Thursday, 29 December 2011

Cat's Nine Lives

That's it!  I let my guard down for one minute...I am officially with a sore throat.  Now most of the time the expected response would be (and truly expected) "suck it up Buttercup!", but this is so horrible.  I can't go into the NICU while sporting a sore throat AND I held Braeden not once but twice yesterday, it will be so horrific if I made him sick.  Think positive, think positive, think you ever just want to stop being so damn positive?  I certainly do!  Wait, here it comes....wait for it....POOR ME!!! HA!  There are times when one just needs to feel sorry for one's self!  I think after the past 10 weeks that it is probably not the first time I've felt that but it feels good to say nonetheless (with a smile on my face).

Mr. B (from what I hear via the phone from his nurses) had a good day.  He is still SATing at around 35% oxygen but is plugging along, the longer he can be off the vent the stronger those chest muscles/lungs become.  He had another few 'awake' times today (boo hoo poor me again), which is so exciting to hear.  Mike and my sister Monique (Auntie Mobee) are at the hospital now (poor, bah, can't be bothered anymore).  I am hoping she'll get to see him awake as it is her first meeting of him.  It seems so foreign to me that people don't 'know' him when you all know so much about him.  That time will come I suppose.

We found out a few things yesterday when we were up last night.  One being that he'll probably require a head-shaping helmet for a time.  Now that he is losing weight (and gaining, and losing), his head shape is very wonky.  Yup, all the medical terms I've learned and 'wonky' seems to describe it the best.  It is very misshapen the poor kid.  The nurses will be working on it, turning him from side to side and now on his tummy (yippee!) sometimes.  The second thing we found out is that my sweet child is obviously part CAT.  No, that isn't a typo, I said cat.  I found out from Braeden's Primary Nurse that she made a mistake last week, not a little one either.  Braeden was given 10 TIMES his dosage of Emoxaparin (anti-coagulant).  There are many words that I could use at this point to describe how I feel but I am trying to keep this blog mostly PG...Slug in a ditch (thanks Auntie Terri)!!!!  Now his nurse (obviously) feels terrible and it wasn't done with malicious intent BUT, it very easily could have (should have???) killed him.  The one major issue of having that much of the drug in his system would have been bleeding.  If he in fact did still have the bleed in his brain...well, I'll let you just think about that.  The sad part is, no matter how mad I can be, it was simple human error that was checked by another senior nurse and was missed again.  Both nurses that drew and checked the dosage were both senior nurses and have over 40+ yrs between them nursing.  It certainly goes to show we are all human.  So I had a nice 'chat' with the Neonatologist's Director about it and she told me of the 'plan' that they've now instituted to make sure this never happens again.  Moving on.  What?  It's not like I can change it, or do anything to turn back time.  Yes I am certainly angry and certainly concerned but what I CAN tell you is that his nurse will double, triple and quadruple check every dose that she measures for him from here on in!

So yes, I believe that B is part cat, he certainly has at least 9 lives.  I'm not altogether certain how many he's used thus far in his 7 weeks of life but I know we've almost lost him more times than I care to count.  Do you think he'll always land on his feet too??

Wednesday, 28 December 2011

Going Cautiously Forward...

I should start off by saying I'm not a huge fan of Christmas...gasp, shocking I know!  I find the whole day quite depressing, it is just so much prep, time and energy for such a short time and reward.  Don't get me wrong, I love to see my children's faces light up and love to watch them with there endless energy rip into the gifts carefully chosen for them I just always feel a sense of 'let down' at the end of it all.  However, it was a interesting and special Christmas packed on top of all that this year.

Thomas love

Yup, our kid gets Panasonic Phones for Christmas!

Grandma and Pappa
We had a special Christmas for a few reasons but mostly due to the fact that Grandma (Jean) and Pappa (Wade), Mike's folks came out to spend Christmas with us in Calgary.  It was special for them (I'm assuming here), because it was the first Christmas that they had spent with Torin and Rylan.  Unfortunately their two week stay went by far too fast and they've gone back to wet Vancouver.  We do however have the lovely treat of Auntie Mobee (my sister) here for three nights from Chilliwack!

Christmasy Boy
We all trooped up to the hospital Christmas day to see Squeak but I couldn't let the boys come in due to some lingering coughs (which in the last two days have turned into yucky, hacking ones instead).  His lovely Christmas Eve nurse, Colleen, had put him in his super cute 1st Christmas candy cane jammies.  Well, feet were in but not arms due to the lines, but they were still super cute!  He got a wee bit spoiled rom Santa visiting the NICU that evening as well!  Braeden had a stocking with some stuffies and ornament hung from his IV pole.  The ornament was so thoughtful and thought out by one of the charge nurses, Neila, she wrote 'Braeden's First Christmas' on the front and actually traced his sweet little foot on the back side of it.  How wonderful!  He was also gifted with a new stuffie at the head of his bed and several new handmade knit hats.  On his chair was a knit blanket folded up in a bag.  When I pulled it out of the bag a small booklet fell out and I asked his nurse what it was and she said she didn't know.  I opened the book and started to read the entry on it, and promptly got teary eyed.  Several women got together to knit this blanket and each woman that knit a panel of colour wrote a short note to the baby that would receive it.  They were from Alberta and Saskatchewan and the notes ranged from last November (a year before his birth) to last March.  What a fabulous idea!  I only wish that there was an email or some contact info because I would have loved to say thank you and told them about Braeden and how appreciated their thoughtfulness is.  I would love to do something like this myself although I can't knit, crochet or sew due to a bum tennis elbow!  All of the gifts Braeden received were donated by wonderful, giving people or corporations (thank you Shaw and Calgary Flames).  I saw yet one more box with his name on it and opened it to find a hat, socks, sleeper and a duckie all in soft baby yellow.  Now this gift I suspect was from one of his nurses but they'll never tell!  Possibly the same nurse(s) that left us a stack of Christmas baking on the 23rd??  We were gifted with two great nurses over Christmas as well (as both of his primaries were off), Barb and Colleen.

