Monday, May 21, 2012

Unlucky 13?

Round 13 of chemo seemed to go pretty smoothly.  We went in on Wednesday, April 25 for a 3 day admit which started with general anesthesia for his IT chemo and an echocardiogram.  He was much happier to go this round b/c Randy's cousin was in town and Drew was excited to bring him along and show him the ropes.  It seems to be taking a little more to keep him entertained at the hospital, but things went fine and we were discharged on Friday, April 27.

Saturday night when I went to do his meds, he started screaming, saying it hurt.  I checked his port and it was leaking.  I deaccessed him and we had to go all the way back down to the hospital to have him reaccessed.  Everything looked ok and seemed to be working fine then and he wasn't complaining that it hurt anymore.  The next 3 days of meds seemed to go fine also.  

Tuesday, May 1, 2012 was Drew's 4th birthday.  We had a little party and it was a great day.  Other than looking a little pale, he was doing great, running around having an awesome birthday!

Wednesday morning he woke up fine too.  I ran out around 10am for about 15 minutes and when I got back, he was just laying in front of the TV looking very down and when I asked him what was wrong, he pointed at his port and starting crying.  I immediately bent down to look at it and it looked fine and wasn't leaking, but I noticed that his pulses were bounding, so I took his heart rate and it was 200bpm.  I took his temperature, thinking he may be spiking a fever, but it was normal.  I called his doctor and he said to come on in.  It took a lot of convincing, but I finally got Drew in the car and we make the trip down.  On the drive, he started looking pretty sick.  Once we got to clinic and were waiting to be seen, he was looking even worse.  

His hands and feet were cold and he looked shocky to me.  I went and found one of the nurses and she put us in a room immediately and checked his vitals which were all fine.  While waiting for his doctor, he spiked a fever.  At that point we knew we were staying and they were trying to get a bed for him on the floor, so they started IV fluids while we were waiting in clinic.  Before she hooked him up, she drew labs and blood cultures from his port and Drew was crying that it hurt (which is totally unlike him to complain of actual pain, so I knew something was wrong with his port).  She hooked up the fluids though and they seemed to be going in fine and he wasn't complaining that it hurt so we let them run.  

They were a little nervous about putting us on the regular Hem/Onc floor while starting the antibiotics b/c usually that is done in the ER in a situation like this so that things can be closely monitored and attended to in the event that his blood pressure were to drop.  The blood pressure is always watched very closely and checked every 5-15 minutes while first administering IV antibiotics.  This is because if he were to have bacteria in his bloodstream (bacteremia or sepsis) certain types of bacteria can produce and release complex molecules, called endotoxins.  These molecules, when released into the bloodstream, affect the blood vessels themselves and cause a drop in blood pressure.  This can result in septic shock, which is a dramatic drop in blood pressure preventing delivery of blood to the organs in the body.

Even though they seemed to be a little hesitant about our location, the ER was full and they wanted to get the antibiotics started as soon as possible.

We made it over to 4West (our usual Hem/Onc floor) and they got the IV antibiotics started.  His temp in clinic was only 100.8, but was climbing steadily and was up to 104.7 by this time.  They got some IV Tylenol in him which actually helped and brought his temp down fairly quickly and he felt a little more comfortable for a few minutes.  The first antibiotic went in and the first bolus of IV fluids finished when we noticed his shirt was wet.  I checked and sure enough his port was leaking. This time we deaccessed him and the area all around the port under his skin was red and he was screaming that it hurt if anyone even attempted to touch anywhere near his chest.  In the meantime his blood pressure was a little low now and there were A LOT of people hovering outside his room.   

The VAT team (vascular access team) came up and started a peripheral IV in his hand, so that we could continue his antibiotics and fluids, while deciding what to do about using his port.  The decision was made to not use the port because something was obviously wrong with it, so they had to place another peripheral IV b/c they felt like they needed more access for fluids and meds.  He barely fought us for the first IV and then even less for the 2nd, so I knew he was really sick.  

At this point his pressures were high 80's over high 30's.  Normal for Drew while resting is 90's over 40's, so this wasn't extremely low, but they didn't want things dipping much lower.  They called in the CAT team (critical assessment team) to evaluate if we should be transferred to the PICU (pediatric intensive care unit).  Now there were even more doctors outside his room and I think this is where I started getting really nervous.  All of this was happening very fast.  They decided to start him on Dopamine right then and to then get him transferred down to the PICU.  He got another dose of Tylenol before heading down, but it didn't seem to be touching the fever this time.

We got to the PICU and there was a lot of commotion with all of the doctors evaluating him and the nurses getting things set up and organized.

