Cease and De-CYST Already!

This is going to be a long one, this is what happens when I don't write for an entire week!  It's obviously been too long since I've posted as my phone is ringing! 

You might want a snack break in the middle...

Snuggle with Auntie Lorna

It has been a pretty crappy week so I've not had much energy to check email let alone explore any thoughts or feelings.  My week started off with a pretty mundane Monday, well maybe not.  Monday was a bit of a shocker when I arrived to see him.  As I walked into his room (room 17), there was a crowd of staff in there and a wailing child.  It took me a moment to process that it wasn't my child in the crib!  What were my clues?  First off the child was waaay too big and secondly Braeden still doesn't cry! I stepped out of the very busy room and stood shell shocked in the hallway for a moment.  A nurse saw me and asked if I was ok and I replied that I've lost my son (duh!).  I was directed down the hall to room 13 where I saw my sweet boy in his sweet crib!  WTH, they just moved him without ANY notice to his parents?  What, is it 'figure out where we moved your kid day'???  Not cool.  The good thing (and reason for the move) is his new room has a nice big window.  It is nice that he'll still have his days and nights to follow and will get some access to natural light and sunshine.  I left a happy baby in his swing and when I returned Wednesday he was still in it!  Now, don't get me wrong, they did take him out and assess him but he essentially spent 24 hrs there.  the other thing that has now changed as well is he is on a continual 24 hr feed.  They feel that some of his fussiness is due to acid reflux and have started him back on a reflux med and changed to continual feeds.

Tuesday was a teary day and for some reason I can't quite remember why.  I guess it could have something to do with the fact that I feel as though these doctors do NOT like to listen to the parents.  The NICU's policy is that 'parents know best' and you'll often hear the nurses saying that where as in the PICU the Dr's seem to rule all.  My issue (and could be why I am not making friends with the new Dr's) is that I question things.  One of his new Dr's (they can change every two days there as opposed to every 14 in the NICU) decided he should be weaned off his Chloral Hydrate and just started taking him off it.  The Chloral was issued to him in the NICU to keep him on an even keel (a mild sedative) to keep his sats up while we waited patiently for the Plastics Dr to return so we could decide our next move.  Now don't get me wrong, it's not as though I want to drug my kid, in fact less is more in my opinion but I have seen first hand the benefits of the chloral.  With the drug he is a bit more subdued but he also isn't having these huge periods of upset that last 1/2 hr where he is inconsolable.  It is very common for children with brain injuries (stroke) to be irritable at times and Braeden certainly has his times.  NOW, I know it is normal for babies to get irritable, I have had two others, but their lives didn't depend on oxygen 24/7 and being able to sustain themselves when they got mad. 

Cuddles with Grandma Hurray

Back to the story, my day started with my questioning the Dr during rounds (they don't like that as much here) about taking him off the drug.  Of course I should also mention that I had to correct the Fellow Dr more than once during her 'run down' of Braeden (read his damn chart and makes notes, it helps!!!), so I was already up in arms.  I asked her (the Paediatric Intensitivetist, main Doc), why they were messing with it and she noted that it is a short term drug and that he'd been on it too long already.  (Insert the fact that she didn't realize he'd only been on it 2 weeks...did I mention they should read the FILE?)  I got them to agree to give him a dose every 6 hrs (as per what it was with the NICU) but their plan was to wean him a bit each day...fine.  The Dr also mentioned that now was the time to start thinking about transfering him up to Unit 2, that he really didn't need to be in the PICU anymore.  Um, you just got him!  It was shortly after rounds that I was fighting back tears of frustration when Lorna showed up (thank you Lorn) and got me to focus (and vent).  I'd love to say the rest of the day went smoothly...HA. 

