Brody out of PICU

Brody got moved back up on to the Hem-Onc floor.  This is our first step to going home.  We are hoping to get home by Thursday but it depends on getting stuff in place at home for his care.

(Early) Monday Morning

Brody had his breathing tube removed yesterday afternoon and from a respiratory standpoint has done very well-- He surprisingly didn't need any oxygen afterwards.

His Labs have all been  pretty stable-- his hemoglobin has even increased a little bit.

They weaned him off some of his sedation/pain meds and his main complaint last night was some pretty bad leg pain-- this was in his thigh (which is new)-- but is now feeling better. We suspect this is a new nerve pain- we consulted a neurologist and they agreed that the area in his spinal column where the tumor is can cause this pain.

We have had to pause some of Brody's nerve pain meds and it takes a while for it to come on board and start working again. We are still holding his oral nerve pain meds due to his recent stomach issues... he did get his patch put back on.

His blood pressure is still high (the nerve pain patch will start to help this when the meds in it start entering his system).

His NG tube was removed and they have continued to irrigate his stomach with a little bit of water every hour... it is no longer red tinged and looks to be normal looking.

We are still in the PICU-- should go upstairs later today I hope.

Brody has been up since about 4 pm yesterday right before they extubated him-- I guess he had a few days of sleep and feels rested. There is a TV & DVD player in his PICU room and he has been watching movies pretty much straight since he woke up last night

Trish and I have been alternating staying with him and sleeping. I've been sleeping about 8 pm til 2 am and Trish sleeps from about 3 am til 9 am... I also caught a nap in Brody's room yesterday while they were tapering down his sedation meds. 

Geordi came down for the weekend-- you are supposed to be 12 to come into PICU-- Geordi turns 12 in a few weeks but has been growing like a weed the last year and is now taller then Trish but still a little shorter than me-- and can easily pass for 14 or 15 years old-- so we snuck him in to visit Brody. Rich Naves flew him down here again on Friday-- Trish's dad drove him back up yesterday-- Geordi is going to his 6th grade camp in Michigan this week.

Jaden has spent the weekend at Trish's parents house and will stay there as long as Brody is in the PICU since he can't come back and see Brody.

Thats pretty much it for us...we are taking steps in the right direction the last day or so-- hoping we get out of the PICU and home soon.

As our usual-- we are living in the moment-- at this moment Brody is feeling well, is happy, watching the movie Cars 2 with his dad and in a good mood.... and when he feels well we all do.

Thanks once again to everyone that has been helping us out, following our journey and praying for Brody.

Bill

Brody's bleeding appears to be stopping

Brody's bleeding appears to be stopping!!  His hemoglobin remained steady overnight and even went up a little this morning.   He did not receive any blood overnight either.   The draining from his NG and G tubes are looking more and more clear too.   He is in the process of weaning off the breathing tube.   It is not suspected he will have problems coming off it.   Finally things are heading in a more positive direction!  

Quick update

Brody is still in the ICU and currently in stable condition.   He is still on the breathing tube until it is known for sure his gastrointestinal bleeding has stopped.   It has been left in today even though his respiratory function has been good enough to be off of it all day (and last night).   He hates the breathing tube because it's uncomfortable and he cannot talk with it in.   We will be glad to get rid of it.   Brody continued to need more blood,  plasma,  and clotting factors today.   Within hours of getting more blood,  Brody's hemoglobin drops again indicating he may still be actively bleeding.   He has been watched all day closely and it was suspected he may have needed surgery at any moment to correct the bleeding.   They didn't want to pull the breathing tube,  only to have to put it right back in for another surgery.   The ICU team here is staying on top of his pain control and continue to adjust his pain medication quickly when needed.   His pain medication doses have had to keep going up and up today.   He is not in pain as I am writing this.   Brody's belly was looking more and more distended as the day went on.   An Xray was ordered which showed air in the abdominal cavity.   It was suspected he may have had a gastrointestinal perforation because on the xray the surgeons were not convinced the air pockets they were seeing could have been from his surgeries.   They then ordered a CT scan.   The results of this showed no perforation.   At this time Brody's hemoglobin level has remained steady for the last 4 hrs too.   I am calling that some really good news!   Hopefully wherever the bleeding is coming from,  it's starting to fix itself.   Brody has been in so much pain and vomiting a lot.  Let's hope he's finally about to pull through this ordeal.  I am not sure that's the case just yet but at least I got some positive news tonight.   Thanks again everyone for prayers,  positive thoughts,  and support.  

