Today was certainly a better day (as was yesterday) and Mr.B is getting to be more and more like his ol' self each day. It never fails to amaze me how he can simply 'bounce' back from needing critical care.
B's oxygen is now down to only 1 litre which is just so great. I'm sure we can wean it further tomorrow again and that he'll be able to come off it soon. I know he'd like to get his nostrils back again not to mention one fewer set of cords/tubes.
It's been a hard two days because I've been spending time in meetings for the Critical Care Strategic Network that I belong to so I've been missing my B. I did get my chance to tell B's story this morning to our group and it was very well received. This isn't the first time that I've 'presented' his story but this is the first time that I did it from a 'raw' perspective. I told it completely from the heart, reading from some of the early blog posts. The group today were all professionals within Critical Care in Alberta (aside from the other Patient and Family Advisor like myself). I wanted to really let it sink in how life looks on the other side of the bed in Critical Care, a true look at a Family's view.
It was an hour long presentation that I bawled my way through my dry (or wet rather) run of last night (thank you Ang for the songs). It is so shocking to me when I read back through the early blog postings to just how much my poor child had to endure. I lived it, right there in the midst of it and I still find it astounding. There were lots of tears shed today (most of them not actually mine!) so I think that it was a success! :)
Part of what I missed yesterday with not being here was that our wonderful Dr.B came and swapped out B's g-tube for us. B's tube has been leaking since this admission (which it usually does with being sick) but we couldn't find a reason for it. We LOVE our AMT mini one (that I specially ordered through the US because it's not sold in Canada) but I was willing to go back to the Mic-key and give it a shot (the thought was that the internal balloon was maybe misshapen in the old one). There is no real reason to why the Mic-key is working and the AMT is not but we've no longer got leakage around the stoma which is great news.
For those of you not too familiar with g-tubes, the 'stoma' is the tract that the tube sits in (it is the tube from the skin into the stomach). If there is leakage out the stoma then the child has stomach acid and food coming back out and it can break down the skin quickly forming sore spots.
The Residents weren't too happy with me that I didn't want them to start using the new tube yesterday, that I wanted to give his stoma one more day of rest (tube removal and insertion is still painful after two years). I held my ground though (not like I wouldn't have) and we started running Pedialyte today and so far so good. He's now on a continuous flow of Pedialyte and if he's still not leaking he'll be back on his regular formula by morning. It will take another few days to work back up to his 'normal' feedings but we're on the right path.
Between weaning the oxygen and (hopefully) starting feeds tomorrow we're (me) feeling good that we might only need to be in another few days. I'm happy to take his feeds slow but am also ready to go home away from all the other 'germy germs' here.
Now to just start again with getting his weight back up...
From Our (Unit 2) Home To Yours...
Friday, 21 March 2014
Tuesday, 18 March 2014
A Lovely Rotten Day
It was a good day for Mr.B, not so much his Momma!
My day started out by stepping in cat poop (lovely) and it just got better from there! Needless to say my van is now in the shop and the cement barrier won, I did not. Gotta love (not) heavy spring snowfalls that leave amazing ice rinks!
That being said B had a good day and that is what matters. He's been taken down to 1.5 litres on his oxygen this evening with success so far (we'll see when he falls asleep). His energy level is still increasing and he's feeling in a pretty good mood for the most part (he is 2 after all!).
The major issue that we're still having (since this admission) is that his g-tube is leaking. It started out leaking with his feeds but those have been stopped for days now (due to sore tummy with his bugs) and now it's leaking all the time just with his regular stomach fluids (nothing going into the tube). It is very hard to know what the 'issue' is because from the outside it looks great. He is crunching over in pain as soon as something does go into it though and he is in an upright position.
Best case scenario is that is the device is faulty (balloon is warped maybe?) and worst case scenario is another fistula has formed or is forming. I did feel a WHOLE lot better after seeing Dr.B (surgeon) today and talking to her about it. She is going to change out his device tomorrow to one similar and see if there is a difference. We'll also do a contrast study (dye in the tube) to see if we can see any 'issues'.
It was a disappointing day in the sense that we had to miss out on our seating appointment for his wheel chair fitting. He's got this awesome, very expensive wheel chair downstairs and we can't have it until he gets fitted for it. They said no to having him done today something about him having three viruses...I guess that makes sense!
