Back in the hospital

Posting from my phone. Technology is amazing. Here we are in the Peds Emergency Room. Megan brought Muriel to the hospital earlier today to meet with the Speech Therapist, but got sidetracked by showing her chest incision, which looked kind of angry red. Before she knew it the room was full of doctors, including one of her surgeons and her favorite cardiologist Dr. Melissa. They decided to take some blood and run an echocardiogram, so poor Muriel was here all day. The nurse discovered some puss that there was minor concern over, but in the end they came home.

Last night at the hospital

Sorry so late posting today - I started working again yesterday, and am so far behind I am overwhelmed.  Have also been back and forth to the hospital between conference calls as the nurses prepare us for taking Muriel home tomorrow.

Yes - we are taking her home tomorrow!

She is now off ALL drugs, so we don't have any to administer at home.  Yesterday she lost the cannula, her final femoral central line (though she gained an IV in her hand), the wires for her external pacemaker, the drug for keeping her central line open, and the diaretic (Lasix) drip.

This morning she had her first bottle - 40ml of fortified breast milk.  It didn't go down perfectly, but hey - it was her first bottle!  A little later she had an x-ray while drinking a bottle, to see if she was getting any in her lungs.  Something we very much take for granted, it is quite a feat to manage breathing, sucking, and swallowing all at the same time.  She hasn't had any practice, so no surprise she was having a little trouble.

We both got a chance to stick a long (Nasogastric) tube down her nose into her stomach, as we may be required to change it over the next few weeks, and will have to use it to feed her every three hours.  The basic plan is to fatten her up for her next surgery.  So she will get mom's breast milk mixed with formula, to increase the Kcal per ounce (to 27 from 20).  50ml every three hours to start.  She gets to take the first 10ml by bottle, providing she can down it in less than ten minutes.  The rest she gets by tube.  They don't want to overtax her - apparently drinking from a bottle is a high calorie burning activity, which kind of defeats the purpose.  Hoping to have her gain 20-30 grams per day.  Adds up I suppose!


She had a final echo-cardiogram today and a hearing test (passed).  Seems every specialist in the hospital came by to give us parting information.  Also met with a nurse representing home health care.  We will have a nurse visit our home three days a week at first, tapering off over time.  She will do assessments and report back to the cardiologists looking after us.


We are supposed to spend the night in her room tonight to practice the various things we will need to do, which basically boils down to feeding her, giving her a vitamin dose, and changing her diapers... not nearly the difficulties earlier envisioned.


For the next month especially, the next two in general, her immune system will be compromised due to the surgery.  That being the case we will have to severely limit visitors, and if you have even the slightest sniffle we won't let you into our house!  Thereafter she should be more in-line with the immune system of any two month old, which isn't saying a heck of a lot more.


Finally we had a professional photographer come in and take some pictures, for which we bought the CD.  Here are a few of the really good ones, though they are all ridiculously cute.


I'll probably cut back on the posts now... there will be a few here and there as we struggle with managing her at home and pictures as she gets bigger.  I'll fire back up again as we approach the next surgery in a few months.  Thanks to all who have followed us and projected good thoughts and energy our way - it seems to have worked!

Preparing to go home

We heard this morning that Muriel is considered ready to leave the ICU.  She would be moved "downstairs" now if there were beds, but at the moment there are none.  Megan stayed with her this morning as I tried to get things ready to start working again, and of course I missed a bunch.

Her "jumper cables" (the wires that connected her to the external pacemaker) were removed this morning.  Megan learned how to place the "NG Tube" that runs through a nostril to her stomach (she is getting her breast milk and meds through this tube right now), in case she yanks it out by accident when we are home.  With any luck she won't need it when we get home, but apparently we are supposed to leave it in for a month just in case.

In all she is doing very well today.  Her airflow through the nasal cannulus is down to .5 liters per minute (next to nothing really), and her oxygen is back to 21% - normal air.  They reduced the diaretics (just Lasix now), and discontinued the blood pressure drugs.  She is basically on nothing at this point.  For sure we should be home by the weekend.

