30 39.1 (102.4)
I was laying in Asher's bed by him playing a game and he fell asleep at 10pm and I didn't even realize it till the nurse came in.
He had two nasty diapers, around 8:30pm and 9:30pm, but this time they had some blood. The nurse called the doc on call and she said it is to be expected due to the mucositis. Course, I am more worried than that due to the C.diff....
Around 9pm Asher freaked me out, with the way his eyes were wiggling and the puffy face and his not wanting to get off his pillow....he said to me, "I can't see." He still hasn't opened his eyes more than halfway and now it looked like he wasn't looking at me. Then I opened his right eyelid and saw a ton of eyelashes in there. I washed my hands and then worked on cleaning his face, including his eyelids. I mentioned it in an early blog entry that Asher's eyelashes had finally fallen out but new ones had started to grow. So, they are not very long at all and now these are falling out, but instead of onto his cheeks, they are going into his eyes. He seemed fine once I washed his face and eyes and he sat up and wanted to play a bit.
Asher did mouth care (just Biotene and Nystatin) three times today, although one this morning he threw up after. I'm also able to brush the front of teeth in the front of his mouth with the green sponge. I don't dare do more or I'd gag him.
Today, Asher enjoyed opening 4 cards that came in the hospital mail and 1 from home. He gets very protective over them after he opens them.
The good news for me to go to sleep on is his temp is 37.3 (99.1) right now and he hasn't vomitted in many hours. It may spike or he may throw up tonight, but I feel like he's getting better.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Monday, March 19. 2007 at
Day 6 post stem cell infusion
1:00 - 1:30: Asher threw up on his pillow and himself. I didn't even hear him cough let alone vomit, neither did the nurse. I woke up to go to the bathroom and noticed his diahrea and changed his diaper and he said, "Mom, change my pillow." He also needed new wrap/gauze around his dressing then too. His temp was up to 39.1 but by the time all the bedding was changed, I had cooled him with water on a wash cloth, and another bolus finished, he was down to 38.7. He took more Tylenol like a trooper.
He's actually had a few pee only diapers in the past few hours due to the boluses. Hopefully he feels a bit better too. I remember around midnight, or so, he sat up to throw up but nothing came up so he laid back down.
4:30 - 5:00: Asher threw up and, of course, more diahrea. The night nurse was by his side and taking care of him. After he throws up now he says, "I all better. I all better, Mommy." Boy does that bring back memories. He used to say that when he had all those morning vomitting episodes prior to his diagnosis.
Then he says, "I want to sleep."
His fever is up to 39.6 (103.2) and he is receiving platelets right now. The nurse tried to give him Tylenol and he said, "I want mommy to do it." Sure thing, buddy. I wish I could do more than that.
Asher has had more of what he's been having and sleeping the rest of the time.
He did have growth on yesterday's red lumen culture and they are testing it again now to see if it is still positive and adding another antibiotic (vancomycin). They should know tomorrow exactly what bacteria is in his blood.
Asher's skin graft site on his buttock is irritated, red, and I noticed it changing a few days ago when he had all the skin issues.
Asher's pulse is keeping around 140-150. His blood pressure is around 90/53.
Asher had another dose of Tylenol at 9:10.
That's about all I know this morning. Just hoping a doctor does rounds this morning and doesn't wait till afternoon to check on Asher. Asher has so much stuff hanging from his IV pole, going into his tubes, going into his Broviac, it is a bit overwhelming to see it, to think about it, and to trust the doctors. I don't like Asher having different doctors each week....at least the same NP is here during the week
17.0kg this morning at 6am
The doctor and NP were in and said Asher looks good and we just have to ride this out. He will get blood today (hemoglobin is 8.6). They are adding vancomycin and keeping everything else they are doing as well.
Asher can barely open his eyes or mouth....he tried to watch some Goofy this morning but is now asleep again. When he talks it is difficult to hear and understand him. Even with that said, whenever I say, "I love you Asher," he ALWAYS says, "I love you" back to me.
10:15 temp 39.6 (103.2)
Platelets down to 51 by 9:00; guess when he has a fever it eats them up and they are from the transfusion, so they are temporary anyway.
It's very quiet in here right now, guess I'll find something to do on my computer now. Anyone want a Hershey's kiss filled with caramel?
Asher threw up around 11:30 - lots of green liquid - yuck - but he was good about doing mouth care (biotene and nystatin, even swallowing that one) afterwards to clean out his mouth.