The nice thing is though? I'm sitting here in the dark, listening to our friend (and amazing pianist/composer) Danny Wright's lullaby cd and listening to him play quietly in his crib. I'm relaxed and happy whenever this little bum is near (and he's not stressing me out!). It is always a good way to end a rotten-ish day.
A huge thank you for Kelly for rescuing me, the damsel in distress this morning (after my 9 yr old told her Mom had crashed the car). To Sumyu and Rachel for making me the most wonderful hospital snacks that fit with my eating routine (gotta get fit by 40 after all) and for Rachel as well for taking and feeding my big monsters yesterday (again!). The photos are also compliments of Justine! :)
At the end of the day, even a rotten one, we are blessed.
From Our Home (Unit 2) To Yours...
My day started out by stepping in cat poop (lovely) and it just got better from there! Needless to say my van is now in the shop and the cement barrier won, I did not. Gotta love (not) heavy spring snowfalls that leave amazing ice rinks!
That being said B had a good day and that is what matters. He's been taken down to 1.5 litres on his oxygen this evening with success so far (we'll see when he falls asleep). His energy level is still increasing and he's feeling in a pretty good mood for the most part (he is 2 after all!).The major issue that we're still having (since this admission) is that his g-tube is leaking. It started out leaking with his feeds but those have been stopped for days now (due to sore tummy with his bugs) and now it's leaking all the time just with his regular stomach fluids (nothing going into the tube). It is very hard to know what the 'issue' is because from the outside it looks great. He is crunching over in pain as soon as something does go into it though and he is in an upright position.
Best case scenario is that is the device is faulty (balloon is warped maybe?) and worst case scenario is another fistula has formed or is forming. I did feel a WHOLE lot better after seeing Dr.B (surgeon) today and talking to her about it. She is going to change out his device tomorrow to one similar and see if there is a difference. We'll also do a contrast study (dye in the tube) to see if we can see any 'issues'.
It was a disappointing day in the sense that we had to miss out on our seating appointment for his wheel chair fitting. He's got this awesome, very expensive wheel chair downstairs and we can't have it until he gets fitted for it. They said no to having him done today something about him having three viruses...I guess that makes sense!
The nice thing is though? I'm sitting here in the dark, listening to our friend (and amazing pianist/composer) Danny Wright's lullaby cd and listening to him play quietly in his crib. I'm relaxed and happy whenever this little bum is near (and he's not stressing me out!). It is always a good way to end a rotten-ish day.
A huge thank you for Kelly for rescuing me, the damsel in distress this morning (after my 9 yr old told her Mom had crashed the car). To Sumyu and Rachel for making me the most wonderful hospital snacks that fit with my eating routine (gotta get fit by 40 after all) and for Rachel as well for taking and feeding my big monsters yesterday (again!). The photos are also compliments of Justine! :)
At the end of the day, even a rotten one, we are blessed.
From Our Home (Unit 2) To Yours...
Monday, 17 March 2014
More Sun Then Rain
Somebody has found his sillies again...any guesses who?
B's little body is still very much exhausted but he's finding little bursts of energy which are encouraging. He's also gotten his 'flirt' back on with all the 'girlfriends' so life isn't too rough.
His lungs are still audibly wheezy and such but the RT said that internally they are certainly sounding better. They weaned his oxygen down to 2 litres today without any incidence (and literally as I'm typing this he has his first desat to 85 while sleeping!!!).
They've upped his TPN amount and lowered his overall IV fluids to get him more nutrition. I wasn't here today when the g-tube Nurse came by but they suggested using meplex around his stoma to stop the leakage but when I got here tonight his sleeper was soaked and the meplex was hanging off (doesn't do well when wet). So the stoma is still leaking a good deal even though he's only getting the odd med/flush through it. I'm not too sure why at this point. The balloon seems intact and even had more fill in it then normal. I'm curious if something is going on internally, some breakdown on the inside maybe. I'm hoping surgery will be by tomorrow so that I can show them and pick their brains. We can't get B back onto his g-tube feeds until it is resolved (or at least found a reason). TPN is great in the meantime but it is only a short term solution when your are running it through a PIV.
