Needed a break

Hi folks. Sorry for the delay in posting these last few days, but I needed a break from writing. It's been a stressful day or two and I just didn't have the wherewithal to sit down at the computer and type something out. Aurelia is stable and in a similar place to where she was a few days ago. She still is terribly gassy, has needed medicine to help move her bowels, and is still watched closely for the amount she urinates. Her fevers spiked a few nights in a row, but last night it was not quite so dramatic a rise.

In terms of pain Aurelia is on oxycodone and tylenol, if she needs the additional relief. Sleep has been difficult for her, in part because of the gas, but also because she is so nosy. Our girl has to inspect everything going on in and everyone entering the pod. We hope to be out of intensive care soon so we have a shot at a private room. Her recovery should go well there.

Aurelia's breathing is still assisted by 1/4 liter of oxygen, but that is what she came in on, and she is a terribly difficult ween. We hope to start weening her off morphine and diazepam again soon, and maybe her oxygen, too. She has to relax, more, though, and breathe deeply for that to happen.

Not much to report other than that. Jillian went home for a night and returned with my in-laws and Madison as we approach this next phase in the step-down unit. I'll be returning to Gettysburg for a few days to be with the cats tomorrow morning sometime, I think. Well, thanks as always for all your support and prayers. Hope you are all well!

PS - I fixed the comments - everyone should be able to comment now.

THUNK...OW!!!!

That's right, folks, that's the sound I make when the other shoe hits me square in the noggin. So far the other shoe appears to be something light, a ballet slipper perhaps, as opposed to a steel-toed work boot, but this is still a bit of a disheartening morning for me.

After a lovely afternoon visit yesterday from Grandma and Grandpa Dittrich, Aurelia endured a difficult evening. Her belly swelled substantially, she had trouble peeing, pooping, and she became magnificently gassy. Her pain medications failed to alleviate much discomfort and sleep eluded her for much of the night. With two fever spikes up to 101.8 we guaranteed our stay here in the CICU for at least another day.

The team took a urine analysis, blood analysis, and cultures, looking for infections that might be lurking somewhere unseen. This morning the urine analysis came back clean and Aurelia's white blood cell count is reasonable. Thankfully her fever is down after some ibuprofen and she moved her bowels and peed substantially a little while ago.

Currently, our best guess is that her intestinal track failed to start up to full speed after her surgery yesterday (remember that comment I made about her kidney seeming to have started up?), which meant that she had limited function, but not enough to tolerate full feeds. So all day yesterday, when we ran full feeds, Aurelia's body failed to fully process her food. This resulted in the gas, constipation, lack of urine, and painful belly swelling. To help her the team stopped last night's overnight feed and we will start a Pedialite feed later today to see if things are back up and running. We will keep you all posted.

Oh good news! I forgot to mention that pulmonary no longer believes Aurelia needs her inhalers. Yay!!!!

Just a little fluid

Good news continues unabated this morning as Aurelia's improvement continues. All of her tubes and wires, other than the IV, are out and gone, her normal feeds have resumed, other than morphine and diazepam she is off pain medication, and her breathing has not gotten any worse. Our only concern thus far is a stubborn bit of fluid in her lungs. We have started chest PT and increased her diuretics in an attempt to drain her lungs more so we can ween her off oxygen.

A liberal estimate has us leaving the intensive care unit today and maybe moving into the step-down unit tomorrow. I cannot believe Aurelia is doing so well! I don't want to jinx all this progress, but I confess to feeling a bit of disbelief regarding her progress. Never has anything like this been so smooth for us, so I keep looking up for the proverbial shoe, or anvil, or whatever, to drop. I sincerely hope it doesn't, but have a hard time believing it won't!

We have a few questions for doctors on rounds today, when they make their way to Aurelia:
1. How long do we have to do wound care behind her ears?
2. Now that her tracheomalacia resolved itself, do we still need her inhalers?
3. Can we get a swallow study while we are here?
4. Can audiology follow up with Aurelia while she is here, too?

We also want to try and contact our home care company contact here and get a letter of medical necessity to help our application for medical assistance. We want to try and obtain a full time home care nurse for Aurelia and see if we qualify for medical assistance insurance, in the event our insurance starts to play hardball with CHOP and us. We received our first rejection for care a few weeks ago, so we are thinking the fights are beginning as she vaults way past the multi-million dollar baby level. We estimate her care to be at or beyond $2,000,000 since her birth in September. Combine that with 119 days of leave without pay for Jillian and we're thinking medical assistance is something we definitely need to have! We'll keep you all posted!