Braeden has found out that he LOVES his swing (thank you Sumyu!), so I was going to put him in it since he was fussy.  His nurse did a quick assessment first and when I picked him up I noticed the side of his face was wet.  I mentioned it to his nurse and she double checked his feed line and that was fine so I rocked him a bit and she left.  I placed him in the swing and noticed that he had some fluid coming out his nose so I called her back in and she checked the feeding line again (it is fed through his nose into his tummy) and even pulled some fluid out and check the ph.  It was fine, showed that it had stomach acid in it.  She then suctioned him out (I think more to appease me, the pain Mother).  He didn't have much to suck out so again she left.  I turn around to look at him and this POOR kid has fluid shooting 4 INCHES OUT OF HIS NOSE!  He was soaked!!  I ran out to get a nurse, any damn nurse will do thanks and come back in and it did it again!  Needless to say Mr.B was none to happy with it all.  We realized it was water and it was coming through his nasal prongs (for oxygen).  The nurse called the RT (respiratory) and this young thing comes in, we tell her what has happened and she walked up and shook the humidity tube, thus shooting yet ANOTHER gush of water 4 inches out of his nose. "OH, it's not supposed to do that!"  YOU THINK?!  Braeden was beside himself at this point, I think I would have been too.  I picked up the poor kid and tried to settle him down.  I tried for 10 mins to calm him down and he was just wailing (in his 'I make no noise' wail).  I asked the nurse to see if we could please give him something like Medazalam to calm him and she checked and replied that he had nothing in his file that she could give.  She asked if I wanted the Dr and I said yes.  Another 5 mins goes by and by this time Braeden has wailed himself out and crashes in my arms in big heaving sighs. 

In walks the Fellow (remember the one I had to correct several times?) she points out to me (the stupid parent) after noticing my sleeping child that "We don't just medicate our babies here for no reason, and going back to our earlier conversation, we believe at the PICU that less is more when it comes to medications for the children here and further more, Medazalam is not a drug I would administer for something like this".  OMG, how much trouble could I get in for hitting a Dr?  My Mom and Ry were in the room with me at this point too and I thought my MOM would hit her!  Now I do realize (as much as I hate to admit it) I am judging all of these conversations based on my emotional roller coaster but I swear at the time it really is as bad as I make it out to be (in my head perhaps).  Sigh.  We finally get all settled and guess what?  In walked Ultrasound to look at his kidneys!  I was more than a little hesitant to let them anywhere near him but was willing to let them try because they told me I could tell them to stop the test at anytime if I felt he was needing it.  The test actually went pretty well all things considered.  Braeden got to lay on his tummy on a warm blanket and he fought a bit but I think he just figured it wasn't a battle worth putting anymore wasted energy into.  I could see them marking spots on the screen and I asked (feeling alarmed) if they were stones but they both said 'no' and went back to the scan so I put it out of my mind.

Wednesday I was down for the count with a migraine...any idea why???  I literally slept the day away, tried my migraine meds four times with no avail and started chewing percocets (gak, I know).  Needless to say I didn't make it to the hospital (thank you Lorna for filling in) and by the time Mike went up that night he was fast asleep.

Thursday morning I was still not able to see straight so I got a bit more drugged up and went back to bed after getting the kids off to school.  I dragged myself up to the hospital in the afternoon for a bit because I had to see my little man.  I got there and he was fussy so I picked him up and we both let out a huge sigh and collapsed into the chair.  I asked for an update on the ultrasound from Tuesday from the nurse but she mentioned that I had to have a Dr go over it with me (that's never good).  I only had a 1/2 hour left before I had to leave to go get T and with five minutes to go a (new one) Dr comes bustling in.  She was apologizing that Thursdays are bad days to talk to Dr's as their residents aren't there (which means that they have to do their own work, oooh, I'm nasty) and she is so very busy.  I asked what the results of the Ultrasound were and she looks at me and says (and I quote), "Basically the kidneys are not normal".  Ummm, what does that mean exactly?  She goes on to tell me that his ureters are abnormally large and that could be causing him some reflux but also that he has multiple cysts in both kidneys.  WHAT?  She went on to say that the cysts could be from 'polycystic kidney disease' to which I replied, "oh, I have polycystic ovaries..." and this (oh so wonderful) Dr replies to me in a very condescending tone, "They are not related".  Not only did she cut me off but she was just plain rude!  So either the cysts are from PCKD (which is genetic) or they could be cysts that just grow with the kidney and cause issues later.  My big question, wait for it..."Why did they just show up?"  My favourite answer that I have gotten SO many times over the past three months, "I don't know".  Again, Sigh.