Seen here are the last few devices in the room.  The bag at the top is "Heparin" - an anti-coagulant that is to keep her IV lines open.  The pump in the middle - the last one running - has a syringe of Potassium to keep her electrolytes in balance.  Without this balancing the diaretics she has been receiving her heart has minor arythmia.  We won't be able to measure this at home, so we want to make sure it is under control before we leave.  They continue to reduce the diaretics, so perhaps this won't be needed much longer.


More later when we find out if we are moving into the regular hospital today...

Happy Easter!

Hangin' with Dad

No better Easter present than to hold your newborn sleeping in your arms.  Muriel is now getting more rest than we are for sure.  Literally everything is better now - blood gases all normal, flow down to 2 liters/min, breast milk started again last night on continuous drip, breathing normal and relaxed.  They are to remove her central line IVs sometime tonight and put a new IV into her hand to take their place.  I guess they tried earlier this morning and couldn't get it to take, so decided to wait.  I heard that her x-rays were looking better, but the respiratory therapists are still coming by every three hours (back from two) and performing percussion.  She really doesn't appreciate it!

Our other two girls left Ronald McDonald house this morning for Aunt Cookie's house for the annual Easter egg hunt.  Felt very bad that they couldn't visit their new sister.  Madeline asked about her several times, and we just had to tell her Muriel is still sick, and she can't see you yet...

What a rollercoaster ride.  I was sitting here in her room when the doctor came by on rounds, and listened as the nurses updated her on progress.  I literally felt embarrassed at our meltdown day before yesterday, but she has apparently seen worse (so she says!).  I apologized, at any rate.  We are in very good hands for sure.  I'll try not to be a doubter again!

It is still a tangle, but the nurses are very accommodating when we want to hold her.  Megan got to do it last night while I was wrestling with Madeline and Mirabelle, so I got to do it today.  What a wonderful feeling, especially when I know she is comfortable and relaxed.  Fingers crossed we have passed over the peak of the difficulties, at least for this stay.  I imagine early next week we will start hearing about plans to get out of here.  I don't want to ask and jinx things.

Happy Easter everyone!

Better today

Muriel loves her nook - a good sign that she will quickly
take to bottle and hopefully breast soon...

Sorry didn't post again last night.  I drove back to Naperville and picked up Madeline and Mirabelle, and we had our hands FULL pretty much all night long.  All four of us are sure to make a pretty sight at dinner tonight with bags under our eyes.

Yesterday was rough.  My last post I mentioned that her CO2 had gone back up, and the various things that would be done about it.  It got worse before it got better, and by mid-afternoon it was really hard to watch poor Muriel trying desperately to breathe.  Her nostrils would flare, her whole chest would constrict, and she made little grunting noises that we are told is her body's attempt to rid itself of excess CO2.  Though every nurse that came in did their best to console and reassure us, we asked Dr. Nater to come speak to us.  She managed to talk us off the ledge, and convinced us that though she is having a rough time she has to just get through it.  She is building up strength in her lungs and muscles and is fully expected to "get better" - we need to give her time.  This concept was later reinforced by Dr. Sajan when I was able to speak to him near midnight.  There is concern and empathy, but the medical staff is not worried, and all have promised that if they ever are, they will let us know.

One additional minor complication arose yesterday.  Muriel seems to have no trouble with bowel movements, though I don't really understand what is filling her bowels!  One such incident managed to soil the dressing on her right femoral artery (?) central line IV.  Worrisome, as this is one of the riskier points of possible infection.  The nurse who changed her quickly changed the dressing, and discovered a very ugly looking blister.  It had not "popped" at that point, so there was no immediate concern.  It did, however, pop last night.  They sent off some of the fluid for culture which came back negative initially.  They will continue to try and grow it for four days, and if anything shows up she will be back on antibiotics immediately.

Sleep?  We thought this was a party!