A quiet afternoon

All good news from CHOP this evening, even as chaos reigns in the pods around us. With critical emergencies proliferating in the CICU Aurelia bucked the trend, enjoying a quiet afternoon of rest and healing. Her O2 saturation is wonderful at 2 liters of oxygen, she is not maxed out on her pain medication in case she needs more, her color is good and her kidney is operating wonderfully.

That last bit, about her kidney, had us particularly concerned. When you have your heart stopped and you go on heart-lung bypass there is a risk that your other organs will shut down and have a tough time starting back up again when your heart begins beating again on its own. Given that Aurelia only has one working kidney, if that doesn't fire up and work well from the get-go then she runs a risk of fluid build up and that can be dangerous.

Regardless, Aurelia is having great fluid discharge through her foley catheter and the only fluid she's needed (besides nutrients) is some potassium, to replenish what's being lost due to her lasix. Her blood gasses have been great all afternoon, drainage from her chest tube is within acceptable limits, and even her wound care went well around her distractors. All in all, it has been a super afternoon. Thank you to everyone for all your support! Jillian and I feel tremendously blessed to have such a strong and dedicated support network of friends, family, and colleagues.

She's through!

We just received word that Aurelia has successfully underwent surgery. Dr. Spray repaired both her holes and augmented her pulmonary artery. He says that although her mitral valve appears slightly misshapen there is no leaking or backflush of blood across the valve, which is good, and it appears that whatever muscle bundles might have been in the way of her VSD repair have been cut away. Apparently, Aurelia's heart has become a little larger to compensate for the resistance placed against blood flow due to the PA band she received in October. As a result, the increase muscle tissue in her heart might have obstructed those areas the surgeons needed to access when repairing the VSDs.

The echo cardiogram taken immediately after surgery shows no leaking across the two chambers of the heart and no leaking across the valve, as I mentioned above. It also appears that her heart is successfully handling the full blood flow into and out of the lungs, and through her body. Whether or not her heart could handle pumping by itself is a concern, primarily due to the fact that her left ventricle sits right on the border line of a functioning/non-functioning ventricle (which is based on its capacity and ability to maintain adequate pressures and flow).

Currently, Aurelia is off the heart lung machine, being extubated, and undergoing an x-ray. We will be watching her carefully over the next day or two for effusion, or increased fluid around the heart, and any change in her heart's ability to handle blood flow to the lungs and body. Again, due to her heart's increased musculature the trick is going to be getting her heart to relax substantially, so that it can fill to complete capacity, and subsequently pump blood to and from the lungs to complete capacity. In the past her heart built up its strength and did not pump to capacity because of the restrictive PA band. Hopefully, though, given the medicine she is on we will see improvements over the next few days as her heart begins to fully manage the appropriate blood flow of her body.

Thank you to everyone for their prayers and well-wishes. These next 24 hours will be crucial in Aurelia's recovery, so we will keep you informed. For now Aurelia is out of the dark heart of the forest and onto the path, but the way is steep and overgrown, and fraught with briers and other dangers, so keep those prayers and positive thoughts coming.

Waiting....

God I'm so nervous. Aurelia has been in surgery for two hours now, the first being spent with anesthesia and this last having her chest open, tubes and lines placed, and getting through her scar tissue. Reports from the team are positive so far, but I cannot fathom how Aurelia endures this. I cry thinking about how strong and determined she has to be, without choice, in order to live. I would do everything and anything to take this burden from her, to let her live without this pain and trauma.

I know some people believe that young children do not remember events such as these, but I believe they do. I believe that any person, no matter how young, remembers these traumatic events and that they are imprinted, that their development as people is changed forever. I don't fear these difficulties impeding Aurelia's development and personality, but rather I think the courage and strength and happiness she shows now will only be magnified, increasing as she ages, as these traits have served her best today and so far.

When she comes back from surgery Aurelia will have a number of lines placed in her body. She will have a chest drain, an arterial line, pacing lines, foley catheter, and an IV. Her chest will hopefully be closed, packed, and covered. Our primary concern then will be two fold (if all else goes well): will Aurelia's smaller left ventricle be capable of pumping blood for her entire body without assistance and will her heart's electrical tissue be damaged, requiring a pacemaker? Unfortunately, one of her VSDs is located in and around a place where her heart's electrical tissue exists. It is possible that Dr. Spray will have to stitch in that area, and if so, it may disrupt her heart's normal rhythm.