Now Thursday night was a better experience (yay, she'll stop complaining here!).  We had Andy Nichols come to the house and then up to meet Braeden and do a photo journal/interview about Mr.B and Blood Services.  He is doing a freelance piece for OpenFile (online magazine) and they just so happen to be profiling blood donations in Canada and asked to do a piece on Braeden (and his 35 transfusions).  Andy did well being as he got accosted here first by T and Ry and had to learn about phones, elevators, fans, microwaves and VTech video games!  Pretty funny!  The boys (my super shy kids, not) thought he (Andy) was great.  When we went up to see Braeden he was asleep when we got there and Andy got some (I am assuming) great shots of Mike holding Braeden.  Braeden, knowing some how it was time to perform, woke up and was in a wonderful, photogenic mood.  I am very excited to see Andy's final piece, I am sure to cry.  We came back here for the interview and if he uses it, it will be me yattering on and on and Mike sitting beside me nodding his head...sound like us?!  All in all it was a great experience and one day I can show Braeden his photos and say they were taken by the 'Great Andy Nichols' as I am sure he'll go very far in his career. 

I guess now would be a good time to mention that my Mom didn't go home today as planned, she cancelled her flight.  She cancelled it due to my migraine (which makes me feel horribly guilty not that that was her purpose), so I'm not sure what her itinerary is now but we are happy to have her awhile longer.

Friday, (phew, I'm tired typing this so you might need a break from reading it).  Ah Friday, the most frustrating day of my week thus far.  I am getting mad just thinking about today so it might come across a bit snotty as I'm still riled up.  I got to the hospital before rounds this morning and Braeden woke up as I came into his room.  I changed him and pulled him in for a cuddle to wait for the rounds to take place (I don't trust the decisions being made now after the Chloral medication incident).  They finally got to our room and the Dr (the snot from yesterday) asked me if I wanted to come out and when she saw that B was settled in my arms she told me not to bother, 'someone' would come in and talk to me after rounds.  I relented as B was a bit unsettled and I thought if I put him down he'd be more than unimpressed.  I listened in the best that I could when his nurse peeked in and asked if I wanted to know what the new plans were.  I figured that 'yes' I certainly did so I put him down and went to the door.  As I came to the door the Dr informed me that they were just discussing that they were going to do a nasal pharyngeal tube on Braeden right away. 

[Ok, pause here.  Remember back to when they tried this in the NICU, it was NOT a good experience at ALL.  Braeden HATED it.  This is the tube that goes through the nose and down the back of the throat, pulling the tongue forward and therefore (hypothetically) opening an airway for him.] 

I immediately objected stating that it was not well received in the NICU when they tried it and that the whole process was 'horrible'.  The Dr (ooooh, I don't like her), turns to me and says (again in her snooty voice), "What exactly was 'horrible' about it?  What does horrible mean?"  UGH!  I explained how he hated it, tried constantly to remove it, it created constant need for suction due to the excess mucus that the nose/throat form (because it is a foreign body) and he was miserable.  Well!  'They' do it differently in the PICU and 'they' split the tubing.  Yeah, they tried that at the NICU too, it still didn't work.  So this woman turns to me and says, "He can't go HOME on high flow oxygen, he CAN go home on an np tube".  I can't believe she pulled that with me, I am not an idiot.  He is no where near ready to go home and for her to try to put that carrot out there was just cruel in my mind!  Even if his airway gets open, we still have a few other issues to deal with.  Then she tells me that at least it is far better than a trach.  GAK!  FINE!  I told her to go ahead with it and she suggested that I go get myself a 'cup of tea' while they did it.  I (unfortunately?) had to go anyhow to pick Ry up from kindergarten and was actually glad that I didn't have to witness it.  The RT saw how stressed I was and assured me she would be as gentle and quick as she could.  I left and proceeded to cry the entire way to go to get Rylie.  Sometimes you just need to go with your Mom gut and not let a Dr push you around!!!  [Nice, happy part coming up]  I got home and Lorna and Lisa stopped by for a visit and an offer to babysit Ry so I could go back to the hospital and my Mom could have some downtime.  We had a nice visit (thanks again for the yummy food!), and Mom took me back up to the hospital.  I was gone just over three hours by the time I walked back into Braeden's room and when I got there there were four of them around his bed tending to him and the "Dr" at the end of his bed.  She (the Dr) announced to me that they pulled the tube out as it didn't work....

