staying in ICU one more day

Chris is doing much better but they want to keep him in ICU another day just in case he needs another transfusion tomorrow since they don't know if that is the cause of his allergic reaction.

I will post another update later when I get his blood draw results from today.

looking better

When I visited Chris this evening he was looking much better!  He even ate a full dinner too!

The nurses and oncologist on call that visited while I was there said that maybe he'll be able to go back to a regular floor and get out of the ICU tomorrow, that would be good!

They still aren't sure exactly what caused the allergic reaction but are surmising it may have something to do with the platelets so next time he gets transfusions they are going to have it come from a single donor as a precaution.

The hematoma went away and a Dr. was able to access his port using fluoroscopy, so no more multiple IV's in his right arm!  

Here are the results of his CBC today while in ICU:

His WBC, platelets and neutrophils are still pretty low but his hemoglobin is much better so he won't have to get any more blood transfusions for now.

transferred to ICU

I'm just going to do this post in a timeline format starting with last night.

I left the hospital at about 11:30 last night.  He had finished his 3 unit of blood and was on antibiotics.  The charge nurse attempted to access his powerport and it looked promising.  After I got home Chris texted and let me know they were able to finally use his powerport to get/give blood and antibiotics.  I spoke with his nurse before I went to sleep and because his hemoglobin was still low he was going to get 2 more units of blood.

When I woke up this morning Chris had texted me a picture of him with blood all over his shirt.  Apparently at about 3 a.m. the powerport starting bleeding due to a hematoma so they had to take the needle out and stop using it.  

I got here at about 9 this morning and noticed that he had very puffy eyes and he was having problems breathing thru his nose and was coughing up lots of phlegm as well as blowing it out of his nose.

I called his nurse and she checked him over and took some vitals.  He first got 2 IV doses of benadryl but that didn't seem to help and we noticed he was developing hives over most of his body he was given doses of steroids and an oxygen mask.

The floor doctor, Dr. Anderson, came in to see him and after his hives didn't go away 30 minutes later the decision was made to transfer him to ICU where he can get more attention since the nurses there have less patients. 

He will be getting regular doses of steroids and he also received an epinephrine shot.  

In the middle of writing this he was moved to his room in ICU.  I am now at home since he needs to get some sleep.  

He has another unit of blood to get but first they are going to do some tests to get rid of the hematoma.  He was already looking much better when he got down to ICU.  His eyes were much less puffy and the hives are almost all gone.  They don't know the origin of his allergic reaction since it did not occur immediately following any medication.  Figuring some of this out will take some time.  

I will update more later when I am able to go see him during visiting hours and he has had a chance to rest.  They ask that visitors turn off their phones before going into the ICU area.  

visitors info

I forgot to mention information for anyone who may want to visit Chris during this hospital stay.

He probably won't be up to visitors today, maybe tomorrow.

The precautions for visitors to take are as follows:

- no visitors that are sick or have been exposed to someone that is sick (for instance if either of our roommates get sick I can't come visit Chris)

- no children

- everyone must wear a mask before entering his room and wash hands before entering and leaving his room

(there is a hand sanitizer on the wall to the left of his room door and masks available on the wall to the right)

- no fresh fruit or veggies

- no flowers or plants

There is a sign on his door stating this info and asking all visitors first check in at the nurses station.

Chris has also had a pretty bad headache since before we came to the ER and so far none of the meds (vicodin & morphine) are giving him much relief.  When he was neutropenic in the past he also suffered from pretty bad headaches.

scans, transfusions, and antibiotics oh my!

I may be a bit slap-happy with my odd hours of sleep since last night so bear with me.

He is now situated in room 366, it's large and agreeable so far.  His nurse is still getting all the info on him so there will probably be some activity in and out for awhile.

He has had 2 units of blood transfused so far, one more to go.  He also will be getting platelets.  

They did a head CT on him earlier today to make sure there is no internal bleeding, a concern since his platelets are so low.

