Tuesday, 28 August 2012

Getting To The Bottom Of It

Our morning was spent in the GI clinic trying to get to the bottom of B's, well his bottom!  We worked through issues from Birth (you'd think my memory would be better than it is) and Dr.Wrobel was great, very patient but did turn to me and state that there would be no way to make a diagnosis today with the amount of information from him.  He's just too complex to get a hold of all the info at once.

I wasn't surprised by this and would rather she read through the file and be as thorough as possible before making a diagnosis or follow up tests.  I think Braeden is either frustrating to Doctors or seen as a fantastic challenge to sort through.  Hey, if you want to sort through folders that are more than 2 FEET high on him (his file), power to you.

Next on the list for the week (the last super fun week before school gets back in), get the cat to the vet for surgery to close up his massive abscess on his back from being attacked by another cat (don't even get me started on this one), then it is a trip to the dentist for the 'big' boys tomorrow, a visit from Homecare Nurse, RT and PT then back to the hospital Friday for an Audiology follow-up to see if the NEW ear molds fit his hearing aides a bit better.   The main problem with having hearing aides this young is how fast their ears grow and then the molds no longer sit snug.  Of course there is also the issue of keeping them in but...we're working on that (ha).

Life still is full of constant surprises, some good, others down right crappy but we are plugging along and looking forward to the start of school next week which makes life a great deal easier to focus on Mr.B and his immediate needs and therapies.

Friday, 24 August 2012

In Need of Spirit Overhaul

Our wonderful friend (and honorary family member) Leslie Mouncey is raising money for Heart and Stroke Foundation in honour of her Dad. They are looking for more 'riders' for their team and also gathering donations! Until this year I thought of Heart and Stroke for my Grandparents, it is also for our children! Braeden had heart surgery and suffered two strokes in his first two months of life, he is also the face of the Heart and Stroke foundation!

So our stay on Unit 2 was a short and sweet one this time around, only one night.  Hardly seemed worth the 10 hours in Emerge the day before aside from our warm welcome from out Unit 2 'Family'.  Mr.B had a good long sleep flat on his tummy in Emerge and through that managed to move some crud in his lungs around resulting in better air entry, the best he'd had for awhile!  He had a good, well sat'd night on Unit 2 and there wasn't much reason to keep him much longer than that.

We did get some thing accomplished while in for this tune-up however.  Dr.Brindle changed out Braeden's Mic Key (g-tube) for an Entristar which has a 'basket' in his tummy as opposed to a balloon from the last ones.  It wasn't a particularly nice experience watching it put in as it was bigger than his existing hole but he persevered (not that he's ever given much choice the poor duck!).  So far we've had a decent experience with it, it's not a user friendly as the g-tube or Mic Key but I am learning.  We did however have a massive retching episode last night after his feed and through my lack of knowledge (and panic) we literally had feed spraying the walls (my nursing friends can laugh at that!). 

Another thing we decided was to switch Mr.B's formula to Nutramigen AA (from A+) with the hopes of eliminating this damn diarrhea and slimy poops.  The AA is a completely broken down formula so it is much easier on his tummy.  Side effect so far?  He's flippin constipated again, which is how we started this whole cycle!  We are off to the Pediatrician this afternoon so I am hoping she'll shed some insight for us.

Mr.B however is his usual happy and full of light self.  He's so very forgiving for all of the hell he is put through (like 5 pokes to get a line then to only lose it 5 mins later).  I feel horribly guilty that I put him through that again in Emerge to only have him breathe better once upstairs.  This child has also had enough xrays so that he'll almost glow in the dark.  It make me concerned for the future with all the exposure he's had but what is the alternative?