It's nice to see our boy coming back again, even though he's sounding rough. He is pulling himself up on his knees and certainly behaving like a 2 yr old when he's annoyed! I did have to tell him he's not allowed to throw the projectiles (toys, syringes, etc) at the student nurses yet as they're not paid!
A large thank you to my friend Peter who came by to check on Mr.B and brought his Kalimba with him for B to enjoy. B loves music so much and it nice to see him laying there enjoying Pete's playing.
No news from Cardiology today either, but that is a good thing it means they are not concerned. They have pulled back a bit on the steroids that they are administering and it has seemingly made a difference. His heart rate is still low but not scary low like it was yesterday.
Slowly but surely our Bug is working on beating his bugs! The crummy part is that we've got a seating clinic appointment tomorrow for B's new wheelchair (yay!!!) but they won't let us go down to it (something about having three viruses and being contagious...). I'm really hoping that they can come up and at least do the initial fit for us! So exciting!
Hoping that tomorrow brings more sunshine as much as I like dancing in the rain, this Momma's tired out.
From Our Home (Unit 2) To Yours...
B's little body is still very much exhausted but he's finding little bursts of energy which are encouraging. He's also gotten his 'flirt' back on with all the 'girlfriends' so life isn't too rough.
His lungs are still audibly wheezy and such but the RT said that internally they are certainly sounding better. They weaned his oxygen down to 2 litres today without any incidence (and literally as I'm typing this he has his first desat to 85 while sleeping!!!).
 |
| Diaper snacks?! |
They've upped his TPN amount and lowered his overall IV fluids to get him more nutrition. I wasn't here today when the g-tube Nurse came by but they suggested using meplex around his stoma to stop the leakage but when I got here tonight his sleeper was soaked and the meplex was hanging off (doesn't do well when wet). So the stoma is still leaking a good deal even though he's only getting the odd med/flush through it. I'm not too sure why at this point. The balloon seems intact and even had more fill in it then normal. I'm curious if something is going on internally, some breakdown on the inside maybe. I'm hoping surgery will be by tomorrow so that I can show them and pick their brains. We can't get B back onto his g-tube feeds until it is resolved (or at least found a reason). TPN is great in the meantime but it is only a short term solution when your are running it through a PIV.
It's nice to see our boy coming back again, even though he's sounding rough. He is pulling himself up on his knees and certainly behaving like a 2 yr old when he's annoyed! I did have to tell him he's not allowed to throw the projectiles (toys, syringes, etc) at the student nurses yet as they're not paid!
A large thank you to my friend Peter who came by to check on Mr.B and brought his Kalimba with him for B to enjoy. B loves music so much and it nice to see him laying there enjoying Pete's playing.
No news from Cardiology today either, but that is a good thing it means they are not concerned. They have pulled back a bit on the steroids that they are administering and it has seemingly made a difference. His heart rate is still low but not scary low like it was yesterday.
Slowly but surely our Bug is working on beating his bugs! The crummy part is that we've got a seating clinic appointment tomorrow for B's new wheelchair (yay!!!) but they won't let us go down to it (something about having three viruses and being contagious...). I'm really hoping that they can come up and at least do the initial fit for us! So exciting!
Hoping that tomorrow brings more sunshine as much as I like dancing in the rain, this Momma's tired out.
From Our Home (Unit 2) To Yours...
Sunday, 16 March 2014
Out of the Hole and Through the Dark Forest
I literally was on my way out the door last night to get a few hours sleep when I noticed B's heart rate (arrhythmia) was 'odd'. I called in his Nurse and she watched the monitor, saw what I saw and then checked his heart with the stethoscope and heard what I heard.
My heart was in my throat, what now?? It wasn't happening often, just every once in awhile and I knew both the night Nurse and the Charge Nurse would watch it closely so I came home feeling so ill. I was so far past exhausted and so sick with worry that I knew if I didn't at least lay down I was going to be useless today.
I may have called the hospital once or twice from home but I did come home and laid in a quiet bed for a few consecutive hours. I told my husband that I hadn't heard him leave this morning and he laughed saying that we'd had a conversation...oops. I asked what about and he said that I was wondering where I was...yup, sleep deprivation is not a good thing.