They added Norepinephrine b/c the Dopamine wasn't doing much for his pressure and he was in what they call warm shock (a clinical complex seen in early septic shock w/ enhanced peripheral perfusion).  He was very warm overall, but his hands and feet (which were very cold earlier in the day) were extremely hot now.  At this point we didn't have any central access either b/c his port wasn't able to be used and these medication really work best and need to be delivered centrally.  While trying to get all of these things figured out, his temp was still climbing.  The thermometer wasn't even reading correctly and would stop just before 105, but then just keep climbing as long as we held it there.  He started to look like he was working harder to breath too.  We got some ice packs on him and the nurse suggested that we put the nasal cannula on him to help get some more oxygen to him.  He hates that nasal cannula and never lets it near him, so I explained that to her, but told her to go ahead and try and when we placed it on him, he didn't budge.  I felt sick knowing that wasn't a good sign.

I had told Randy to stay home with the other kids and my mom and dad and sister Debbie came down to bring me my things for the night.  It was after 10pm and they had just left to go home.  

One of the critical care doctors and the doctor from the CAT team were there in the room with me discussing things and we had just finished talking when Drew opened his eyes and called for me.  I bent down to see what he needed when it happened.  His head started jerking and then his hands and arms were stiff and jerking.  I said, "Oh my gosh, he's having a seizure".  Both doctors were right there at the foot of his bed and were able to immediately take action.  The one started bagging him and the other got the Ativan.  I called Randy and told him that Drew was having a febrile seizure and to get down immediately.  The critical care doctor was very calm and collected, and very calmly told me that she was going to call a code because that would bring people into the room to help her.  They hit the button and over 20 people rushed into the room.  It took 2 doses of Ativan to stop the seizure which lasted about 5 - 7 minutes.  Then there were other meds to keep him sedated and to actually paralyze him, so that they could intubate him to protect his airway.  Once the seizure was stopped and he was intubated, they immediately went to CT to scan his brain.  When they went to CT, the respiratory therapists came in to set up the ventilator.  Randy was there before they even got back from CT.  CT scan was fine (which I knew it would be - I knew this was just a febrile seizure and not related to anything else going on in the brain, but I also understood that they needed to complete their workup and make sure all was well).  

They placed a femoral line to have central access and he had an IV in each hand and each foot as well as an arterial line to continuously monitor BP and draw for labs and blood gases.

It is standard hem/onc protocol to not use Motrin during chemotherapy as it can affect platelets and bleeding time, but the decision was finally made to give him a dose to try to get his fever down.  It worked and his temp was near normal for most of the day Thursday.  His cultures had already come back positive for a gram positive cocci.  

The next day they wanted an EEG (electroenchepalogram) and an MRI of his brain.  The EEG did not show any seizure activity.  It was normal for what they would expect after having had a febrile seizure, but the neuro critical care team felt most comfortable starting him back on antiseizure medication for a couple of months.  The MRI was also stable with no evidence of disease.  There was one small area on the MRI that showed a small pinpoint bleed that they couldn't really classify as new or old, but it was not present on the last MRI.  Neuro-onc and neurosurgery didn't seem too concerned with the finding, but neurology wanted a repeat MRI a couple of days later to recheck.  (This was a much faster MRI of just the ventricles and Drew did it awake.  Eventhough it was much quicker than the 1 hour scan of the entire brain, he still had to be strapped down to the table with a space like helmet put over his head, ear plugs in because it's so loud and then had to lay still while inside a big tunnel.  He did it like a champ!  The spot they were watching was unchanged and so it will just continue to be monitored.)

Surgery came by Thursday morning to evaluate the port site and see if they thought it should come out.  They weren't too excited about taking him to surgery with his blood pressure still requiring the assistance of medication as well as the fact that he had very few platelets and white blood cells.  They wanted to give the antibiotics another 24 hours to work and see if we could clear things up and get negative blood cultures.  While I understood their position and certainly didn't like the idea of surgery in his state either, I also told them right there that my gut was telling me that there was something wrong with his port and it needed to come out.  They were understanding and by early Friday morning with the way the port looked and still having positive blood cultures, the decision was made to remove it.  

He received several blood and platelet transfusions throughout all of this.  After surgery he was given another dose of Motrin and from that point his fever seemed to be under control.  Friday afternoon, once out of surgery and having completed all other tests that they wanted, we were able to get him off the ventilator.  He had been breathing around it on his own the whole time and it took quite a bit of sedation medication to keep him sedated and quiet and comfortable while on the vent.  On Thursday morning, he had actually woken up and looked around and didn't like much what he saw.  He tried to call for me, but not being able to talk with the tube, he just sat and mouthed, "Mom, Mom".  I explained to him that he had a tube in his throat to help him breath and that it made it so that he couldn't talk right now, that no sound would come out, but everything was ok.  He wasn't really happy with my explanation and was very agitated and still trying to communicate something to me when finally he got it out and actually said, "PEE!"  Leave it to Drew to show us that he can talk around the tube!  I told him to just go ahead and pee in the diaper, but even with everything he had going on, he insisted on using the urinal!  He is one strong willed boy.