Megan and I traded off visits late last night as we struggled to get our other two girls to bed, and I have to admit she started looking better even then.  Today, at just after lunch, she looks MUCH better.  Doesn't seem to be struggling anymore, and was sleeping peacefully.  Her oxygen is still augmented, but only slightly (25%).  Her flow is still augmented, but down to six from seven (out of ten).  Unfortunately as long as the the flow is above 3 (liters per minute) she cannot have any milk.  So she is getting nutrients by IV again for now.  The respiratory therapists come by every two hours now (up from three) to try to clear the lungs, which on last night's x-ray still looked hazy, though now on the lower left lung (the upper right has cleared apparently).  Another thing that is hard to watch - the percussion I understand and of course it seems to be working, but there must be something instinctual to explain how I feel about watching someone whack my child!

All the respiratory therapists and the nurses have been unable to suction any of the obstructions.  It is apparently very difficult to get the catheter down the esophagus to where it needs to be, so they tend to wait for the baby to cough it up and get it from the back of the throat, which she hasn't been doing.  Diaretics are still being given to try and dry up the fluids, but this seems to be thicker mucus that won't respond.  Another drug to break up the mucus (and another to counter the tendency for the bronchial tubes to close up when the mucus busting drug is given) is being administered as well.

I don't know if I will post again tonight or not - I know there are a great many readers at this point, judging from the amount of  "please post" texts, emails, and voicemails I am receiving :)  We will have our hands full again tonight with our other girls.  Mom is taking them to "Aunt Cookie's" (Gayles) house tomorrow for the annual Easter egg hunt, and I will be here with Muriel.  So probably one or two more tomorrow.  Don't worry - if anything really newsworthy happens I will get something out even if it is without pics.

Thanks everyone for your frequent well wishes, the comments on the blog, and the overwhelming support we have received from every possible angle.  As Megan has passed on to several people, my faith in community has been reassured.  I don't know how we would have survived this far without all of you.

Look ma, no tubes!

Arrived this morning to find many items missing from the room - all the pumps that had been turned off, gone.  Ventilator gone.  Pacemaker and all wires gone.  Brain/Renal O2 meters gone, so no more sensors on her head and back.  The way they had arranged her blankets it almost looked as if there was nothing connected to her anymore... just an illusion, unfortunately, but a nice one!

Muriel is now receiving Megan's breast milk via a feeding tube run through her nose directly to her stomach.  Last night it was on a continuous drip, and every few hours they would check to see how much milk was still in her stomach, to see if she was absorbing it.  No problem there.  So sometime last night routine was change to give her larger amounts regularly, as if she was actually feeding normally.

It can't all be good news.  Last night they started tracking her CO2 levels rising again.  Peak so far at 69%, which is as high as we have seen it.  After speaking with Dr. Melissa this morning this was somewhat to be expected, and follows from what they are seeing on X-rays.  Her lungs are "wet" again, and a portion of her right lung had collapsed.  They actually noticed this yesterday, and respiratory has been doing the percussion treatments for almost 24 hours now to both open it back up and shake loose some of the gunk down there.  In addition they are starting up the diaretics again today, but by mouth instead of IV (trying to wean her off the IV tubes so they can be pulled).  That should dry up the lungs.  There are thoughts that we pulled back on the diaretics too soon.  Have also added some oxygen to her airflow, though her oxygen saturation still looks ok.  Dr. Melissa says not to worry.  Easier said than done.

Mommy gets to hold her

Megan was able to hold her last night, which made them both very happy.  I was in Naperville most of yesterday trying to give our other two girls some attention (and Grandma a break), so I missed out on that.  I'm supposed to be able to hold her today, though.

Sleeping this morning... with a new flower!

No more ventilator!

Third morning after surgery

Arrived about 11AM to find a nurse performing percussion on Muriel's chest.  That was unnerving, but she didn't seem concerned!  We washed up and she went over the events of the previous night and the plan laid out by the doctors during their morning rounds.

She was percussing her chest because the last x-ray showed that a portion of her right lung hadn't completely opened up, and they didn't know if it hadn't expanded or was possibly congested with phlegm.  The percussion should help break it up if there, and otherwise should help the lung open up.  Even with this problem her numbers are looking good, and this shouldn't stop her coming off the ventilator.

The first thing to notice was that her chest tube was removed.  The tube had been in since surgery to drain fluids from the body cavity.  Since she has been on diuretics for the past two days and the swelling has basically ceased, the fluid draining had reduced to just a few ml.  The diuretics have been reduced as well and will probably be ceased today. The tube was removed at 5AM.

