Thursday, August 16, 2012

Home!

We have been home now since Saturday the 4th of August. I haven't written anything because we just seem to jump back into the chaos! Muriel is doing very well. At first, she was uncomfortable and we began giving her the prescribed pain medication but she has been off of that now for four days. She is still taking lasix, a diuretic, and prevacid for acid reflux, along with enalapril for her heart and blood pressure.

Muriel's meds. fed through NG tube
We are attempting to adjust her ever changing feeding schedule. Her weight is 12lb., 10oz. as of Tuesday. She is up in weight from 12lbs., 6oz., her weight when we returned from the hospital. Our fabulous home health nurse, Nancy, who has been with us since our first surgery is helping us to take steps toward removing her NG tube! Before this most recent surgery we had worked Muriel up to taking 45ml in her bottle for a total of about 90ml per feeding. Muriel is now up to 70ml of milk in a bottle and the remaining 30-40ml goes into her tube. That may not sound like much, but considering she used to only have 10ml in her tube after the first surgery, we've come a long way baby! In addition to the feeds during the day, at night she is on a continuous feed using a pump. Until we can replace those calories by increasing what she eats during the day, the NG tube is here to stay.

Nurse Nancy
This has been a challenging, exhausting, and at times frustrating endeavor to say the least. We review her daily caloric intake regularly trying to meet the nutritionist's goals. Jeff has many spreadsheets. The doctors and nurses in the hospital praised us for plumping her up and I don't think they have seen as complicated a feeding schedule in a while. Muriel is on fortified breast milk, but will only take that through the tube, the bottle has to be straight milk. The fortification is coming from an amino-acid based formula called Elecare which is given to babies with extreme allergies and GI problems. It smells a bit foul, like rotten cheese, which is why she refuses to drink it. There is still a theory floating about that Muriel may have a milk allergy/intolerance. One of the most difficult times was in the first two months after surgery. Muriel was vomiting so frequently she was loosing up to four out of eight feeds a day! When she came home after her first surgery she weighed 6lbs, 11oz, she has nearly doubled her coming home from surgery weight.


My official return to work date is September 13th. My classroom is set up and I met with my teammates yesterday. The biggest stress now is finding a nanny. I have put a post on care.com, but it is terrifying! So please let me know if you know anyone who would be interested!


Again, she has made leaps and bounds in a matter of days; we are impressed with her strength and good temperament in this difficult time in her life. We can only hope she won't remember.
Immediately after surgery

At the park watching her sisters on the swings.











Friday, August 3, 2012

Last night?

A calm moment
Muriel spent most of the day today fighting acid reflux.  Other than that she seems back to her normal self.  EKG leads have been attached all day long waiting to capture her heart rate dip, which of course hasn't happened.  They don't want to remove them as surely that would trigger it!  There doesn't seem to be any reason to keep her longer, so pretty sure we will leave tomorrow.  One more echo cardiogram will be performed in the morning, and we will get the verdict.
Swing finally settled her tonight!











Not really anything more to report.  Have taken lots of staff pics today since we think we are at the end.  Wish these folks would come home with us!  I have made a valiant attempt to hire away every nurse for nanny duty, but no takers yet.  In all seriousness we *are* in search of a nanny, so if anyone has a lead, let us know please.


Dr. Van Burgen - IV hero
Unless we hear we are staying another night, this will be the last post for now.  Am going to try and talk Megan into continuing from home.  Thank you to everyone that has been following and commenting, for your well wishes and support!




Super nurses Meghan and Gina

4th morning

Test post from the 'blogger' app I just loaded on my phone...

Still here! Potential problem has come up. Muriel's heart rate has dropped several times during feedings from her normal 140bpm to the 70's. The two times it happened last night we were here for it, and saw the rush of nurses come in.

Several theories are being investigated. In the meantime they want to keep her close - at least one more night.

Turns out her blood pressure is also higher than they would like. So she is now on four different drugs to head off reflux (one of the rate drop theories), boost her heart pumping function, reduce swelling, and tylenol once last night to relieve pain.  Not sure how many we will go home with.  A bit daunting to say the least.
Her oxygen sats seem to be back to normal for a bit of good news.  Doesn't look like we will need to restart the nasal cannulus or go home with it.

Will update more later as we figure out this heart rate problem.

Thursday, August 2, 2012

Day Three Post-Op

Ack, sorry everyone - seems we have been extra busy since last night, and I am just now able to sit down and write.  It's clear that a gazillion people are waiting for updates, because that is about how many text messages I got today!  The silence really didn't indicate anything was wrong...