I learnt the next day when he was on Unit 2 that he'd been screened for Cystic Fibrosis when he was a new born through genetics and it was negative.  I was more than a little annoyed that the Dr the night before had gotten me so wound up about it that I didn't sleep!  As it turns out (yes he could have it, no he couldn't, yes he could) that the genetics screen isn't a complete diagnosis and that kids that come back with a negative genetic screen could still have CF.  I'm not nearly as freaked out about it anymore, I spent the morning this week in the Respiratory Clinic with B and as I was waiting I was reading the walls for the CF Clinic of all the kids achievements and their stories.  Very touching and inspiring.  As it is the Respirologist that saw us this time doesn't see any major need for concern with CF (and she would know I would think) but they are still considering testing him (sweat patch test for secreting Sodium Chloride) next month when we have our next visit.

There are days when I dream for a diagnosis so we can have some sort of idea of what the future could hold but on the other hand I also realize it is a bit of a blessing some days not knowing.  Braeden is so full of life and love that he touches anyone that comes into his life, how can that not just be enough for now?  Ironic as I am feeling so run down these days and that my spirit isn't full.  I'm tired and just plain worn out!  I need to refresh my own spirit and I'm not sure how to go about doing that.  I am SO very blessed with our boys, they are my life and love and each time I kiss Braeden I am aware of how fortunate I am.  So what is it?  Not too sure at this point but I'll keep looking and plugging forward.  I have three amazing little creatures to love and a husband that works his heiny off so that I can be with said boys, life is good.  We are built to be survivors after all!

Tuesday, 21 August 2012

Sheer Blind Panic

Ironic that my last post had us coming out of hospital when this post has us going right back in!

Mr.B spent yesterday coughing here and there and gave Mike and I quite the scare last night when he woke up from a deep sleep choking.  We are pretty sure he aspirated as he was choking too hard not to have.  We certainly have had our share of heart-stopping moments this past week.

So back to Emerge this morning.  I let him 'sleep' through the night (meaning I was up with him 10 times while he coughed) and took him in this morning.  It was pretty much a no-brainer when I saw how hard he was working this morning on breathing.  All three boys and I trooped over to ACH for a day of fun (um, not).  They knew by noon that he was being admitted but it took almost 7 more hours to actually get him upstairs.  The unnerving thing (well one of many) is that his xray from two weeks ago looks the same today, it's not improved.  One would think that after having Pneumonia two weeks ago that one's lungs would improve, no?  The big boys hung with me for 7 hours in total and for what it was they did really well all things considered. 

Braeden had a really good nap on his tummy after Mike had picked the big boys up (both of who put up a fuss that they didn't want to leave after I heard all day 'can we go now?').  It seemed that sleeping on his stomach helped move some things around because by the time we got upstairs he was breathing pretty darn well (thank you once again Murphy)!

I don't think we are in for a long stay this time but I am never really sure of these things.  The thing is that it would be great to get to the bottom of his 5 weeks of diarrhea while we are there for our 'visit'.  The truly unexpected thing today, the absolute punch-in-the-gut, was the Pediatrician on Unit 2 tonight asked if he'd been tested for Cystic Fibrosis....um no...why???  Apparently CF causes issues in the guts as well as the lungs and can often present in the guts before lungs.  I am have become SO painfully aware of how little I knew about genetics over the past year.  I was under the impression (big ol' FALSE) that you had to have CF in your immediate family to be a carrier.  The sad part?  It would fit.  From what I've read, it would be one of our puzzle pieces and to say that terrifies me does not even come close to what I feel (am trying really hard NOT to swear in this posting).  So we'll see what the next few days brings, the tests are simple enough and at least non-invasive.  The other sad part?  It still wouldn't be a complete diagnosis.  Why I find CF devastating when Mr.B is a miracle in life itself I'm not sure.  I guess because CF gives me a more definitive time line and I'm not ready to come off the denial train just yet.