So Christmas Day was interesting due to the fact that they extubated Braeden that afternoon!  We had talked about it the day before and the resident had said it would be in the next 7-10 days (pretty sure that didn't mean the next day although it fell within the parameters!).  Once they get something in their mind though it gets done it seems.  Braeden had been suffering along with a very large leak in his tube (which means it doesn't sit snugly between the vocal cords and air escapes, hence the nickname Squeak) that was upwards of 75%.  He was basically breathing on his own since the majority of his air being pushed through was escaping anyhow.  I had no objection to the extubation, he'd been on it for far too long but they couldn't extubate earlier due to the severity of the swelling that if he'd had an issue with air they would have had major issue re-intubating.  I wanted to be present for it as I hadn't been when they extubated at Foothills and then upon watching it I changed my mind.  It is an entirely unpleasant experience to watch your child turn blue while gasping for air like a fish out of water.  They place him on high flow nasal prongs right away but it takes a whole lot of getting used to when you've had air forced into your lungs for several weeks up to that point.  He did a pretty great job but was working very hard to take each breath and was fairly agitated by it all, as would anyone gasping for air.  The longer a baby can maintain themselves off the vent the better the chance they have of staying off it and I'm proud to say it has now been three days!  Superstar!  He is breathing much better now and not working nearly so hard.  He still gets quite tired and they need to crank him up again once in awhile but for the most part he is sitting at 30-40% oxygen (normal air is 21%).  It was certainly not easy leaving him that first afternoon though, just knowing how hard he was working for each and every breath.

I should backtrack by saying that Braeden's last MRI that was done on Christmas Eve day was very positive in the fact that it showed NO further stroke activity.  It did show that he was prone to seizures (not a big surprise there, been there done that) but the truly wonderful thing is that the Neuro reported that his brain function came across as more mature than what she would have predicted especially with his small brain size.  Any piece of good news is welcome!

I am extremely hesitant to say this but it would seem and feel as though we have turned a corner (I suppose it might be accurate to assume there are many more corners to follow), as Braeden has started to lose weight, somewhat rapidly.  I was actually able to cup the back of his head when I held him on the 26th!  I was so stunned when Barb handed him to me, he was so tiny again.  He'd lost 526 grams in a 24 hr period (that is over one pound).  He gained back half of that yesterday but it is how this kid seems to roll.  I didn't realize they had given him some 'super' doses of lasiks (diuretic) and they seemed to be working.  I was so happy that he was stable enough to be held after being on the nasal prongs for only one day.  He lay on my chest and at one point I realized it was very quiet.  When I looked down at him I realized he wasn't fighting for his air, he was sleeping so deeply that he was simply breathing.  I knew he could do it!  We had an amazing cuddle for over two hours and we both felt a whole lot better because of it.  It is positively terrifying for me to have feelings of positivity and excitement with Braeden as we've been through SO much in the short seven weeks of his life.  In many ways we sit with bated breath waiting for yet another shoe to drop (how many shoes does one have anyhow??), due to the constantly changing stream of issues he's had.  He is outputting great amounts of urine (thanks to the 'super' lasik) and losing weight and for the first time ever, on his seven week birthday, he opened both of his eyes and checked me out!  Pretty damn good seven week birthday present!  Take a moment and think about that, seven weeks it took to see my child awake and alert, it is simply quite shocking isn't it?  He is slowly having 'awake' periods now and doing baby things like, "hey nurse, my bum is wet and I'm hungry dammit!".  We are cautiously optimistic now about his progress forward, this is a good thing.  They are also in the process of dropping off his Morphine and taking him off the Phenol Barb med (for seizures) while raising his level of Ketamine (other seizure med) with the hopes of losing the 'sleepy' side effects of the Morphine and the Phenol Barb.  They have to take it very slow with the Morphine as he's been on narcotics since birth.

We are still taking life one day at a time (I can't imagine that changing any time soon), but we are feeling as though we might be slowly taking steps forward.  If we can keep going cautiously forward then maybe, just maybe the step backwards (if and when there is one) it might not be quite so drastic this time.  I do have to admit though that I am happily going to leave 2011 behind me, this has been one hell of a year with Braeden being the very dramatic end to it.

Friday, 23 December 2011

Quiet Before The Storm

I am lamenting the loss of my laptop, I wanted to write this last night:

Everyone keeps asking me if I am sleeping because Braeden has had some quiet days back to back...the problem is that they have been too quiet and I get nervous.  It is the quiet before the storm with him, always.

Braeden had a busy morning yesterday with tests and assessments and such so I didn't get a chance to hold him till after noon.  I hadn't held him the day before because he took a really long time to settle after a short (hour long) hold on Tues.  I was singing 'Silent Night' to him because it was the only song that came to mind (not surprising given the time of year) and I heard singing in the back ground.  Now the NICU is supposed to be a quiet, sanctuary place so it was certainly out of place.  The NICU however is attached (all one ward) with the PICU (paediatrics) and they had a choir come through and sing three songs.  It was actually quite peaceful and beautiful and I sang along to B whilst (yep, whilst) the tears ran down my face.  I struggle with this time of year every year, it is just too much crammed into such a short space (especially with Mike, Mine and T's Birthdays on top of each other), and it is always seemingly a let down in January.  It's gotten 'better' with kids because you thrive off their energy but it is still seemingly a downer.  It will be a 'different' Christmas this year but I think that the fact that Braeden is with us is what makes it special.

