Sunday 2 February 2014

Getting better. Days 4&5

Saturday she threw up and her counts were still at 10 and still getting fever until it finally stopped during the day.  She started having lots of pain and neuropathy, she was constantly crying and screaming about it.  Once they got her some meds for it she was much better and back to normal.  She was with her Dad, as we switched out Fri afternoon.  They enjoyed some time together watching tv curled up on the bed.  Too bad nobody was there to get a pic of that.  She took a long nap and then got up around 5 and then skyped with me and her siblings around 6.  She loved that and didn't want us to hang up.  She got sad and started crying.  But then afterwards skyped grandma and then went back to tv.  Her NG tube got clogged and they had to replace it, but he nurse put a bigger size in and it makes it hut worse going in and is more uncomfortable, ugh.  She didnt want to go to sleep, and was up till like 2.  She didn't let Erick get good sleep either.

This morning her counts were finally going up.  Her fever has stayed away.  It looks like she may be able to go home tmrw.  She did have low hematocrit however, and had to get a blood transfusion.  That is something new to us.  Daddy was going to go home so we could switch agin, put Taylor wanted him to stay so he did.  Praying she is doing great tmrw so she can get back to her family.

Friday 31 January 2014

Day 2 & 3

Her counts went up a bit yesterday, to 50, and her platelets came up to over 100 after the transfusion.  Her fever still keeps coming back and the viral swab came back positive for Corona virus, which is like a cold so that is probably what is causing all this along side the chemo.

The hospital staff surprised her with a bunch of bday presents and a sign for her door.  It was really neat.  Our children's director from church came by to see her as well.  That was really nice.  She brought balloons but due to other kids' allergies they had to stay at the front.  Her grandma and Nana and Papa all called to talk to her as well.

She took a really long nap yesterday and didn't eat pretty much all day.  She had some Kit Kat after lunch time and then at dinner wanted some mac n cheese and cake.  What should have arrived in 45 min, 1.5 hours later (after closing of the cafeteria) still not here and they called up and apologized like crazy that the order was over looked.  Then they said they were out of mac n cheese.  She didn't want anything else and it was her bday so the lady said she would make it happen.  About 15 min later her food was here!  She didn't even eat half of it but at least she ate some.

This morning she was up early again.  She still has fever and her counts are back down, now to 10.  So I am sure it will be at least another couple days.  Her counts need to be progressing upwards consistently and fever gone for 24 hrs.  She was getting pretty tired around lunch time when I was about to leave and Daddy came.  Then, she seemed to become more alert withall the movement around the room.

Thursday 30 January 2014

Hospital visit 2014

I know it has been forever and I am sorry for that.  Things got much better and I was tired and busy with life and other stresses.  After her last visit the Docs decided to lower her chemo doses to 75% because they say she shouldn't be getting sick all the time like this on this treatment.   Once they did that, she has been doing great.  She got a fever once in like Oct I think but it was nothing but a quick ER visit for antibiotic.

She has had good visits and only had to miss getting chemo a time or two due to low counts.  Her weight has gone up to over 31 lbs, which is amazing!  She has been having fun and playing and being herself.  Her hair has been growing and is pretty full now.

Her tumor has been shrinking over the year, it is about 2/3 the size as it was when we started!!  So that is great news!  Hopefully that keeps up and it goes away and stays away.

This past week she has not been eating all that well.  Yesterday she weighed in at only 30 lbs 11 oz, s down a bit and her counts were too low for all her chemo, only 160, very neutropenic.  So they just gave her the Vincristine.  Her platelets have been low since last week as well but were ok enough, 55, not to do anything.  Then, last night she got a fever around 5pm, 102.2 so we had to automatically go up to the ER and be admitted.  We finally got a room in the hospital around 10pm.  They gave her antibiotic and did viral swab in the ER and a chest xray as well since they thought they heard crackling in her chest, but it came back fine.  Her fever went down all by itself while in the ER.  When they took her blood, her counts were even lower, 40.  Over night they gave her a platelet transfusion since those had now dropped below an acceptable level, 33.  They also gave her the injection to get her counts back up since they are almost as low as they can get.  Hopefully they go up fast and fever goes away and stays away and we can get out of here fast.  She had been asking for some food since we go to the ER but she wasn't allowed to eat until she got to her room because she is on precautions.  Once we got up here she asked for cereal and had some fruit loops.  I was happy to see her eating.

