Posted by Steph in
Clinic Visits, Counts, Development, on Wednesday, April 25. 2007 at
Asher had his weekly clinic visit today. It got pushed to 8 days since last appointment, instead of 7, because the doctor didn't have an open time yesterday.
Weight 17kg (37.5lb)....I'm just not sure I'm understanding all this weight gain. I think I'll ask her when she calls me tomorrow. Scott said the doctor was excited about the weight gain.
Height 40.25 inch
wbc 3.8 (4-12)
rbc 3.24 (4-5.3)
hemoglobin 10.7 (11.5-14.5)
platelets 239 (140-450)
monocytes 23 (3-15)
We were told the red blood cells were the last thing to come in after a transplant....so you see they have gone up in the last 8 days! Yeah, Asher! I'm still amazed at how little he needed for transfusions. They had warned us that Asher would need a lot during and after transplant, but it just wasn't that way for him I guess. Last week the doctor even told Asher he could ride a "big boy bike" (instead of just his tricycle) because he is doing so well and his platelets were high enough....but....Asher doesn't have a big boy bike (or doesn't know about the one Scott has put away right now). I would like to see his balance get even better before I put him on a bike....who knows, maybe I will always be a horrible worrier when it comes to him and bikes....
In one week he has his MRI. I expect nothing but clear results. Prior to his MRI he will have a nurse only visit to check his counts.
I'm really excited too because after the MRI, they think Asher can go to clinic appointments every 14 days instead of every 7! Perfect timing because I could then plan my OB appointments one week and Asher's clinic the next week and then repeat. Anything to lessen the driving and such with gas prices at $2.93/gallon.
I noticed Sunday night (Day +40) that Asher's eye lashes had started to grow! And, now today his eyebrows are even very defined and his scalp is "dark," meaning we should feel stuble soon. This is about how long it took for his hair to grown back after his 3rd round of chemo in September; looking back his hair was coming in at the end of October.
And, to add to this entry, tonight is chicken on the grill for dinner. Asher said, "I like chickens, don't cook 'em!"
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Wednesday, April 18. 2007 at
wbc 4.9 (4-12)
rbc 3.07 (4-5.3)
hemoglobin 10.0 (11.5-14.5)
platelets 178 (140-450)
Asher has been scratching at his head scar and has some bleeding spots. We're supposed to put bacitracin on it.
Asher looks good. Nothing else to report.
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Wednesday, April 11. 2007 at
Asher's weight is up to 16.7kg. According to the nutritionist, Asher is now eating 95% of his calories (and we no longer have to write everything he eats down on paper)! I knew he had picked up his eating, but wow! He's doing just fine there. Drinking is another thing....
He needs 1 liter of fluid per 24 hours. This is to protect his kidneys from the harsh transplant chemo(s), long term kidney affecting chemo(s), and from the prophylactic med: acyclovir. Since Asher doesn't, and would never, drink 1L of fluid in one day, they will continue the nightly fluids until around Day +100. The doctor said if the kids are taken off the fluids prior to Day +100 their kidneys stop functioning like they should. This only bums me out because it wasn't told to us like this before and I told Asher, the last few days, if he drank his milk or water, that he had at meal time or between meal time, that he wouldn't have to be hooked up at night anymore. I don't like "lying" to him. Scott even asked the doctor today, "Is there anything else that will come up that we should prepare for?" Asher is still "free" after around 8:30am each day and boy does he get happy when he is unhooked, "I'm free, I'm free!" he exclaims, almost singing.
Looks like the neupogen last Thursday night gave him a nice boost and I am so happy he hasn't had to have any transfusions post-discharge.
We will stick with the weekly appointments now, so that will be nice. Also, RSV season is officially ended and I think I can now take the girls (safely) into the appointments with Asher....still makes me quite nervous though....we'll see, maybe Scott can still come over for a "late lunch."
Scott also asked again about the MRI dates. Per the protocol (for Head Start III), they told us he needs the MRI at Day +50 and Day +100. So, that is around 5/2/07 and 6/21/07. Scott asked that they schedule the MRI for us and get us in first thing in the morning.
At home he continues to "get better" each day. His attitude is improving, irritability is going down, and his strength is getting better. Although, getting the neupogen shot set him back a little; he aches and hurts from it. One shot gives him such a huge boost. I am still not very pro-medicine, so didn't dig into the oxycodone (pain med) or anything like that. I just remind him to rest. We go outside two times a day, for short times, around 1 hour maximum. It has been windy so he has to wear his mask and he doesn't fight it. Today he didn't watch any TV until after dinner, and then it was just one 20 minute show, then off to bath and get hooked up and to bed. He just played with Alexa and Aubree all day, besides his visit to clinic which put us leaving the house at 12:30pm and getting home around 3pm, faster day than normal today.