I digress, back to the holding.  It was while I was holding Braeden that I started playing with his toes on his right foot looking for a reaction.  He hasn't been very reactionary to me the last few days so I was looking to see if he would open an eye.  I got very little response from him, not really a twitch of toes that one would expect when one tickles one foot.  I switched back and forth from the right to the left and certainly got a better response on the left than the right.  It was then I noticed that Braeden's left arm was moving a bit.  I didn't pay it too much mind right away till it happened again and it triggered my brain that he was in fact having a seizure.  It was the exact 'pumping' movement the the Neurologist had shown me.  I called for a Dr and the Resident came in just as he started it again.  She put her hand over his to stop the movement and sure enough she could still feel it pulsing under her hand (you can't stop a seizure by holding someone).  So again the tears started running because this is when he decided to desat (which means his oxygen and pressures drop dramatically) and turn blue in my lap.  It is not easy to get a baby back into his bed to work on him when he is attached to many wires and a ventilator...The RT got things back on track by pumping up his oxygen as I held my breath.  We got him back into bed and his sats came back up slowly.  They gave him a secondary medication that is supposed to stop seizures (as he is already on the phenol barb which should be doing just that) and he passed out essentially.  He was having to work a great deal to breathe (even on the vent) and they figured since they were trying to wean down his settings that they had also partially collapsed a lung again...great.

An EEG was ordered STAT and an Xray to check for vent tube placement.  The Cardiologist (our lovely Dr. Fruitman) walked in the midst of this and I panicked a bit more as he'd just had an echocardiogram done as well.  She, Dr. Fruitman, wasn't the scheduled Cardio on but saw his echo and came down to tell me personally that the heart looked good.  Phew!  Good timing on her part (as usual), she and the Neonatologist stayed and made me laugh a bit while they hooked him up.  Did I mention we've got GREAT Dr's??  The EEG takes a looong time to set up an then an hour to run the test after getting all of those electrodes attached.  I stepped out for a breath of air (and to stop shaking) and went for a walk.  I was sitting in the other end of the hospital when I ran into his Neurologist and she stopped to talk with me.  I explained the seizures (which she already knew of course, it is a hospital after all) and she listened to my concerns with the left foot.  She agreed that it was concerning and would come see me directly after reading the EEG.  She explained that yes, the foot reaction (or lack thereof) could have been the start to the seizure.  She also explained that it is concerning to have a few quiet days and then to start with the seizures again, especially when he is already medicated for them.  I asked her if we could please up the MRI date as it was scheduled for next week and she responded about concern for the kidneys and I explained that they had been consistently out putting.

When she came to see me in B's room she explained that the EEG looked good, and showed that he was prone to seizures, not surprise there.  She did say the lovely thing is that his maturity of the brain looks good for his age, that was a piece of good news.  It doesn't guarantee anything but it certainly helps my mental health!!  She agreed that we should move up the MRI to recheck the stroke areas and to see if there has been more activity.  We opted to use the contrast dye this time so we can have a good look at the major artery and vein in the brain.  She said if she was seriously concerned she would have ordered a CT last night but she was concerned enough to want to view the slides today, not Monday.

So that is where we are at, waiting (not so patiently) for the MRI to happen, be interpreted and relayed.  It is a huge ordeal to get them into an MRI as well so I am certainly glad it is happening today, not after the weekend.  I am so concerned about the results that I have a non-stop sick feeling in my stomach, but am trying to remain positive (?) that we'll only see the 'old' strokes.

Merry Christmas?  We'll see.

Wednesday, 21 December 2011

Time Will Tell

I've not written for the past few days for a few reasons, I've just been trying to digest life and my laptop has decided to crap out on me.  I didn't realize how often I was blogging at a very late hour when the house was quiet and I could get some thoughts down!  I don't know if we can find the part for my laptop (as it is quite old) so the blogging might still slow down for a bit.  It is difficult to find time to sit down at home during the day downstairs and the hospital computer is somewhat limiting.

Braeden has certainly been holding his own the past few days.  He is tolerating short holds (about 1/2 hr to an hour) which is therapeutic for all involved (usually me).  They have weaned him down on his morphine with the hopes of getting a better idea of his movements and it is easier to track possible seizure movements.  It's not really so much good days and not so good days anymore for me, it is good hours and not so good hours.  Thankfully we've been having more good hours than not in the past few days. 

I met with the Neurologist yesterday to view his MRI pictures.  What I didn't realize is that it wasn't one stroke it was actually a series of several small strokes.  It was quite something to take a look inside your child's brain and see the areas of stroke.  We (Michael and I) are trying to keep a positive outlook on the brain function until they can tell us otherwise.  Braeden is still far too swollen to do an EEG (brain scan) so the plan right now is to do a MRA (same as a MRI but different views) next week.  The other thing that the Neuro pointed out is that B's actual brain is small for it's size.  He does have 'all the parts' it is just small.  She told me that she is unsure what this means, as she could hypothesize all she wants and in two years I would come back and tell her she is/was wrong.  Only time will tell with Braeden that if he is strong enough to pull through all of this, how he will be able to function in everyday life.  I know enough now that I won't take 'no' for an answer with this kid.  There will be no waiting till he is 4 1/2 like we had to with Torin.

Braeden's blood pressure is up again so they are looking again at the kidney function.  It is pretty hard to come back from renal failure without some consequence.  He is out putting urine but it is hit and miss at times which makes me wonder (totally speculating) if one kidney is working harder (more?) than the other.

The good news is that the phenol barbitrol (sp?) is keeping the seizures at bay for now.  He certainly doesn't need to add anymore of those to his repertoire right now.

Everyone is asking how we are doing.  This is not a question easily answered, not that we don't appreciate the concern.  Just know that we are getting out of bed each morning and carrying on, that is about all we can do right now.  Torin and Rylan are so excited (of course) on the count down for this blasted holiday approaching and we are just doing our best to keep things 'normal' for them.  They do struggle at times, certainly it is to be expected but we are just being honest when questions arise and trying to give them some leeway.

If people are still looking at ways to help, my friend Lorna Zebedee (along with Kiran Parhar and Amie Roman) is organizing a blood drive in Braeden's name in the new year here in Calgary.  I know many of you are not local to us so feel free to doing something in your area.  I am so proud of the people that are already donating.  As my sister-in-law Angela Watt said, "If I didn't pass out donating, anyone can!".  I am finding it really important to 'give back' and I know how much these resources are needed.  I was holding Braeden's hand yesterday when they called a 'code blue' over the hospital intercom.  Now I heard these quiet frequently at Foothills and didn't think too much of them (as disturbing as they are) but to hear it called at Children's Hospital, knowing that it is someone's child just made me ill.  It is so difficult to imagine a child in pain and suffering but they are certainly out there and they certainly need our help.  If it weren't for all of Braeden's transfusions (and I've lost count of them all), he wouldn't be here with us.  At birth Braeden himself was coded as a 'code blue', I've been there and don't ever want to hear those words associated with my child(ren) again.