Her fever came back over night, 100.9 so they gave her tylenol.  She woke up early around 5:30 this morning not able to sleep anymore.  So I let her start watching tv.  Today is her 5th bday!

Happy birthday Taylor!

She is doing well.  We have to wait for counts to go up, fever to stay gone, and make sure culture is negative.  So prolly a couple days till release.

Monday 19 August 2013

Admission #6 and after

Taylor did really well for almost a couple weeks.  She left the hospital on the 4th with counts in the 600's.  She got her counts checked by home health while she was home.  On Fri the 9th her NG tube got clogged up and we had to take it out.  We tried to get it replaced on Mon through home health but they had the wrong size tube (they also didnt have the needle to access her port so they had to poke her arm to get her counts, that was not fun).  She went ahead and put it in, which was not fun either since it was bigger than usual, but that night we found it not working (all that trauma for nothing).  Her counts came back that day in the 200's so we have to keep an eye on her and keep her away from people.  The next day we pulled out the NG tube and found there was a kink in the bottom of the tube.  So she went without feedings for quite a while.

Then, Thurs the 15th she got a fever around lunch time, right before home health was scheduled to come.  She was at 101.3 and since she had low counts, we had to being her right to the clinic and they ended up admitting her that day.  Her weight was down a bit and we don't like that. They gave her antibiotics, replaced her NG tube and watched her fever.  The fever went away that day and never came back.  They gave her some more of the injections for WBC growth since she will be having chemo this week and they sent her back home Sat afternoon with her counts up over 2000.  We were glad it was a short trip, but it is still crazy that a fever warrants a 2 day hospital stay.  Since being home she has done really well.  Her feedings are going well and she is even eating some here and there.  She has even gone on the potty a few times :)  She is sleeping well and playing and being her normal self.

Home health just came today so we are waiting to get those results to see if they are still up and good.

Sunday 4 August 2013

Admission #5 continued

The rest of Sat went great!  She felt good all day.  She had no fever all day!  We played some games, walked around, and watched tv.  She even went on the potty once!  Woot!  The hubs spent the day cleaning the house, score!  A friend offered to bring them all dinner and that was so nice!  Taylor didnt eat breakfast or lunch.  She ordered lots of food at lunch time but they had set up a day feed 11-2 (which went well) so when it got here, she wasn't hungry.  She didn't touch one single thing.  Around snack time she decided to eat the cheetos with ranch dressing and drink some apple juice.  Not a lot but it was something.  Then she took a really long nap.  I worked on planning homeschool stuff during the day, this was much needed as we only have one week till school starts and I have barely even thought about it.  It felt good and gets rid of some stress.  Taylor woke up fussy but then was back to happy.   They stopped her Dapto and changed to a different antibiotic.  I am not sure how long she will be on that one and the other new one they started thursday.  So today she had 4 different antibiotics, that is nuts!

My nephew was getting baptized this day, so my Mom skyped us in on the service.  The kids at home with Dad did too.  It was really hard to see, but we are excited for him.  We wish we could have been there!  We ordered dinner and she nibbled on it consistently.  Then I set her up with a movie while I went jogging.  Last time I was stuck up here I missed all my exercising and didn't always get to eat well and I didn't want to get that far off track again.  Again, it helps release stress and I need to take care of myself :)

She slept good all night and even slept in a bit.  The nurse and I woke her up around 8am.  I checked her counts and they are down to 560 and her platelets are down to 64.  When I saw this I got worried that maybe they would say we had to stay.  I really want to go home.  The docs came and did rounds around 9am and it was good news!  We get to go home!  Thank you Jesus!   They are taking her off her antibiotics.  They are still waiting on a couple labs but the result won't matter because they are for viruses and they can't treat them.  They also are going to set up home health to come check her blood in a few days to see how the counts are going.  She may have to come back up for a transfusion if her platelets/hemoglobin drop too much more.  So pray they don't get worse because we really don't want to be at the hospital.  She has off the next 2 weeks from chemo so hopefully we will be good for quite a while.

