Avery's Journey - Childrens Brain Cancer
Sunday, October 31, 2010
At it again....
As if we weren't having enough fun already.... Avery came down with another fever last night so once again we packed it all up and headed back to Childrens Mercy. This time we were able to go right up to 4 Henson instead of hanging out for 5 hours in the ER. Much better than last time. She is of course in isolation again...don't even get me started. I've decided she is destined to be a loner that plays with adults only -- good thing I am total riot most of the time.
She had a fever last night when we came in of 101 degrees and they gave her tylenol -- that lasted for a couple of hours and it slowly crept up again. She had a rough night as we suspect her tummy was giving her troubles. She spent a good majority of the night whining to herself and waking up, only to be consoled by daddy--- standing up.... he he he. She wanted nothing to do with me but of course wouldn't let daddy sit down in the chair either - figured that makes up for not wanting mommy. None of us got much sleep and 7 am came way too fast. She has had a low grade fever this am but seems to now have gotten rid of it for now.
Nothing has come back in the cultures yet so more of the same. Dr's say they don't expect much to show up and plan to finish antibiotics and kick us out after 48 hours of negative cultures. The good news is that her Hemoglobin and Platelets dropped dramatically and she was in need of transfusions last night so they got her all hooked up. (hmglbn - 7.0 and Plts 26)
Her hair is an absolute riot at this point. When it starts to fall out it tends to dry out and stand up a lot....and this time we actually have hair to stand up! It is the worst case of bed head I've ever seen -- of course making us laugh. It's dropping quickly and I suspect will be all but gone by next weekend. It's a good thing she looks good bald. Very annoyed we just bought a brush for her on Wednesday -- well at least it will come in handy when it grows back in.
Halloween is somewhat defunct for us as she is in isolation and can't participate in anything at the hospital. Good news is out of all the things I forgot to pack last night -- the Tinkerbelle outfit was not one of them! So, we'll snap some pics this afternoon and get them posted for all to enjoy. We are bummed she is going to miss out on the Trick or Treating cause I think she would have really loved that. Jersey has also lucked out as I am not home to put on her tutu and wings for the kids tonight.
We are doing fine...plenty of food -- as Nana is baking our dinners at the house and bringing them up for us to enjoy. I will say the bed here at CMH is much more comfortable than the couch/benches at St Jude...even if I have to share it with Jeremy.
Avery is content to play with the toy microwave I found in the play room and pretend to eat the fake food. She also finds watching the pigeons on the ledge highly amusing, even if they are sitting among their own feces and a dead buddy. Ugh. Once again, no mat to play on - but making due with the bench.
Jenn & Jeremy
She had a fever last night when we came in of 101 degrees and they gave her tylenol -- that lasted for a couple of hours and it slowly crept up again. She had a rough night as we suspect her tummy was giving her troubles. She spent a good majority of the night whining to herself and waking up, only to be consoled by daddy--- standing up.... he he he. She wanted nothing to do with me but of course wouldn't let daddy sit down in the chair either - figured that makes up for not wanting mommy. None of us got much sleep and 7 am came way too fast. She has had a low grade fever this am but seems to now have gotten rid of it for now.
Nothing has come back in the cultures yet so more of the same. Dr's say they don't expect much to show up and plan to finish antibiotics and kick us out after 48 hours of negative cultures. The good news is that her Hemoglobin and Platelets dropped dramatically and she was in need of transfusions last night so they got her all hooked up. (hmglbn - 7.0 and Plts 26)
Her hair is an absolute riot at this point. When it starts to fall out it tends to dry out and stand up a lot....and this time we actually have hair to stand up! It is the worst case of bed head I've ever seen -- of course making us laugh. It's dropping quickly and I suspect will be all but gone by next weekend. It's a good thing she looks good bald. Very annoyed we just bought a brush for her on Wednesday -- well at least it will come in handy when it grows back in.