Unfortunately this wasn't our only 'excitement' this week.  My tears finally started this week due to a moment of sheer blind panic on Wednesday.  B's been having all kinds of issues with his feeding tube and it has been swapped out a few times now.  The main issue (that we've finally realized) is that the balloon inside his stomach keeps getting sucked into or stuck in his pylorus (lamens terms, bottom valve in the stomach).  As you can well guess this has been causing issues, most of which is that it keeps pulling bile into his stomach which is very wearing on the stomach lining and makes his body think that he has a full intestinal blockage which can shut down the intestines (can you say Ileus?) and tried to force everything upwards.  Keep in mind that because of his fundo surgery his stomach is already unnaturally small.  When he was in hospital last week we were having issues (again) with leakage from the stomach site and Dr.Brindle (surgeon extraordinaire) came up and took the water out of the balloon (inside the stomach), pulled out the g-tube, put it back in, and put the water back in.  Presto change-o!  The repositioning of it worked wonders and no more leakage. 

Well thank goodness I was there to witness that because on Wednesday I needed it.  I had B on the change table (where I ALWAYS check his g-tube positioning because even 1/2 a cm can make all the difference) and then into his tumble form (therapy chair) to eat.  He was a bit fussy while he was eating and I knew he was tired so when the feed stopped running I flushed his line and put him into bed.  Now normally this isn't an issue as his bed had a specialized wedge to keep him up at 20 degrees but for some unknown reason (at the time) I had my spidey sense go off and went in to find him retching up a storm.  Now to see a baby with a fundo retch is traumatic in and of itself as my child can NOT throw up, so picture you at your very sickest you ever been while not being able to vomit and that is what it looks like.  NO prob, crisis is generally averted by venting him.  I grabbed him up and put him on the change table to vent him (pat on my back, I'm getting good in this scenario, I hardly freak out when I see him retch anymore) to only find out that when I put the syringe in to vent him I am getting NOTHING out.  I just fed him 5 ounces of formula and nothing is coming out.  Now I am starting to panic.  Retching = not breathing.  I checked his tube and it had 'slipped' to 6cm, 2 1/2 cms from where it needed to be.  I couldn't pull it back, it was jammed in his pylorus and I did not know for the life of me what to do.  I considered calling 911 but realized that they couldn't get there fast enough before he 1) caused internal damage with the retching and/or 2) stopped breathing.  Hence the BLIND PANIC when I realized that the good ol' 911 wasn't a great option.  If you don't have 911 what the hell do you have???  I also realized (how I thought of all of this in nanoseconds I don't know) is that the paramedics might get there but they might not know what to DO also!  They are versed in g-tubes but it's not like they have many calls for them (if ever).

So I did the only thing I could think to do, yelled for help and got Ry to hold the venting syringe while I pulled the water out of the balloon, thus releasing the g-tube (while running the risk of it coming completely out).  Instant explosion of gas out of the tubing and such relief for all involved.  I obviously was more in control than I felt because Ry said he was getting bored having to hold the syringe for me!  I took the syringe back from Rylan, and he went back to the TV.  Braeden let out a huge sigh, stuck his thumb in his mouth and fell asleep.  And then the tears came and came and came.  I can't believe that I had to be in such a position when I'm obviously not medically qualified for it!  Poor Mike got a phone call of me sobbing telling him just to listen to what just happened.  I called the g-tube nurse and held it together till I had to leave my number for her to PLEASE call me.  When I did talk to her she did congratulate me on my quick thinking and reassured me that I'd done everything I could have but I DON'T EVER WANT TO BE IN THAT POSITION AGAIN!  I am NOT a nurse, have never been a nurse and (no offence my dear nursing friends) but don't ever want to be a nurse!  What it did win me is a trip back to the hospital to change out the tubing again for a mic key (skin level device) which we had to go back and have changed again on Thursday.  Dr.Brindle did call me at home (bless her super-busy-in-high-demand heart) to make sure I was okay and to explain that we might need to go to a completely different device altogether (one that doesn't have a balloon in the stomach).  Unfortunately these other devices are harder to insert and remove (of course).  And of course our appointment to discuss these other devices was today, our Emerge visit day.  At least Dr.B knows where to find us!

