Two weeks in ICU

Today marks two weeks since Elyse was moved to the ICU, and it feels like we are slowly making progress. The nitric oxide was discontinued on Tuesday, and Elyse tolerated it very well.  Yesterday they decided to try switching her back on the conventional ventilator, and that transition went well too.  The next few days should involve slowly weaning down the ventilation pressure until she is doing most of the work on her own, and ready to extubate.  On rounds today they were aiming for Saturday, but we all know a lot can change between now and then.

it takes a village...

 

Another thing that they are starting to wean off are some of the drugs that have been keeping Elyse sedated (Fentanyl, Ketamine and Medazepam, to name a few).  Unfortunately, because she has been on some pretty potent narcotics for an extended period of time, she runs a high risk of going through withdrawal from them.  The doctors have started her on a new drug (clonidine) which will help to ease some of the withdrawal symptoms, but it may be another long road to navigate.  We will just take it one day (and one challenge) at a time.



little friends keeping watch

MAPs, PIPs, and PEEPs...oh my!

I'm not exactly sure what I expected Elyse's recovery to look like, but I naively imagined something along the lines of "numbers are up, tube's out, let's go home".  Not even close.  We have now hit day 11 of intubation.  That's eleven days too many without a smile, or a snuggle, or even a glimpse into those beautiful blue eyes.  It is breaking my heart and we still don't know how much longer she will need to stay sedated.

                     a new friend

I think part of the problem is that we have always had her oxygen saturation numbers to watch as a reference of how well she was doing.  Now that those numbers have stabilized, the focus has shifted to the ventilator and out of our comfort zone.  The respiratory therapists (RTs) are great at trying to explain the ins-and-outs of the machine, but hearing all about mean airway pressure (MAP), peak-inspiratory-pressure (PIP), and positive-end-expiratory-pressure (PEEP) is enough to make your head spin.  Because of this, even though there is progress being made, it feels to be going very slowly.

The good news is that the RTs are happy with her progress, and are almost ready to switch her back onto the conventional ventilator, which is one step closer to extubation.  But first, they are going to trial Elyse completely off the nitric oxide today, which was used to help dilate the blood vessels in her lungs and increase blood flow.  In order to wean her off it completely, she will be given a dose of sildenafil (yes, Viagara for babies), to encourage her body to kick start it's own production of nitric oxide again.  If she tolerates this well, it is a good sign that her lungs are recovering -- fingers crossed and prayers being said that she is ready.

               hey NO, it's time to go!

Making progress

It seems like Elyse has finally turned the corner.  Her saturation levels remained in the mid-90's all day yesterday, and have been holding steady.  She is still on the jet ventilator, but they are starting to turn down the supplemental oxygen and ventilator settings to see how she does with less support.  Her oxygen levels have already been reduced from 100% to 40%, which is good progress.  Sounds like the next step will be to switch back to the conventional ventilator before they extubate -- but we may still be a few days from that.  She will dictate how fast or slow any of these steps will happen.

                   kisses for his sister

Emmett came in for a visit today, which I think was helpful for him.  You can tell he misses his sister, but we are trying our best to help him understand.  Pretty sure the highlights were the bubbling drainage machines and the urine bag!

                     ohhh, what's that?

We are so appreciative of all the positive thoughts and prayers being sent our way.  I found out that on her worst day they were seriously considering putting her on an ECMO machine (extracorporeal membrane oxygenation -- basically a lung bypass), and am so thankful that she turned when she did and it didn't get to that point.  We still have a long way to go, but at least she is finally heading in the right direction!

Limbo

I think Tom Petty said it best -- the waiting is the hardest part.  Waiting for this virus to run it's course.  Waiting for the antibiotics to kick in.  Waiting for her numbers to go up.  It feels like we have been stuck in limbo these last few days, with no big changes.  The bright side is that things haven't gotten any worse, but progress is slow.

The team hasn't made any major changes as of late.  Elyse is still sedated and on the jet ventilator, and the respiratory therapists seem to be happy with it.  She is also receiving regular doses of a drug called Pulmozyme to break up the mucus in her lungs and make it easier to suction out.  In order to help maintain an ideal body temperature, she is surrounded by a "Bair Hugger" forced-air warming blanket (I only just found out today that it isn't "bear hugger" like I always thought...although I still prefer that name, don't you?).

wrapped in a "bear hug"

Another thing the team is watching is her net fluid balance.  They would like to see her with a negative balance (i.e. more fluid going out than going in), to help "dry out" the extra secretions in her lungs.  She is already on a diuretic to help expel excess fluid, but another option being presented is to fortify her milk in order to maintain her caloric intake using a smaller volume of liquid.  Anyone who remembers our troubles with fortifier in the NICU will understand our hesitation, and so we are keeping that option off the table for now.