I want to thank everyone that has been signing the guestbook recently, especially those that have been following Asher's journey but have never posted before. It is really nice to know who has been coming here to check on him!
I wanted to mention, too, after I got an email from a friend today, the hospital will "refuse" and return to sender any mail they receive for Asher now that he is no longer admitted. We were told at one time that they would just send it to clinic since we were going two times a week, but the person in charge of the mail now told us they don't do that. She said they have too much mail and if the person isn't on the admittance sheet, the mail is refused. So please contact us if you do not have our home address and have something to send Asher. Thanks so much for thinking of Asher and sending cards and gifts to him!
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Friday, April 6. 2007 at
2pm - Asher looks great they say...Temp 36.9...Weight stable at 16.3kg (fully clothed)...Cdiff from Monday (1pm sample) was negative...Nutritionist said Asher seems to be eating 60% of his calories and that is great less than one week post discharge post-transplant! Way to go Asher! She also said to increase his calcium (even give him Viactiv if he will like it - I have some cuz of taking extra while pregnant) and give whole milk instead of 1%. They are checking electrolytes and will order the IV fluids to continue through Monday (wonder if this is Tuesday now instead). Really need to lotion Asher up, says the Doc. He's sooooo dry. Really he is just peeling that layer of dark "tanned" skin from that burn from the chemo and the rash from the paliferim. Doc is advising us, because Asher looks so good, to move him to one day a week clinic and change Monday to Tuesday and skip Thursday. This is great because it is 3 hours for the kids and me away from home and 2 hours for Scott away from work for each clinic visit.
ANC 870 (needs to be above 1000 - doc called me at home around 5pm and said I need to give neupogen shot tonight)
9am - overnight IV fluids finishes and he gets unhooked....then Asher had 4 medium sized pancakes, 2 slices of bacon, 1 banana, and about 2oz of 1% milk
11am - Asher ate a few pretzels and had some red hawaiin punch
played outside some, no lunch, then off to clinic
once home from clinic, played outside some then inside to play and make cupcakes that Asher has been wanting to do so much
5:00pm - Asher makes cupcakes with mom and Alexa
6:30pm - Asher eats a great dinner - two servings of lasagna and some peaches and milk
7:00pm - Asher frosts and decorates the cupcakes with mom, dad, and Lexa
8:35pm - NORMAL bowel movement (been awhile since we have seen one of those!)
8:55pm - give Asher a neupogen shot (glad we had some left from last fall) & hook him up to IV fluids
In between all of that, Asher was very moody after his clinic visit, once at home (not in the SUV).
Last night he cried out twice because he had to pee and by the time I got to him he had overflowed his diaper....just thinking the IV fluids might be too much....disappointing he is being woke up from it....hoping tonight he will be able to get more sleep, if not, will try to make sure he gets a nap tomorrow so he isn't so crabby in the evening.
Posted by Steph in
Clinic Visits, Counts, Development, Home after Treatment, on Tuesday, April 3. 2007 at
wbc 3.9 (4-12)
rbc 3.26 (4-5.3)
hemoglobin 10.4 (11.5-14.5)
platelets 78 (140-450)
monocytes 28 (3-15)
Tonight, 12 hours of TPN and then discontinue and use IV fluids at night, probably until next Monday but recheck Thursday.
16.3kg weight (36lb)
102cm (40.2" = 3'-4") height
Use Lubriderm on his skin due to extreme dryness and peeling in some areas still.
When Asher was discharged from the hospital, he was given a special post-transplant mask: 3M 1870 Surgical Mask N95. He has to wear them when going into public areas (which is clinic or a store (which we haven't even taken him into one yet) and even outside if it is windy (since we live in the country with neighbors/houses and farms with dirt that flies around). He has to reuse them and they only let Scott take about 8. I looked them up on the Internet and we can get some on Ebay; a box of 20 for $1 a piece plus s/h. Or, even a company selling through Amazon has them for $3 each.
When I told Asher he had to go to clinic today to make sure mommy was taking good care of him, he said, "What are the doctors going to do?" So, as I opened my eyes wide, got really close to his face and head, I said, "She is going to look here, and here and here," (I was pretending to look into his mouth and ears and eyes). As he giggled, I smiled and said, "OK?" and he answered, "OK."
When we got home, about an hour later, Asher said, "I'm very happy to be home again." And, at the dinner table he told Scott the same thing, "I said I am very happy to be home again."
Everything in between just doesn't matter....it is what happens at home that truly matters.