11:30 Temp 38.6 (101.5)
12:20 Temp 39.4 (103) - Asher has the shakes/chills pretty bad
Asher had more diahrea (contained to diaper) around 13:30. His temp is still staying high, but not going into the 40's. His pulse is a little better at 135-145 now.
After he had the diahrea and I changed his diaper and chuck (pad for the bed) he laid down and said, "I better now mommy." He's sleeping and snoring, again.
The transplant NP came in to talk to me and she had a lot to say, so let me see if I can remember it all.
They do say Asher is septic.
They gave him blood thinking it would help circulation and cold feet. This morning his perfusion (when you push on the skin and let go and see how long it takes for the color to come back) was 4-5 seconds and now it is more like 3 seconds, so that's good.
Asher has DIC (disseminated intravascular coagulation)... described as little bleeds and little clots. His PT Time at 9am was 16.6 (norm is 10.1-13.8 seconds) (really bad would be 35). His APTT was 45.1 (norm is 22.2-39.5 seconds) (really bad would be 80). Fibrinogen was 462 (norm is 200-420 mg/dL). Vitamin K can help so they are adding that to the TPN tonight and probably the next two nights and will keep an eye on it. If Asher still seems to need more assistance with his pulse / blood pressure, they will go to FFP (fresh frozen plasma).
If Asher's C.diff diahrea doesn't let up, they may go to an oral med, but at this point they know it would be very difficult to have him swallow it, and his diahrea is slowing and not as explosive. So, crossing fingers the Flagyl works on its own.
That's all I can remember right now
15:30 Temp 38.2 (woohoo)
Asher gets his second dose of vanco.
So about 3:00 pm the nurse brought in a bag that has a blanket and a "Sam I Am" doll in it. It is from the Jaydie Lynn King Foundation. About 15 mintues later I asked Asher if he wanted to see a gift and he shook his head yes and when I showed him Sam I Am he said, "I have a Game Boy game with him in it." So he wanted to play. He played "Cat in the Hat" Game Boy game for a bit and is now playing Donkey Kong Game Boy game. It was sooooo good to see him playing. He played for 1/2 hour and then wanted to go to sleep....and he started shaking/shivering again.
The NP came in and saw him doing that. About 3 hours after the Tylenol that is what seems to happen. She said Asher will seem septic again when they give the 2nd dose of vanco tonight sometime (guess she didn't know he had just finished getting it). The antibiotic attacks the bacteria and toxins do things to Asher's body. They think one more night of watching him closely and then the future vanco doses won't be so bad.
Platelet count is now 38.
17:00 40.3 (104.5), highest temp yet, took a dose of Tylenol
17:45 another gal on the transplant team (I think doctor's assistant) came to check on Asher....she said he might be septic after the third dose of vanco tonight too, each time should get better as it attacks the bacteria, which will be less each time, hopefully. She said Asher will have a chest xray in his bed tomorrow morning (when they give lots of fluids they like to check the lungs to make sure the fluid doesn't go there).
18:15 38.1 Temp, 16.2kg Weight (they said he was peeing well), I gave him a shower, then he got a dressing change
I had made Asher walk to and from the shower; only walking he did today. I forgot, PT did come earlier, just as Asher finished playing Game Boy and she said she could stretch him or no and when she asked Asher he shook his head yes.
His Broviac site is quite red. I have been asked the last few times it was changed and as of last night I didn't notice it that much more red, but tonight it was quite red. The nurse put bacitracin on it. She noticed his nose was running after he sat up from the dressing change and asked if it has been running all day. I said no. The only time he was blowing his nose was when he was throwing up it got up in his nose cuz he put his head too far down into his bowl. Anyway....wouldn't be suprised if they swab his nose tomorrow....
18:30 Asher is sitting next to Daddy (who came to visit) watching him play playstation. He's about to fall asleep now, though, already. He is playing Chicken Little. Now Asher is playing too. A little bit ago he was holding 'Sam I Am' and said, "I love Sam I Am."
18:50 Pulse is 135 and blood pressure is looking much better too (96/81 last one).
