This week has been a tale of competing ideas. Our primary attending prior to yesterday's shift change, Dr. O'Connor, kept a very close eye on Aurelia's breathing, hoping to take her off of room air flow (2 liters) by the end of this weekend. There has been a good deal of concern with Aurelia's breathing. Typically, cardiac kids her age are operating their respiratory system unassisted, but Aurelia is a bit different and so we are trying to figure out why she needs flow assistance when it comes to breathing.
Similarly, Aurelia's progress with bottle feeding is also a concern. While cardiac infants often struggle to get started on the bottle, there is a good chance of success to not only resume bottle feeding, but eventually transition back to breast feeds. Aurelia had been taking about 5 ml on the bottle during her feeds, but she wasn't making much progress otherwise and was having some trouble with acid reflux. As a precaution Dr. O'Connor called in the specialists from Ear/Nose/Throat to examine her esophagus. It turns out that Aurelia's streak as a great gambler continues. She once again came up triple 7's when betting on her vocal cords being paralyzed during heart surgery. E/N/T found that her left vocal cord came out paralyzed and this most definitely would impact any attempts to bottle feed (as would her cleft palette). This can also make breathing a bit more difficult as well.
Even with these small changes the team decided not to proceed with the heart catheter that had been scheduled for either Friday or Monday. Dr. O'Connor felt that the data on heart pressure wouldn't really give us any more information that would be useful regarding her breathing, particularly since her echo-cardiograms came back so excellent both last Wednesday and Friday.
The plan would be to use this weekend to wean Aurelia off the room air flow and begin to talk about discharge sometime early next week, getting us home by the middle of the week. Jillian started talking to our case manager to arrange for home care and equipment use for Aurelia's journey home. She arranged at least two to three home nurse visits and set up our rental of a feeding pump. She also will make sure we have a family meetings sometime early next week to talk with all of the members of Aurelia's team to be sure that we have plans in place for all of Aurelia's problems.
A family meeting to coordinate care is a real concern for us as we move closer and closer to coming home. The details are getting so numerous that it is hard to track them and the big picture at the same time. For instance, Aurelia's feeds here are supplemented with 22 calories of enfamil formula, which is something that we have to demonstrate proficiency in before leaving. We also had to take an NG tube class and a CPR class yesterday and get briefed on how to use the pump. Details like these are important but begin to block out how it all fits into the big picture, particularly when you add in the seven medicines she gets, the different timetables, and cleaning procedures for all the equipment.
All of this became a bit more complicated when Aurelia exhibited respiratory distress Friday night into Saturday. The result was bumping her back to 2 liters of air flow (she had worked herself down to 1 liter!) and avoid weaning her off before discharge The plan to discharge now included her going home with oxygen and us leaving on Monday (according to our nurse). Leaving Monday?!?!?! When we heard this yesterday, we were stunned.
Needless to say, our nurse giving us this information greatly distressed everyone. We had no training on using oxygen tanks at home, or as portable devices, we didn't even know if our case manager had or could make arrangements for all the needed equipment before discharge on Monday! And what about our family meeting? And was there a class we needed to take? And we hadn't even inserted her feeding tube on our own, OR done 24 hour care! And what about the urology test that was to come up in a week or two? And what was the plan with plastics? Or with Occupational Therapy and Speech Therapy?
Complicating issues was a shift change in attending doctors. Dr. O'Connor went off as our primary and Dr. Vetter came on; we did not know what to think about this change because it seemed that once again when the weekend came with its new doctors and nurses the pace to have us discharged quickened. We felt genuinely overwhelmed and under-prepared and upset that Aurelia would be leaving here on Monday. We felt a bit frantic, I think, yesterday afternoon when Aurelia's acid reflux took a hard toll on her. She had several spit up incidents, needed a lot of suction, and cried her small vocal cord paralyzed cry for most of the afternoon. So sad, that cry.
Thankfully, when Dr. Vetter came to us she put all our fears at ease. She introduced herself and prompted me to ask all the questions I had about Aurelia's care. I started by saying how concerned I was that we didn't know why she was breathing so hard and needing room air flow to stay oxygenated, and how that might impact the plan for us to discharge on Monday.