She then explained that Muriel did two sets of four hours off the ventilator (CPAP mode), and was due right now to go back on.  As a result of her perfect blood gas tests the doctors decided it was time to extubate instead and lose that horrible tube down her throat.  So we were kicked out for twenty minutes for that procedure.

So here we sit in the waiting room again, and its hard not to feel a bit anxious.  Removing the tube has some possible complications (I linked to these yesterday), and once she loses the tube it will be difficult to go back.  But that is why the tests were run last night to see how she fared off the ventilator and she did very well.  No reason to believe that won't continue once the tube is removed - in fact she should do better if anything.  The tube was quite restrictive to her breathing - like us trying to breathe through a straw!

Some final plans for the day - she should lose the tube currently in her nose down to her stomach, which they were using to manually suction excess fluids.  Several of the pumps that have been turned off will be removed.  The leads for the pacemaker will remain for now - they should be close to the last things to be removed.  When we go back in she should only have a Cannulas in her nose where they will be pumping humid air for her to breathe.

Will post results later!

At 48 hours

Happily sleeping with no sedatives!

The top line shows her heart rate - happily in her normal 130s
without the pacemaker!  Fourth line is her breathing rate, now
ranging between 40 and 60 (from low twenties on the ventilator)

At 48 hours Muriel was put on the "CPAP" mode of the ventilator.  She is still intubated, but basically breathing on her own.  When she takes a breath, the machine gives a slight pressure assistance.  Her breathing rate has climbed to as high as 60 (from low twenties), but the breaths are shallower so the overall volume is probably similar.  Her oxygen saturation and other gases are all staying in normal range, so she is basically doing what her body needs.  She also lost the pacemaker today!

Ventilator in CPAP mode

The CPAP mode continued for 2 hours, then they switched back to the ventilator.  This gave a chance to check her blood gases and evaluate how well she tolerated breathing on her own.  She of course passed with flying colors.  After two hours on the ventilator she is now back to CPAP for another two hours, and the plan for the night crew is to take her to a four on - four off schedule and re-evaluate during doctor rounds in the morning.  If all is well extubation may happen tomorrow afternoon!

Muriel gets her first echo since surgery

Earlier this morning Muriel had her first echocardiogram since surgery.  The skilled technician captured pictures of her heart by shooting from below her belly (see picture), which I found fascinating.  Megan and I have seen to many echos at this point I thought I might be able to pick out the patch over the tricuspid valve, or perhaps see the lack of reverse flow now that the patch is in place.  The techs are instructed not to comment on the echo while it is being taken, though, so I couldn't ask my normal barrage of questions.  And alas, I really wasn't able to recognize anything new!

Mommy hanging out

Most of the day we spent hanging around her room talking to the nurses and doctors that came through.  We had a visit from "Papa" (Megan's dad), though I forgot to take a pic...  Overall, other than the pacemaker being shutoff, not a lot of changes today.  The next few days may prove to be much more active.

Closing shot of a happy little girl

Recovery going strong

Muriel continues to astound and amaze.  I really expected that we wouldn't see much change for a few days as she stabilized after surgery.  But here we are just 30 hours later and she has already accomplished:

• Ventilator oxygen from 60% post-op to 21% (normal air) while holding her oxygen saturation levels
• Pacemaker "half" off, where it is only pacing her ventricular beats at her normal 130bpm
• Naval "central line" (arterial tube where they were drawing blood for tests) removed
• Epinephrine drip eliminated
• Nutrient fluids restarted (sugars, lipids) with blood sugar levels back to normal (from 400 post-op!)
• Swelling reduced and fluid balance nearly zero (she is still taking in slightly more than she is peeing)
• Reduction (by half?) of the sedation drugs, which should allow her to become more alert tonight

Removing the naval central line

Plans for the night staff include eliminating the Nitrous Oxide mix in her ventilator and perhaps reducing the ventilator rate - to allow her to "breathe over" the ventilator rate unassisted.  There is some talk of having her ventilator tubes removed on Thursday.