Halloween is somewhat defunct for us as she is in isolation and can't participate in anything at the hospital. Good news is out of all the things I forgot to pack last night -- the Tinkerbelle outfit was not one of them! So, we'll snap some pics this afternoon and get them posted for all to enjoy. We are bummed she is going to miss out on the Trick or Treating cause I think she would have really loved that. Jersey has also lucked out as I am not home to put on her tutu and wings for the kids tonight.
We are doing fine...plenty of food -- as Nana is baking our dinners at the house and bringing them up for us to enjoy. I will say the bed here at CMH is much more comfortable than the couch/benches at St Jude...even if I have to share it with Jeremy.
Avery is content to play with the toy microwave I found in the play room and pretend to eat the fake food. She also finds watching the pigeons on the ledge highly amusing, even if they are sitting among their own feces and a dead buddy. Ugh. Once again, no mat to play on - but making due with the bench.
Jenn & Jeremy
Tuesday, October 26, 2010
Fever and Neutrapenia
Avery started running a fever Sunday night around 8 pm. The rule at CMH is that 101.5 is considered a fever and requires a call to the Nurse on Call. So naturally at 101 degrees we called....The nurse told us to come in so at 10 pm on Sunday night we were on our way to the ER with a possible admission in our sights. After being seen in the ER and after taking a chest X-ray they decided to admit us. At 2 am we finally had a bed upstairs. After getting her settled and trying to go to sleep, (at 4am) I watched her toss and turn and start to shake. We grabbed the nurse who confirmed that she had spiked another fever - this time 103 degrees and in came the cavalry again. After another hour and a half of antibiotics, tylenol, and a lot of rocking with daddy we finally got her calmed down enough to go to sleep. 5:30 am.
Cultures have been negative so far and the chest x-ray was clear. They can hear some faint crackling in her chest and today her nose began to run. They are treating her for pneumonia although she hasn't technically been diagnosed. She has 2 antibiotics running now and the plan is to stay another night before being discharged tomorrow on oral antibiotics. You all know where this road leads....C Diff -- so I assume next week when we come back in for her next round of Chemo we will be in Isolation again - our favorite. We are in isolation right now since we were at another hospital recently and they can't test her for VRE. Erring on the side of caution - we are in isolation, of course.
She was feeling much better yesterday after waking up at 9 am and then again today. They can't quite pinpoint the cause for the fever at this stage, so they just treat her with antibiotics. Her counts are still at 0 and last night they transfused her platelets as they were getting rather low. Hopefully we are working our way up now and the next few days will raise her counts. All in all she has been having some fun as Nana & GJ are here, as well as Aunt Aubrie.
Jeremy and I are hanging in there...sleeping on the little bench like before, proves that we are indeed too old. But we manage. Thanks for the continued support everyone....once again Avery is such a fighter, small bump in a long road, but one that she handled with grace and ease.
Jenn
Cultures have been negative so far and the chest x-ray was clear. They can hear some faint crackling in her chest and today her nose began to run. They are treating her for pneumonia although she hasn't technically been diagnosed. She has 2 antibiotics running now and the plan is to stay another night before being discharged tomorrow on oral antibiotics. You all know where this road leads....C Diff -- so I assume next week when we come back in for her next round of Chemo we will be in Isolation again - our favorite. We are in isolation right now since we were at another hospital recently and they can't test her for VRE. Erring on the side of caution - we are in isolation, of course.
She was feeling much better yesterday after waking up at 9 am and then again today. They can't quite pinpoint the cause for the fever at this stage, so they just treat her with antibiotics. Her counts are still at 0 and last night they transfused her platelets as they were getting rather low. Hopefully we are working our way up now and the next few days will raise her counts. All in all she has been having some fun as Nana & GJ are here, as well as Aunt Aubrie.
Jeremy and I are hanging in there...sleeping on the little bench like before, proves that we are indeed too old. But we manage. Thanks for the continued support everyone....once again Avery is such a fighter, small bump in a long road, but one that she handled with grace and ease.
Jenn
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