It was a rough start to the day (lots of tired Momma tears) and I spent the good part of the morning/afternoon watching B's monitor as it repeatedly beeped off 'irregular heartrate'. As the day progress so did the frequency of the irregularities. It got to the point where his heart rate was 'normal' only a fraction of the time it was 'irregular'. His rates were jumping from 120's and down to the 80's and back up again. When he started sitting in the 60's I got my annoyed Momma pants on and stomped my foot a bit. No one could give me an answer to what we were looking at until we had an ECG done and no one could give me and ECG because the ward was so busy.
I was trying to be so patient as I knew that the Residents were busy but when his heart rate wasn't coming up from the 60's or 70's I was starting to really get worried (he usually sits around 120 when he's awake). His Nurse was trying really hard to get the ECG done and tracked down the Resident we needed.
We got the leads on and she kept them on for over 5 mins trying to get the best reads. She wasn't overly concerned but I was still very concerned, this is a very ill child with two Congential Heart Defects that has been on a tonne of drugs over the past few days.
At the end of the ECG Dr.V actually poked her head in the room since she'd seen B was still admitted and we'd not seen her since Emerge. All it took was a 5 min conversation with her and my stress decreased dramatically.
Long story short, B's 'waves and bumps' are where the need to be on the ECG but his heart rate is just in a Brachycardia state (very low heart rate). That's the extreme opposite of what we are used to, B's usually at risk for Tachycardia for pete's sake!! They believe the cause is from all of the hard core steroids the are administering him right now to keep his lung function up. We've gone down to doing 5 puffs of ventolin every 2 hours now (instead of hourly) and with that difference it isn't yanking his heart rate up to balance out the steroids taking it down...something like that.
Cardiology with review it in the morning and we'll go from there. In the meantime he's being watched.
The other main issue that we're having is that B's been unable to feed for over three days now. We started running Pedialyte yesterday with no success and to even put meds and a flush through his g-tube is causing him discomfort. It was suggested today that we put an NJ tube in (through the nose into the intestines) to which the Dr got a very loud 'nope' from me. We've been there, and done that. Not to mention the kid is maxed out on oxygen and yet we want to plug up one of his nostrils why?? They decided that we'd revisit it tomorrow and I asked for TPN to be started since we've got a decent IV.
It took my 5 min conversation with Dr.V to get that TPN order in and started! Yay! Within 2 hours, I kid you not, we had our B back. He's exhausted and his lungs are still very bad but his personality was back...big Momma tears.
As I told my mother-in-law tonight, we are not out of the woods by any means but at least we're out of this huge hole for now and can start to move forward (I hope).
I am feeling the most relaxed that I've been in a week (which isn't saying much really) but some of that has to do with B being, well B and for the 5 hours that my friend Rachel came and just spent with me, beside me. My children were well tended to today with Kelsey taking them on a grand adventure and for Justine for covering off time at ACH again this morning (on her other day off!).
Out of the hole and through the dark forest...
Click here to the Facebook Page for the cutest video of our B 'purring'...
From Our Home (Unit 2) To Yours...
My heart was in my throat, what now?? It wasn't happening often, just every once in awhile and I knew both the night Nurse and the Charge Nurse would watch it closely so I came home feeling so ill. I was so far past exhausted and so sick with worry that I knew if I didn't at least lay down I was going to be useless today.
I may have called the hospital once or twice from home but I did come home and laid in a quiet bed for a few consecutive hours. I told my husband that I hadn't heard him leave this morning and he laughed saying that we'd had a conversation...oops. I asked what about and he said that I was wondering where I was...yup, sleep deprivation is not a good thing.
It was a rough start to the day (lots of tired Momma tears) and I spent the good part of the morning/afternoon watching B's monitor as it repeatedly beeped off 'irregular heartrate'. As the day progress so did the frequency of the irregularities. It got to the point where his heart rate was 'normal' only a fraction of the time it was 'irregular'. His rates were jumping from 120's and down to the 80's and back up again. When he started sitting in the 60's I got my annoyed Momma pants on and stomped my foot a bit. No one could give me an answer to what we were looking at until we had an ECG done and no one could give me and ECG because the ward was so busy.