Pic of Brody in ICU today

Brody has been through a lot since yesterday afternoon.   He is finally resting in the ICU,  not vomiting blood,  not hurting,  and sedated so he isn't bothered too much by the breathing tube.   I am relieved the bleeding appears to have stopped and to see him finally getting a break from the pain and vomiting.  

Brody is in the ICU

Yesterday,  as we are all packed up to leave Nationwide Children's and head home,  Brody started vomiting large amounts of bright red blood and huge blood clots.  He did this multiple times and so,  of course,  we did not leave the hospital.

He had a CT scan last night which showed he was having bleeding around the sight of the new G tube.   The g tube had also migrated  inward and was not snug against the wall of his stomach and was instead floating in his belly.   The GI docs repositioned the G tube and inflated the balloon of the g tube so that it was more snug against the wall.   It was hoped that this pressure would stop the bleeding.   He was also started on octreotide to restrict blood flow to the gastrointestinal tract and a Protonix drip (he has been getting ranitidine in his TPN too.   The Protonix and ranitidine are acid reducers which help protect against stomach ulcers.   TPN is his IV nutrition).   This was tried overnight and it was hoped it would be enough.   Unfortunately he kept vomiting large amounts of blood and kept requiring multiple units of blood and fluid boluses to keep him stable.   The bleeding wasn't stopping. 

He was taken for endoscopy and surgery this morning.   The endoscopy revealed the bleeding was coming from inside the g tube tract and there was also an ulcer.   The ulcer did not appear to be bleeding but clips were placed to seal it.   The surgeon reopened Brody's incision from the g tube placement and applied more stitches in and around the g tube tract.   Endoscopy after this showed the bleeding had stopped.   Yeah!!!   There were several large blood clots in his stomach.   These were broken up and suctioned out as best as they could.   There was one large clot remaining that they were unable to fully break up and was adhered to stomach possibly protecting a previous active bleeding area.   No blood was seen coming from under it.   They decided to leave it alone. 

Brody is now in the ICU under very close observation with breathing tube in place and he's sedated.   The worry is that he may start bleeding again and need to go right back in to surgery.   He has both an NG and G tube that are being flushed frequently to keep both lines open and draining.   The contents of this drainage are being watched for new bleeding and volumes are checked to be sure he is not retaining too much in his stomach and risking him vomiting again.   He is on multiple anti-nausea meds too.   So far there has not been evidence of new bleeding based on this drainage and labs,  etc.   He will remain in ICU for today.   Tomorrow morning they plan to pull the breathing tube if all continues well.   And,  he will be transferred to heme/onc then.   At which point,  we work towards getting him home again. 

It's been an emotionally and physically exhausting couple of days.   Brody has been in a tremendous amount of pain as he has been vomiting between 250 and 500ml of bright red blood and blood clots as he was already in a lot of pain recovering from the G Tube surgery on top of the pain he already has from his tumor.   There are no words to describe how horrible it has been.   Brody has been his amazing and usual extremely tough self.   I don't know how he deals with all of this.   But he does.   He is still happy between the awfulness.   He does not complain about the unfairness.  