Two nurses in the ER last night tried to access his powerport with 3 different needles but were unable to.  The powerport was what he had inserted on the 18th.  It is a way for them to be able to give him chemo, antibiotics, etc without having to continually hook him up to IV's.  For whatever reason they can't access it so he's had an IV in his arm.  Around 3 a.m. they attempted to get another IV going in his right arm (he can't have any IV's in his left arm due to his brain injury) but after trying 3 different sites they couldn't do that either.  A few hours ago they were able to access another vein in his right arm so he has two IV's there now.  At some point today they are supposed to attempt to figure out how to access the powerport so he doesn't have to have all these IV's in his arm which make sleeping very difficult.  

He is napping right now.

I don't know how long he will be in the hospital, I am guessing at least a week.  If you look at the past entries on here to August 26th to September 2nd that is the time when he was neutropenic from this same round of chemo before.  This is called the "B" round of his hyper-cvad chemo regimen and is typically the toughest on his body due to the high doses of methotrexate.

His oncologist, Dr. Kampe, came in to see him this morning and said that his low counts are obviously a concern but it also indicates that the chemo drugs are working.

So in addition to the blood and platelets he is getting IV antibiotics, continuing his home meds, and a shot to help boost the production of white blood cells.  

He will be getting blood draws daily to check his counts which I will update on here as I get them.

Chris admitted to hospital for pancytopenia

I took Chris to the ER at about 11 p.m. last night for a fever of 101.3.  He had been feeling pretty terrible all day.  

The staff in the ER moved pretty quickly and the dr. ordered CT scan of his belly, chest xray, blood counts, and urine test.  At about 1:30 a.m. they told him his blood counts and that he would be admitted and need blood transfused.  There are no beds available on 2 central so he is sleeping in an ER room tonight.  

Here are his counts:

Obviously his counts are all very low.  He is also on antibiotics in addition to the blood to get his platelets and counts back up.  His condition is called "pancytopenia" and is basically neutropenia with also having low platelet and hemoglobin levels.  This is the lowest his platelets and hemoglobin have ever been.  Unfortunately this is what the chemo drug, methotrexate, does to his system.  The very first time he had neutropenia was after this type of chemo and it's not altogether surprising.  The B cycle of his chemo regimen, the high dose methotrexate, is the toughest on his system.  

I'm going to get some sleep and head back tomorrow, I will post more updates as more information is available.  

feeling good

We had a wonderful few days at Chris' parents house for the holidays.  Lots of good time with Magnus and Mary took some pictures for the holiday card so this time we will all be in the photo!  

Chris has been feeling really good lately, the best actually that I have ever seen him after he's had chemo.  I realized the other day that this is the first round that he hasn't had 2 doses of chemo in his spine, so perhaps that can account for part of him feeling so much better than normal.  He has bouts of nausea but his meds are helping keep it at bay.  

lab today and shot

Chris had a blood draw today to check his counts.  He got a shot to support the production of white blood cells.  The shot is called Pegfilgrastim and is longer lasting than the daily shots he had to get in Kansas.  So he won't have to go to the cancer center nearly everyday in between treatments!
We will go in next Wednesday to have his counts checked as well.  He has his next Dr. appointment on the 6th.
As long as Chris feels up to it we will be heading to his parents house today for Thanksgiving.  I'm really looking forward to being with his parents and Magnus for the holiday!

Chris home from round 4

Chris got home a bit ago from the hospital!  His Dr. came to see him at 5:30 this morning and said his counts today are excellent and that he has done well with this round.  (I asked for a copy of his counts but they didn't have the ability to print them out for me at the nurses station so I will get a copy from his doctor.  However his nurse did tell us his WBC was over 8, very high for him!!)  Chris will have his blood counts checked Wednesday and we will meet with his doctor as well.

Chris is back on all the anti-fungal, antibiotics, and anti-mouth sore meds as well.  He had a dose of IV Zofran (nausea medication) right before he left today.

I went over all the infection precautions with his nurse and she recommended he wear a mask when he is in public.  If Chris feels well enough we plan to go to his parents for Thanksgiving.  He will need to wear a mask when we are there since Magnus, like all kids, are germ donkeys.  Perhaps we will draw a festive mustache on it, ha!

I fed him and he will probably go to sleep soon since he didn't get much sleep last night at the hospital.  