Time, time will tell.

Friday, 16 December 2011

Tissue Required

This is an incredibly hard entry to write, please bear with me.  I am now going to stop saying just when you think things can't get worse because they do, they ultimately always do.  This post is kind of all over the place because there is a lot to add and it isn't necessarily in the best order.

Yesterday was one of our busiest days since Braeden first arrived.  The day started with a call from Braeden's night nurse asking if I could be there for 8 am to meet with the Haematology Dr.  Braeden had had a rough night and so we started the day running.

I arrived to Children's just after 8 to find out that we were going in for a CT scan, not an ultrasound.  Ultrasound wasn't going to give us the pictures that the Neonatologist felt she needed.  The Neo Dr's conferred with Radiology back and forth and decided on a CT rather than an MRI.  I was impressed all to hell with Dr. Wendy Yee (our Neonatologist for the past two weeks), yesterday, she personally went to find the Radiologists that would be in charge and spoke to them face to face.  It is quite the process trying to take an infant into a CT scan, especially one covered with wires and intubated.  The nurses actually called in a transport nurse from Foothills to assist.  All in all it took three nurses, an RT tech (respiratory) and myself to get him and all the equipment he is attached to there.  Seems quite 'Monty Python-esque' when the test itself took 90 seconds to complete.  I had the wonderful moment of having to decide if we would be okay with permitting the test as they have to use the radiation dye to complete the test.  Normally this is such a small amount and your body flushes it out shortly after.  However, being as Braeden's kidneys are hit and miss at the moment, it was a big decision.  Dr. Yee explained the risk of renal failure to me but the fact is we needed the test, we were just running out of answers but not problems.  The Cardiologist had followed us down to CT for the test as well and I was permitted to be in the CT room for the test.  I watched the faces of his nurse and Cardio Dr as the test was running and it is a pretty big indication of an issue when they don't look at you.  The second indication that things weren't good was the sudden flurry of activity when we got Braeden back to the ward.  The third, and probably the most unnerving sign, was that the Neo told me to call Michael to come down for the meeting.

(You will most likely want tissue before going any further, I know my heart is breaking just having to write this)

Michael and I had some of our worst fears (and I thought we'd covered most of them), come to light yesterday, Braeden has suffered a stroke.  The CT scan also showed several more clots in and around Braeden's head and neck.  There is one fairly major clot in the vein in his neck in which the brain drains down into the rest of the body.  It is not completely occluded (blocked) but pretty close.  The Neurologist believes that this clot may have actually formed while in utero and may have been the beginning of the hydrops.  It is certainly a good reason why my poor baby gets the majority of his swelling only in his upper body/head.  It is the same pattern of swelling now as it was when he was born.  Due to the findings, Neuro decided to go ahead with an MRI as well to get a closer, more in depth picture of things.
Getting prepped for my MRI

This is where my respect for Dr. Yee (Neonatologist) grew even more, she had every specialist that Braeden needed and all of their teams come to us yesterday.  I met with no fewer than 30 Dr's yesterday alone.  We were met by Neurology, Haematology, Infectious Disease, Nephrology, Genetics and Cardiology.  We spoke to and listened to all of the head specialists of these areas and their teams.  We had Dr's on top of Dr's on top of Dr's. 

The two major areas we are dealing with first are Nephrology (kidneys) and Neurology (brain).  The Nephrologist informed us that Braeden's kidneys are only functioning at 25%. He had not out putted urine for almost 6 hrs by the time they talked to us.  We had a long chat about the possible need for dialysis to start to flush out some of Braeden's fluid.  Braeden would not be a candidate for intravenous dialysis due to his low platelet counts (he could bleed out).  So we discussed the pros and cons of doing the subcutaneous dialysis in which they insert ports into his abdomen and flush the fluid through that way.  That comes with all kinds of risks itself, mostly being infection and bleeding.

Haematology was next and we talked about any family back ground of any blood disordered (which there are really none).  It wouldn't be unheard of for a baby to get a clot due to lack of movement with the swelling and the number of ports/IVs he's had but it is extremely unusual to have several clots in different places.  They were still concerned with the low platelets and the rise in white cells.  Their concern is how to balance Braeden's blood back out while not doing any harm or adding to the swelling.

The Heart:
B's heart is strong, Cardiology is happy with it just being 'stable' right now.  It's funny (not) how the heart that was my focus for so long is now waaaay down on our list.

The Strokes:
They've already happened, you cannot reverse them so there is really no treatment.  We can't and won't know the extent of damage for some time.  We know (from the MRI results, I'm throwing them in early for ease here), that the injury has happened in the lower left side of the brain which typically houses the sight.  The Neuro can also tell me that the bleed happened some time in the past week, most likely the past few days.  She informed me today not to dwell (sure, okay) on where the injury is as the brain is an amazing thing (which I can agree with), and we won't know the extent of the damage or how long term/life changing it may or may not be.  As a result we also know that there is a 25% chance of seizure activity with a brain injury.  Which ironically enough is why the CT scan finally got ordered because the Neo Dr thought he'd possibly suffered a seizure the night before.  Is he at future risk for another stroke, yes.  Can he survive this, (after viewing the MRI results), for now, yes.

The Clots:
Standard treatment for a blood clot(s) would be to prescribe anti-coagulants and go from there.  When you have blood that isn't properly balanced this doesn't work all that well because they thin the blood.  It is also not a great thing to do when you already have a bleed on the brain and the addition of this type of drug can make the bleed a great deal more significant.  However, there is NO OTHER treatment for them and to leave them just compromises his life that much more, not to mention inhibits brain flow.  Another thing with anti-coagulants is that you need the kidneys working to flush out the excess fluid that the drugs will help to deal with.  Here again we found ourselves having to apply a pro and con list.  Michael and I were both agreed that we couldn't afford to wait and we needed to proceed with the drugs.  The Nephrology team is being very conservative with the medication and is constantly changing the dosage depending on how much urine output there is.  If urine out put isn't sufficient then the dose drops and vice versa.  Other risks (as if there weren't enough?), the drugs could loosen a clot and it could travel, getting lodged elsewhere.  Which in part leads us to the kidneys.