Temp 37.7, just changed another yucky diaper, this time lots of that green crap that he was throwing up has now come out the other end. His skin graft site (left buttock) had an area that looked raw....put bacitracin on it and put gauze over it, but having it in the diaper area where he pees a ton and had diahrea just isn't that great. After I got done, he said, "Thanks for fixing my butt." I swear, I have the sweetest son ever. Asher is talking a lot more and not quite as sleepy, but hopefully will go to sleep for the night now because I'm beyond tired.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Sunday, March 18. 2007 at
Day 5 post stem cell infusion
Wow, it is two weeks since we admitted Asher for his last round of chemo and stem cell transplant! I keep thinking the days go so slow here, but I guess they are moving along pretty well. To think, we could be halfway there. Maybe in two weeks we'll be at home!
Asher woke at 2:45 and vomitted and the nurse was changing his yucky diaper. About 1-2 hours prior to this, Asher was mumbling in his sleep and moving around in his bed a lot, so I'll bet he was in pain/discomfort from this nasty C.diff. That's about all I know happened last night. Asher's still sleeping right now.
weight at 6:45 16.2kg
10:00 - More mumbling in his sleep, then more vomitting, then more diahrea, then a shower, clean sheets, and back in bed, just feeling blah! Has the TV on now, vomitted again, and got his neupogen shot (he barely cringed).
14:15 - transplant doctor stopped in and said Asher has some cells in the background - Asher's skin coloring is looking much better - skin owie is looking really good (she said there would be signs of healing before we'd see cells) - Asher got a couple of boluses to try to replace all the lost fluid with this C.diff (Clostridium Difficile) - she really wants to stop the vomitting and has increased the ativan to 1.0 and eventually will replace the zofran with the ativan because he seems to get a 2 hour window of play-time in after he gets the ativan....seems to be more effective than the zofran at this point, however she doesn't want to 'take away' from Asher at this point, so the three will all rotate every 2 hours as they started last night - she also wants to try Narcan (if I understood her right) to try to nip the nausea in the butt, she thinks the morphine can also bother the tummy - she said all the drugs are making him sleepy - she is off now for two weeks so we'll have another doctor
14:30 - More diahrea but no vomitting, did dressing change
15:00 - more vomitting, green again
16:30 - fever is back 38.5 - do cultures
17:30 - give Tylenol (Asher took it while sleeping, barely waking up)
18:00 - weight and change diaper (diahrea contained within diaper)
18:45 - another diaper (diahrea contained within diaper again)
19:00 - 38.9 (102) temp
19:05 - Asher was stirring in bed and picked his head up enough to look out the window and said, "It's dark out." I said, "Yes, the sun went down. It is okay if you sleep."
Asher is very sleepy. I think he has been up a max. of 3 hours today and that's laying in bed, or short shower. One point I got him almost sitting up with pillows behind him and we played a few things in bed (the fun little things from TRU that I picked up yesterday). He just wants to lay or sleep or have TV on mostly. Doesn't surprise me since his fever is back; he's always like this with a fever.
I had to have the night nurse do another dressing change because the one from earlier was falling completely off.
Asher's night nurse called to talk to the transplant doctor and she called and asked for the hospital pediatrician on-call to come take a look at Asher. I have met her before, last fall. They are worried about dehydration, loss of electrolytes, his high pulse, and low blood pressure. So far I know he will get some potassium over 4 hours and more boluses/saline/fluids (1 right away and then they are going to start adding up what he loses in diahrea in 4 hours and give it back to him), and they are waiting for the CBC to come back from the blood they drew about 45 minutes ago. If he vomits any amount of blood (he has had two bits of blood come up) he will get platelets whether they are below 20 or not. Right now Asher is stable and they are just keeping a close eye on him.
21:00 vomit, diahrea, did mouth care (salt water very fast, then good swish and spit with biotene, and swish and swallow with nystatin)
21:15 vomit then went to sleep
21:30 tylenol while laying down and still sleeping
22:30 38.6 temp
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Saturday, March 17. 2007 at
Day 4 post stem cell infusion
It has been a busy morning to begin. Just before 2am I woke to Asher wanting to vomit, again, it was green and he had to work really hard to get the little bit out that came out. All diapers were just urine and looked fine. Then at 6am I woke again to Asher vomitting. Same thing, green, and he was just working so hard to get it out. Then I went to take my shower and get breakfast and the moment I walked back in the door he pointed to his mouth, wanting to vomit. Again, same thing, same amount, green....and when he was done he said, "I want the nurse to change my diaper." It was about 7am by this point and I called her in to ask for a little ativan....just do something to stop his vomitting. And then I told her, "Ready for your stool sample?" It was pure liquid and all over the chuck (thick padding we put right under his butt for when diapers leak like that) and his legs and even feet.... The transplant doctor wanted to make sure he doesn't have rotovirus (oh geez, there's that word again) or something like that. I'm beginning to think he just might have rotovirus again because of the awful odor and the vomitting, but I don't know. I'll be asking the doc if the antibiotics can cause this green bile since it started the day his antibiotics started (yesterday).