Geordi arrived by airplane to Columbus today.  Geordi's best buddy Levi Naves happens to have a dad who is a pilot.  He flew Geordi down to us again too.   Geordi has been staying with the Naves family this week.   He has had fun going fishing and playing in a new fort in the woods behind Levi's house.   The Naves family has helped out us out many,  many times through this journey and we are so grateful to have such wonderful friends.   (We are very lucky to have so many friends and family that have helped us over and over again.   I cannot imagine how much more difficult this journey would be without that support).   Jaden has been spending the week with grandma and papaw.   They have been bringing him to visit Brody frequently too and have been doing his school work with him.   (Jaden is still doing home school).   My sister Julie and her family were able to make it to Columbus for a visit last weekend.  We are all so glad we got to spend that time together.   Our neighbor Barbie has helped out with mowing our yard while we have been away and helping take care of our pets for part of the time we have been away.   Mirissa Corthell has been staying at our house this past week,  caring for our pets and keeping them happy.    Both mine and Bill's jobs have been more than understanding and accomodating to our needs to care for Brody.   We have had many folks praying for us and sending kind words and positive thoughts.   We appreciate greatly all everyone is doing to help us through this.   We certainly feel surrounded by loving,  caring and wonderful people.  

My sleepy boy

Brody is doing well after his surgerys.   And,  LOOK,  no tubes in his nose!   NG and NJ tubes are out and he's off of the oxygen in his nose now too. 

He is very tired but hopefully will feel more energetic as his pain medication is titrated down today.  

I was very nervous last night that he might start vomiting a lot again since he no longer is on any suction for his gastric contents.   He just has the g tube to gravity drainage.  So far (knock on wood) he is doing about the same in the nausea department as he was before this change.   Nausea is still a battle but it's not worse since the switch to g tube.  

Brody's left leg is very swollen and he is having trouble moving his leg.   He had a doppler ultrasound of his leg a little while ago.  I do not know the results yet.   They were checking for a blood clot.  It is suspected it could just be due to pressure from the growing tumor and inflammation from the surgeries.   Fortunately,  his leg is not hurting him.  

We are hoping to bring him home tomorrow.   We have been approved for hospice care (along with giving Eribulin to treat the tumor).   Once we are back home on hospice, we should have more support than we had previously at home.  

Brody is having surgery to remove NJ and NG tubes and replace his nephrostomy tube

Brody is in surgery right now to remove his NG and NJ tubes and also to replace his nephrostomy tube.   The nephrostomy tube has to be changed out every 3 months.   He happened to be due for this at the same time we are dealing with other tube issues.  

The NJ and NG tubes have been causing Brody a lot of pain and irritation.   He will be glad to have these out and let his throat and nasal cavity start to recover.  

We decided against placing the J tube through the G tube today (converting the G tube to a Gj tube).    We are just too nervous placing the J tube through the G Tube will decrease the diameter of the G tube too much.   We are afraid it would prohibit sufficient drainage of the gastrointestinal secretions that accumulate in his stomach.   He has been draining about a liter a day out of his NG.   Being able to get these accumulated secretions out of his stomach is critical to preventing vomiting.  He starts vomiting once he reaches a critical volume of secretions. 

His G tube cannot be put to suction (at least not yet... it would need to be at least 4 weeks before that could be a possibility and it would be very low suction if we did it).   The tract created for the G tube needs to heal before any possibility of suctioning the G Tube.  

We are very nervous about whether the G tube with gravity drain bag will be enough.   Putting the J tube through will make it even more difficult to get enough drainage to keep Brody from vomiting. 

Brody is not able to tolerate feedings through a J tube.  The primary purpose of the J tube for him is administration of medications that we cannot do via IV.   His nutrition needs are all provided by IV.   He has one medication right now that we had been putting into his NJ tube that is critical for us to give for Brody's nerve pain relief.   It had to be given three times a day.   We have decided to  switch it to a very similar medication that only needs to be given once daily instead of three times a day.   It will be given via the G Tube and then the G Tube will be clamped for a couple hours after administration.   The medication is absorbed quickly and so it's hoped he will do okay with this instead.   Other meds we had been given through the Nj tube will be converted to IV instead.  

