I suck. I have felt far from chatty since Lenn’s last stay in ICU. It took so much out of us. Seeing her code, being back in Tampa, being away from Ava- we were exhausted. Still feeling the residual effects of it all but a lot has happened so this update is well overdue.
To recap: Lennyn had staphylococcus epidermis in her brain and it had attached to her reservoir. They rushed her into an emergency surgery to remove the reservoir. She remained in ICU for 10 days on Vanco and with a brain drain (evd).
To anyone who has gotten butt hurt that theyre unable to meet her, put this in perspective. This type of staph is found on everyone’s skin and is harmless to the normal person. It found its way into Lennyn’s head EVEN WITH us isolating her and ON TOP of germ control in our house. It almost killed her. This is why she can’t be around the masses. As our dear nurse Dahlia said, there ain’t nothing for this baby in the streets, but germs. So we will see y’all after winter. We love you. We appreciate you. But we love our daughter more and none of us can handle any more life or death situations.
While in the hospital it was seen via ultrasound, AGAIN, that she had hydronephrosis (swelling of the kidney- excess fluid) so we’ve added a new specialist to the list and see a urologist for the first time Thursday.
Lennyn’s potassium had been very high so we needed to follow up with another BMP after discharge. This can cause heart rhythm problems. Luckily, it was fine.
We were approved by insurance to get her helmet. We went for our final fitting last Friday and go and pick up the helmet next Friday. Safety first for Christmas ❤️
We finally made it back to our PT, OT, and feeding therapy appointments this week. Her PT has been increased to 2 times a week from one so Monday, Thursday, and Fridays we are at John Hopkins for our therapy.
Lennyn was also approved for Early Steps. Her eval is on Friday where we will meet the RN and PT who will also be coming to the house bi weekly.
We have our next MRI on Friday. We will continue to have them every three weeks to keep a close eye on her ventricles and make sure she isn’t building fluid. So eager for those results.
We finally made to see our neurologist out patient. The ARNP recognized Lennyn from my blog and Facebook. Lennyn is a local celebrity. She is still having active misfiring but the keppra is keeping those misfires from being full blown seizures. We will do another EEG in two months because her keppra will have to be adjusted with weight. Her neurologist is calling this neonatal seizures right now. If she doesn’t grow out of them they’ll be upgraded to epilepsy.
We saw Lennyn’s GI for the first time since we’ve been discharged today. She ordered some tests because Lennyn has been having tummy aches. She was also kicked off Preemie formula because she thickkk and weighing in at a hefty 12 pounds 10.5 ounces. She no longer needs the extra calories. They have put her on a formula that *fingers crosses* helps her belly.
That is the latest. We have/had ELEVEN appointments this week alone. The end of the year is beyond busy for this baby.
We received a few order forms for t shirts WITHOUT payment. If you would like a shirt, please submit payment via PayPal after submitting your order form. Orders will not be filled otherwise.
We hope everyone has an amazing holiday.
PS: VACCINATE YOUR DAMN KIDS. THERE IS A MEASLES OUTBREAK THE NEXT COUNTY OVER.