So for now, all we do is sit and wait.

Different than any other day

Jillian posted this on Facebook, but I wanted to be sure we recorded it here as well.


Today feels different than most other days.  
With Wednesday approaching quicker and quicker, I have fears and a feeling of helplessness.  I am looking forward to the surgery being over with for many reasons.  Aurelia’s heart will be whole.  Complete.  Healed.  For that I am thankful to the hundreds of doctors, nurses, surgeons, and others who will have taken part in her care.  Today’s feelings aren’t about the upcoming surgery though; they focus more-so on our daughter, Madison, who has been such a trooper through all of this.  Don’t get me wrong, Aurelia is my little heart warrior and I think that she is the bravest person that I know.  Madison though, has been through every bit of this with us.  And she has weathered it all very well.  I am very proud of the caring, sweet girl that she has become.  She is the best big-sister in the world and I absolutely treasure her. 
 I am looking forward to normalcy in our family.  Of the last 10 months, I have spent 116 nights away from home, at three different Ronald McDonald Houses.  That is nearly 1/3 of a year.  This next stay will likely be a week or two and this one I am dreading the most.  Madison has been with me for nearly every night for the last year, but this time Charley and I are opting to leave her at home with my parents taking care of her.   But leaving her behind is tearing me apart.  I know that it will be better for all of us in the long run.  Charley and I can spend all of our time at the hospital with Aurelia, especially during the first few days post-op.  We won’t have to rush back to the RMH for dinner or worry that we aren’t splitting our time equitably between both girls.  For Madison though, hopefully it will be a time for her to enjoy time at home with her grandparents.  She can play in her pool or in the sprinkler and have all of her toys and books close by. She can sleep in her own bed.  She will have her Uly and Shy (our cats) and she will have time for arts and crafts and the undivided attention of her grandparents. 
 For my part though, I am going to miss her dearly.  Having her with me for those first 11 weeks of Aurelia’s life (and the week before, when we went to Philly early) was such a blessing.  She was a wonderful distraction on tough days.  It was good to go “home” in the evenings and have her to be with, especially when Charley wasn’t there.  I think that I was able to be with her more and to see her grow and change more than I would have if I had been working all of that time.  It really was very special.  But this time, I think that we need to focus on Aurelia and to spend our time and energy on her.  I guess that anyone that has more than one child feels torn when they can’t be with both kids at the same time.  This just feels so painful though. And while there are still 2 surgeries ahead, I don’t have the same sense of angst when thinking about them.  Maybe that is because they are not right in front of me yet.  In the grand scheme of things, they will be minor compared to many of the other surgeries that Aurelia has already faced.  They will also be much shorter stays in the hospital, and hopefully they won’t have the risk of as many complications as are possible with this upcoming surgery. 
 No matter what, right now I am feeling scared about the next two weeks.  I would love for Aurelia’s surgery and recovery to be as smooth as possible, but I know our girl and there is bound to be some sort of a complication.  I take solace in knowing that Madison is just a car ride away.  And perhaps when Aurelia is stable, I’ll go home for a night.  Or maybe bring her back to Philly.  After all, I’m sure that she will be missing her sister (and her Mama and Daddy) just as much as we’ll be missing her. 

Phew!

I'm sure I've used that title before, but man am I tired. It has been a whirlwind these last three days. Aurelia and Madison are adopting to life at home again, and for the most part that's going smoothly. Aurelia does her best to be good natured even as we turn screws in her jaw every day, disinfect and slather up her ears in ointment. Madison is coming around to once again be the girl we knew in April and May, but this is the first time I've seen her adaptation slowed somewhat by jealousy. Her needs have visibly intensified for the first time since this odyssey began.

Our poor cat Ulysses had a serious infection on his hindquarters. Due to stress, we hope, he started rubbing his ass along the rug while we were gone. He rubbed his skin raw. He was a bloody, swollen, infected mess. Now he's still swollen, but he's shaved, bathed three times a day (which he loves), and instead of bloody he's all covered in a sheen of ointment. Yes, that's right, I get to rub ointment all over my cat's privates, including his butt. Be jealous. In the pity category, he is a cone head kitty for a few weeks and has to stomach the indignity of being given two different medicines throughout the day. That's a fun time for everyone, let me assure you.