The interventional radiologist just let me know Brody is done and is being taken to recovery room.  

I am gonna head to that waiting room now.  

More later....

Brody's surgery went well

Brody's surgery went well.   He has his g tube placed and his stent in ureter removed.  

He will have ansthesia again tomorrow and head to interventional radiolgy to place a j tube through the g tube.  

Right now,  he still has his nj and ng (nose tubes) tubes.  They will come out tomorrow after it's verified the new gj tube (tube coming out of belly) is working well. 

Brody is looking forward to getting rid of tubes in his nose.  

His belly is pretty sore right now,  of course,  though.   The Pain Team is working to get better control of his pain.   We know he will be feeling better soon and so does he.  

He is still requiring a little bit of oxygen to help him breathe right now but we suspect he will be on just room air soon.  

Brody is in surgery for his G Tube

Brody is in surgery right now for his G Tube placement.  

He has had no fevers the past couple days and his ANC levels (immune system) are back up.  

Let's hope all goes smoothly today.  

Prayers and positive thoughts please.  

Sunday Night 11 pm...

Brody's counts have improved tremendously over the weekend....

His ANC (Absolute Nuetrophil Count) was zero on Friday morning. On Saturday morning it was up to 120.... this morning it had jumped to 4000 (yes thousand). He did one more dose of Neupogen today (this helps your counts bounce back from chemo).... His last fever was early Saturday morning.  He has felt "ok" but is still sleeping alot of the time.

Unless he takes a big step backwards his surgery should be a go tomorrow sometime.

We hope it is a simple procedure and he isn't under anestesia too long-- the longer he is under the more at risk he is to going to the PICU- so hoping that he recovers nicely and doesn't need any breathing assistance afterwards-- his Ostomy surgery back in July put him in the PICU for 2 days-- he needed a Bi-pap for most of that to keep his lungs open....so keep your fingers crossed for that.

I (Bill) drove Geordi back up to Whitehouse this afternoon for school tomorrow-- Brody enjoyed seeing his big brother and gave him a big hug when he left.

Trish's sister Julie and her Family drove up from Tennessee this weekend and Brody did enjoy seeing his cousins Ella, Ava, & Lilah,  Aunt Julie, and Uncle Jason....

We finally got a room in the Ronald McDonald house- so Jaden can stay up here.

Not alot else going on.... hoping to get out of here later this week if all goes well.

Bill

Saturday Morning- another fever

Brody has had a few episodes of vomiting-- this mainly occurs when his NG tube gets occluded-- and is not draining properly. His pain is pretty well controlled with meds-- it continues to be intermitant and not constant and he can sleep for long periods without pain meds.

He did spike another fever last night (101.8) so they gave him some more tylenol and drew blood cultures again to check for infection-- they have continued to be negative but can take a few days to get results

At rounds this morning, our oncologist told me that he has spoken to our surgeon and the surgeon's main concern (whether to do the surgery) is Brody's immune system-- Brody's ANC (this represents his immunes system) was zero yesterday (can't get lower than that)-- he did start Neupogen injections (a daily injection) yesterday and his ANC is now back up to 120 so is heading in the right direction.

The plan now is to monitor this and if it continues to rise we are looking at possibly having surgery on Monday as long as everything else stays the same. The Neupogen can raise ANC rapidly and does have a delayed effect somewhat so we are hoping his immune system does respond rapidly...

Geordi has been staying at our friends Rich and Rachel (their son Levi is a good friend our our boys) and Rich is a pilot and flew Geordi down in a plane yesterday afternoon-- I picked them up from the airport and they did visit with Brody briefly but had to fly back real soon... Brody made a point of telling us to wake him up when Levi gets here-- Brody was a little bummed Levi had to leave so soon though.... many thanks for flying Geordi down.