Needless to say, I am supposed to be getting my 'stress' under control.  I'm really not quite sure how my Doctor thinks I'm going to do this (not that he knows either).  I know I need help, I just don't know what form I need it in!  I need sleep, that much I know but it is rather illusive lately whether B is home sleeping or not.  I am tired and worn out but I did have someone kindly remind me this week that it could be worse.  Yup, really.

Friday, 10 August 2012

Home Again, Jiggity Jig

Home again, home again, jiggity jig...Mr.B impresses everyone again at his ability to do things 'his' way!

Thank you Dr.V, Rachel (NP) and all of our Unit 2 family! My sweet boy is asleep in his own bed where he belongs and can be kissed a thousand times a day!

This sweet boy gives so much life and light to us, I am so very thankful that he chose us and that we belong to him.

His voice is still pretty 'scratchy' and he is wheezy but his lungs are clear and his g-tube/intestines seem to be functioning well.  He got in a good visit but it is time again for him to be with us.

Onto the next chapter!

Thursday, 9 August 2012

Pneumonia, Ileus and G-tube leakage = Hospital

Braeden's had a rough couple of weeks with the last one being spent in hospital back on Unit 2.  He's been still having his intestinal issues since I last wrote and we've been trying to figure them out.  Two weeks ago we spent the weekend in Emerge to find out after a abdominal xray that he could have a possible Ileus (when the intestines stop working in one spot).  I had actually spent the night in Emerge and had gone home at 4am with B after taking him the evening before because he had been arching and screaming in pain.  By 6:30 am he was back to the screaming in pain and when I called the Homecare Nurse's line she called Emerge for me and then called me back to tell me that we shouldn't have been sent home due to the fact that he could have an Ileus which can be life threatening...great!  We were also experiencing issues with his feed pouring out of his g-tube site (not the tube, but where it goes into his skin).  Turned out that the g-tube was no longer in the right position and when I tried to change the water in the balloon (the part that holds it in his stomach) at the request of the surgeon on duty, it slipped easily and we thought the balloon had actually burst (which would result in the tube coming completely out).  While waiting for Dr.Eccles to come down to Emerge when she got a surgery break we had the g-tube taped to his stomach so it wouldn't come out.  Dr. Eccles came down and went to remove the tubing to find that it wouldn't come out.  She tried bursting the balloon and was unsuccessful at that.  It took many, many, many tries to get it out and B just kept going more and more blue.  I was in a room with a Surgeon and two Residents, no Nurse or RT.  I took it upon myself to turn up his O2 and commented non-stop that his colour did NOT look good.  When the tubing finally came out Dr.Eccles' comment was, "oh, he doesn't look great, I'd hate to know what his Sats are right now"....um, thanks??  I certainly was not terribly impressed!  The balloon on the old tube was misshapen when we looked at it after it had come out but it is hard to know if it was actually faulty inside of him or if it was due to the Dr's efforts to get it out.  We chalked it up to a faulty g-tube and went home.

Because of all of these intestinal issues and gas the decision was made to change his food to Nutramigen which is designed for babies with a cow's milk protein allergy.  It seemed to be making a great difference in the slimy poop but he got extremely gassy on it again after the first few days.

Braeden was showing signs of increased breathing on Saturday afternoon and I could hear some chest congestion through my stethoscope as well as a mild cough.  He was a bit fussy on and off for 10 hours, which for B generally means something is going on as he's such a complacent baby.  I knew I wasn't going to get much sleep worrying about him so I took him in for, what seems like, our weekly visit to the Emerge at Children's.  When it is a breathing issue they do take you right in which is good but I got some skeptical looks from the nurses as his air entry sounded good and his lungs sounded clear to them  We had a Clinical Clerk (step under a resident) this time that saw him and she was kind of excited at B's history as he is so complex.  An xray was ordered for chest and abdomen (to check for possible solutions to the poop issues) and the Emerge Dr poked his head in the room and said that "It's not looking good on the right side, I hope you packed an overnight bag" and I asked if he had aspirated and he said no that it looked like infection and left.  The Nurse came in shortly after and I asked her what exactly was going on and she came back to say that the right side looked 'junky' and it was pneumonia.  Ha!  Not just a paranoid Mom afterall (not that him actually being sick is celebratory!).  His blood work all looked great though so we knew that we were dealing with a viral infection which meant no quick cure (via antibiotics).

