Moving Up

Sorry to have gotten a bit behind on here, things have been busy the last few weeks. I guess I have not updated since Avelyn’s heart cath a couple weeks ago. She went into the procedure in a better state and more stable than she has been in a while. She was on .3-.1 liters of oxygen and tolerating feeds well.

Sending her down for the cath was very difficult for us. We knew it would make her worse in the short term. We knew it would affect her kidneys and her pulmonary status. We knew she would be intubated and sedated, but just because you know something does not mean you can prepare for it in this cruel CHD world.

Avelyn did well for the actual cath procedure but findings were not what we had hoped. Her pulmonary artery anatomy is worse than expected. Recent echos had been suggesting growth of her left pulmonary artery, unfortunately this was not the case. Her left pulmonary artery was so small that if the cardiologist hadn’t intervened the artery itself would have withered away in a few months’ time. Meaning her most invasive open heart surgery, that sent her into renal failure and onto ecmo (when she all but died on the operating table and was maintained with chest compressions) would have been for nothing. So we are thanking god that the team pushed the heart cath and we agreed to it. Otherwise, I don’t think Avelyn would have a chance. We later learned that going into the cath Avelyn’s left lung was receiving an estimated 5-10% of her pulmonary blood flow.

Anyway, while she was in the cath lab we got a call saying that a stent would need to be placed in the left PA. I relayed this information to Sean in shock. Maybe in the future getting a stent won’t be so bad, but for now it means surgical removal in a few years, aka another open heart surgery. Sean and I were both so disappointed, honestly disappointment doesn’t touch the feeling. We held it together, knowing and trusting the doctors and surgeons would make the best decisions concerning Avelyn’s wellbeing. We went into meet Avelyn’s cardiologist after the procedure believing that he had stented the left PA. However it turns out that just prior to placing the stent, he decided to try a more aggressive form of ballooning. Surprisingly her artery responded very well. Her superior vena cava was then ballooned in the same way. Her left PA is now about twice the size it was prior to the cath. Her left sided pulmonary blood flow is now about double what it was, which still is less than half of what it should be. This causes her right sided heart pressures to remain elevated, too elevated. At current levels, she’ll eventually go into right sided heart failure. To prevent this, she’ll need to have multiple more heart caths to continue working on her pulmonary artery narrowings. We have hope that eventually her right sided heart pressures will decrease to a manageable level, though it’s very unlikely that Avelyn will ever have normal right sided pressure.

So back to the story…. Avelyn did well with the cath procedure but with the amount of work she had done, the cardiologist warned us to be prepared for a severe reperfusion injury to her left lung. Meaning significant left sided pulmonary edema. We were told to be prepared for about a week of intubation. However, as usual Avie played by her own rules. She did great with the cath from a pulmonary standpoint. She was extubated that night to my and Sean’s amazement. But then things started to get much harder for our sweet baby. She grew more and more delirious and was in pain. She couldn’t sleep and cried for hours on end because of adverse sedative medication effects. It was a really hard few days on her. All the while her feeds were held, and then when they were restarted it was at a low rate because her feeding tube was pulled back to her stomach rather than her intestine (which needed to be done for her to eventually go home).

She tolerated the feeds into her belly well for a day and then started vomiting and having blood in her stools. So feeds were, once again, stopped and she was placed on yet another NEC rule out. In this time she was found to have an intestinal infection, likely due to bacteria overgrowth from being on vanc (which is from her NEC and bacteremia episode last month) for so long. So the vanc was stopped and different antibiotics (flagyl and Cipro) to treat the new infection were started. After three and a half days, feeds were reintroduced and she tolerated them from a digestive standpoint. For the first few days she was vomiting a lot, nearly hourly. She also seemed to be in pain. I took my fair share of flagyl for a couple years while fighting Lyme disease and for some people, it’s rough. I guess our poor Avelyn takes after me in yet another unpleasant area. She struggled on the flagyl and eventually I asked the infectious disease doctors to discontinue it early. To me, it wasn’t worth the intestinal irritation, vomiting, loss of calories, and risk for aspiration it was causing. Since it was discontinued she has done much better. She’s still somewhat gaggy but it’s nothing compared to before.

Throughout all this, Avelyn was transferred to the cardiac step down unit. I had always hoped she would be in a more stable position before going up to the 7^th floor, but life never really works out like we hope. Thankfully Avelyn has done well since transferring up. She hasn’t been requiring oxygen, the gagging and retching have improved and  she hasn’t shown any further signs of infection. She continues to struggle with skin integrity, due to malnutrition after going so often without feeds in the last month and a half. She also continues to have these episodes that appear like an allergic process. Her eyes, hands, feet, and inner legs  flash very red and then fade over an hour or so. However the incidents are not as often as they were earlier in the week. So I am hoping this is a weird side effect from the Cipro antibiotic, which she finished her course of today. She is now officially antibiotic free! For the first time in months! It’s a big deal and I am praying her natural flora can repopulate and her little intestines will have a break. She has been having diarrhea for months, which is just so sad.

All in all, it’s been a very trying couple of weeks with huge milestones. Avelyn finally got out of the ICU after 293 days! She has been outside every day since transferring and now knows what sunshine and wind feel like on her face. She has been able to get more rest in a quieter and less acute setting. All of which has been great for her. But it’s a big transition. Sean and I spent 292 days in the ICU right alongside her, getting the know the staff, routines and environment. So much is different on the 7^th floor and it’s been a big adjustment. But after all we’ve been through, it’s not as overwhelming as I thought it may be. We get to participate more in her care and treatment plan now that she is more stable. Sean and I often are the ones to take her vitals and administer her medications, which allow us do so how and when is best for Avie. Believe it or not, we now spend even more time at Avelyn’s bedside than ever. We don’t leave her alone since going up to the floor. The nursing staff is spread more thin and the doors are opaque.
(though she is still on constant telemetry) I worry too much to leave without someone there to comfort her if she gets upset or lift her up if she vomits to prevent aspiration.

As time goes on, I hope my to share Avelyn’s growth and development. I hope to show our girl continuing to conquer challenges head on like she always has, but I hope to also share more normal accomplishments. Like more photos of our strolls out to the patio!

As always, thanks for checking in. I hope all is well with you and yours.   

Between blog posts if you would like to check in on Avelyn's journey please follow my Instagram. 

If you choose to share this or any of my previous posts please do! But I ask that you do not alter my writings in any way and provide a link to the shared material. If you have any questions about this request, please ask me.
Thank you so much! 

An array of photos from the last couple weeks are displayed below chronologically. She's cute, enjoy!