The Kidneys:
After review, we now know the kidneys are functioning at approximately 25%.  There isn't a specific reason why (just yet anyhow), but kidneys are the source of life, when the body is under extreme stress they are the first to be affected.  The good news (???) is that as long as he is able to out put urine, we can avoid dialysis for now.  It seemed that the threat of dialysis yesterday inspired our little man to start peeing again.

 What does this mean overall?  The hell if I know (is that too harsh?).  Braeden is in such a fragile state and I cannot get a straight answer or anything close to a promise that my child may survive all of this or if he is to survive it what the quality of life may be.  I will be quite shocked if there isn't a genetic component (amniocentesis to put your mind at ease? Ha.), there are just too many factors now for there not to be.  Braeden remains in an agitated state a great deal of the time right now and the nurses are just trying to find different ways to soothe him.  He now requires two nurses around the clock with him to be on standby (not that they word it that way).  He is still extremely swollen, his weight fell a wee bit yesterday and then rose dramatically again today.  He is struggling to balance his blood pressure (it is either high or low) and it seems to be the same with his heart rate.  Ironically enough, his heart seems to be coping well with all of this.  He is still on his antibiotics and will be for the duration of the 21 days (we are just assuming meningitis at this point and treating for it).  He is still on his anti fungals due to the amount of antibiotics he's been on in the past 5 weeks and he is now on a ANOTHER antibiotic because of the continuous rise in his white blood cells.  He is coming down on his blood pressure meds but that changes daily.  His morphine levels are seemingly higher each day and he is requiring boluses when he is in a fit and won't calm down.  The MRI results are just a more in depth look at the stroke area and the clots to measure where they are located.  The results don't change anything, they just give the Neuro a more clear picture.  The Neuro and Radiologist are going to set up a meeting with Michael and I and review the images with us.  We have a hell of a lot of Dr's right now that all need to find ways to prioritize what they need and prioritize each others (other fields) needs.  They seemingly work well together and the common theme with all of them is how to keep Braeden alive.

So as if this isn't all enough on our plates, Braeden had a two minute seizure this evening right before I got back to the hospital.  He wasn't administered anti-seizure drugs as it was a short episode but it now tells us that Braeden has chosen to be in the 25th percentile that suffers from seizures. 

So how am I?  I am upright, that is about the best answer I can give you at this point.  There are not enough tears to describe the anguish that Michael and I are feeling at this point.  So once again, I thank you all for your continuing support and assistance.  Please don't feel badly if I don't return phone calls or messages.  I know how loved we are and I know that any of you would take a call from me 24/7 if I needed to talk, cry or scream. 

Somewhere deep inside of me still is hope.

Wednesday, 14 December 2011

Just When You Think

Just when you think that things can't possibly get worse...

Today started out as an okay day, maybe that was the problem.   Braeden had a really hard time settling down after his procedure yesterday and they had to switch him back to morphine and crank up his ventilator.   After a few hours of that he was finally out putting urine well over night and was seemly settled.  When I came in this morning they were just starting to ultrasound him from groin to neck in search of clots or abnormalities.  He was quite stressed during the procedure and it was no fun having to help his nurse try to calm him by holding him down.  It took three boluses of fentanyl just to keep him somewhat calm (no, they didn't offer me any!) and well over two hours of ultrasound to complete.  After the Doppler he had a good sleep for a few hours and I made the 'mistake' of coming home to make a birthday cake for Michael and do airport runs.

Just when you think it won't/can't get any worse...

I got a call from his nurse Trish (did I mention that it is never good news when they call me???) just after six.  She informed me that they had located a large clot in his left portal vein and that it is a complete blockage of the vein.  Now, this is coming through the phone from the fellowship Dr, but it is my understanding that this vein drains the liver.  Apparently there are two veins though and liver function is still adequate.  The good news (?) is that they aren't rushing him into surgery because it is not in one of the 'major' vessels but the crappy news is that we can't give him anticoagulants because his low platelets (their job is to clot) and this will just cause him to bleed.  Which also means surgery is completely out with his current platelet issues.  What they do know now is where his platelets are running off too, they go off the join the 'clot' army.  I am meeting with the haematologist tomorrow to discuss our options and go over the pros and cons of treating this.  Is he in immediate danger? No (said with trepidation), but he is being very closely watched. 

Just when you think it won't/can't get worse...

Trish informed me that Braeden was incredibly unsettled and thrashing to the point that the ventilator was failing to work for him, which ironically enough made him more upset!  He had had several of these 'episodes' and was desating to the point that the Neonatologist changed him back to morphine,( almost doubling the dose to what he was on yesterday), and they had to crank up the ventilator.  The vent is now doing the majority of the work for him, he is just too tired to try to do any breathing for himself.  Not what I wanted to hear.

Just when you think things won't/can't get any worse:

The other reason Trish called was to inform me that they were going to ultrasound his head in the morning (they couldn't do it today, he wouldn't have stood for any more testing), to search for other clots and/or a 'bleed'.  Braeden's edema actually went down on his lower body today, his head went up.  I wish there were words to describe this and a photo just wouldn't do it justice.  They (the team) are very concerned/confused at the localized swelling and find it all quite bizarre that it is also following the pattern of his swelling when he was born (all from the navel up and mostly in his head/upper torso).  The search for a bleed is yet another reason why they can't treat the clot just yet.  My concern tonight was because he was so unsettled, and that they had his morphine up that we might miss something.  The Dr assured me that his stats would show us if there were something urgent amiss.

They are still treating him with the anti fungal drugs because they still don't have a cause for the rapid rise in white blood cells.  Which, did I mention, have side effects that include liver function????