We are still on waiting list for the Ronald Mcdonald house-- the hospital was able to arrange a room at the Holiday in nearby at a greatly reduced rate-- Trish took Geordi and Jaden their last night and I stayed overnight with Brody--

Thats pretty much it with us.... thanks to everyone who has helped us out and given us your thoughts and prayers....

Bill

Brody and a giraffe

Brody feeding giraffe last Sunday

Brody has an ANC of zero now... probably no surgery tomorrow

Brody's ANC is now zero.  (Basically this means he does not have a functional immune system right now). Thankfully his blood and urine cultures remain negative.  

It is unlikely he will be able to have surgery tomorrow.   He wouldn't be capable of fighting any infection after a surgery.  

Brody is being started on Bactrim IV again in addition to his other antibiotics to help protect against development of pneumonia.   He will also start Neupogen to help kick his ANC back up.  

Thursday 9/18/14

Sorry for the lack of updates-- been very busy-- this post will be fairly brief but will get everyone up to date on his condition.

Brody has for the most part until recently been feeling ok-- he is still not able to eat and gets all his nutrition via IV TPN... He has felt not great but not horrible either-- his pain is intermittent but is controlled by pain meds and he still sleeps well at night He typically sleeps 12 to 14 hours a day (usually 12 hours and a 2 hour nap). We have of course remained quite busy with his care, work, housework, home school, appointments, etc...

Last week Brody started a new Chemo (Eribulin) which Trish mentioned in a previous post that we were considering. We went ahead and decided to try this new Chemo and it was administered last Wednesday. He was carefully monitored for a few hours as they do with any new chemo drug when a kid is first exposed and he tolerated it fine.

On Friday though Brody developed a fever again. We took him in for blood cultures, they administered a broad antibiotic, took urine cultures, etc... we got the first dose at Toledo hospital and had followup doses delievered to the house where we administered via his port after his TPN finishes. His blood cultures were negative but his urine out his Nephrostomy bag was positive for some type of staph bacteria (I don't know which strain) that should be covered by his antibiotic he was prescribed.

On Saturday we participated in the Toledo Curesearch walk. Brody did not feel well enough to get up that early and since he was also fighting this infection and it was relatively cold that morning--we let him sleep in-- Trish and Geordi and Jaden went to the walk with some friends and the rest of Team Brodinator that was able to make the walk and had a good time... our team raised almost $4000 this year which is great considering the amount of time and effort we were able to put into the event this year.

I want to thank everyone that raised money and donated to curesearch this year--- it is a very worthy cause and it does help pediatric cancer research tremendously.

Anyway-- on late Saturday and into Sunday Brody began to develop a very sore throat-- our thoughts were that the new chemo was causing his mucus membranes in his throat to get raw (a side affect of alot of different chemo drugs) and the NG and NJ were irritating it further.

Brody did feel well enough to make the trip out to the African Wildlife Safari in Port Clinton, OH on Sunday (about 70 miles from our house) and got to feed the Giraffes which is one of his favorite things to do (will try to get some pics posted from Trish's phone)... he had a good time there.

 We took Brody into the Hospital (Toledo) on Monday and were able to meet with an Interventional Radiologist to see if we could get his NG and/or NJ tubes replaced with a G-tube and/or a G-J tube-- he agreed to try and we were scheduled for bright and early on Tuesday morrning for the procedure.

As it was explained to us-- they were going to purposefully distend his stomach with air and get it to push bowel out of the way and get the stomach to come closer to the skin surface-- the idea is to get the tube in his abodomen below the ribs-- with Brody's colostomy on the left side it would have to be above this and below the ribs-- unfortunately-- the stomach would not move where they wanted it so they had to abort (it would be very painful for him to have the tube between his ribs)... the pediatric surgeons at Toledo Hospital can surgically place a G-tube and this is somewhat more invasive then an IR G-tube placement-- we were told that we would have to wait 6 weeks to get it converted to a G-J tube-- with Brody's throat pain we wanted to have zero throat tubes if we were going to have surgery done.