So, I took him into the shower to clean him off, with a little unwillingness on Asher's part. His skin still really hurts and now this morning he keeps saying, "I'm red!"
Asher's temp was 38.2 at 6am. The last Tylenol dose was at 8:30pm or so last night. He slept pretty well except for the interruptions to vomit.
He just did his mouth care, two of them, biotene (swish and spit) and nystatin (swish and swallow) without much complaint. He even asked for vaseline instead of being upset I was putting it on his lips. He's still awake, too, and watching TV. Maybe he can get in some playing today.
wbc 0.1 (4-12)
rbc 3.03 (4-5.3)
hemoglobin 9.1 (11.5-14.5)
hematocrit 25.7 (33-43)
platelets 54 (140-450)
rotavirus antigen negative
8:30 temp = 37.8
Asher was up from 6:00 until about noon today! Playing with balloons in bed and Sims2 with me and watching TV. He's been sleeping for about an hour.
Childlife brought paint and he's going to paints his window later today.
12:00 temp = 37.6
12:45 another explosion in his diaper, going to finally try to give him Immodium when he wakes up
13:25 wake from sleep to vomit, but not green anymore, normal bile/flem color
Transplant doctor in to see Asher and she said he looks a lot better today than yesterday. Skin is looking better and his mouth looks really good (I thought so too), still some sores there along the gums, but he is using less morphine today than yesterday and talking more. She expects his mouth to look even better closer to Monday. Nothing has grown in the cultures, but continuing the antibiotics for now.
Scott is coming to see Asher in a bit
Asher vomitted again shortly after Scott got here, around 2:30pm and then again at 3:30pm, it was yellow bile and flem. Poor guy. I held off on the Immodium and will try it before bed.
Asher handled his dressing change pretty well; again, no tape.
Scott and Asher had a good visit....at first Asher didn't want to get up out of bed but around 5pm he got up and Scott and he played and I went out for a drive. The thermometer on the SUV said it was 98-100 degrees outside between 5pm-6pm. I hadn't even realized it was that warm out. Was nice to get out, even for two hours. I went to Toys R Us and spent $14 on three activities for Asher and me to do the next few days.
When I got back I found painting on the window in the room. Asher said, "Daddy wrote my name."
I'm hoping to get Asher to take his Immodium here and then do mouth care and then bed soon.
Asher threw up just as I finished typing my last entry and since I thought he was done I thought I might as well give the Immodium....but he threw that up too, and after that he pulled his sheet back and said, "I already went, see?" That was in response to my telling him we had to stop his diahrea! I think this may have been the biggest explosion of them all. Guess I'm getting good at cleaing the mess up. Sure does wear me out. As I was washing Asher, as he lay in bed, he looked at me with a big smile and said, "I love you, Mom." Awe, he knew I was getting frustrated with all his throwing up and pooping because I was hoping by now we could have gotten it under control or even stopped. Before that he actually said, "Sorry," and then I got tears in my eyes. I told him it wasn't his fault. I know I am just very tired and then more moody because of it. Out of the last five nights, I got one good night of sleep (Thursday night). It was amazing though, afterwards, how spirited and happy and silly Asher was being. I can tell he feels so much better once it is out. I have to say I was a bit bummed he didn't give Scott at least one mess to clean up....when talking to Scott about it this afternoon he just said to me, "I rarely change a diaper; the nurses just did it." I, at least, have stopped getting up during the night to change Asher's diapers....I used to do it but I see the night nurses are just used to doing it and now Asher lets them too. He used to cry for me to do it (back in October when I was with him a lot).
Asher did his mouth care and I have stuck to my approval (and the transplant doctor understanding) that I would only 'force' Asher to do the Biotene and Nystatin and since he does both, properly, even swallowing the Nystatin, I agree not to do the two yucky ones and tonight he even said that after swallowing the yellow one (nystatin)...."Not the two yucky ones." Nope, just the two you do okay with buddy.
