24 hours

At post-op 24 hours Muriel is doing great.  Her swelling seems to be down, and she is back on breast milk fortified with formula.  Still on a Fentanyl drip, and Lasix (for reducing the swelling), but that's about it drug-wise.  She still has the nasal cannulus with oxygen at 100%.  They talked about possibly removing her chest drainage tube tomorrow, which is a pretty big deal.

1st morning after surgery

Many pumps already off...

a bit swollen

Megan somehow woke up a 6:30am in time to call and catch our nurse before she changed shift.  Not much had changed through the night - the ventilator was still connected with 50% oxygen, she was still on Fentanyl and Versed for pain and sedation.  She told the nurse we would be in at 8:30 - the earliest we can come in after rounds.

At 10:00am we woke up.  Oops!  Goes to show what stress and exhaustion will do to you... we were pretty relieved when we left here last night at 1am.  This is probably the first night we have been able to sleep without interruption in four months!

Off the ventilator!

We arrived just before noon to find that several things *had* changed.  Ventilator has been removed - no more giant tube down her throat.  She has a nasal cannulus delivering 100% oxygen, but she is breathing on her own.  Chest x-ray this morning showed minor collapse in the upper right and lower left lungs, so they are treating with what they call "the electric toothbrush" which tries to use vibration to clear those areas and let her cough it up.  No percussion so far - I hated seeing them perform that last time.  Most of the pumps are now off, as you can see here.  The Versed (pain) has been stopped since this morning.  The Fentanyl (sedation) has been reduced to .336ml/hr, which is to say almost nothing (the nurse called it a "spit"!).  Still getting a 10% dextrose (sugar) solution, but they made the decision to start her feeding this afternoon.  They also started her on Lasix to reduce the swelling... which for some reason seems centered around her poor neck!  We told her nurse she had been working out.

Mommy gives her first post-op drink

We had apparently arrived just after she fell asleep, so we missed her waking up.  Feel some guilt about that.  Megan got to feed her a bottle of Pedialyte when she did finally wake up, and will start a bottle of breast milk soon... a few hours?  They want to make sure she can keep this down.  So far so good.

Ventilator replaced with hi-flow cannulus

Our amazing surgeon Dr. Ilbawi

Haven't seen the doctor yet, so don't have any kind of updated longer term plan.  Happy just to be sitting with her right now.  She is doing VERY well (to be expected from Super Baby).

First pics of recovery

Cool panarama shot with my new phone

Ventilator tube, chest bandage

We got to see her a lot earlier than expected too!  Just as in the last surgery she is starting out with a gazillion tubes, wires, and bandages.  She is still on the ventilator, but the plan is to extubate early tomorrow. She has pacemaker leads, but no pacemaker for now.  She was getting extra sugars when we came in - her blood sugar was low right after surgery.  Then it was high... so that is already gone.

Pumps!

Megan and a family friend (Stacie) donated blood for this surgery, and it looks like both were used.  You can see the tail end of Stacie's blood in the rack.

Holding Mommy's hand

Versed and Fentanil are being given for pain and to keep her sedated for now.  The ventilator is adding oxygen - 80% mixture as of a few minutes ago (down from 90).  That will be reduced as the night progresses to prepare her for extubation.


I could probably go on for another hour, but as Megan points out - you all want to see the pictures.  So here are a bunch:

Holding Mommy's hand... again

Umm, you guessed it

Played around forever trying to get these to present in some reasonable manner and totally failed.  But you get the idea...

More to come tomorrow!

All done!

Nurse came by just fifteen minutes ago - a full hour early - to report that the surgery is complete.  She also said that they were able to reduce the drug (Dobutamine?) that was being used to help her heart pump and bring up the pressure, because she is apparently so strong.  Super baby!  They were also able to avoid adding a line that would have pierced her right atrium, which was good news.  Another hour and a half for recovery, and I believe we will be able to see her.

What a freakishly long day :(

Thanks everyone for your support!  I'll keep you updated on her recovery over the next week.

"Meat and Potatoes"

Our nurse just came by again to say she is off the heart/lung machine and that the "meat and potatoes" of the surgery is now over.  Her heart is beating basically on its own, though there is a pacemaker assisting - there is some "heart block", i.e. the signals between her atrium and ventricles aren't making it consistently.  This happened in her first surgery too.