We had previously consulted with a surgeon at Nationwide Childrens Hospital about having  a G or G-J done-- at the time we were of the opinion that his tubes were temporary so we declined but since after 2 months they have proven to be necessary and with his throat pain we have reconsidered-- Brody was very reluctant when we first mentioned this several weeks ago but his throat pain is so bad he really wants them gone and he is now all for this surger.. We were lucky to reach the surgeon we had consulted with before-- she was actually at the airport and heading out of town but she talked to Trish about Brody's options again and what they can and have done at Nationwide and referred us to one of her colleagues... we were able to get an appointment with him yesterday (Wednesday) morning and he arranged to get Brody put on the surgery schedule for this morning- he admitted Brody Wednesday afternoon so they could get all his meds in the system and make sure he was stable enough for surgery... Brody has been sleeping alot since monday-- his pain meds make him sleepy and he has needed alot with his sore throat on top of his Belly pains.

Anyway-- this morning they rolled him down to pre-op but unfortunately he had spiked a fever (he has had intermittent fever since Friday) and the surgeon did not think it was safe to do surgery today. We went back to his room. He later got some Tylenol this which squashed his fever and he actually felt the best today that he has felt in several days-- he watched Netflix (TV shows) and movies with Mom and Dad. He stayed up for about 8 hours straight today which is more than he has since he got this last infection. His throat while still very sore was not as bad as it has been and his voice which he had pretty much lost was back and so we are mostly calling this a pretty good day (after several bad days)...

As of now we are tentatively scheduled to have surgery on Saturday-- as long as Brody is well enough to do so... they switched his antibiotic to another one that hopefully squash his infection and fevers and make him feel better.. they are also taking new cultures. He had bloodwork done and his immune system is pretty compromised from his chemo/infection-- his ANC (absolute neutrophil count) is currently 120-- down from 2600 on Monday.... anything under 1500 is considered Neutropenic--- when he does resume his Eribulin-- we will likely need to decrease his dose-- it was scheduled for yesterday but with his infection and his sheduled surgery it is being held.

We are hoping Brody's surgery is simple and straight forward as this procedure normally is-- however it is possible there is some adhesions from the tumor that might complicate the surgery and we are hoping he isn't under anestesia too long and snaps back out of it right away and avoids time in the PICU like his last surgery--- the idea is to get him home soon. We are looking at getting a large bore G-tube placed on Saturday-- this tube will be large enough for them to pass a new J-tube through it  (but not obstruct his G-tube) and into his Jejudenum (where the end of his current N-J tube is currently)-- the J-tube will probably placed on Monday (we are hoping they might do it on Saturday so he can avoid a 2nd procedure under anestesia.

Geordi is staying at a friends house since his is going to public school-- Jaden is still being homeschooled and came down with us but went home with Trish's parents last night-- we were unable to get a room at Ronald Mcdonald house this time-- we are on a wait list--- Trish and I have been staying in Brody's room on their sofa/bed and an air mattress which luckily doesn't take up too much room in his room. We both of course like being near him if he needs us.. but is now a little difficult (for me anyway) watching nurses do what we have been doing for the last month or so.

We are all doing as well as can be expected.... 

I think that is it-- sorry if this "draft" is a little rough-- trying to write alot in a short period of time and get everyone up to date.

We are either too busy or too tired to write much lately.

Thanks to everyone that has helped us out with house and animal care and everything else-- making a difficult situation that much easier.

Bill  -- AKA Brody's dad-- Geordi & Jaden's too :)

Brody Pizzifred's Personal Page for 2014 Toledo CureSearch Walk

 It's only 3 days until walk day!  Join us on Sept 13th for the Toledo CureSearch Walk and/or donate if you can.  Let's cure childhood cancer!



Brody Pizzifred's Personal Page for 2014 Toledo CureSearch Walk