Anyway....at least I can go to sleep tonight knowing Asher has been without fevers all day today. After yesterday I thought for sure they were going to hang around for awhile, but looks like I was wrong, so far. Asher's already asleep for the night.
I successfully woke Asher up so he could take his Immodium, but he threw up first. Then I gave him a choice, either I use a little syringe to squirt the medicine into his mouth or he could drink it from a medicine cup....he chose to sit back up and drink it from the medicine cup....I told him deep breath and lay back down....so he did....and so far so good.
Asher's night nurse (same as last night) just got off the phone with the transplant doctor and she wants to make sure Asher has an antinausea med every 2 hours....so he will get zofran q6, ativan (0.5 dose) q6, and hydroxyzine q6, so he'll get at least one every 2 hours. I hope this works.
I'm going to sleep now.
The nurse just ran in here 10 minutes ago....the stool sample sent this morning that was negative for rotavirus antigen came back positive for C.diff. So, too bad he just kept down that Immodium; he can't have that with C.diff. They will start a new medicine: metronidazole (Flagyl). She said it will cause nausea....at least he will be getting an antinausea med every 2 hours.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Infection, on Friday, March 16. 2007 at
Day 3 post stem cell infusion
00:00 37.8 (100)
03:00 38.1 (100.5)
They start cultures at 38.3 (100.9) for transplant kids.
Prior to this morning his temps have not even reached 37; they were usually 36.8.
And, to mention, because I have forgotten, Asher has a little cough. And I mean little. He coughs for about 2 seconds about 5-7 times a day, but the nurse just asked me about it. It started about 2 days ago I think and I seem to notice it more when he is laying down. At first last night I thought he was going to throw up so I would jump up and then realized it was just a little cough.
Counts from 6:00
ANC = 0
Asher's temp is holding steady between 37.8-37.9 since 5am. His blood pressure has been on the low side. He was talking in his sleep some and sat up around 3:30am and told me there was a loud noise in his ear. Weight at 6:30am 16.2kg. He had another explosion in his diaper. He's watching Seaseme Street right now.
Asher did his mouth care this morning, but threw up while we were trying to do it. Bile and flem came up.
Temp = 38.1 at 10:30
Asher got his third neupogen shot at 10:30 and asked that the cotton ball be kept under the bandaide this time.
The nutritionist stopped in and said he will be at 100% TPN with tonight's bag.
Transplant team said Asher is doing well for 'day 3.' The doctor said his mouth looks worse today than it did yesterday. She said you can tell he is trying to do his mouth care and it is helping. She said to expect healing to start next week. She said the fevers, since they aren't spiking, might be from the skin rash and underlying layer (or something like that). Parts of him are very red and hot. If it goes away in the next day or two she said that would most likely mean it was the Paliferim that did it. Also, they expect to see some peeling of his skin, especially at the arm pit and groin, as effects from the Thiotepa chemo. I have to watch to make sure the diaper doesn't irritate the groin area. Asher continues to have diahrea in the morning and she said that is normal and is from the chemo and the morphine probably won't help enough and they will give something else to get it to stop. She said they will send a sample to check for rotovirus (oh, not again) and just be sure there's nothing there. I confirmed again with the transplant doctor that the neupogen is supposed to be given subcutaneously, and she said most definitely. It is more effective this way. She is not afraid of infection through the shot site(s). She said they would go to IV if Asher didn't handle the shots well, but the dose would be doubled then. He is handling them quite well so we'll just keep doing them the most effective way. The transplant doctor also said if Asher's flem gets too thick and he starts to want to spit versus swallow (like he did in chemo round 3) that they have a little thing that can suck it out and that 4-year-olds do know how to use them....she said sometimes it can actually irritate the stomach if he does continue to swallow it and then he'll vomit....so I'll watch for that. She said his cough is probably just from irritation from the mucositis in the throat and they didn't hear any fluid in his lungs.
Asher has pushed his PCA button three times already this morning. The pain lady was just in and increased the continuous dose (0.2 per hour now) and the button dose is now 0.4. Asher just pushed his PCA button and turned over in bed and went to sleep (he's watching TV too). That's all he wants to do.
12:00 Temp = 38.4 (101.1)
12:30 cultures taken
12:40 antibiotics given (Tobramycin & Piperacil/Tazobactam (also called Zosyn))
12:50 oral Tylenol given (Asher fought it but then finally took it and it has stayed down so far)
Temp = 38.9 (102) at 13:15
Temp = 39.1 (102.4) at 13:40
Temp = 38.8 ( 101.8 ) at 15:00
16:30 oral Tylenol (good boy Asher!)