DEEP

BREATH

HERE
.
...she was so glad they tried it but it just didn't work for him and in fact it made his breathing worse.

Funny how I was right!!!!!!!!

The Dr left and I asked his nurse what had happened and she told me it was horrible.  He cried and fought it for the full three hours and was inconsolable.  They tried everything to calm him and nothing worked.  He produced so much mucus (sorry for the faint of heart) that it was shooting out of his nose.  The nurse told me she got the head nurse, then the resident, then the 'Dr' Herself and the Dr told her to just take it out (cause they surely wouldn't want to drug him to calm him down).  They made it at least over TWO days at the NICU!  So basically they tortured an already sick, poked and prodded baby for NOTHING.  Well, I guess not nothing....sarcasm alert....now they KNOW it won't work.  I really wanted to cold cock her, I swear.  I am so glad this Dr is only on a two day rotation with us because I wouldn't be a nice Mommy to her tomorrow at all.

The good news is that Braeden was in a wonderful mood afterwards and he had a wonderful little play time with me.  I did get a chance to talk to the Nephrologist about the kidneys as well.  Basically he told me that we shouldn't be too concerned with the cysts at this point as his kidney function is good.  I also asked a tonne of questions and he drew all kinds of pictures for me explaining everything (and he also mentioned that the Dr that reviewed it with me was certainly NOT a Nephrologist! Ha!).  The kidneys are a concern, certainly but he said we've got enough stuff to lose sleep over for now and as long as the kidney function stays strong then we'll not worry about them for another few months.  Okay, this Dr I can listen to.  It so happened that Neurology came in for a chat too (you can tell it is Friday) and she told me that they are going to slowly wean him off the Kepra (the anti-seizure drug) to see how he does.  She explained that they will do it very slowly as to not cause any 'withdrawl seizures' over a period of two weeks.  The Ped Dr's wanted him switched back to Phenol Barb and off the Kepra but she (Neuro) wants to eventually have him off the drugs altogether (which was the original plan), it is just happening a bit sooner than we planned initially.  I am totally fine with this but did express my serious concern about having him taken off the Chloral (sedative) at the same time because if he gets fussier or moodier we won't know why.  She agreed with me but told me that wouldn't/couldn't be her decision that it would be up to the Peds Dr.  Great.  I have another fight on my hands, of this I'm sure.

I did end my hospital day on a positive note though, I got to stand 10 feet from Paul Brandt as he sang "Alberta Bound" live for the radio in the food court.  It was great, made my teary again!  He was there as a part of the radioathon that they ran for the last three days.  I set up my $20/mth donation, did you?  I listened to the radio to and from the hospital and my Mom asked why on earth I was listening to it (the heart wrenching stories told by other parents) but I explained that as hard as it was to hear, (especially the kids that didn't survive), it made me stronger knowing that those parents got through their struggles.  They survived even if their kids suffered or didn't survive themselves.  Huge.  Scary.  But realistic. 

I came home the other day and started crossing off organ systems and such that Braeden has issues with.  Let's start at the head:

• Strokes
• Colobama (eye)
• Paralyzed left vocal cords
• Small mandible (jaw)
• High Peaked Palate
• Chronic Lung Disease
• Heart Coarctation
• Reflux
• Necrosis (Intestines)
• Kidneys (Cysts and Enlarged)
• Liver (Occlusion)
• Not to forget the Clots and the Sepsis and Meningitis that he has already endured

The really sad part is I'm certain I'm missing putting down something aside from the fact that he was also 8 weeks premature.  I am waving my white flag here people.  I won't say it can't get worse, I certainly know from experience that it can but seriously, we are getting a little worn out here.

I guess it's not every day you get a close up picture of Paul Brandt though!