Grandpa visits from Dixon

My father and stepmother drove in today from Dixon and had a nice visit with Muriel, Megan, and I.  As with the NICU, we can only bring one visitor at a time into her room.  My father recently had heart surgery himself, so they were able to compare scars.  Hers is smaller.

I've been badgering the poor nurses all day with technical questions about how the equipment works and what the sensors and screens represent.  Megan finally told me to leave them alone and save my questions for the doctors!  They have all been extremely helpful and tolerant, though, and even brought me zeroxed pages from textbooks and marketing materials :)  I'll have the ventilator running Linux by tomorrow, surely.

Some schooling on electric signals in the heart

In a nutshell she is recovering at a rapid pace, showing what a very strong little girl she is.  We are very proud of her, and cautiously optimistic as she gains strength.  We still have absolutely no idea what it will be like to bring her home and take care of her without this army of super-beings at her bedside with us, but I am sure it will become clear soon.  I think they are being careful to keep us focused on what is happening in the present so the long term plan can unfold on its own.  One day at a time!

The first 24 hours

Other than pumping every few hours, Megan and I were able to get some sleep last night, and I am here this morning in Muriel's room feeling much more rested than I have in the past week.  She is sleeping now, but apparently through the night she was often awake, eyes open, and comfortable.  Someone decorated her last night :)  The bow looks very pretty on her!

Her swelling already peaked this morning - the above pics are on the downswing.  When the doctors came by for rounds a few minutes ago the first question they asked was "where is the swelling?!?".  She seems to be the perfect recovery patient.  When I arrived she was actually off the pacemaker already, and the Heart block (expected after this kind of surgery) seemed to be gone.  Unfortunately around the same time they took off the pacemaker her lactic acid levels rose, so they started it again while trying other things to reduce it.

The top trace line is the heart rate, and the funky pattern is the result of the pacemaker

They are starting diuretics (furosemide (Lasix)) today to reduce the fluids in her tissues which will also help the lungs and hopefully get her off the ventilator in the next few days.  All of her blood gases are looking perfect right now, including her CO2.  They are convinced now that the surgery has improved her blood flow in a way that has made the CO2 problem go away.  Excellent news.

I just asked the Cardiologist (Dr. Melissa) what challenges we are working on this morning, and stumped her!  Basically everything is in normal ranges right now, and there isn't anything they are working on to resolve.

Cardiologist Dr. Melissa Nater

We got casts of her hand and foot yesterday just before surgery, and the finished product arrived this morning.  So cute!

In recovery

Muriel is now in recovery and resting calmly.  She is still getting sedation drugs (Versed, Fentanyl) and probably will for the next few days as she gets through an initial stage of swelling and fluid retention.  Although it was not expected, her CO2 levels have dropped to normal levels immediately (from a high of 60% to 35%).  She has lots of tubes and wires connected right now, though they should start disappearing over the next week.

Muriel just before an EKG

We were told, somewhat sternly, that we should take tonight to get some rest ourselves.  It is very hard to tear ourselves from her bedside, but the advice is sound and we came back to Ronald McDonald house to get some food and try to get to bed a bit earlier tonight.  She has a dedicated 1:1 nurse for the next several days and a team of people that will be watching all of her many statistics continuously.  Of course there is nothing we can do right now and she is sedated anyway.  Much more important for us to be around later when she is alert and feeling better.

Nurse Brian - "Get some rest!!"

Here are some pictures of our amazing world-famous surgery team.  Dr. Ilbawi is one of the reasons we are at Hope Hospital and we are very fortunate to have him leading our case.

Dr. Ilbawi

Our mood is so very positive tonight - a 180 degree turnaround from the anxiety of this morning.  Thanks to all for your well-wishes all day today.  We still have a number of hurdles to clear, but for tonight we are happy to have cleared the first.

Mid-surgery

Getting updates from the surgical nurse as the surgery progresses.  Her first update was basically to tell us that all prep was complete and that surgery was beginning.  She came in again about 30 minutes ago to say that the basic operation is complete, she is off the heart/lung bypass machine, and is being monitored for another hour at least.