We arrived back up on the old stomping grounds on Unit 2 at 5am and we spent the next few days watching B get worse (since I'd caught it so early).  It is horrible watching your child cough and hack and struggle to breathe!  When he got settled on Unit 2 that first morning I waited until shift change and figured that I should go home for some sleep after being up for 25 hrs at that point.  Walking out of there and leaving Braeden behind was one of the worst feelings ever.  We got used to having him home and he got used to having me around 24/7 for five weeks straight so having to be separated again from him was physically painful.  The saving grace I had was that we had such a warm welcome back and one of my favourite Nurses was with him for a few of those days as well as Dr.Volmero was on rotation for the week.  Of course because life is full of complications as we also celebrated Rylan's 6th Birthday on Aug 6th with his party on the 7th, which made it hard for me to be in two places at once.  Thank goodness Mr.B is such a fighter and was forgiving through all of it and a huge THANK YOU to my wonderful sister, who was here for a visit for the week (with my nephew), for taking care of T and Ry so I could be with B more.

Being Mr.B though, pneumonia wasn't enough.  As he started to deal with the pneumonia he started having more intestinal issues and increased leaking around his g-tube site again.  He was put on pedialyte on a continuous feed to help heal his guts and to get past the Ileus.  I was not happy to hear that he'd have to take such a large step backwards in his feeds.  Dr.V was considering sending him down for an intestinal dye scan again that traces the intestines.  I had to laugh (in a not-so-funny way) as that was the test that he struggled in and Coded after it (by Dr.V nonetheless).  He was able to tolerate the pedialyte well though and he had his formula slowly reintroduced yesterday.  I was holding him yesterday and noticed that once again the g-tube site was leaking and I called the Nurse and the Nurse Practitioner in to have a look as it is clear fluid (formula is white) and you could hear it 'burping' out of the site.  Rachel took note and said she'd put a call into surgery for them to come and take a look and would call again to update them.  Braeden's mood was good and he fell asleep in my arms right away.  When he woke up and I turned him over I realized that both of us were soaked and that the tube was just leaking non-stop.  Rachel and Dr.V called Dr.Brindle (B's last surgeon) and she came down to take a look.  I explained what had been happening and that it was the exact scenario that had happened in Emerge  two weeks before and also noted that the bolster was not in the right position either (that it was off by a centimetre).  Dr.B got Rachel to draw the water out of the balloon and then she pulled the tube right out (much to B's displeasure).  She reinserted it again (really to B's displeasure) and the balloon was reinflated.  That seemed to be all it needed.  Dr.B figures that the balloon was slipping in his gut (due to reasons unknown really although there are many theories) and because his stomach is so small that a small movement of it could cause blockage in his stomach valve leading to and Ileus and and such.  She figures that the fluid was clear and odourless due to only the 'water' part of the formula escaping and the rest of it being trapped as it was thicker fluid (gross).  B was happy and there has been no more leakage since, let's just hope it stays put this time.  I check it's placement several times a day (each diaper change) so I'm not sure how it could have slipped unnoticed at home but it's working well now.  Dr.B said that I should get to know how to change out the g-tube myself and I told her she was crazy!  She said, "you saw how easy that was" and my response was that she'd done how many of these and she's not the 'mom'.  She thought that was pretty funny!  The things I never thought I would have to do as I am certainly not a Nurse for a reason!

The great news is that Mr.B has done a great bounce back in the last 24 hrs and, if his night goes well, he'll be ours to take home again tomorrow morning.  It's hard to believe it was only a week but I'll be starting out almost at square one in my confidence again once he comes back home.  The hope is to avoid Emerge for a few weeks at least this time and while it has been wonderful to see so many friendly faces on Unit 2 it is always better to just visit rather than stay!