Conclusion on the IVC situation - no obstructions.  So the Glenn was completed as planned.

What is left is to put the drain tube(s) in, possibly move her arterial lines, and close up.  Still some room for complications, and these tasks will still take another two hours.  Looking good!

Our nurse is off now, and her relief came with her for this update... she will be back at 9:30 CST.

Still waiting... but some news

Nurse came back about 30 minutes ago to say she is now on the heart/lung machine, which is to say she is ready for the actual procedures.

bloggin in the waiting room

As Megan mentioned in an earlier post there are two major parts to today's surgery.  The first part, which by now is well underway, is to create an alternate path for mixed (pink) blood to reach the body via the Aorta.  The only path up until today has been via the existing Ventricular Septal Defect (VSD), which would normally be a problem that requires sewing up or patching.  In fact another parent staying at RMH is here for that very reason - her 2 year old son has a VSD that was just closed (by patch) late last week.  In Muriel's case, because her displaced tricuspid valve was closed off in her first surgery, the VSD is actually required to complete the circuit to the body.  Unfortunately her VSD is getting smaller.  Partly because it is starting to close on its own, and partly because she is growing and it is not.

The solution to this problem is the Damus kaye stansel procedure.  It goes hand-in-hand with her Glen procedure (the second part which I will go into in a minute),as the Glenn includes clamping off where the Pulmonary Artery was banded in her first surgery.  Instead of it being a dead-end (the heart-side), it will be connected directly to the ascending Aorta.  They won't close off the VSD - it will remain open as a secondary path.  I asked why they didn't just widen the VSD, but apparently there is a lot of structure involved that they can't just start cutting.  Good enough for me!

The second half of today's surgery will be the BiDirectional Glenn Operation, which if you have been following the blog I have linked to a number of times already.  The basic idea is to take all of the blood returning from the upper half of the body (via the Superior Vena Cava (SVC)) and send it to the Pulmonary Artery (i.e. the returning blood will go directly to the lungs instead of into the heart).

Here is where a potential complication has come up.  Part of the Glenn procedure is to close off any "collateral vessels" that may have developed between the IVC and SVC.  If you want a difficult read, try this: Where There Is Blood, There Is a Way: Unusual Collateral Vessels in Superior and Inferior Vena Cava Obstruction  .  But there is some evidence that her IVC is occluded (blocked), and if that is true, the collateral vessel (whose name was told to me but I didn't write it down!) may be the only way for the lower half of her body to drain, so they can't close it off!  So at the time I started writing this one of her doctors (the head of the heart unit in fact) was poring over literally thousands of images from her dozens of echo cardiograms since birth, looking for confirmation so they would know what to do.  He just came by, and couldn't find anything conclusive.  I'm not sure what that means for her surgery, but I am sure they will let us know soon.  One potential effect if it is true is that the Glenn procedure will redirect not only the blood from the upper half of the body, but almost ALL of the body's blood (organs will still have to be redirected later in the Fontan procedure - surgery number 3 - when she is between 18 and 24 months).  This could mean higher oxygen saturation which I can only imagine being an advantage.

I guess this was a fairly technical post!  Sorry about that - I am trying hard to understand exactly what is going on, and writing it out helps that process for me.  To sum it up, she is in surgery now, there is a potential complication that they may have to work around, but so far all is well.

Waiting...

Megan, Aunt (Cookie) Gayle, Great-Aunt Kathy

Sooo glad we came last night and had a fairly stress-free morning getting ready to come to the hospital.  Muriel was in a very happy mood - smiling and even laughing when Mommy tickled her.  All our careful feeding plans came together as she finished her last bottle by design right at 9:30... then she threw it up, sigh. Even had time to make a quick omelette in the RMH kitchen.

What... me worry?

Made it out the door on time and bumped into Megan's Great-Aunt (Muriel's Great-Great Aunt!) driving randomly around the hospital grounds wondering where she was to park, etc.  Lucky!  She followed us in and we waited in the pre-op for several hours while they took blood and vitals.  Earlier surgeries were delayed, so we were able to feed her a small amount of Pedialite to keep her hydrated.  We met the anesthesiologist and several nurses, who explained the steps that would be taken to get her prepped for surgery.