I was trying to be so patient as I knew that the Residents were busy but when his heart rate wasn't coming up from the 60's or 70's I was starting to really get worried (he usually sits around 120 when he's awake). His Nurse was trying really hard to get the ECG done and tracked down the Resident we needed.
We got the leads on and she kept them on for over 5 mins trying to get the best reads. She wasn't overly concerned but I was still very concerned, this is a very ill child with two Congential Heart Defects that has been on a tonne of drugs over the past few days.
At the end of the ECG Dr.V actually poked her head in the room since she'd seen B was still admitted and we'd not seen her since Emerge. All it took was a 5 min conversation with her and my stress decreased dramatically.
 |
| It's hard to get a heart rate when it's in your hands little boy |
Long story short, B's 'waves and bumps' are where the need to be on the ECG but his heart rate is just in a Brachycardia state (very low heart rate). That's the extreme opposite of what we are used to, B's usually at risk for Tachycardia for pete's sake!! They believe the cause is from all of the hard core steroids the are administering him right now to keep his lung function up. We've gone down to doing 5 puffs of ventolin every 2 hours now (instead of hourly) and with that difference it isn't yanking his heart rate up to balance out the steroids taking it down...something like that.
Cardiology with review it in the morning and we'll go from there. In the meantime he's being watched.
The other main issue that we're having is that B's been unable to feed for over three days now. We started running Pedialyte yesterday with no success and to even put meds and a flush through his g-tube is causing him discomfort. It was suggested today that we put an NJ tube in (through the nose into the intestines) to which the Dr got a very loud 'nope' from me. We've been there, and done that. Not to mention the kid is maxed out on oxygen and yet we want to plug up one of his nostrils why?? They decided that we'd revisit it tomorrow and I asked for TPN to be started since we've got a decent IV.
It took my 5 min conversation with Dr.V to get that TPN order in and started! Yay! Within 2 hours, I kid you not, we had our B back. He's exhausted and his lungs are still very bad but his personality was back...big Momma tears.
As I told my mother-in-law tonight, we are not out of the woods by any means but at least we're out of this huge hole for now and can start to move forward (I hope).
 |
| Rachel watching over our B |
I am feeling the most relaxed that I've been in a week (which isn't saying much really) but some of that has to do with B being, well B and for the 5 hours that my friend Rachel came and just spent with me, beside me. My children were well tended to today with Kelsey taking them on a grand adventure and for Justine for covering off time at ACH again this morning (on her other day off!).
Out of the hole and through the dark forest...
Click here to the Facebook Page for the cutest video of our B 'purring'...
 |
| Yay for TPN! |
From Our Home (Unit 2) To Yours...
Saturday, 15 March 2014
Waiting For the Shoe to Drop
I hate sitting here waiting for the other shoe to drop...I feel like we are sitting on the edge of our seats here.
 |
| I didn't quite realize how much stress can come across in a photo |
B had a decent morning but again this afternoon he got very lethargic and (mostly) unresponsive for over 5 hours. Everyone keeps reminding me that he's tired and I get that, he's exhausted naturally but I can't stop my 'spidey senses' that there is something more in the picture here. He doesn't want to be held, he doesn't want his Momma and he was completely unresponsive to his big brothers when they came into his room. Maybe I'm wrong, I'd certainly be happy to be wrong.
I finally asked for a CBC (blood work) to be done and a blood gas since he's so tired and having desats again. Blood work isn't any worse nor is his blood gas, which is great but now his blood pressure is up tonight.
I just changed his bum (I've got cold hands), his Nurse did his full assessment and I gave him his 5 puffs of ventolin all with no real response from him (cried when I started the ventolin because it is on his face).
They did start a run of Pedialyte in his g-tube this afternoon (only 10mls an hour) but he was having none of it. He was pulling at his g-tube and crying, it just hurts to have anything in his tummy. We also went from straight drainage (g-tube open to drain) to having food put in with no time in between to clamp him. Kinda missed that step of clamping off the tube to see if he can even handle his own secretions in his tummy (didn't even cross my mind). So food (Pedialyte) is stopped for now and I've asked about TPN (IV nutrition). I'm not keen on TPN, it's not great but he needs something. My poor boy has been without food for three days and is rapidly losing weight (again).
