Robin, Megan and Steven are coming for a visit. They arrive tomorrow afternoon and will be here through the weekend until Monday evening. Megan is on spring break, but will miss one day of school next week.
I told them to pack their swimsuits. We are having 85° days here, which should feel very good to them after the cold snowy winter they have had. We’ll do some shopping, playing with the cousins, tour L.I.F.E. and Central’s new facilities, and catch up on gossip. Nathan gets to spend the night on Friday. I just wish Lauren was feeling well enough to enjoy their visit.
That’s where Lauren is going to be for the rest of the weekend. In fact, if the doctors have their way, she’ll be in-patient for a few weeks. Here’s the latest:
Lauren’s adenoids have grown back again. She has had them removed twice, but there they are, as big as life blocking her air passage again. One theory is she is having sleep apnea (Derek, you hit it!), and her struggle to get oxygen is setting off these seizures. Since this is such an obvious issue, they want to start there. She’ll have her adenoids out and see if that improves her sleep pattern.
When, you ask? That’s the $64,000 question. If Carrie had her way, it would have been yesterday. But nothing moves quickly in the hospital. The ENT surgeon has not even seen her yet. He is supposed to come in Saturday morning.
The other thing that is concerning Brian and Carrie is the doctors want to place Lauren into in-patient rehab after the surgery and keep her there until she is strong enough to walk again. But Carrie knows she can provide better rehab for her at home and at L.I.F.E., and is going to [try to] convince the doctors of that.
They’re not positive this is the root cause of all of Lauren’s difficulties, but it’s the easiest place to start. Following the surgery and full recovery, they’ll do another sleep study to see how Lauren is doing and go from there.
Lauren has been having sleep seizures again, up to 40 per night, or as few as 2 or 3; and extreme fatigue during the day as a result. They have been occurring since their recent trip to S.F. to see the specialist. Carrie was hoping they were related to the flight (a change in barometric pressure can set off seizures in epileptics), but since they have not dissipated, they took Lauren to see a neurologist this morning at St. Joseph’s Hospital / Barrow’s Neurological Institute.
The doctor wanted to run several tests, including an MRI, full blood workup and a spinal tap. He decided to admit her so they could put her to sleep for these difficult procedures, and they will also keep her overnight to observe her during sleep. He wants to investigate several possibilities: her disease may be progressing, these episodes are really seizures, she has a serious virus, etc.
…just as I was writing the last sentence, Brian called with an update. Lauren’s spinal tap showed just a slightly elevated spinal pressure (normal = 18, Lauren’s = 19), so there is no concern and no need for a shunt. She was still under anesthesia, but was doing well. Children with Sanfilippo are very high risk under anesthesia because of their respiratory issues. They still had to do the MRI, so Carrie and Brian had not seen her.
The other news was the doctors were nearly certain these recent problems are not a result of her disease progressing. It’s too rapid a decline, so they feel it is something else going on.
Carrie said a huge number of doctors have been in and out of the room — all of them extremely interested in Lauren’s case. Sanfilippo is so rare, that doctors don’t get much chance to study it. Carrie said any and all were welcome as long as they were very careful not to bring any bugs in to Lauren. The more medical professionals become acquainted with her disorder, the more awareness is brought to it and possibly more knowledge and expertise in treating such children.
I’ll update when I have more information. Please pray for little Lauren, and also for Carrie and Brian. This is a stressful time.
We’re in! We’re in! A number 10 seed is just fine. Our streak lives on.
Could last night’s game have been the Wildcats last for this season? No, surely not! I hope their high RPI might get them into the Big Dance, but finishing 7th in the PAC doesn’t make it seem very likely. If they don’t make it into the NCAA tournament, they’ll at least get an invite to the NIT … I hope.
Let’s hope Lute can get the team back to their winning style next year.
You remember about a year ago when my business group at Intel was bought out by Marvell? We had 23 mask designers in our Arizona group who went to the new company. Over the next several months, one by one, mask designers left and went back to Intel. By the end of the first year, we had lost eight of those 23. We were down to 15.
Then the layoffs hit, and they cut eight more MDs. That left seven of us. Last week, two more resigned, and this week another two have given notice. I’m beginning to feel like I’m on “Survivor”. I wonder if I’ll win the million dollar prize?
Management is very concerned, to say the least. We have critical projects that need MDs, and preferably MDs with the kind of experience and expertise that we brought from Intel. Although I might not get a million, I do think it is looking like a very good time to ask for a raise. 🙂