16:30-17:30 platelet infusion
17:00 38.6 (101.5)
17:30 chest xray done (due to cough)
18:00 urine sample taken (due to cringing in pain when he last peed in his urinal)
18:00 sponge bath in bed
18:15 37.8 (100) and blood pressure up 101/64 (been low around 80/34 most of the day)
18:30 16.8kg weight
18:30 chest xray: there is a little dark area behind his heart and the doctor said no pnemonia, but like a mucus plug and he needs to work on respiratory efforts (i.e. blowing on the thing (don't know the name) that he got the day he was admitted to transplant, blowing bubbles, blowing up balloons, etc.)
Asher has had the urge to vomit twice this evening. The most recent time was around 8:30pm when he was asleep and all of a sudden he started throwing up and it was green icky. Not sure why. Wonder if the antibiotics made it that color. It wasn't that color when he threw up around 7pm. After he threw up, he did his mouth care, just two, biotene (swish and spit) and nystatin (swish and swallow and he DID swallow). Then it was time for Tylenol and he took it for me just fine and then I put vaseline on his lips and back to sleep he went. I let him cuddle under his favorite blanket and then once asleep I take it off so he can try to cool off.
The transplant doctor did say that having the fever that Asher has isn't harmful, just uncomfortable. So, we'll try to do what we have to do to keep him comfy, cooling his head, giving Tylenol, etc.
Scott came to see Asher today and Asher tried to stay awake for him as much as he could. His mouth hurts so he doesn't smile or talk much at all, if at all, but I knew he was glad his daddy came to see him.
Asher is asleep right now and snoring. He rarely snores. He has slept so much today, beginning around noon or shortly before I think. And, it bothers me. I know he has to go through these down days before he can get better, but it is scarey and lonely, that's the best way to describe it.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, on Thursday, March 15. 2007 at
Day 2 post stem cell infusion
I don't have a printout of the counts again, but here is what I was told:
hemoglobin 11.x (good boost from the blood infusion yesterday)
When his platelets get to 20 or under he will get some....so either tomorrow or Saturday. They expect him to need blood maybe every 5 days or so and not sure on platelets yet. He hasn't gotten many platelet transfusions in the past so he might accept and keep transfustions inside longer.
I woke Asher today around 8:30am after I heard him explode into his diaper. Maybe the morphine will help stop the diahrea which he has from other drugs. He is in a fairly good mood and we have only pushed the PCA button two times. He got his nupogen shot like a champ. He gets his last dose of paliferim today. His weight is back up after two nights of TPN at 16.3 at 6:30am. His TPN will be at about 100% calories tonight.
Asher's skin is still warm but the redness (from the Paliferim) from last night is gone. Only thing is still the discoloration/redness/dryness from the thiotepa chemo, and his elbows are the worst.
PT was here and he refused to get out of bed, again. Can't blame him.
Not much else going on today. It is amazing how cooped up a private transplant hospital room can feel....it is kinda depressing here, at least that is how I feel. Just staying busy with different games with Asher and working on my Digital Paper Tearing when Asher is sleeping. Can't believe 1/2 of March is over! We're almost there!
Thanks everyone for checking on Asher like you do!
Asher hasn't requested any food today and when asked (about food or drink) he says no. When I went for lunch I got a salad from the cafeteria and a cookie and Asher said, "Oh! A cookie! I like cookies!" So I gave him a piece and he took a little nibble and that was it, held it and then gave it back to me. So, I'll just let him ask when he's up for it.
Asher's shower went okay (cept he cried before and during it - I think his skin really hurts him) and so did his dressing change. His skin is looking better and his skin tear looks OK, it won't fully heal till his counts go back up. But I really like this non-tape dressing. The nurse just wraps gauze around his chest and then uses the stretchy stuff (like they used to use on his head) to hold it in place and it is working just fine, thankfully. This will allow his skin to not get worse as his counts start to recover.
Not much nausea today; just gagged on one of the 9am mouth cares.
All of Asher's long (old) eyelashes are gone now and new ones have already started to grow in.
He has pushed his PCA button three times from 10am-1pm. The button dose is 0.3 so not huge. Glad he is remaining comfortable.