He's still working very hard to breathe (indrawing and nasal flaring) so he's burning up calories there too. It's not been decided if the ventolin is really making that much of a difference so we've pushed it back to every 2 hours (as opposed to hourly) so we'll see through the night if it makes a difference. I'm not expecting a dramatic improvement but I get very concerned when B has no personality aside from whining in discomfort or just sleeping through everything.
None of this helps as well when my own gas tank is empty. I'm trying to get rest but when B's ill my brain doesn't shut down for very long to let me truly 'rest' (not to mention he's checked every 1/2hr when I'm at the hospital). I'm trying to take care of myself through this, I'm trying to ask for help (thank you so much to Justine for working today, for Lorna for the goodies and feeding my children and Sumyu for the enchiladas in my oven).
Please keep our sweet boy in your thoughts. He's such a strong kiddo but even the strongest need to rest at times too. My greatest fear (in this moment at least) is that he'll continue to be pushed (working hard to breathe) on the 3 litres and finally just crash because his little body is so tired. I'm trying to be positive, think positively but I'm know I'm certainly stressed and exhausted.
I hate when I get like this because poor Rylan gets the brunt of my Mommy grumpies. He's just being a 7 yr old boy but his Momma has no patience for it (which is not good for Momma guilt when reflecting on another long day). So please too keep our sweet Rylie in your thoughts he just trying to be a kid even though he's missing his brother.
Our guardian of a big brother Torin is struggling with not having his Mr.B at home. Torin is fiercely protective over B and is our Mr.B whisperer. There's been many tears over the past few days so I know that this too is taking a toll on him. Please keep our protector T in your thoughts too, he needs some lifting up.
Another long sleepless night ahead but there is hope in my heart that tomorrow is another day, a better day.
From Our (Exhausted) Home (Unit 2) To Yours...
RSV, Adenovirus, AND EnteroRhino...SPEECHLESS
Those of you that have followed us for some time (some since the beginning), thank you and those of you that are just joining us, thank you. What those of you that have been following for awhile will know and what those of you that are new will find out is that this child is a Boy Wonder in every sense of the word. At some point I hope he'll realize he doesn't need to challenge Dr's around every corner he turns.
We got Mr.B's viral panel back late yesterday afternoon. One would think (as I thought) that I would feel relief knowing what we are dealing with...(you might want to sit for this or be away from small children because you might let a bad word out!)...
Mr.B tested positive for:
Respiratory Syncytial Virus (RSV)
RSV (respiratory syncytial virus) is a virus that infects the lungs and airways (breathing passages). RSV can affect anyone of any age, but it's most common in infants and young children. In fact, it's so common that almost all children have been infected with RSV by the age of three.
RSV is usually a mild disease that goes away on its own. In very young children RSV can sometimes lead to serious infections like pneumonia or bronchiolitis (a swelling of the bronchioles — the smallest air passages of the lungs).
Warning signs of a serious RSV infection
These signs may mean your child has a more serious case of RSV. Get emergency help right away if your child has:
AND...
Adenovirus:
Adenoviruses are a group of viruses that can infect the membranes (tissue linings) of the respiratory tract, eyes, intestines, and urinary tract. They account for about 10% of acute respiratory infections in kids and are a frequent cause of diarrhea.
Depending on which part of the body is affected, the signs and symptoms of adenoviral infections vary:
Febrile respiratory disease (check), an infection with fever of the respiratory tract, is the most common result of adenoviral infection in kids. .
Adenovirus often affects the lower respiratory tract as well (check), causing bronchiolitis, croup, or viral pneumonia, which is less common but can cause serious illness in infants. Adenovirus can also produce a dry, harsh cough that can resemble whooping cough (pertussis) (check).
Gastroenteritis (check) is an inflammation of the stomach and the small and large intestines. Symptoms include watery diarrhea, vomiting, headache, fever, and abdominal cramps.
Genitourinary infections (check, B's lack of urine output): Urinary tract infections can cause frequent urination, burning, pain, and blood in the urine. Adenoviruses are also known to cause a condition called hemorrhagic cystitis, which is characterized by blood in the urine.
AND MORE...
AND...