The rest of our 6 day stay in the PICU is kind of a blur to me as I slept maybe a total of 6 hours those entire 6 days.  Since he was still requiring some meds for BP support, they decided to give him a shock dose of steroids on Friday also.  They were able to slowly wean down the dopamine and norepi.  On Friday night, since he was urinating a lot, they were running a bunch of tests on his urine and watching his sodium levels.  They came in and told me that they thought he had developed Diabetes Insipidus (DI).  I completely lost it.  I knew that the management of DI could be very involved, but it also just did not make any sense to me.  They kept saying that it can happen in brain tumor patients, but his tumor had nothing to do with this.  Then they explained that it can happen after any "brain trauma/injury", but it still wasn't adding up to me. Long story short, they started him on Vasopressin and then after monitoring weaned him off and there is no Diabetes Insipidus.

Friday night he started to come to more since the sedation meds had been stopped, but he was a little loopy, seeing things on the ceiling.  I was hoping that after resting Friday night, that he would wake up back to normal on Saturday, but Saturday brought a whole day of hallucinations.  It was really bad and very scary.  He was seeing bugs all over and was getting very upset about it.  Spiders and ants crawling all over and bees flying at him trying to sting him.  He would yell at me to cover him with the blanket to hide him, so that the bees couldn't sting him.  At times when he didn't seem to be so upset, he was seeing toy guns and was insisting that I grab them (out of the air) and give them to him.  It was very unnerving and there was not a lot of rest that day either.  All of the different teams of doctors were in and out again and they decided to do a spinal tap to make sure they weren't missing a CNS infection like meningitis or herpes simplex virus (they also started him on antivirals at this point).  To do the tap, they had to sedate him AGAIN, but since he was no longer intubated, they weren't able to give as high of a dose and it didn't really even touch him, so he basically did it awake.  I was pretty sure this was due to medication, but just didn't know if it was the Versed he was coming off of or the high dose of Keppra  they started him on (double what he was previously on) or a combo of both.  After hearing my opinion in rounds, they did decide to stop the Keppra.  Sunday morning he woke up and did see one bug on his arm, an orange one, but after looking closer and really examining it, he said, "oh, it's just my arm" and smiled.  Phew!  No more hallucination after that and all CSF tests came back normal.
He had his new PICC (peripherally inserted central catheter) line placed on Monday.  We had to wait at least 48 hours after having negative blood cultures to try and ensure that this line wouldn't get infected.

We were transferred back up to to floor on 4 West Monday night.  Drew was happy to have Brooke there.  

Things were going well and we were set to be able to go home Wednesday, May 9th, but then the site where his port was removed started draining puss.  

Surgery wasn't able to get up to see us on Wednesday, so they had us stay to see how it looked Thursday morning and make a decision as to whether or not they needed to go back in and incise and drain it.  Grandma & Papa (my mom and dad) came to visit for the day instead.

 They decided it needed to be cleaned up, so Thursday morning more anesthesia and surgery. 

Surgery didn't slow him down though!  Randy and Brooke came that afternoon and he was up and riding the bike around the halls. 

They had us stay another night to look at it in the morning and the surgeon wanted to come and change the packing and show me how to do it at home.  She had ordered IV morphine to be given 20 minutes prior to her doing it.  Our nurse practitioner was there in the room that morning when this was going down and was wondering if the surgeon needed IV morphine to do this, how was I supposed to handle this at home by myself?! 

Again long story short (or not short as this post is very long), I was able to get IV morphine for him at home too for the first couple of packing and dressing changes. 

Dallin was very excited to be able to come to the hospital to pick me and Drew up and take us home! 

Drew bounced back amazingly well and was back to his normal self in no time!  We came home on Friday, May 11th and he technically was supposed to start chemo again the next Wednesday, May16th.  His counts were even ready to start, but his neuro-oncologist wanted to give his body time to rest and give the wound time to heal, so we took an extra week off.  

Since his counts were good and we had the extra time, we finally got his teeth cleaned.  (Yes that is me cleaning his teeth.  I was a dental hygienist before I became a vet.) 

And Papa is his dentist!  

Dallin got in on the action too and had his first cleaning.  

We had a recheck with surgery last Friday and things are healing well.  I no longer have to pack the wound and it just has to fill in now.  

When I was changing the dressing, Drew wanted to see it and went and looked in the mirror and said, "Eww."  I hope it continues to heal very quickly b/c we are starting round 14 on Wednesday, May 23rd.  