He will be at risk for neutropenia about a week from now, when the main chemo drug he was given (methotrexate) reaches it's "nadir".    

Click here to a link for more information about nadir and chemotherapy.

I'm glad he is home from the hospital!  We are starting to get used to all our new surroundings.  I finally went grocery shopping for the first here time this morning.  

Chris might come home tomorrow

The Dr. doing rounds yesterday told Chris he may get to come home tomorrow!  His oncologist will be there tomorrow to let us know for sure.  

To prepare I removed the plant from our room, sanitized the surfaces in the house, and washed the bedding.  I also got an air purifier for extra filtering clean fun since we are living in a new place and our roommates have a dog.  One of Chris' nurses also recommended that we dry our hands with paper towels at home instead of using a towel that every one uses.  

Chris felt pretty terrible from the chemo yesterday and vomited about 10 times over a span of  4 hours.  His nurse contacted the Dr. and they changed up his nausea medications to more frequent and higher doses.  He felt much better today!  

He has had visitors everyday since he's been in and various friends have also brought him food.  The hospital food there isn't that great and he can't order any food after 7 p.m.  It's so great to have family and friends around!!  

better days

It's Saturday morning and Chris really likes the nurse he has today.  She is a chemo nurse.  The way it works is that if a chemo nurse is on duty they get assigned to Chris.  If a chemo nurse is not on duty he gets a regular nurse who has no knowledge of chemo drugs.  

It's very different than what we are used to but we're adjusting.  The chemo nurses he has had so far have been very competent.  The first chemo nurse he had Thursday night, Sarah, was absolutely wonderful.  She works chemo patients on this floor and is also a nurse manager for the floor above us. 

Barbara is Chris' chemo nurse today and I have not met her yet but Chris said she is awesome too.  She used to work at a very well known cancer center in Houston called MD Anderson.  

We are slowly but surely getting into the swing of things here and it's been good to have more friends and family around to visit Chris and remind me that I can ask them for help.  

I'm not very good at asking people for help but I'm trying to learn.  

Thanks everyone for your support!

Round 4 of chemo starting tonight

Chris' doctor came by earlier and so did Chris' chemo nurse.  He'll be starting chemo up in the next hour or so, they just started his anti-nausea meds.  He'll have chemo until Sunday night or later depending upon how things go.  He will get out by Wednesday at the latest, hopefully.

There was some confusion with his orders for having his home meds continued, like his pain meds, so it took way too long to get him pain meds.  He is really sore from his surgery.

I contacted his oncologists nurse and cleared up the home meds confusion but it still took forever for his nurse or the pharmacy to get the meds ordered.  

It's nearing shift change so hopefully his next nurse won't be so busy.  

He's eating dinner and not too long ago some of his friends(Mel, Rhiannon, & Paul) came to visit, it's good to be where he has people visit.  Our awesome friend Sandra was the only one who came to see him when we lived in Wichita.  

We're slowly getting used to things here and we'll have plenty of time to do so.  

resting in his room

Chris got to his room about an hour ago and I have his stuff all set up for him.  He's a bit disoriented from the surgery but doing fine.  

He is in room 264 and it's in a general wing of sorts.  Since the South Austin Medical Center is a smaller hospital there is no oncology wing.  He has a nurse but she is not a chemo nurse, we have to wait to see her until maybe 5 p.m. or so.  

It's a new hospital and new staff and new things to get used to and figure out.  All the rooms on this wing are private rooms tho so that's nice!  

There is no online card service for this network of hospitals tho.  

We don't know if he will start chemo tonight or tomorrow.  They are understaffed on this floor today so things seem a bit busy.  

Right now we are really missing the nurses on 7SW!

out of surgery

He got out of surgery at 11 and I spoke with his surgeon.  He said it was a bit tough getting it in but it went well and Chris talked to them about food and his favorite restaurants during the surgery.

He is in a recovery room now and then should be going up to oncology from there.  Hopefully I get to see him soon!

CBC looks good, he is in surgery now

Chris was taken to surgery at about 9:45 this morning.

They said it should take about an hour to insert the portacath but I'm guessing it will be longer because they had problems trying to get into his veins when he had his Hickman put in.  It will be nice with a portacath because he won't have to bandage up and clean the site every time he showers.