So for an update... we actually got here earlyish this morning (just after 9am) so we could catch them taking out her chest drain.  We arrived to find that they had already removed a bunch of bandages and her nasal cannulus - no more oxygen!  We were also surprised to hear that we might go HOME today!  That turned out to be optimistic, but it does look like we will go home tomorrow.

They did then remove her chest drain tube and also her pacemaker leads.  That leaves only her new IV and her arterial central line (in her thigh).  The central line is the last thing to go, and that just before we leave, so likely tomorrow morning.

Her x-rays (lungs) looked good this morning, so no more vibration treatments, and no more suction.

Mystery rash
A brief scare as a bizarre mystery rash suddenly appeared in her armpit.  We noticed it as the nurse was connecting her feed and it was about the size of a quarter.  Within fifteen minutes it was at least five times that size, and several nurses came in to look at it.  They drew a series of dots around it to see if it was still spreading, and it stopped.  I'm convinced the dots were the solution.  Throughout the day it slowly faded...

We both got to hold her and feed her today, which was nice.  You can tell she is still uncomfortable, but quickly returning to her normal self.  Even caught her smiling this morning - this time without the help of sedation!

She got a visit from Grandma and Stacie this morning which was nice, and Aunt Kathy this evening.  Have had lots of conversations with nurses and doctors preparing to go home.  Will have a few medicines to administer this time around.  Hoping to go home without oxygen equipment - one of the reasons we will stay one more night is that her oxygen saturation has been up and down today, so they wanted one more night to observe.

We also took part in a video being shot at Ronald McDonald House.  We were interviewed and may be part of a documentary that will be released later this year.  I'll post the link when it is available.

So a very busy day.  Hope no one was too worried.  If we do go home tomorrow I may not post an update until tomorrow night - fair warning!

Wednesday, August 1, 2012

Day Two Post-op

All but one pump gone...
We slept in again this morning, and missed a few events.  They removed her subclavian  arterlial line (apparently it was leaking but they were planning to remove it anyway).  They stopped all drugs (note only a single active pump in the picture - just fluids).  They removed her Foley Catheter.  They removed the monitors attached to her head and kidneys (measuring oxygen saturation after tissue absorbtion?).   She also managed to kick out the IV line in her foot, which unfortunately was the last line for them to administer anything by IV.  That last bit was troublesome, as they have a very difficult time getting an IV - she has been poked so many times now that there are very few places left to successfully place one.  It is so difficult, in fact, that none of the nurses were willing to try - the head of the surgical unit (Dr. Van Burgen) was asked in to perform it.  We were here for that, and were asked to step outside. It took close to half an hour for them to finally get it in.  Now they have her foot so taped up that she can't possibly kick it out again.

Hot pads on her hands and feet to prepare for IV




We met with the nutritionist this afternoon as well.  Her feeding schedule - which to us seemed like no big deal since we have been working and refining it for months - is apparently so complicated it raised many eyebrows.  We had to explain several times how we had tried various things to keep her from throwing up her feedings, and eventually settled on a schedule that is part straight breast milk by mouth, part fortified breast milk by gravity fed Ng tube, and part fortified breast milk by continuous pump, which gets us through the nights.  All of that was designed to maximize her caloric intake to get her as big as possible for this surgery.  Now that it is basically over, we were wondering if we could "stand down" and simplify the whole process... perhaps down to just regular feedings of straight breast milk?

Dr. El Zein - one of her amazing surgeons
The answer was basically "it is up to you".  We were given some guidelines - targets - of caloric intake by kilogram of body weight, and have been given the latitude to work within those targets to feed her as we see fit.  I like that level of control over things, as I do feel that we are the ones "in the trenches" and can see first hand what she will tolerate.  Besides I feel much better about anything I can model in a spreadsheet!

Poor Muriel was pretty dazed when we got here today.  Removing the arterial line was fairly traumatic, and she is still getting regular suctions to clear her lungs - also very traumatic and causing her to throw up.  Then there was the half an hour of trying to get a new IV.  She won't look at us and Megan is fairly convinced that she is pissed off!  She is sleeping now and I think will probably sleep most of the day to recover from all that.  I feel so bad for her and I know how uncomfortable she must be.  I keep thinking that the next day will be easier for her, but the truth is there are still some stressful parts to come.  Tomorrow she should have her chest drain tube removed, and I don't think that will tickle.  On the bright side, there really isn't much left to remove...

I know there are dozens of people following progress here.  I'll post more tonight.

Sleeping angel