PICU STAY
It is hard to believe how much has happened since my last post. Each day had become a bigger struggle for our little warrior. The laryngospasms were taking their toll and leaving her very fatigued, swallowing and breathing was getting increasingly more difficult. Sloan also had a bit of blood in her secretions and we tried to identify the source by seeing a new ENT. During Sloan’s ENT scope, she went into a horrible laryngospasm and then had several more that day. It essentially caused her to stop swallowing and eating altogether; we are assuming this was neurological as the scope didn’t actually cause any physical damage. Shortly thereafter, we went to the ED and had an ng tube placed for a short-term solution while we figured out our next steps options. The ng tube lasted about 12 hrs; she did fine with it overnight and got 3 good feeds. But the next morning, she couldn’t clear her secretions with the tube in and she choked on her secretions, stopped breathing and started turning color. Our instincts kicked in and we started baby CPR; I did the baby Heimlich while Willie called 911. Thankfully, she almost immediately started breathing again. That morning we headed to Lurie Children’s ED and have been here in the PICU since. That was September 15th.
Once admitted, she was having multiple, long-lasting laryngospasms every day and her oxygen saturation levels were dipping extremely low. She also was only getting basic IV fluids. After a few days (and about a week total of hardly any eating), she got a PICC line so that she could get TPN (basically IV nutrition) until she could get a gtube placed, which she finally got on Sept 21st. Willie and I were scared enough about the procedure but also what it was going to be like to take care of the gtube. With the doctors, we had to prepare ourselves for the possibility that there could be complications when trying to extubate her after the surgery. This could be that she had to stay on a breathing tube and ventilator for days until we could try to extubate again or even that she may need a tracheostomy. This was not the first time that we had been encouraged to think about her getting a trach. Thankfully, she was able to be extubated right away and was doing great! She started feeding through the gtube, taking a slew of medications (silver lining to the gtube is not having to taste the meds!) and CPT. Since then, we saw immediate improvement! Sloan’s spasms were occurring only once a day and had significantly reduced in severity and duration. We even got a few smiles and heard her make those adorable little cooing sounds again. Hard to know what we can attribute her improvement to because we made so many adjustments to her therapy, but something was working!
The only problem was that she still wasn’t swallowing anything, not even saliva. This made managing her secretions increasingly more difficult and the cause of her remaining spasms. We were hyper vigilant about suctioning anything in her mouth to prevent choking or a spasm. This meant we were sitting next to her every minute of every day monitoring her. Willie and I haven’t left Sloan’s side, except for the daily coffee run downstairs or the occasional shower while one of us stays on watch. We were hoping with a little time, plus now with the gtube and gene therapy, that she would get stronger, outgrow the spasms and eventually swallow and eat by mouth again. So we settled in taking shifts and suctioning almost nonstop. We don’t really know what sleep is anymore. The physical and emotional exhaustion goes way beyond the usual new parent feeling. And the hospital setting is definitely not the place to get rest and recover. Which is why we were so excited that we were finally getting discharged on Sept 29th after a 2 week stay where we had barely left Sloan’s room. We couldn’t wait to get home, sleep in an actual bed, and see our Darby girl!
Uncle Bob had come to pick us up, but just as we were loading the car, Sloan couldn’t manage her secretions while in her car seat due to the position she was in, choked, stopped breathing, and starting turning color. We tore through the lobby to the ED and then we were readmitted back into the PICU - same room even. Everything went downhill from there. We were back to intense, long-lasting, back-to-back spasms. With each one, we were more afraid. After many consultations, the difficult decision to have her undergo a tracheostomy was being more heavily considered. And then, the worst of the worst happened. Sloan coded… twice. The first time was on Saturday and she came out of it right before we made the call to intubate. The second time was yesterday. Her body became too fatigued to fight the spasm, so we had to allow the medical staff to intubate in order to save her life. At this point, the decision was pretty much made, and after one more round table with all the experts, the consensus was that if the gene therapy could even have a chance to stop progression of this disease, she has to undergo a tracheostomy. The surgery is scheduled for tomorrow afternoon, October 6th, so once again, we ask all of you to pray that the surgery will be a success and so that Sloan may thrive thereafter.
Although our hearts are broken at the thought of not hearing her voice again, or doing some of the things we had dreamed about when I carried her, right now our only concern is to save her life. We pray that having the trach will allow her more freedom and safety from the spasms, to improve her quality of life so that we can enjoy her smile for years to come and make beautiful memories together as a family. We also pray that in the time we have with her, that there are continued medical breakthroughs that may change the prognosis for this devastating disease. So to all of our very special friends and family, please pray for God to bless the good doctors who will perform the surgery, the scientists who will continue to look for treatments and for our Baby Sloan to come through this surgery tomorrow so she can have the best possible life we can give her.
Thank you always for your continued prayers, love and support!
Love,
Maggie, Willie and Sloan