After surgery they'll take him to a recovery room and then up to oncology.  We don't know yet if he will start chemo today or tomorrow.  He will be here I am guessing at least 5 days.

Since it's a new hospital and staff we just have to wait and see how they do things here.

He had his blood drawn yesterday and his counts are the best they have been since early August.

(click image to view it larger)

Here is a photo of him before surgery:

I will update more later.

surgery and round 4

Chris will be getting some blood work done tomorrow to make sure his levels are ok for surgery on Thursday morning.  He'll get the portacath put in and then also start round 4 that same day.  

Since we'll be at the hospital anyway for his registration and blood work tomorrow we will see about taking a tour of the oncology department to see what it looks like.

New nurses to get used to and back to the chemo grind very soon!  We hope the nurses at his new hospital are as good as the ones he had in Wichita!

consultation w/surgeon went fine

We met with the surgeon Chris' oncologist referred us to.  He talked to us about the procedure to have a portacath inserted and the risks involved (same risks as with the Hickman Chris had).  His scheduler should call us tomorrow and let us know when Chris will be going in to have it placed, I imagine it will be Wednesday or Thursday.
We don't know yet when Chris will start his 4th round, maybe the same day his portacath is placed or later depending upon when the hospital has a place for him.  The surgeon's office is one floor up from his oncologists office and we stopped by the oncologists after his appointment today to ask the nurse a question.  A woman in the waiting room heard that Dr. Kampe is Chris' oncologist and she said he is the best doctor she's ever had and she's been going to him for 13 years.  So we continue to hear nothing but wonderful things about Dr. Kampe! 
I'll post something as soon as we know any of this info. 

first Dr.'s appt went well!

First off the South Austin Cancer Center is a much newer facility than the one we went to in Kansas.  We waited a mere 10 minutes before we saw his Dr. and there was also a sign at the front desk that read "please let us know if you have been waiting 15 minutes past your scheduled time".  The office we saw the Dr. in was very spacious and displayed his many medical certificates and degrees.  

This is compared to waiting up to 2 hours to see his previous Dr. and the office being about a third of the size of the one we were in today.

His new Dr., Dr. Kampe, talked to us for at least an hour - he's great!  He went over all the previous information and had extensive notes from reading Chris' medical file that had been faxed over.  He answered all of our questions and was extremely personable and helpful.  

The plan is for Chris to consult with a surgeon on Monday to get a portacath put in, which is how they give him chemo.  He previously had a Hickman but that was taken out nearly a month ago because they thought it might be a source of infection.  He will probably start his 4th round of chemo by Monday the 22nd.

We've had a long break from chemo treatments and it will be rough getting back in the groove so to speak. His facial and head hair has grown back and that will all fall out again.  

It has been so wonderful to spend this time with Magnus and we will probably stay with his parents until he has to go into the hospital for his next round so we can spend as much time with him as possible. 

Chris' maternal grandmother has been having some increased health problems and it is crucial for his mom to travel to El Paso to take care of things.  I'm even more glad that we are down here now so she doesn't have the added stress of being the exclusive caregiver for Magnus during this time with her mother.  

There's probably more I'm leaving out but it has been nice to have a bit of a break from using the internet lately!  

Dr.'s appt changed to Wednesday

For whatever reason his new Dr's office called today and his first appointment will be on Wednesday late morning instead of tomorrow afternoon. 
The truck with our stuff arrives tomorrow so we can get most of it into storage and our room set up before his appointment the next day.
It's been beyond wonderful to have this time with Magnus. 
Chris is looking and feeling pretty good, altho all the recent activity is starting to catch up to him. 

counts are better and scan clear!

His counts are getting better and the scan of his abdomen came back normal!  As long as his levels don't start declining again he should be clear to start round 4 after we meet with his new Dr.  

Chris will continue with the prednisone.  His Hickman was taken out a few weeks ago when he was in the hospital and it may have been the cause of his recurrent fevers, he hasn't had any fevers since.  He'll have to get another PICC or Hickman line put in before he starts chemo again.  

The move is less than 6 days away and I am so ready to see Magnus!!!