Not long after the nurse visit we had to give her kisses and let them wheel her off.  An emotional moment.

Now we are in the day surgery wait area, where we will spend the rest of the day and evening.  Met another of Megan's Aunts here, who brought cookies!  We have been here an hour and a half, and the surgery nurse just came for her first update.

Basically she is now ready for the actual surgery.  It took longer than usual to get all of her tubes connected.  As we learned during her cath lab last month, one leg has no central vein to tap, and the other is occluded (possibly due to the extended use during her first surgery).  After failing to get her lines in her legs, they tried on the left side of her chest, failed, and ended up in the right side of her chest.  Hope I am getting all that correct - it was just explained rather quickly.

Sleeping with Mommy in pre-op

We were told that she may end up with a central line directly into her right atrium, which may or may not come out after surgery.  This adds some complications later, as it has to come out eventually, but they can't apply pressure.  The small incision will have to close on its own which will involve some amount of internal bleeding - I assume will drain via the drain tubes that will also be present after surgery.  I'll try to expand on this later when she is finished and we know how it has all turned out.

In the meantime, we wait.  Potentially six hours.  The nurse will come out every hour or so to give us an update, though she warned that the surgeons don't talk much in this stage, which is understandable I guess.  As long as things are going close to plan, she probably won't have much of an update.  I'll try to post as she gives us information.

Night before 2nd surgery

Four months old today!!

We were extremely fortunate to once again get a spot at the Ronald McDonald house across the street from Muriel's hospital.  We decided to come the night before, so there would be no scrambling on Monday to drive the hour from Naperville and somehow be on time.  I'm sure we will manage to be late even from across the street, but surely a different order of magnitude.

What is this strange place?

Checking in was ridiculously easy.  The manager, who remembered us and even our other two girls (who came to visit for the weekend during our first stay, when Muriel was born), simply handed us the keys.  In these days of mountainous bureaucracy experiencing something simple and efficient was  refreshing.  After emptying the car into our room and parking it we were able to sit down to a wonderful lasagna meal and relax.  We have been able to spend some quality time with our little girl tonight without the normal chaos in our house.  Important.

Muriel of course doesn't know what is going on, but seems nervous and anxious even so.  I'm sure it has to do with the strange room and a playpen instead of her normal cradle.  Not her normal routine.  She does normally sleep through the night - hooked up to the continuous feed pump - so hopefully once she konks out she will get the rest she needs to be ready for tomorrow.

Last bottle before bed

With that in mind, we spent some amount of time tonight planning her feed routine so she would be good and stuffed by 9:30AM, which is when she is supposed to stop eating.  She is to "fast" for four hours so her stomach is empty when they begin the anesthesia.

We are to arrive at 11:30AM for prep.  They will take blood and run several last minute tests to make sure there are no surprises.  Megan and two family friends donated blood, and they have to run last minute blood matches somehow related to the fact that she had anesthesia less than 30 days ago (catheter lab).  I don't quite understand that part, but hope to ask some questions tomorrow.

In all we are feeling confident - in our surgeon, the supporting staff, and the hospital.  Its hard not to be a bit anxious, but I am doing my best to think good thoughts and I know all of you are as well.

 I promise to post tomorrow while we sit (for seven hours?!) in the waiting area.  We will be getting regular updates, and so shall you.

Jeff, Megan, and Muriel

Amazing Care at Hope

Here is an example of the attentiveness and exemplary bedside manner of the entire staff of Hope Hospital: On April 19, I had a scheduled visit with the speech pathologist to discuss Muriel's eating and swallowing. While there, Darlene, a physical therapist stopped in for a quick discussion on making sure Muriel is getting some upright time on my shoulder since she cannot be on her tummy due to her healing sternum. I mentioned her incision may be bothering her since being in that position bothers her and it was a tad red. She took a look and called Sara, the PSHU nurse practitioner. She found her way down to the speech room we were huddled in and upon seeing the inscision, called Dr. Nater to take a look. Dr. Nater called Dr. El Zein, one of the surgeons that operated on Muriel's heart. The conensus was that her inscision looked fine, and Dr. El Zein said she may just have sensitive skin and that was why it appeared irritated.  The doctors joked they didn't know where the speech rooms were and that it was a maze to get there. Obviously, trips they do not make every day. From the nurses to speech, to PT, to cardiologists and surgeons, they care enough about Muriel to drop what they are doing and visit her without an appointment when there was a small concern.
While they were there, we mentioned her coloring was off and just to be safe, they ordered an echocardiogram to get an inside view of her heart and blood work to ensure there was not an infection. Again, we could not ask for better care for our precious little girl.