Entero Rhinovirus:
(this is the lovely virus that ended us up in PICU a year and a bit ago on a ventilator for 10 days, with another three weeks in hospital)
More than any other illness, rhinoviruses (rhin means “nose”) are associated with the common cold. Rhinoviruses may also cause some sore throats, ear infections, sinus infections, and to a lesser degree, pneumonia and bronchiolitis (infection of the small breathing passages of the lungs).
 |
| Emerge entertainment |
We got Mr.B's viral panel back late yesterday afternoon. One would think (as I thought) that I would feel relief knowing what we are dealing with...(you might want to sit for this or be away from small children because you might let a bad word out!)...
Mr.B tested positive for:
Respiratory Syncytial Virus (RSV)
RSV (respiratory syncytial virus) is a virus that infects the lungs and airways (breathing passages). RSV can affect anyone of any age, but it's most common in infants and young children. In fact, it's so common that almost all children have been infected with RSV by the age of three.
RSV is usually a mild disease that goes away on its own. In very young children RSV can sometimes lead to serious infections like pneumonia or bronchiolitis (a swelling of the bronchioles — the smallest air passages of the lungs).
Warning signs of a serious RSV infection
These signs may mean your child has a more serious case of RSV. Get emergency help right away if your child has:
- trouble breathing (check)
- fast, rapid breathing (check)
- wheezing (check)
- deeper and more frequent coughing (check)
- blue lips or fingernails (check)
- dehydration (check)
- difficulty breast feeding or bottle-feeding (check, g-tube feeding)
AND...
Adenovirus:
Adenoviruses are a group of viruses that can infect the membranes (tissue linings) of the respiratory tract, eyes, intestines, and urinary tract. They account for about 10% of acute respiratory infections in kids and are a frequent cause of diarrhea.
Depending on which part of the body is affected, the signs and symptoms of adenoviral infections vary:
Febrile respiratory disease (check), an infection with fever of the respiratory tract, is the most common result of adenoviral infection in kids. .
Adenovirus often affects the lower respiratory tract as well (check), causing bronchiolitis, croup, or viral pneumonia, which is less common but can cause serious illness in infants. Adenovirus can also produce a dry, harsh cough that can resemble whooping cough (pertussis) (check).
Gastroenteritis (check) is an inflammation of the stomach and the small and large intestines. Symptoms include watery diarrhea, vomiting, headache, fever, and abdominal cramps.
Genitourinary infections (check, B's lack of urine output): Urinary tract infections can cause frequent urination, burning, pain, and blood in the urine. Adenoviruses are also known to cause a condition called hemorrhagic cystitis, which is characterized by blood in the urine.
AND MORE...
AND...
Entero Rhinovirus:
(this is the lovely virus that ended us up in PICU a year and a bit ago on a ventilator for 10 days, with another three weeks in hospital)
More than any other illness, rhinoviruses (rhin means “nose”) are associated with the common cold. Rhinoviruses may also cause some sore throats, ear infections, sinus infections, and to a lesser degree, pneumonia and bronchiolitis (infection of the small breathing passages of the lungs).
Children may also develop symptoms such as
- Sneezing (check)
- A mild fever (101°F–102°F or 38.3°C–38.9°C) (check)
- Headaches (probably, check)
- Sore throat (check)
- Cough (check)
- Muscle aches (check)
- A decrease in appetite (check)
How? How? How does ONE child (Mr. Talented B) end up with ALL THREE at ONCE???
We've always known that B does things in his own way, on his own time but man, this one has stumped me! Having ONE of these would stress me out, having all three? Off the charts.
What does this mean? Well it means that B is one sick kiddo and that we've got a very long haul (is the assumption) back to wellness ahead of us. His body is obviously very tired and very run down right now.
The AMAZING news? He's doing better in terms of moving some air in his lungs. He's able to maintain his sats for the most part on the three litres of oxygen and he's finally responding to the non-stop (every hour) ventolin boluses. He still is really only using one lung for most of the work (due to the illnesses clogging his lungs) but he's doing it.
He had another long night in terms of lack of sleep but he didn't need any other intervention (like c-pap or more). The STEP (ICU) Team was happy with what they saw at 1am (and again at 6am). They are even at the point that they are considering discharging him (from ICU care only) this afternoon.