The GOOD news is that Grandma and Pappa (Wade and Jean Hicks), have arrived but the sad side of that is that Grandma Hurray (my Mom) made her way home (although it took some convincing that she needed the break).  We tried to celebrate Michael's birthday tonight but I don't know if there was much of a party feel to the night.  The boys were happy for the cake and ice cream and the excuse to go to bed a bit later.  Mike took his parents up to the hospital tonight and actually got a fairly good response from Braeden, squeezing fingers and pushing with his foot.  I just got back from the hospital and found him unsettled again.  Of course he could have heard my voice and was letting me know just how much 'life sucks'.

I am back to living life hour to hour again.  I will meet with the Haema Dr. tomorrow and the Radiologist will take a good look at his head on ultrasound (which terrifies me all the more).  The last few days seem to be a bit of a write off for positivity but I am grasping at straws for some, and for the love of Pete, someone give this damn kid a break already!!!

Monday, 12 December 2011

A Day of Dr's

What a day!  I spent 8 hrs at the hospital and it flew by due to the non-stop flow of Dr's through Braeden's room.  What a difference Mondays make when you need someone.

I met with the Neonatologist, Cardiologist (x2), Infectious Disease, Respiratory Technician, Haematologist and a General Surgeon.  The short version that we've all come to is that there is certainly something else going on aside from the Klebselia.  Braeden has certainly gone downhill again over the past two days and as much as I can mention that, nothing really happens on the weekends unless you can prove it is life or death, sorry make that immediate life or death. 

The conclusion from the above mentioned ones is that Braeden is suffering from one of two things (or both since he seems to be a lucky kid...).  They believe that there could be a secondary infection that is actually a fungal infection OR he is having issues with blood clots and they are sucking up all the 'new' platelets.

We did have a platelet level of 75 last night, 31 in the middle of the night and 7 this morning.  Even with the transfusions (4x's daily) he is still unable to maintain them.  The Haematologist is now involved to look for other underlying issues such as auto immune disorders (lupus, leukaemia, etc).  His white blood cell count keeps rising but the platelets keep falling.

Cardiology feels that his heart is strong (didn't get the echo results for today yet though) and that they are taking him off the sotolol for now with the hopes that his heart rate will rise (SVT's aside) and therefore pump harder, giving his kidneys more blood and better function.

They tried pushing PAC cells today (sp? proteins in the blood) followed by lasik with the hopes that the PAC cells would draw some of the fluid out of the tissues before being flushed by the lasik.

Infectious Disease informs me that if it is in fact a fungal infection then they will be able to view fungal 'balls' in the kidneys via  IF it is a fungal infection he will be treated with anti fungal drugs and closely watched because they come with some fantastic side effects on the liver.

The Respiratory Tech is concerned at the size of leak that Braeden has in his intubated tubing (it is loud enough to hear when you stand beside him).  Normally they would extubate and reintubate with a larger tube but with Braeden's swelling they run the extreme risk of not being able to reintubate.  Being as it took them 8 mins to intubate when he was born (which is news to me) due to the swelling and now that he is even more swollen than then...I vote a resounding NO THANKS!

The General Surgeon got involved today to perform a small procedure in which they fed a pik line (a type of IV) that goes in through his arm and down by his heart.  It had to be done in a sterile environment with the use of xray for guidance.  It was a fairly straight forward procedure but he somehow ended up by his liver at first...dunno.  Braeden unfortunately lost a fair amount of blood with the procedure due to his low platelet levels (even though they transfused him right before the procedure).  So, more transfusions, and more and more and more....

Basically they are all just pulling straws at the moment but none of them are afraid to say they 'don't know', which I respect (no matter how frustrating that is!).

So many lines

Breathe with me

look at my wee little nose under all this fluid
My fragile package
The wonderful portion of my day however was the fact that I got to hold Braeden again.  I didn't think that was going to happen for another week or two.  I was very hesitant because I know full well how painful my swelling was with him but the nurse (Trish the great), thought we should try since she had to change the bedding.  He got to lay on two pillows propped on my lap but I'm not complaining and neither was he.  He had a bit of a moment when he was 'flying' through the air to me but settled right in without a peep and had a nice steady heart rate and oxygen levels throughout.  I am hoping that those two extremely short hours were able to assist in his healing process because they certainly helped mine.

Kids fed, teeth brushed, stories read kisses goodnight and back up to the hospital I go...

Sunday, 11 December 2011

An Un-Happy Day

I will apologize ahead of time, this is not a happy or positive post:

I'm not sure where to start on this post, I hate to write anything when I'm not in a somewhat positive frame of mind but I know many of you are waiting for an update.

The best way to describe Braeden right now would be the fact that when I walked into his room today I promptly burst into tears upon seeing him.  He is so horribly swollen and just when we think it can't get any worse it always seems to find a way.  His weight tonight was 4.2 kg and his actual weight is only 2.6 kg.  There are what 2.2 lbs per kilo I think?  You do the math.  This poor sweet boy actually (and I can't believe I am saying this), looked worse this afternoon than the day he was born.  He of course is still beautiful and perfect in every way but by worse I mean he is so terribly uncomfortable.

It has been very painful visiting over the last two days as Braeden has not been particularly responsive to Mike's or my voice.  He is willing somewhat to squeeze a finger half heartedly but he is no longer able to open his eyes. He has gone back to being the limp noodle that he was back a week ago when they realized the sepsis was there.  It is so disheartening that after almost a week of the antibiotics that he is seemingly getting worse.  The Dr's and the Infectious Disease Dr's are confident that we are using the right antibiotic for this bacteria but they are also still doing regular searches for another possible source of infection.  We have had back two 'negative' blood cultures and one 'negative' sputum culture which shows that the drugs are working but with the constant need of platelets his body won't be able to keep up with the fluid overload.  He is now getting an average of four platelet transfusions per day and plasma on top of that.  His platelets went up to a reassuring 75 this morning but then crashed down to a resounding 13 tonight.  I am completely unable to describe in words how sick he really is right now.  He is still having issues maintaining his heart rate at a constant without it dropping down and swinging up again.  They are looking to do a repeat echo cardiogram tomorrow to keep on top of it.  His blood pressure seems to be okay as long as he's not feeling stressed which would be any time one of the nurses has to do anything in his presence.  The good news of the day is that the plural effusions (fluid around the lungs) haven't gotten any worse but he does have a small amount of fluid inside the lungs now.  It is hard to believe that he'll ever get rid of all this fluid again because his kidneys are on-again off-again and his sodium levels are too low now to use the lasik (diuretic) anymore.