Muriel

Hello all, long time no type. We promise to be more diligent about posting while Muriel is in the hospital.

Let’s see, what else has been going on in the past few months…

PT Darlene

Sitting with Daddy

Muriel and I have been seeing the speech and physical therapists at Hope in the past few months to work on her feeding and development. We will continue with them and after her recovery from this surgery expect to call early intervention to have her evaluated. As expected, she is behind. Although we have tried to give her tummy time, it has only been allowed since mid June due to her sternum and incision needing to heal. She does hold her head up when being held upright and sitting, but not quite where an average 4 month old would be. She does not prop herself up when on her tummy, but is beginning to push her head up. An exciting moment yesterday---she did roll over (75% of the way) on the echo table. This was mostly out of pure frustration, but hey, I’ll take it! 

We met with Dr. Ilbawi last Friday, July 20 at 6:00pm to go over the surgery. He is a truly wonderful person, a gifted surgeon and a patient teacher. Not only does he meet with families himself, but on a Friday evening to accommodate Jeff’s work schedule! This meeting was only 20 minutes because Jeff and I did not have too many questions and are much more comfortable with the surgery, but last time he did sit with us for an hour and a half. Dr. Ilbawi explained the surgery again and drew his upside down picture of the heart. She will be having a bidirectional Glenn (always the plan) and a Damas Kaye Stansel. The DKS is new because her VSD is getting smaller. I asked if he was foreseeing any complications and he said he was very optimistic of the outcome of her surgery. I replied that was all I needed to hear!!!

Dr. Cuneo

This Monday Muriel and I went to the hospital to see Dr. Cuneo, her cardiologist. She had an echo done and an EKG. Dr. Cuneo came into the room after reviewing her echo and was concerned about the size of her VSD. The oxygen saturation test the nurse did showed her to be at 85%. Dr. Cuneo thought she appeared a little blue and ordered a re-do. Again, 85% was shown. It seems most babies about to undergo a Glenn are sating at 75% and can expect 75-85% AFTER a successful surgery. (More proof that Muriel is in fact a super baby!)

 

We spent the day in the hospital yesterday. Muriel's first appointment was for her second echo cardiogram of the week. She was not in the mood for ultrasound gel unfortunately and threw quite a temper tantrum. Who can blame her? The reason for the second of the week was to check to see if she has a second SVC (superior vena cava). In the [7,000] previous echos -not to mention the open heart surgery she has had- readings were inconclusive. Final unofficial results---they don't think there is a second SVC. I do understand why the team wants to check as it does matter for planning purposes for the surgeons. Next, we went to meet with one of Dr. Ilbawi’s nurse practitioners, Jane. She went over the surgery with us again. 

Muriel's hand after cath. lab :(

We signed consent for the surgery and then it was time for a blood draw. I have to say I did better with this than Jeff. Two nurses came, apparently the only two that poke the pediatric heart patients in Hope. One to poke, one to hold her arm, I held her chest and legs, and Jeff held her hands. She screamed like I have never heard her scream, but the AMAZING nurse got blood in one prick. I have to say that is an accomplishment because after she came home from the cath. lab she was riddled with unsuccessful puncture wounds and bruises.  

x-ray

Next we went to radiology and got a few x-rays of her chest. She was much more compliant for those. 

Well for anyone who has actually gotten through this ramble, thanks for listening, praying, and supporting us. I am sorry I haven’t written more but I think it may be therapeutic and will continue to do so!  

Jeff and I are hoping to check in to Ronald McDonald with Muriel on Sunday. Her surgery is Monday morning. We are optimistic and looking forward to this surgery being behind us.