It has been an interesting time for me and Jillian as caretakers during this week long hospital respite. Aurelia's care schedule is so complicated and covers so many medicines with changing dosages each day that we had to make up medicine and care charts, different ones for each day, so that we can be sure she comes off her pain medication comfortably. It's been challenging to balance those needs (which are frequent), Uly's needs (less frequent), and Madison's increasing needs (less frequent still, but more than ever before), with our needs to catch up with and take care of everything here at the house from our recent stay away.

Now that we are on the second half of the week and moving toward our next stay at CHOP things are beginning to shift into planning mode for our time gone. We think we'll have Madison stay here at the house with my in-laws to reduce the burden of travel on her. We are also thinking about how we'll handle Ulysses and the other household issues that my in-laws would have to take care of while we're gone; we are appreciative of their help, but we certainly don't want to abuse their good will!

As the pace quickens I hope we don't forget anything. We'll see!

A fast few days

We have made our way to the step-down unit in CHOP. In brief, Aurelia chugs along, improving with each passing day. Her pain medication woes lessen, her strength increases, and her oxygen doses decrease over time. Today she's needed no additional tylenol or ibuprofen, she is down to 1/2 a liter of oxygen, and she managed to sit upright on her own with limited support for nearly a minute. All these are wonderful milestones.

We are pushing the doctors to let us go home for even a bit before her next surgery on the 13th. We have to return here on the 12th as it is, so any time at all would be welcome. Some sense of normalcy brings with it amazing relief, even for a few days. I imagine we will be back here for two weeks more starting on the 12th, so I pray for a break soon. Our family was together at home for only a week after school ended for me before we traveled to Connecticut and found ourselves here two weeks ago.

Let me say thank you to so many of you who have supported us; your facebook messages, blog comments, phone calls, caring for our cats and one helluva hardy fish at our house in Gettysburg, and the countless prayers, positive thoughts, and well-wishes have sustained us mightily. One day last week more than 100 people read our blog, sending their good thoughts and prayers Aurelia's way, and for that we say 'thank you.'

It has been brought home to us time and again, this most recent stay no exception, that our employers, the Northeastern School District and Carroll County Public Library System, are amazingly compassionate. Colleagues have sent cards and gifts, offered help and support, and have made themselves available to us in this, and all our other, times of need. Thank you. You have helped raise our daughter and have made sure that Aurelia not only lives, but lives well and strong. You are a part of her family and we look forward to the time she meets you all.

I want to add, too, that so many of you have asked after our other daughter, Madison. Although only two, in the last year and a half she's had live-in house guests for nearly twelve weeks when my wife was on bed-rest with Aurelia, she has had to live away from home in a hotel room for nearly four of the last ten months, and she spent nearly three months with her dad two hours away in Gettysburg, as I had to work immediately after Aurelia's birth. Madison endures with great poise, and determination, and joy. Such pure, happy joy as only a two year old can have. She has been a gift to all of us, helping us laugh and smile, and encouraging us to always remember that family, no matter the challenge it endures, is most important. You have all helped raise her as well as Aurelia, in your own way. Thank you.

What a whirlwind

So. Here we are. I wonder why it is this blog only ever sees attention when I have difficult things to post? We came here Sunday night from Connecticut (after visiting parents on both sides) to participate in a sleep study. We wanted to see if Aurelia had sleep apnea. The test revealed severe apnea, to the point of her oxygen saturation dropping thirty to forty points into the 50s. The results astounded us, making me question my ability to care for Aurelia at home; how could I have overlooked something this dangerous? We gave her oxygen, measured her saturation rates and even monitored her O2 levels daily, so how did we miss sleep apnea this bad?

Little did we know, but babies with terrible apnea often learn to position their bodies optimally for improved breathing. Aurelia's preferred sleeping position was on her side, 3/4 turned, back arched, head back. She subconsciously moved her tongue forward in her palette and minimized the impact of enlarged adenoids every night. During the sleep test, wrapped as she was and forced to lay flat on her back, she sounded like a freight train rumbling on decrepit tracks, squealing under heavy load.

Since 3:00 a.m. that morning we've been reacting to constantly changing circumstances, expectations, assistance, and fears. Monday came and went without any surgery and only the beginnings of a plan to treat Aurelia and Tuesday brought more frustration as plastics, ENT, and cardiology attempted to develop a care plan for our little girl. We did our best as a family to stick together though we all felt completely helpless and unable to control any part of the situation. Jillian and I tried to get organized for what could be a multi-week stay at CHOP, and Madison persevered valiantly, trying to have fun and understand why her sister was so sick and we couldn't go home to see our cats, Ulysses and Shiloh.