I  am generally feeling overwhelmed and terrified much of the time these days while trying to maintain a 'happy' house for T and Ry.  We took the boys to Mike's work Christmas party on Saturday and they had a wonderful time between the bouncy castle and the pizza.  I however spent the party looking and admiring the number of new babies that weren't there last year and feeling how completely unfair that Braeden couldn't be there too.

I do have faith in the medical team caring for him but it is so hard to believe sometimes that this ride might actually have an end where life could be somewhat 'normal'.

There are positives for sure, like his platelets did make it up to 75, at least he squeezed a tiny bit on my finger, and he's in a great facility but they are getting harder to find right now.  I suppose I just need to cut myself some slack and realize that I'm certainly going to have crappy days too. 

What can you do to help?  Donate blood my friends, there are others out there that need it as much as Braeden and we are certainly using our fair share these days!

Saturday, 10 December 2011

Platelets Up, Output Not

So we have a rise in platelet levels to 31 but our little man is still not peeing.  The Dr has come to the conclusion that his kidney function seems to be fine it is the fact that he is so edemitist (edema in the skin and organs, of course I could be making up words here...), and with profusions (pockets of fluid), now that his body is not pulling the fluid back into his blood and therefore out of his body.  They have given him lasiks (a diuretic) but it is still not doing the trick either.  When I asked his nurse this morning 'what is next if the lasiks doesn't work?' she replied, 'I don't know'.  Of course this is the same nurse (who I've not met yet) that told me when I called for an update this morning that he was, "oh, well, I guess he is doing okay..."  FANTASTIC thing to say to an already stressed out Mom!

I am writing this with the hope that an increase in positive energy and thoughts Braeden's way today with help to resolve this latest issue.  His body is so horribly swollen that any removal of fluid for him would certainly help with some relief.  My greatest wish is that this poor baby could just get a break already!  I'm fine (ha ha), with taking on as much crap as the universe feels it needs to hand me at the moment but this kid deserves a break.

Platelets and Plasma Oh My!

Here we are day 5 on the antibiotics and this poor kid is still getting his butt kicked by the Klebselia!

Braeden isn't able to keep his platelet levels up, he was at 12 (should be 100) yesterday morning, got transfused and by 8pm last night was sitting at a less-than-stellar 15.  That's it.  He was about to be transfused again last night with platelets and plasma to pump him up a bit.  The plasma will also hopefully get him to start peeing again (poor tired kidneys don't want to work again).  The Neonatologist explained that it is not uncommon for this type of infection to eat away at the platelets but she, herself was hoping they would have gone up to 50, NOT 15.  She has ordered a blood smear and is hoping to see how big his platelets are that his own blood marrow is producing (whether he is even able to make his own right now).  The Dr. also explained that this but is a particularly nasty bug that he is dealing with, not so surprised here.  The plan was to catheter him tonight with the hope that bladder stimulation would hopefully kick up the kidneys again.  We also found out that it may very well be two to three weeks of platelet transfusions before his body is going to be able to bring his own levels up to where they need to be.  Buh-bye Christmas baby...SIGH, not that I really believed it but I did dare to let myself hope.

We found out last night that we are dealing with plural effusions again as well (pockets of fluid around the lungs) and a pocket in his abdomen.  This is somewhat similar to when he was born but caused by much different reasons.  The Dr's are keeping a close eye on the effusions and will 'pin them' (drain with a needle insertion) if they continue to grow.

His blood pressure was starting to dip down again tonight and being as he is SO swollen, they are hoping the plasma will 'fill his tank' a bit and bring it up.  His heart rate was strong tonight, if not on the high end for him at 140's but he was a bit agitated when we got there as they'd just weighed him.  His weight did come down a not-so-large 20 grams but at least it went in the downward direction.

Braeden is more alert today, they did come down on his morphine and he was trying to peek at Mike and I through slitted eyes.  His eyes (as swollen as they are) were focused on us, not rolling back in his head as they have been this past week. 

Nurse Trish did take off his bandages yesterday as well and is very pleased at the sight of his incisions, she said it looks clean and neat, no swelling or redness at all (score one for Braeden).  I think she mentioned that the stitches come out on the 14th, which reminds me to check that because it seems like a long time since the surgery on the 30th...

We are fighting illness in our house right now, T with the flu and Ry with a nasty cough.  I've got a scratchy throat that I am somewhat in denial about.  I am taking my zinc lozenges and the homoeopathics given to me by another one of my guardian angels, Sumyu.  I love that she anticipated that I would need the zinc lozenges and pre-bought them for me (as she has done with other things before).  Not only does she anticipate my needs but checked with the pharmacist if I could take them while nursing/pumping!  What a gal!  I am fighting back with all I have and we are hand washing crazies here but it really doesn't help when you are so run down (who is writing a blog at 4:58am?? Uh...that would be me).  I have to laugh because every nurse that we have dealt with through this journey always says to me 'try to get some sleep'.  It is a good mantra I suppose, if only there were some good sleeping pills to go with it!

Friday, 9 December 2011

Some overdue photos

**Update: When I first started writing the blog I didn't get around to putting up many pictures so this post has dupilcate photos that I've now added to the appropriate posts**

Some odds and ends of the many photos that have been taken:

These two were taken from when Braeden was feeling better and much less swollen before surgery while he was on the CPAP. 

There are a few of Ronald MacDonald House as well (more will follow), which I still need to write about our amazing experience.