Today's surgery consisted of:

• Closing (permanently) the malformed tricuspid valve
• Widening (permanently) the existing ASD (Atrial Septal Defect) , to allow the oxygenated flow from the lungs to bypass the now closed tricuspid valve
• Banding the Pulmonary Artery to regulate the blood pressure in the lungs.
• Leaving (permanently) the existing 6mm (!) VSD (Ventricular Septal Defect) , to effectively create one large pumping chamber
• Connecting leads for use with an external pacemaker, in the case that she shows signs of Cardiac dysrhythmia

All is complete, and the monitoring is to ensure that the band on the Pulmonary Artery is correctly regulating the pressure to the lungs.  They may have to adjust it (tighter or looser) depending on the pressures they are measuring.  This band will be removed in a later procedure (BiDirectional Glenn Operation).  Unfortunately the external pacemaker was required, and is now regulating her heart rate.  We are told this is temporary, and should be able to be removed during her recovery, which may last two weeks or longer.

The steps above are the first stage of the Fontan procedure which will result in a single ventricle heart, which will pump to both the body and the lungs by itself.  The lungs will receive the blue de-oxygenated blood directly from the body, and return the oxygenated blood to the heart as before.

The nurse just visited again as I was writing this, and all is now complete.  They are closing her chest and moving her to the PICU (Pediatric Intensive Care Unit) for continued observation, then to her own room in Hope Children's Hospital, which is connected to Christ Hospital.  We have to wait another two hours before we can see her.  All is well so far!  I'll post another update when we are settled in tonight.

Muriel heads off to surgery

We arrived at the NICU (Neonatal Intensive Care Unit) this morning (Monday), expecting to meet the team of doctors doing rounds for an update, and possibly to speak with the Cardio team to better understand the surgery scheduled for Tuesday afternoon.  Instead we found the nurse preparing her for surgery!  A bit of a scare as we hadn't heard of the schedule change, and we didn't know if it was moved up for any particular reason.  Turns out it was all just scheduling - Muriel had been doing fine.  We waited with her for several hours and spoke to several doctors getting ready for the event.  Finally we followed a team down the halls and up an elevator to give our last kisses and hugs.  Now waiting in the waiting room.  Expecting hourly updates which I will post here.  The surgery itself may last five hours or more.

Intubation

While in Naperville visiting our two older girls, we got a call from Dr. Kukkera.  Muriel's struggles with her CO2 levels started causing her to thrash around, clearly agitated, and she was tugging on the various tubes and sensor cables.  Her struggles weren't helping her oxygen saturation either - when she cries the pressure coming from her mask in her nose just goes right out her mouth!  For this reason and after consult with the cardiologist on call, she decided it would be best to go ahead and Intubate .  

To get the tube inserted into her trachea she had to be sedated, and for that very small doses of Morphine were used.  By the time we returned to the hospital she had been on it for about an hour, and the change was dramatic.  She was no longer thrashing, her heart rate was a bit slower (probably due to the sedation) and her oxygen saturation levels were in the high 80's and 90's - much higher than we had been seeing.  It was hard to see her with a large tube in her mouth, but it was apparent that she was relaxed instead of struggling, and that was reassuring.

The intubation was going to be part of the surgery preparation anyway, so it was just done a bit early.  We spoke at length to the nurse, and asked that Dr. Kukkera come in to speak with us a bit later, so we could get something to eat and let Megan pump (she has been producing milk for Muriel to start with when she is ready - hopefully next week).  We met with her around 11PM and she was very positive - reassuring us that this was done electively, and purely to make Muriel more comfortable and let her rest for the coming surgery.  Hard to do, but we must not look at this as a setback.  She is still in far better shape than anyone expected.

Pretty eyes...

Sunday morning we were allowed to hold her for the first time, and she opened her eyes!  We are told she can resolve up to about one foot, so should be able to see our faces.  She is still struggling with her CO2 levels and fluid in her lungs, and her oxygen saturation drops occasionally requiring a richer oxygen mixture in her CPAP mask.  We will head back to Naperville today after our visit to see Madeline and Mirabelle, and to try to finish moving our stuff out of the old house.  Surgery is currently scheduled for Tuesday.