Some of his skin redness is actually still there (or back) (on his right arm, his back, etc. anywhere where he seems to have a pressure point now, weird) and the transplant doc was just in here and said she can't know for sure what it is from but the Paliferim does cause skin rashes and as long as Asher isn't itching it, they aren't worried at this point. Asher's last dose of the Paliferim was 15 minutes ago.
He's watching a TV movie now and about to have his nap.
I have taught Asher how to turn the TV on and off with the remote. Last night around 11pm he FINALLY gave in and turned off the TV and said to me, "Mom, go to sleep, I want you to go to sleep now!" It was funny. It was right when his night nurse came in to listen to Asher and stuff (I still don't understand why she did it at 11pm when usually they do it around 8pm-8:30pm). Anyway, so today he turned off the TV when he was finally ready to nap, and that was around 4pm.
He's still sleeping, even though we just got him up to weigh him. He said to me, "What are you doing?" I said, "Getting your weight." He said, "Hey, what happened to the TV?" I told him his show ended and it shut off. He said, "Hey, what happened to my train?" I said, "It's right here" (by his pillow). Then I tucked him back in and told him he could play after he wakes up and I had to go to the bathroom. He said, "Okay," and when I got back he was asleep again.
I forgot to tell this little story earlier.... After one of the nurses was here checking on Asher (around 11am) she used the little tool with a flashlight on it to look in his mouth. So then I told Asher to look in his lizard's mouth (he has this rubbery lizard (and frog) that he is VERY fond of right now). So he did. Then, when the transplant doctor came in around 2pm he told her that he looked in his lizard's mouth. She asked him, "What did you see?" He answered, "Sores." She asked him, "How can you make his sores better?" He didn't answer and she then asked if he had given his lizard mouthcare and he said no. She then told him to keep up his mouth care so his mouth would feel better.
The transplant NP came in this evening and talked to me a little while Asher slept. At one point she said to me, "What are you going to do with your girls when you have to bring Asher to clinic and it is still RSV season?" I said I hadn't thought that far ahead, that I worry about one week at a time most of the time. She then apologized for bringing it up. Truly, I do not really think about April yet. Heck, Alexa's 3rd birthday is one week away and I know we're not celebrating till Asher gets home but I still think about it. When I have no control over certain things, why think so far ahead. I have gotten woken up so much here at night that I am now really feeling the depths of sleep deprivation....I get sad and irritable when I am tired. It becomes hard to think or focus. So, one day at a time is good enough for now. April will be there when it comes.
It is so weird to be cooped up in here and hear it is 91 degrees outside and be missing it (not all bad since I'm 20 weeks pregnant and hot enough inside). I wonder if Asher's flowers are still living through the heat and afternoon sun. We're starting to really miss the girls. That reminds me, the other day Asher looked at the two photos on the dresser here in the hospital room (Asher is holding Aubree and Alexa is holding Aubree) and he said, "I love my sisters." Deep down I think he misses them way more than I even do, so that must be a whole lot!
Oh, and before his shower around 1:30pm today, Asher and I were playing SIMS2-Pets on my laptop and we made our family. Asher really enjoyed this. We forgot to add our 2 cats though before saving.
Like clockwork, about 6 hours after the Paliferim, Asher is all bright red again. I looked in Asher's mouth tonight and his tongue is all white on top....mucositis really setting in.
Asher played with his trains a little on the floor mat tonight, and a little more Sims2. Now a movie on TV....then sleep.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, on Wednesday, March 14. 2007 at
Day 1 post stem cell infusion
The night was pretty good. Asher didn't start to wake up till around 9:10am and then I had to wake him because he was to get his first dose of nupogen and it is in shot form versus IV form (we have been told giving g-csf subcutaneously is more effective than IV, even though there are no studies to say why this is so). Not a real fun way to start his day, but he handled it well.
I wasn't sure if Asher was in pain or not (when will I learn?), but after being irritable for too long after waking up, refusing to eat, swallow, talk, etc, finally around 11:30am I asked that he get a dose (1.0) of morphine via IV. Last night's dose was 1/2 that and didn't seem to help as much so I went with the 1.0 and now a different kid is in this room! Happy, talking to even the PCT, smiling, giggling, opening cards that came in the mail for him, and doing the things he refused to do 2 hours ago. So, lesson learned, once again, don't wait on the morphine. He is actually going to have a PCA and so he'll have a continuous low dosage started a bit later today.