Dr. Vetter's reaction was fabulous. She held up her hand politely, indicating for me to stop, and said, "Well let me put that rumor to rest, because I don't know where you heard such a thing. There is no way this little girl is going home on oxygen when I don't know why she's breathing so hard. I've called pulmonary for a consult and they'll be stopping by and taking some x-rays tomorrow. She's not going home anytime soon."
I about cheered and kissed the woman. She told us that Aurelia was an excellent candidate for a program that kept her as an outpatient here so that moving forward we could coordinate all her care under one umbrella and be sure that we need not have many multiple visits that complicated communication between doctors and the quality of Aurelia's care. She said that she really felt the need for a family meeting and would be pushing the case manager to set one up when she came in on Monday. Additionally, we stopped bottle feeds for the foreseeable future until we know why Aurelia's having such trouble breathing, and what the progress is with her vocal cord recovering from its paralysis.
So, in brief, that's where we are - a few other things in list form to keep you all in the loop.
- If pulmonary's consult doesn't yield anything, then we'll likely have the heart catheter sometime in the upcoming week. Pulmonary did a cursory examination this morning and will present to the attending there after the x-ray is taken. We have not yet heard the result of Aurelia's consult.Dr. Svwast, our lead cardiologist is now contributing to that discussion.
- Our case manager will be contacting 'complex scheduling' and arranging the family meeting starting tomorrow.
- Aurelia's medications include a calcium supplement, a chloride supplement (now and again), prilosec and zantac, amoxicillin, and lasix. She receives a number of them throughout the day, some multiple times a day, some with feeds, some without. They are hoping to increase her reflux medication as one possible solution to her reflux problem. Another is extending the feeding tube beyond the stomach sphincter.
- We haven't heard anything in a bit from urology or plastics. Expect new updates later this week.
- While we are upset about the lack of bottle feeding, we are glad that we at least have a plan in place to help Aurelia's vocal cord issues as much as we can.
- They are drawing labs on Aurelia daily, looking for low calcium and chloride. She's been tested twice for a rhinovirus (cold) that has been going around the hospital. So far, she's come up clean each time.
- She has the cutest little baby butt ever. EVER!
That's all we have for now, and as this post is wicked long we'll call it a day. More pictures and maybe some video coming soon.
Hey Charley, thanks for the update. It was good to talk with you both the other day, and my heart goes out to you. I try to resist any type of advice-giving in this situation, but the one thing I will say based on the hard learning we did in our situation is that it absolutely your RIGHT to a family meeting and nothing should be sped up or done without that meeting first. I hope that it is scheduled soon, and if you don't hear anything you are not being pushy to follow up. I read in a preemie book the best piece of advice I think I heard while the girls were in the hospital, which went something like this: It's true that sometimes when you speak up or ask extra questions you may annoy a nurse, and that annoyance may last a day or two. If you ask that nurse in a year if she remembers the situation, she'll say, "Who?" However, if you don't ask the questions and some sort of complication arises or a decision is made that upsets you, you will still be thinking about it a year later. I am, of course, not saying it as eloquently as it was written, but you should not feel bad about being an advocate for your child. You are her only voice, and while I am sure the team at CHOP is awesome, sometimes rogue nurses and doctors are influenced by other considerations such as opening beds and meeting insurance timelines, as we also personally experienced.
ReplyDeleteAlso, reflux can hugely aggravate breathing issues -- both girls had reflux, but Amara's was really bad, and almost every brady she had when she came home was feeding/reflux related. I found lots of anecdotal help from parents of other preemies, and I'll be glad to share anything that's helpful when Aurelia comes home.
We are cheering for Aurelia each and every day, as well as the three of you. I know as the weeks wear on the days start to feel really long and fatigue starts to set in. Please know we are all here for you in whatever way is helpful. I am hoping that today is a good day. Hugs to each of you.
Add to the many positives of keeping a blog like this -- bookkeeping! It is amazing how many things you guys are keeping in your heads right now and I imagine you will be be impressed with yourselves when you re-read your blog someday in the future and wonder, "How did we keep all that stuff straight!?" But you just do it because, as amazing as the CHOP doctors are, none of them care and love for Aurelia like you and Jillian do. It sounds like you both are doing a great job as Aurelia's advocate which is not an easy role to play at all.
ReplyDeleteIt does seem like there might be some light shining into this long tunnel you have been traveling through. I am hoping that this week Aurelia's breathing starts to improve so that you can all start thinking about taking her home. What a day that will be for you guys!