For those of you that have lasted and read this from the beginning, I will bring you back to the title of this post of "Unlucky 13?".  I had originally entitled it Unlucky 13, without the question mark, referring to the results from round 13 of chemo.  But then I went back and changed it  b/c it's hard for me to say we aren't extremely "lucky".  To see what this boy has been through and watch him walk away as if nothing ever happened is nothing short of a miracle.  Yes, this whole experience is very trying and difficult to say the least, but we have been so blessed.  We know that the blessings Drew has received and the fasting and prayers that have been offered in his behalf,  have served to protect and strengthen him.  We are so grateful for all of the help and support that we have been given and cannot thank you all enough.

Thursday, May 10, 2012


Wednesday, May 9, 2012

We were all set to be discharged today, but Drew's surgical wound where he had his port removed started draining puss (guess that's what happens when you get a few neutrophils -ANC 3300 today!) They want surgery to take a look at it and see if it needs to be cleaned up at all, but no one from surgery could get up here today b/c of some big emergency surgery that lasted all day. So we are spending another night and hopefully surgery will come by early tomorrow with a plan. Drew was happy to spend the day with Grandma & Papa instead.

Tuesday, May 8, 2012

PICU Day 6 & Final

Monday, May 7th

We are out of the PICU and back on the floor! No diabetes insipidus, just like doctor mom had suspected. More anesthesia today to put in PICC line, but thanks to our trusty old friend, Propofol, there were no issues there. Brooke was able to come visit today and Drew was so happy to see her. He woke up and wanted her to sit by him in bed. She looked up at us and said, "Wow! That never happens!" They sat and told their "potty humor" jokes and laughed and I just laughed right along with them.

Recovering in PICU after having PICC line placed. Brooke watching over him, investigating where his port had been and this new set of "cords".

Drew - new PICC line just placed.

Brooke & Drew - they missed each other.

Brooke was so happy that Drew asked for her to sit by him and made sure to be extra silly to keep him entertained.

Monday, May 7, 2012

Day 12 Post Chemo, Day 5 in PICU

Sunday, May 6th

Doing much better today!  Hallucinations have stopped and off all blood pressure meds.  Turns out the diagnosis of diabetes insipidus was never a true diagnosis, but more of their working theory which he seems to be proving wrong.  Right now have him off meds for that too and watching over next 8 hours to see if there is even any issue there.  He's tired and still fighting the sepsis, but was up and shooting his new gun today and playing legos!  If all goes well we expect to be out of the picu and back on the floor tomorrow. 

Sunday, May 6, 2012

Day 11 Post Chemo

Saturday, May 5th
 Port is out, sent for cultures and also positive for Staph aureus. Off the vent and extubated and doing fine with that. Stopped one blood pressure med and weaning off other. Stopped the sedation - he was on a Versed drip with additional doses as needed to keep him quiet while intubated. Now he is having hallucinations thinking there are bugs all over the room. Assuming this is from the sedation, but ruling out other causes like CNS infection. Spinal tap came back clean, but they had to sedate him AGAIN for that! Also developed diabetes insipidus overnight that we are hoping is just a transient part of this septic picture. Trying to be patient. Not much sleep going on here. And he is spiking a fever again.

Friday, May 4, 2012

Things Can Change in an Instant

Hello All,
This is Debbie, Drew's aunt.  Drew was admitted in the hospital on Wednesday, May 2nd with a high fever and some complications.  Dayna has been posting updates on Facebook when she can, but I thought I would add them to the blog for everybody to see.  

One day this...
The picture above was taken Tuesday, May 1st, Drew's birthday!  We had a wonderful celebration for this special little boy who turned 4.  

Next day this...
 Wednesday, May 2nd 
Drew came down with a fever and his blood cultures came back positive for an infection.  He went down hill quick and is in the PICU.  He had a febrile seizure and is now intubated on a respirator.

Thursday, May 3rd
 Drew has continued to improve today.  Fever broke this afternoon.  Still needing some help to maintain blood pressure.  All follow up tests so far look good.  They still have him intubated on the vent, but he has been breathing well on his own the whole time.  He is sedated, but has been awake at times, trying to talk and interacting with us through the sedation.  He wants that tube out!  Port site which looked infected is much improved, so we are holding off on taking port out right now.  He's in MRI now.  Once that is done we will work on hopefully getting him extubated by morning.

 Friday, May 4th
Drew was febrile again all night and port site started looking bad again.  Had surgery this morning to remove the port and sent it for cultures.  Also found a hole in it which is why it had been leaking.  Out of surgery and going to try to wean off the vent this afternoon and try to wean off the blood pressure meds later to see how he does.  Picture showing cellulitis.  I told them Wednesday that the port needed to come out - glad they agreed today.