Asher's hemoglobin was 8.1 this morning and he received a unit of blood (actually it is still running). We premedicated with Tylenol (they almost gave Benadryl too but I said please no). So that probably has helped him (or will) too.
Counts from 04:45
wbc 0.4 (4-12)
rbc 2.53 (4-5.3)
hemoglobin 8.1 (11.5-14.5)
hematocrit 22.1 (33-43)
platelets 91 (140-450)
alt/sgpt 190 (30-65)
Asher had another IV dose of morphine around 2pm and about 10 minutes later, all of a sudden, he had to vomit. He didn't seem nauseated and he seemed fine, still playful, but starting to get tired. We need to watch to make sure it isn't the morphine that is making him sick now because the PCA has started....dose is only 0.4 an hour with a button Asher can push if he needs it.
Asher played pretty well from noon - 2:30 (with a shower and dressing change in there) when I put Asher down for his nap....and he is still sleeping, four hours later. He did wake up an hour or so ago and asked for a hot dog and fell right back to sleep....hot dog is now cold.
Asher is bright red, mostly top of arms and chest and back, and head. They think it is from the Paliferim. I remember now that Asher's hands got bright red, like a sun burn, after he got the first three doses of Paliferim (at home prior to admit).
At 7pm the nurse came in to weigh Asher, an hour later than normal (they weigh him at 6am and 6pm around the clock), so I got him up and then he stayed up. We played Zingo on the couch-bed. Asher likes to get out of his bed and come to "mommy's bed" (or "daddy's bed").
OT came today, twice, to say that she will be back on Friday with some tasks/projects for Asher to work on. When she came in the morning, Asher was in pain and crabby and when she came in the afternoon Asher was napping. We will decide together on Friday if Asher will be "tested" inpatient during his stay now or outpatient once he is released from transplant.
PT came today around 10am and Asher wouldn't cooperate with her (she came when he had only been awake/"up" for 50 minutes and our morning didn't start out that great, although Asher and I were playing Ker Plunk! in his bed and she stretched his feet/ankles and said he felt good. She said she has no issues with Asher right now, just get him up when he feels up to it and it is okay if he doesn't.
Asher found his morphine PCA button tonight. The nurse said it was pushed 23 times and he got 2 doses. I think he was confused what it was for because I told him but he was convinced the nurse would come if he pushed it. She had been playing with him (pretending to be afraid of his lizard and frog, which got him up and walking around the room picking them up as he threw them to "get" her) prior to this and he wanted her to come back. I tried to tell him she was probably working and I would play with him but he really liked playing with her.
Asher isn't getting fluconazole (sp?) (anti-fungal) because it can affect the liver and his liver levels aren't back to 'normal' yet. So he is getting a different medicine, via IV.
Asher's urine is back to normal, not pink or red anymore.
Asher is still doing his mouth care, but is kinda whiney about doing it and it takes some coaxing. I tell him to do what he can and swish and spit whatever he wants. He does the salt water, biotene, g-something (white stuff) all swish and spit or just spit, and then he does the nystatin, swish and swallow, all very well. No gagging or throwing up, or if he starts to gag I tell him to take a deep breath and then distract him with something (a toy, mail or something). The transplant doc said that's great he is still at least getting it in his mouth. On examination, she said his inner-cheeks ARE white which is break-down (dead?) of cells and to just do what we can to keep getting him to do the mouth care, even pushing the PCA button prior to doing it.
Asher is still requesting food! This morning, pancakes, then I mentioned the hotdog, and before bed he wanted a Scooby Snack. However, he takes one bite, holds the food in his mouth, and then yells for me to get something for him to spit it out in. He doesn't drink anything offered and doesn't ask for anything. I'm sure the taste is just gone and the sores are just growing....doc said don't force the issue and that is why the TPN is being given now. He has also started to just hold food (like a bowl of cheerios, a bag of teddy grahams, etc.).
I think that covers everything from today. Asher is watching TV right now, a movie, one that is repeated over and over on the same channels, but he doesn't really get sick of seeing the shows, thankfully. I hope he gets tired soon because it is my bed time. I think I need to learn to sleep-in because when they weigh him at 6am, I get up and shower and then go down to get breakfast in the cafeteria at 6:30am when they open and bring it back up to the room. The girls are always up between 6am-7am at home, so I guess it really is best to keep on schedule, but to think I could have slept till 9am this morning with Asher....