Frantically, we canceled therapy and doctor's appointments for this week, made arrangements for friends to care for our cats, secured lodging at the Ronald McDonald House, and convinced Jillian's parents to come down for a few days during and after Aurelia's surgery. We completed these tasks amid ever changing plans for Aurelia. Doctors informed us that Aurelia's care could require weeks at the hospital, that we'd be having one surgery, or two surgeries, maybe repairing her cleft palette, maybe not, maybe looking at a tracheotomy, maybe removing her tonsils, maybe doing nothing, maybe moving her jaw. What registered clearly for us was that until these breathing treatments were resolved, Aurelia would not have her next heart surgery in July.

We trust the care teams at CHOP with our daughter's life, so really we knew that our preparations had to be for the most severe scenario - a two to three week recovery from multiple surgeries leading straight into her next open heart surgery in mid-July, with us getting home sometime right around the beginning of August. I cried, cursing how a stupid sleep test could turn into more than a month away from home. I fumed, infuriated that my family was thrown into tumult with little I could do to restore balance and order.

To make Aurelia's (and Jillian's) time in the cardiac intensive care unit somewhat easier - remember that these rooms are four pods a piece, with limited family members allowed bedside by each patient, I left Philadelphia with Madison Tuesday. To her credit, Madison rallied her spirits here wonderfully, but she is just a bit too loud for promoting appropriate care in an intensive care unit. At home I could both occupy Madison and take care of some loose ends at the house. Jillian remained with Aurelia, focusing her care entirely on our little one as surgery approached.

We went into surgery this morning with a plan in place. Aurelia would have tubes inserted into her ears, her throat and bronchial tubes scoped, her vocal chord paresis examined, her enlarged adenoids trimmed down, and her mandible advanced. The surgery would involve both ENT and Plastics, and last for several hours. Aurelia has come through that surgery wonderfully and now recovers. In future posts, I will talk more about the procedures and some of the people working on Aurelia during this most recent stay here at CHOP.

It’s been too long, and not long enough

So Jillian and I haven’t written in here in a very long time. In some ways we’ve been avoiding this blog – it has a lot of painful and hard memories associated with it, and I think we feared writing in here as well; at least I know I did. To me, writing in here meant that I was at CHOP and Aurelia was not well.
I remember the joy Jillian and I felt when we celebrated our ‘Home” day, where we had been home with Aurelia longer than she was admitted at CHOP. I remember all the times where we looked at each other and one of us said, “We really need to do a blog post.” I remember, too, feeling reluctant about writing anything, because I was at home and that blog was about some mythical past where I was at the hospital.
Well, we’re back at the hospital again, and once more writing for a wider audience. Aurelia has had a series of colds for the last two to three weeks and a few days ago she developed a particularly nasty cough. This worsened until yesterday when she developed a low grade fever. Being a CHD baby with a constellation of other issues the safe and prudent bet was the Hershey ER. We convinced them not to send an ambulance (we were both getting very nervous about this first visit, even though we know that these stays will be all too frequent), and even though we both knew that we’d be admitted, we secretly hoped for a lookover and then home with daily trips for observation.
No such luck. We’ll be here for at least one more day, but I suspect longer. Truly, I’m thinking we’ll be here at the hospital until Aurelia is fully clear of her nasty cough. She’s receiving deep suction, PT, and regular breathing treatments. She’s also on a nasal canula which they attempt to wean throughout the day (with no success). Other than that, it’s life as much as normal allows.
So far we’ve only had to have one chest x-ray, and we’re suspecting an echo at some point today. Thankfully our CHOP cardiologist has an office in Harrisburg, so it’s easy to keep them updated. I’m guessing that Monday will be spent updating the CHOP teams with all that’s currently going on here at Hershey.
The folks here have been wonderful, and very attentive. I’m so thankful for the CHOP parent binder that has so many of Aurelia’s summaries and information inside; it’s been a blessing having that information at our fingertips.
I’m surprised, too, at how quickly our hospital lexicon emerged for this latest stay. I suppose having a CHD child is a bit like riding a medical bicycle where you never really lose what’ you’ve learned.
At any rate, we’ll keep you posted throughout the day, and maybe we’ll get over our reluctance to writing and maintain this blog once we leave here as well.