The entrance to the "Magic Room" and the inside:

A LONG overdue hold for Daddy, he had to wait a long time for this one:
 My "Doctors in Training", thanks to a care package sent home from Nurse Joanne (Alberta Children's Hospital)

Seriously Swollen Baby

The best way to describe Braeden right now is "stably unstable" or as one nurse put it, "critically stable".  He is still struggling desperately with this new addition of the blood infection.  He is getting his 7th transfusion of platelets as I write this, his number this morning was back down to 12 (it should be closer to 100).  This 'klebselia pneumonia' is a wicked bacteria that is eating all of his platelets as fast as he can get them!  He did lose almost 900 grams of fluid yesterday, which is close to two pounds but he is still horribly swollen as the Dr said he still has 1 1/2 kilos (over three pounds), of fluid left to lose to get to his 'dry weight'.  We did have a period overnight again when his kidneys decided to stop working again but he came back and fired them back up (only to pee on the night nurse!).  The positive is, although when he heard my voice yesterday he did his heart wrenching silent cry, he did grab onto my finger with some force.  This may not seem like much but the fact that he isn't laying there as a limp noodle anymore comes as such a relief, he is fighting back.

He has still been having quite a lot of difficulty keeping his heart rate up (it should be 120-160 and he's been dipping between the 70s-90s).  The Cardiologist is concerned that when his kidneys stopped working his body didn't process the Sotolol (heart beta blocker meds) and it built up in his system and that is causing the low heart rate and the brady (brachacardia) episodes (when it dips down to the 40s).  They are holding off on his doses until his heart rate stays in the 100 range for a period of time.  This seemed to work last night but he was back to the same issue this morning.  On top of this he does have a 'leak' in his DA that when they stitched it didn't stay closed.  This means that he has a very loud murmur and that it might result in a second surgery down the road if it doesn't resolve.

The Neonatologist is still waiting to do the lumbar puncture to check for meningitis but Braeden is still too swollen to get a 'clean punch'.  I was always under the naive assumption that meningitis was a 'illness' in and of itself but it simply is a name for an infection in the menges (the fluid between the vertebrae and around the brain).  If Braeden does have meningitis (the klebselia pneumonia in his menges), then it is already being treated by the course of antibiotics that he is on but it would mean that he would receive three weeks of antibiotics, not two.  Another puzzling thing (which is somewhat concerning) is the antibiotics that he was on (for his blood in his stool, possible necrosis), while getting this bacterial infection should have able to fight this infection.  The Dr isn't quite sure how he ended up with this particular bacteria while on antibiotics sensitive to this type of bacteria.

I am trying desperately to stay away from the NICU today as we spent the night cleaning up after Torin with the flu and Rylan has a nasty cough.  I'm not sure if I can do it though, I am so (hormones at the ready) in tuned to this baby that it all but kills me to not lay hands or eyes on him for a 12 hr period.  It is even more difficult because he knows when I am there and I can't help but think he must wonder where I go at times (I'm sure this isn't quite how it works but still).

Through all of this Braeden has remain resilient and is working hard to come back to us again.  It is very difficult to see him so horribly swollen and (for lack of a better word), misshapen.  This blood infection is just another (albeit huge) step to bringing him home to us however that may look (whether he'll be on oxygen and medications).  I have been holding it close to my heart that he may be home for Christmas but that doesn't seem to be the way we are heading just yet.  Christmas will happen regardless, it just means some of it will be spent in the NICU is all.

THIS is the Way to Wake Up

This post isn't about Braeden (I'll write his next), it is about the amazing and wonderful support from those people in our lives.

Let me tell you what I awoke to this morning after spending the night cleaning up after a puking 6 yr old.  I wish I could play it for you but if you were listening to CJAY 92 this morning you might have heard it:

I woke up to the phone ringing (and cursing that I didn't take it to bed with me 1/2hr earlier like I thought I should).  The other end of the phone line belonged to Gerry Forbes and my sweet guardian angel, Jodi Hughes.  For those of you not from Calgary, Gerry is from the CJAY radio station's morning show and Jodi is my own personal local celebrity!  Jodi does a morning show on 1060 with her Dad, Jimmy Hughes (and I've caught up on my country oldies because of them) as well she is sometimes (hopefully you'll see her every weekend now) on CBC TV news doing the weather.  Unbeknownst to me, Jodi nominated our family for the CJAY 92 Secret Wish, which is Calgarians helping other Calgarians in need.  It came as an incredible shock and I have to say the 'interview' was certainly not scripted as I'm almost certain I came across as a bit of a dork! (and when I called Jodi 'huge' I meant her HEART!!!) :)  As a result of the nomination we have been blessed with gifts for all three boys (Santa Jodi must have gotten T and Ry's Santa letters because she bought them the thing they both desperately want this Christmas), gift cards and cash to help us out.  As if that weren't enough, our truly selfless friends of The Highwood Playschool got together and raised $800 of their own money to help us.  This is what makes me cry!  You all are such amazing women (and men), the kindness you have all shown us already with the pre made meals and kind, supportive words, coffees etc. have been over and above to what I ever could have hoped for or expected.  When I phoned Mike, in his shock he said, "but the kids don't even go to the playschool anymore!".

I can't put into words how difficult the past six weeks have been for us as a family, it was certainly not something that we could have prepared for.  The reason I have been able to remain 'strong' is because of all of the support we have received.  The CJAY Wish is just icing on the already well decorated cake.  I am asked daily how people can help and my answer is always, "I really don't know", but you have all still managed to help, each in your own way whether it is the offer of help, pre made dishes so I don't have to cook, or the offering of kindness and words!  I'm not one that has ever been able to ask for 'help' when I needed it, so again, thank you.

One thing I have always been blessed with is an amazing family, supportive parents and three big sisters (each with their own angel status for always standing by me and picking me up for the past 37 years). And who could have asked for such an incredible extended family and in-laws?  On top of all of this we have such an outstanding network of friends! 

Thank you really doesn't seem to be big enough words but that's what we are so very thankful for each and every one of you!!

Braeden is already so watched over that he really won't be able to get away with much once he does come home!

Much love and so many thanks!!!