On a positive note, tonight saw Elyse's saturation numbers climb into the high 80's, and even 90.  Fingers crossed she is reaching the turning point, and her numbers continue in the right direction.

from top to bottom: heart rate, arterial blood pressure,

central venous pressure, oxygen saturation, respiratory rate 

One week

Today marks one week since we brought Elyse back to CHEO, and it seems like she is starting to get a reputation for being a little on the difficult side (if they only knew the half of it). You can tell the team is getting frustrated by the lack of marked improvement, and continue to try different things in the hopes that something will work better than the last.  All of her numbers are looking good, with the exception of her oxygen saturation which continues to hover in the 80's (ideally it should be in the mid- to high-90's).  One positive is that she is expelling carbon dioxide without issue, just not absorbing oxygen very well.

They decided to change the type of machine from high frequency oscillatory to high frequency jet ventilation yesterday, hoping that it may require less pressure and help to loosen the lung secretions.  So far she has not shown any real preference for one machine over the other, and her numbers remain the same if not a little worse.  Now they are talking about switching back to oscillatory, or even conventional ventilation, although also admit that it may just come down to giving her time.

          High frequency jet ventilator

In addition to the bronchiolitis and RSV, they have also found a few secondary infections which are being treated with antibiotics -- this poor kid just can't catch a break.  She keeps fighting the sedation and trying to wake up, which is great for a finger squeeze, but not great if she attempts to extubate herself.  For that reason they continue to adjust the sedation medications -- not just increasing the amounts, but also trying different ones too in order to try and minimize the severity of withdrawal she is going to experience when it comes time to wean off of them.

Round two (a.k.a. PICU is the new NICU)

If you hadn't noticed from lack of blogging, life got a whole lot busier once Elyse came home almost five months ago now.  It has been wonderful watching her grow and thrive, and most days her time in the NICU is just a distant memory.  That was, until last week.

Thanksgiving weekend

 

Having an almost-three-year-old brother in preschool means that Elyse has already had her fair share of runny noses and colds.  But when this one progressed from runny nose to fever and laboured breathing in the span of a day, we decided to take her in to the CHEO emergency room to be checked out (just for peace of mind, we said).

They obviously don't mess around with breathing issues, because after checking in at triage we bypassed the waiting room altogether and saw our first doctor less than 5 minutes after that.  Since her oxygen saturation level was low, they started her on oxygen and gave a few epinephrine masks to help open her airways.  She was admitted for the night, and continued to receive epi masks and suctioning every few hours.

the first of many epinepherine masks

 

The next day, Elyse continued to require support to maintain acceptable oxygen levels.  She fluctuated between loving the mask and falling asleep, to fussing the whole way through -- definitely not a happy camper.  Because of her rapid breathing, she was taken off feeds due to fear of aspiration, which certainly didn't help matters.  Testing came back with a diagnosis of bronchiolitis due to Respiratory Syncytial Virus (RSV) -- a common virus which, in most people, manifests itself as a common cold but hits babies and preemies much harder.

the one upside: no roomates

 

When it became apparent that current procedures just weren't cutting it, they decided to transfer her down to the Pediatric Intensive Care Unit (PICU) for more advanced support.  There they started her on a CPAP machine, which maintains a low level of air pressure to help keep the airways open and make it a little easier to breathe (she had used one on several short occasions in the NICU as well).  She responded well, but needed a small amount of sedation to stop her from constantly trying to pull the mask off her face.  The benefit was that she was finally able to rest comfortably, which we were all in need of.

back on the CPAP machine

 

In true dramatic Elyse fashion, we were supposed to be leaving the next day for a very dear friend's wedding in Guelph, in which I was honoured to be a bridesmaid.  With Matt's support and blessing I was still able to make the trip, while he stayed at the hospital and provided lots of updates.  I knew she was in the best of hands, and it was a joy to be a part of their beautiful day.

The doctors warned us that RSV is a nasty virus that tends to peak between days 5-7ish, which certainly seemed to be the case over the weekend.  As she continued to fight the virus and the secretions in her lungs made it hard to breathe, her oxygen saturation continued to drop.  It was decided to switch her over to a ventilator and give her even more of a chance to rest and recover.  During the procedure a small amount of air leaked into the chest cavity, which required the insertion of a chest tube on either side to help relieve the pressure.

pumpin' ain't easy

After a day on conventional ventilation they then switched to high frequency oscillatory ventilation, which is what she is currently on.  She is completely sedated and receiving a plethora of drugs, most of which I can not even pronounce let alone spell -- there are sedatives, muscle relaxants/paralytics, a diuretic, steroid, and antibiotic, to name a few.  At last count there were seven infusion pumps running and a large collection of wires and tubes  -- an NG and NJ for feeding/venting, two chest tubes, three monitoring probes, pulse oximeter and CO2 monitors, temperature probe, central IV line, arterial line and of course all the ventilation equipment.  When they say this virus is nasty, they sure aren't kidding!
 

her current setup on the oscillatory ventilator

(with a picture from Emmett taped to the monitor)

The good news is that the doctors remain optimistic that although she is on the sicker end of the spectrum, it is not alarming or unexpected and she should make a full recovery.  Right now it's just a matter of waiting for her to turn that corner.  It meant a lot to us having so many people thinking and praying for Elyse the first time around, if you have a few extra to send her way again it would be very much appreciated.  Hope to report back with a positive update soon.