Happy Half Birthday Sloan!
We celebrated a big milestone yesterday... our baby girl turned 6 months old! The time has gone by in a blink of an eye. Every day of the past 6 months, despite their challenges, have been such a gift to be with her and we're trying to make the best of unimaginable circumstances. It is so important for us to celebrate whenever we can, especially given how unknown our time with Sloan will be. We can't wait for the day that we get discharged from the hospital - we hope to show Sloan all the wonderful world just waiting for her outside! We keep talking about a bucket list for her and there's so much to be added!
Friday marked a month that we've been living at Lurie. A whole month of worrying (yes, even though we're in the safest place for her), sleeping either on a recliner that doesn't recline all the way or a small couch that isn't long enough for either of us, or sometimes not sleeping at all. A month of to-go meals, constant interruptions of strangers in/out of the room, showering basically over the toilet, missing our fur baby Darby when we need her snuggles the most, etc. Maybe COVID quarantine prepared us for this, so thankfully Willie and I still love each other after living in such close quarters for so long. And COVID precautions have made being here at the hospital ever harder. We're only allowed one visitor and we can't even change who our designated visitor is. Our laundry lady, aka Grandma Beth, has received the honor of changing out our clothes, toiletries and other necessities.
It's been a roller coaster of emotions with the celebrations as we've had some health setbacks too. Sloan had her first trach change last Monday. Something that should have been so routine and take only a few moments, turned into utter chaos and panic for everyone in the PICU. Sloan coded for the third time in 2 weeks. Nobody could explain what happened except her heart rate crashed and they couldn't get chest rise while bagging her. Even with the trach, they had to intubate until they could get the new trach re-established and get her breathing again. She spent the rest of the day heavily sedated. Our little warrior bounced back as she continues to show us how strong and determined she is to beat this disease. We tell her every day how brave she is and how proud we are of her in this battle.
She then spent a couple of days battling withdrawals from the sedation meds and painkillers. She had fever, sweating, vomiting, high heart rate, and was super uncomfortable. It took us a really long time to figure out the right balance of medication while being able to wean her off of them comfortably. It is heartbreaking to watch her go through it and she won't be completely off sedation for another few days, if all goes well. We were really excited that she came off the ventilator on Friday and has been off of it since! She's just getting humidified air through a "trach collar" now, which is great improvement. Sloan also had her second trach change yesterday and the ENT team who did the original surgery did the change themselves after what had happened last week. This time, they came prepared with a camera scope so we could see what was happening during these changes. I don't think any of us were prepared to see that she was having tracheomalacia - a spasm of her trachea causing the lower airway right above her lungs to collapse and preventing her from breathing. It seems just like her laryngospams (same spasm of her vocal cords), which is what the tracheostomy "fixed." There doesn't seem to be any recommended treatment for this other than to pray that she will continue to grow, get stronger and eventually outgrow the spasm. We had originally hoped she would outgrow the laryngospasms as well. This is extremely scary as this can be life threatening (just as the laryngospasms proved to be) but the only positive is that because of the trach, now we can get further down her airway to give positive oxygen pressure or to suction her secretions and hopefully avoid any life threatening events.
The game plan for now is that we'll continue to be monitored in the PICU while hopefully she weans off the meds, doesn't need the ventilator, and gets her ERT treatment later this week. As always, we pray that she continues to grow and get stronger! We are so excited that Sloan is even back on her original birth growth curve since getting her gtube! What a wonderful reason to buy her some new outfits! If all goes well in the coming days, we will hopefully move out of the PICU while final preparations are made to go home - like having all the new equipment delivered and at-home nursing care established. Fingers and toes crossed that it all goes quickly and smoothly!
Thanks for all your continued support and prayers!
Maggie
