Saturday, January 22, 2011
Just as soon as things got better, they got worse. Sadie was at Children's Memorial Hospital for an MRI last Thursday. Despite receiving a bit of oxygen following the procedure, she was fine. We were home on Thursday night and she went right to sleep.
Friday morning, Sadie arose with horrible breathing, coughing, and irritation in her throat. She had received a tube in her throat during the procedure, so we thought it was irritation from the tube. As her breathing progressively worsened, we decide to take her into the ER.
We again found ourselves at CMH. After a quick assessment by the triage nurse, they rushed her into one of the larger operating rooms. Doctors and nurses quickly started working on Sadie. In the time it took for Adin to park the car, about 20 medical professionals had filed into the room. It was quite scary. They first put her on a mask with a breathing treatment, which seemed to clear her airway. They also gave her a steroid to stop the swelling in her throat.
She seemed fine for a few hours, then the seizures started. One cluster, the two, then three...they progressively got worse until she was almost status epilepticus (a state of nonstop seizure). She was given a sedative to stop the seizure, but it was not terribly effective. The doctor decided to give her a dose of fosphenytoin, a paralytic, to stop the seizing. In order to administer the med, the had to intubate to protect her airway. That procedure was even scarier, at least 5 doctors and 20 other medical professionals raced into the room for the intubation.
So began our hospital stay. They determined that Sadie had a virus called RSV, which most likely was the cause of the raspy breathing. RSV is a cold-like virus that can be very serious in infants. The breathing tube stayed in for a few days, we were very relieved when it was removed without incident a few days later.
We write this from the bedside at Children's Memorial and hope to have Sadie back at home very soon.
Wednesday, January 12, 2011
Well, things are getting better. We thought we'd be much more excited, but the way in which things came about put a damper on Sadie's progress.
The past few weeks have been rough. After the new year, Sadie's seizures continued to get worse, to the point that she was having very little awake time when she wasn't having a seizure. After experiencing three clusters of seizures in an hour, I spoke with her doctor about changing up her medicines (again). We had been increasing Depakote to see if we could gain more seizure control, but obviously this strategy was not working. The doctor has decided to abandon Depakote, and add Clobazam (now Sadie's fourth seizure medication).
While many doctors use Clobazam for seizure control, it is not yet FDA approved in the US, which means we have to go through a Canadian pharmacy for the medicine and pay out of pocket. While this is not ideal, we are more than willing to do it if it means that it will help Sadie. Until the medicine comes in from Canada, we are using Clonazapam as a bridge. Sadie's first few days on her new medicine were trying. The good news is, she is having fewer seizures, the bad news is she was so drowsy from the medicine that it was hard for her to even take her bottle. Our hope is that once we start weaning her off these other medicines, she will become more alert and interactive.
Sadie's therapies continue to progress quite well (that is when she is awake for them). Her reach and grasp has improved quite a bit with help from her Occupational Therapist. Last week I picked Sadie up and she promptly reached out and grabbed my hoop earring. I had to lay her down on the floor to get her to let go! I guess sometimes teaching her to reach and grab has it's consequences.
Bowel movements have become much better as well. She receives a "laxative cocktail" once a day which consists of half a Senna, a teaspoon of Miralax, and a teaspoon of milk of magnesia. We will have a poo-nami (as we like to call it) every 5-6 days, but the past few times she's gone without the help of a suppository.
Thanks to Easter Seals, we've also placed orders for Sadie's first pieces of special adaptive equipment. She is soon to be the proud owner of a Kid Kart XPress Pediatric Stroller, a Rifton Bath Chair, and a XPanda Feeding Chair. While these names may not mean much to many of you, the equipment will be a huge help for Sadie so that she can be positioned properly while being transported, bathed, and fed.
We are taking a few deep breaths now that we have better seizure control. As we venture into 2011, we hope and pray that this new medicine will continue to work for Sadie - controlling her seizures while limiting the side effects.