Lily has been home a week and boy does it feel good. We are so thrilled to be together again under one roof, especially little sister Charlotte. Although it can be a bit overwhelming for Lily seems to be happier home–her blood pressure is overall lower than it was at the hospital. In the past […]
Lily had a CT scan and it shows no appendicitis. Everything is okay and we are cleared to go home today. So happy to finally go home and be together as a family under the same roof. It has been nearly 16 weeks since Lily has been home. We feel ready to go home and […]
Our discharge that was planned for today is delayed. The past couple days Lily has been very uncomfortable, not sleeping and crying in pain at times. And this pain has brought her spasticity back. 🙁 Now we are trying to figure out what’s wrong. On her last 2 X-rays there has been a “foreign object”/a […]
Lily is doing very well thanks to her new Baclofen pump. She seems very comfortable with very minimal spasticity. We are happy we made the tough to decision to have it implanted. We are still anticipating heading home by Tuesday. But as always we are just going with the flow because things can change at […]
Lily remains in the PICU today. She is recovering and doing well. She is being kept comfortable with moriphine but hopefully that wont even be necessary by tomorrow. And now that she has the Baclofen pump her doctor has already eliminated her other spasticity medication and is weaning another one. And boy what a difference […]
Thank you all for your prayers and well wishes for Lily and her Baclofen pump surgery this morning. Everything went as expected with no hiccups. She is still asleep from the surgery and is resting peacefully in Millers pediatric ICU. We will keep you posted on her recovery. God Bless, Leslie
Well, one of the days we have been waiting for finally yesterday. We finally received confirmation from Lily’s genetic testing whether or not her cardiologist’s suspicion’s were right; if she has CPVT (Catecholaminergic polymorphic ventricular tachycardia). Her results were POSITIVE. I’m relieved that we now know for sure but terrified if her little sister Charlotte […]
It doesn’t look like we are heading home tomorrow. Whew! Even if we were to be discharged we would fight it because we don’t have any equipment, medications, a hospital bed or anything set up at home. It’s all in the works but nothing is at the house. We have stuff to pack up, furniture […]
We just found out that we may be going home Friday or maybe as early as tomorrow. We knew we were on our way out next week, but tomorrow..??? I honestly don’t know how that is going to work. We have NOTHING at home for Lily’s care. I know they are feverishly working on getting […]
On Monday we moved out of ICU. Although we moved back to Miller West Rehab facility Lily is technically not in Rehab. Lily remains under a pediatricians care and still closely followed by her cardiologists and GI doctors. Our insurance company is not clearing her to return to Rehab right now. However she is still […]