Saturday 3 August 2013

Admission #5

Wed the 31st, she was doing great after her last ordeal the week before... feeling awesome, playing and everything.  She had good counts when we got to clinic that day so they gave her Chemo for the day.  She got her port meds when we got home and then had a nice day.  That evening she started getting a bit warm, 100.  She had a good night and tolerated her feed.  The next day, she woke up with 100.3  An hour later she was 101.5  and then 45 min later she was 102.2, so I had to call the docs.  They said to bring her to clinic.  Dad took her and she was 103.3 when they got there, had good counts 3940 but they think she has a virus and she is being admitted.

They got her admitted and the ID docs came in to check her out.  They did not seem to find any signs of anything else on her body to help them diagnose her.  So we have to wait on the virus tests and blood culture to get any more info.  That evening they took her for a chest xray just to make sure all was well there.  She isn't really coughing much at all but they want to check anyway.  Laying in the hospital, she was so cold, wrapped up in tons of blankets.  She played a little bit while she was in the clinic but was really tired the rest of the day.  I got to go visit her that night since my mom was still visiting us.  Taylor had been asking for me again.  When I got there she was watching tv all curled up in a ball on the bed.  She was really tired.  She had eaten some dinner but not too much.  She didn't talk to me much at all.  After a bit, the night nurse came in and intro herself and got the nasal swab to check for viruses.  Poor Taylor hates getting that thing done.  So now we keep waiting.

Friday was really crazy stressful for lots of reasons, all kinds of stresses in our family.  They decided to try a day feed to see if that would help her get the amount of nutrition she needs.  She threw up while on it though.  We don't think she is doing well tolerating such high speed feedings for some reason.  So it is up in the air what will happen with all that.  That evening the hubby had to come home to de-stress and then I went up to take my turn.  He says he just can't take the stress anymore and needs to stay away from the hospital.  I had a friend come up a little while later because I just needed a friend and some girl time and to talk and such.  It was nice.  Taylor spiked to 104 this day and at 10pm was 102 again.  She still shows no other signs of anything and counts are still really good.  Her virus panel came back all negative so that is good!  They were able to take her off precautions so people no longer have to come into her room in gowns and such.  They still want to try a couple more things to see why the fever.  They are also going to continue the dapto (antibiotic) just as precaution and she started a new antibiotic when she was admitted.  They want to make sure to cover all bases.  She still has diarrhea.

Saturday morning she woke up and had no fever.  She whined when waking and wanted to go home, but once she was fully up she was doing fine.  She watched tv and talked and played games most of the morning.   At home, things seemed to be going well.  My mom had to leave a little before 10am because she had to get home for my nephews baptism later that day.  We were all supposed to be going up there for the weekend if Taylor was doing well.  We will miss seeing this awesome event.  The docs did their rounds about 10:30 am and they still think it is a virus, just not one they test for.  It is their best guess as of right now.  They are still running some more tests, like the culture and a fungal test.  They want to see the fever stay gone for 24-36 hrs (it has been 12 hours since her last one so far)  and for her counts to stay in the healthy range (which they are 1510 at this point).  Her platelets have dropped to 75, which is not cool.  If they get down to 50 she will have to have a transfusion.

If she is still here come Mon, we will need some help with the kids and meals and such.  So, if anyone would like to offer a time to do either of those, please let us know.  I just found a cool website where we can post all our needs and you can pick and sign up for when and how you want to help.  I will post the link to family and friends if we end up staying in the hospital and need it.  Thanks.  I feel your prayers and love!


