Day to day

Aurelia is doing well today. She’s moving around much more than she has in nearly two weeks, rolling from side to side, and the frequency with which she’s endured suctioning has decreased as well. The latest time respiratory visited for her treatments they didn’t need to clear her airway at all! That is very good news!

For now the task is to ease Aurelia off oxygen. For most kids this is a relatively simple procedure, but with tracheomalacia Aurelia has a bit more of a challenge. They have taken her off oxygen twice so far and her SATs drop into the mid ‘80s. I’m guessing we’ll be here another day or two barring any setbacks. Aurelia’s airways will have to be clean and rested before she’s able to gather the strength necessary to breathe on her own. But, that’s what happens when your tracheal cartilage is a little too weak to keep things open.

Still, all things considered the last two days have been great. Aurelia is definitely doing better and our family is enduring life at the hospital tolerably well. I still wonder what it is about hospitals that makes you so darned tired. I’m wondering if there is a psychological study in the making here! 

It's been a winding road

It's been several days since we posted and Aurelia endured ups and downs during that time. She got past her cold, and the flu, with relatively little fanfare. In the days since Jillian's last post her parents both stayed behind and watched over Aurelia's recovery with us until Wednesday. Jillian and I made a good transition once they left, balancing all these changes well and moving into the Ronald McDonald House here in Hershey.

What a lovely facility. The people there are very nice, the house is much less restrictive, and it is right across the street from the hospital. I feel very welcome there, and the house is in terrific shape. Just being this close to Aurelia has been a boon for our family, allowing one of us to sleep with Madison close by (on tempurpedic mattresses, no less), while the other keeps vigil with Aurelia. My work is only thirty to forty minutes away, allowing me to take only one or two days off here or there, so I don't have to burn sick days needed for Aurelia's anticipated second surgery, and being so close has made us much more comfortable confronting any deficiencies in Aurelia's care.

The hospital itself, with the exception of a few days in the middle of the week, has done a nice job caring for Aurelia. We've only encountered one or two bumbling/disengaged nurses, and after a particularly bad night a frank conversation with the attending increased communication between her care team and us as parents. The night in question saw Aurelia (who had been moved out to the general pediatric floor from their intermediate care unit) have her feeds not only delayed by hours, but wasted, spilled onto the floor by a nurse who had more concern for the online course she was taking than getting a feeding tube connected correctly. Add to this an increasingly difficult couple of hours where her need for deep suctioning (where they stick a tube down your nose into your lungs) increased so much that every thirty minutes nurses had to intervene to improve oxygen saturation rates, and what we had was a girl who needed 1 liter of oxygen just to maintain baseline oxygen levels.

We found ourselves in the intermediate care wing again, waiting in a little pod for a room, at 3:30 a.m., with our possessions (and a cot) scattered around us. With a fever spiking, Aurelia retching on phlegm, and my temper fuming, we couldn't even find an attending, let alone a resident. Needless to say, Jillian and I were more than slightly distressed. Jillian took over for me the next morning and did a great job straightening out the staff here, and ever since Aurelia's care has improved, even though the diagnosis worsened.

Aurelia has been diagnosed with pneumonia. The first twenty four hours did not go well. Antibiotics started late, the chest x-ray took hours to schedule, and we had serious concerns that the course of action to heal our baby girl had been derailed by poor attention to detail. After their conversation with Jillian, however, things turned around sharply. Aurelia has been on the mend since, her fever holding steady, the garbage in her lungs coming up with increasingly less invasive suctioning, and her mood improving drastically.

She's sleeping well, smiling, laughing, and doing great for a girl that has had a serious cold, flu, and now pneumonia over the last three to four weeks. We expect to be here several days yet, barring any set backs, and we'll keep you posted.

Thank you all for your prayers and good wishes - they mean the world to us!

A Quiet Afternoon and Evening

It was a good day today. Aurelia was in good spirits for most of the day. She was awake for a lot of the morning and was happy to be playing with some of her familiar toys from home. She particularly loves her moose and her elephant, pulling each toward her, and often toward her mouth! I arrived with my parents and Madison around 11 am. Maddie was so excited to Aurelia she practically jumped into A's crib! She had picked out a lamb stuffed animal for Aurelia yesterday and was thrilled to give it to her. Aurelia even smiled and seemed to be pleased with her new toy. I think that she was most pleased to see her big sister! It was nice to see them together! Maddie has been a real trooper. We brought a suitcase of things for her to do and she spent quite a bit of time reading and playing with her magnadoodle. She is not nervous at all around Aurelia, which is a big difference since the last time Little A had a nasal canula. It really is a pleasure to see how much she loves her baby sister. When Aurelia gets fussy, Maddie gently pats her arm and says, "Calm down, Baby A. Calm down." It is so very sweet.

Aurelia is still receiving breathing treatments every four hours. She hates getting them, but she is so much happier after they are done. She gets a good suctioning right before and so the treatment works much better. She seems to have a fussy period each night between 7 and 8 or 9. Once she got her treatment tonight, she conked out almost immediately after receiving it! She is sleeping peacefully now.

I don't want to sound like a big complainer, but this has been a tough weekend for us (in addition to everything going on with Aurelia, Charley's grandfather passed away early Friday morning) since Charley and I have spent less than 15 minutes together alone since Friday night. It is hard to debrief as a couple when you can't actually spend any quality time together. It is a blessing that my parents were visiting and that they could help us with Madison (in fact, my mom is going to extend her stay so that she can help with Maddie in the mornings and evenings), but it is still hard.

I'm exhausted tonight and would love to write more, but I think that getting some sleep is the best thing to do. Let's hope that it is a quiet night too!

Time to settle in

And a good morning to everyone from Chocolatetown, USA. Here in Hershey we had an uneventful night punctuated with some PT and suction, and just a bit of tylenol. Aurelia did well last night, her SATs dropping nowhere near to the level they had the night before, and other than a return of her fever (which was very borderline) she made steady improvements.

This morning she is in fine spirits, playing with her toys in her crib, and making friends with today's nursing and doctor teams. We are still in the step down unit and we will likely be here for two more days at least. At rounds this morning we discovered that the rhinovirus she has is going around and giving kids a lot of trouble, setting some up for other infections like pneumonia and RSV if not treated quickly. This made us feel good, obviously, and somewhat vindicated as well. It's hard for people to grasp that even the common cold (what the rhinovirus usually causes) can end up creating situations terribly troubling for CHD kids.

So Aurelia continues to fight, and with a smile while she's at it. The discharge plan for Aurelia will come only after her lungs are fully clear and her secretions drop, and there is no fever. So, at minimum today and tomorrow, maybe longer. Jillian and I will be working to make plans for the week, so we can be sure that we are here to take care of our Sweet Pea.

A small, but significant victory

We just heard that Aurelia’s cultures came back positive for two viral infections, rhino and influenza b. The rhino is a relief because its symptoms are similar to RSV, and her flu virus is not particularly troubling. she’s doing well with her feeds and fluids, has had only one or two instances of loose stool since yesterday, and she has kept her spirits up wonderfully well.

I have been given the all clear to hold her at will, as long as her SATs hold up, and she’s done great so far. They were able to drop her down to barely any oxygen assistance, but they’ll keep it in, I think, until absolutely sure she can keep her airway open. They are still suctioning out a tremendous amount of fluid from her nose and back of her throat, and when she coughs her chest sounds like marbles crunching on broken pavement.

My guess is we will be here for a few more days, still, but the doctors may have different plans. We’ll see what news rounds brings.

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.