We're not out of the woods by any stretch, it is very possible for this to turn again on us on a dime, but for now, there is hope in my heart.
The fact that B is fighting all three of these and (seemingly) winning? Well it makes the tears fall freely down my face. Any one of these viruses could set him back months and to be fighting all three back with a vengeance? This child astounds me.
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| This is about the right energy level... |
Thank you everyone for your continued support and encouragement. Thank you to those of you that have gone over and above to care for us (again) through another one of our hurdles (Laine K, Kristina Mc, June (Kelsey) O, Lorna Z, Ashley (and Rene) R. and Tara (and Lorraine) A. I can't tell you (again) how blessed we are for those of you that offer us help in our times of need, so many of you go over and above. Thank you, thank you, thank you.
From Our (Stressed Out Unit 2/ICU Bed) Home To Yours...
Friday, 14 March 2014
My Sweet Sick Boy
My Dear Mr.B,
I know it's been a month since I last left you a message to your future self on here and it's not for a lack of happenings, just more for a lack of time (I'll write an update post and pictures of our adventures in the past month I'm sure).
What sucks is that I have time now because you are laying beside me in your hospital bed, struggling to breathe. It's been a long time little Love since your Momma has been this worried about you. I don't know how it is that after more than two years you can still catch us all so off guard!
I brought you in on Monday to Emerge because you were visibly struggling and working harder to breathe. I dropped the big boys off at school and brought you into Emerge. *You know you are a parent of a complex care kid when you do other things that need to get done in life first before coming into Emergency* It was pretty clear pretty quick that you needed to be admitted but what wasn't clear was where to put you because (once again) the hospital was 'full'. We did get our expected diagnosis of pneumonia and we did our 12 hour stint in order to get a bed up on our Unit 2.
Aside from not peeing for such long stretch of time and working a bit harder to breathe, you actually didn't look/sound that bad. They did start you on IV antibiotics (5 IV's later in Emerge) and Tamaflu to cover all of your bases.
We cruised through Tuesday and Wednesday thinking that the illness would 'peak' and pass. We even had a good day yesterday and you actually got enough of a burst of energy to get up and play on your knees in the crib for short bursts. I made the mistake (?) of even announcing that we seemingly hit out peak and you were rounding the corner (to health).
We certainly rounded a corner last night but it was not one to health at all, the direct opposite. As I said my little duck, it's been a long time since I've been this worried about you. You got really sick really quite fast (over a few hours) last night and had your night team jumping all night. I knew by 11pm last night that we were certainly in troubled waters and that we'd most likely be headed downstairs to the PICU.
The ICU team did watch you as well overnight but they were confident that Unit 2 was still an okay place to be (even though you are maxed out on your oxygen here). We got kind of mixed reviews on what your chest x ray showed. PICU thought it was more a showing of very nasty pneumonia but the Unit thought that maybe we were looking at a pneumothorax. Neither were particularly promising but we couldn't be sure until Radiology had a look at your film. I knew how very ill you felt because you've not really fought any of your xrays or tests (and blood gases are awful!).
You are getting round the clock ventolin (5 puffs every hour), IV steroids now and a new, bigger antibiotic. Through all of this there has really been no significant change. We do know now it is an awful, vicious pneumonia but we still don't know the type. It's frustrating to me that they did all of the bloodwork and such on Monday and we still don't have our 'bacteria' or 'virus' cause. I don't know why I feel like I need a name, I just do. It won't change the protocol but at least I can give this awfulness a name and can direct some energy towards that.
It's been a very long time since I've seen you this sick, this pale and this unresponsive at times. What I need you to do now Sweet Boy is to tell this bug who is in charge and to take a hike.
You are still sitting on the cusp of ICU and still very much in the scary zone. My biggest fear is that your little body will just get simply too tired to keep going and you'll end up intubated. I'd much rather put you (torture) on C-pap or even a ventilator then wait too long and have to intubate you because your little body gets too tired.
All we can hope is that time is on our side, that you'll fight this bug with all that Superhero B strength. You still amaze me while you are so ill that you can still do your nose scrunchers and funny faces for your favourite docs.
Love your biggest fan, your Momma
From Our Home (Unit 2/ICU) To Yours...
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