Thursday 1 August 2013

Admission #4 I think

Well Taylor had to be admitted on the 18th because her counts were dropping really fast and she had a virus, the cellulitis, and come to find out- a bacteria in her blood.  Lasr I posted was that she got allergic to the antobiotic they gave her for the cellulitis.  She was admitted and the next day given something else.  Her blood culture came back positive for bacteria in her blood, so they want to make sure to get her on the right antibiotic.  It took them days to figure out what the bacteria was though (cultures take forever to grow and show info).  She was at the hospital with Daddy and just kept being whinney and crying for mommy.  She did not feel good and slept a lot and watched a lot of tv.  We got to skype here and there which helped.  She really just wanted to go home.  She would start feeling better after the antibiotic and start playing some and nibbling on food.  Then she would get tired again.  She did not eat much at all the entire stay there.  She threw up her NG tube the first night in the hospital and they left it out since she was coughing so much.

On the 19th they took her for a chest xray just to make sure her lungs were ok from the virus and everything.  All was good on that front.  On the 20th her counts were still dropping and her platelets were dropping some too.  That day I got to switch and go up to be with her.  She got to see her baby sister for a bit too, which made her happy.  She misses her.  She is still sleepy and not active and still having fever.  She is coughing extremely bad and has lots of diarrhea.  Her bottom is very sore and needs special treatment to help it heal.  On the 21st she had a negative culture for 2 days in a row.  That was good news, and finally found out that it was Alpha Strep bacteria.  But we did not know if they antibiotic was affective for it or not yet.  She still had the virus and high fever and everything else.  Her leg was much better and pretty much all healed.  On Monday the 22nd her counts were down to 260.  This thing was not going away.  We were tired and stressed and ready for this to be over.  Life was very hectic.  They began her on some meds to help stimulate her WBC production, called G-CSF.  She was still having all the same problems.  Now it was time for Daddy to switch with me again.  I drove home and then he drove up.  We were hoping it would only be a couple more days, but ended up being the rest of the week.

On the 23rd her counts were down to 140 but she had finally been fever free for 24 hrs!!!  About time!  On the 24th her counts were up to 190 but docs were really worried about her not eating.  She has had her NG tube out the whole stay and has not gotten her feedings and is not really eating.   They wanted to get that tube back in and see how she does with feedings, so she got it that night.  This day they replaced her needle in her port since it had been a while and it was getting loose.  They decided to stop the G-CSF since she was going up so they could see how she did.   But the next day her counts were down to 100!  So they started her back on the G-CSF.  They want to watch her and make sure she stays up and then she can go home if things look well.  Finally, on Friday the 26th she was up to 260 and tolerating feeds and they said she could go home.  The kids and I went up for a visit that morning to see her and so I could talk to the nurses about what we need to do at home.  They taught us how to give herr injections and her port IV meds at home and within a few hours she was home!  Whew, what a long crazy adventure!  A bit of stress relief automatically came.  By this time we were completely exhausted and stressed and tired and whatever.  I had begged my mom the day before to come down to be with us to give us some help and a break.  She was able to come Fri night and we were so happy.

First night home she threw up a couple hours into feed.  So we had to slow it way down and slowly increase over the next couple days.  She did well.  Saturday was my bday and I was so happy to have my whole family home with me!  The nurse came on Sun to take her counts and they were great, up to 4390!  Things were going well.  We were able to stop the injections.  She was still on her port meds, which I was able to do well.   The next day we realized her tape was coming off her port access.  So we told the nurses and they said it was a problem and it needed to be sealed and by a trained person.  So we called home health but didn't hear back till that evening when I called again.  She said that the retaping I did was fine for now and she would come in the morning.  Mon night she also threw up a couple hours into her feed.  So we cleaned her up and set it back up at a little lower pace, she did fine the rest of the night.  So, Tues the nurse came and looked at the port and said she would just retape it as well and that we should just take it off after her meds that day and it could heal until she got her new one that was due in the morning at clinic.  So, we did that and it worked out well.  I think I have accrued enough nursing hours over these past 6 months, lol.  Wed she was great she was active at clinic and the nurses were happy to see her back to herself.  She got to go outside and play and we had a nice day.