7:30 AM
Our Austin neuro was able to consult with Dr Castro (Dallas neuro) on Friday. I did not share the outcome because we wanted to keep it from Bella one more night. It's not good. Dr. Castro agrees that this apparent GBS recurrence may indicate that Bella has CIDP (chronic GBS). Dr Castro was as surprised and sad as we are that Bella is facing this when she was doing so well just a week ago.
Bella will be admitted back to Dell this morning for another round of IVIg. They also are doing a spinal tap and a blood work up (to test for that antibody that can indicate CIDP and was positive in May & negative in July). We're looking at a hospital stay of 5-6 days at least. Hopeful discharge right now is Thursday.
Bella is concerned but trying to understand why this is going on. Please pray that Bella handles the treatments and tests well, that her physical strength remains and that this is the last time we have to face this fight from inside the hospital!
11:10 AM
Starting with some positives. We have an awesome view that includes the UT Tower. And on our way into the hospital, Bella cheerfully said "At least I get to do some more painting in the play rooms".
After some initial confusion and frustration at registration, we were raced into the room and then down to pre-op for blood work and spinal tap. Labs had to be sent out by 9:30 or they would be rendered useless and once Ivig starts tonight, we wouldn't get a clear reading because of the foreign antibodies that will be mixed in her blood. Bella struggled with the IV a bit but handled the spinal tap really well, especially once her "bravery" medicine took effect. Super Bella she most certainly is. This is the 3rd spinal tap Bella has had in her young life. The initial results indicate that her protein levels in her spinal fluid are only very slightly above normal. Resident Pediatrician Dr Luk (who btw has the best patience and bedside manner of any doctor I recall working with) said he would expect a reading in the 100s for someone with GBS and Bella's is only 71. They're getting charts from Dallas hospital to compare to what her reading was back in April when she was first diagnosed. Hoping the referral lab (where blood & spinal fluid are being sent for further testing) confirms this.
Bella will receive her first Ivig treatment tonight. They've only initially ordered 4 doses so we can hope that means we bust out of here on Wednesday.
11:38 PM
Bella’s first IVIG treatment started at 10 tonight. They’ve had
to pause it at about 10:40 because her blood pressure was too low. We didn’t
have this concern previously so I am not sure what it means but anything that
concerns the nurses certainly concerns us. They are restarting and monitoring.
Bella was examined by 2 separate neurologists today – neither
of them the two who are handling her care outpatient. All 4 neurologists have
reviewed her MRI and we got a better understanding of the scan today (it’s hard
for a non-medical person to understand this stuff over the phone). Our
understanding now is that the scan possibly revealed that Bella’s 3rd
cranial nerve in each eye was enlarged. The reason we say possibly is because
the 3rd nerve is very hard to see in these scans so they aren’t sure
if it appears inflamed because they just got a really good scan of it or if it’s
actually inflamed. Unfortunately we don’t have a previous scan of Bella’s brain
to compare to. We also understand a little more about the protein in the spinal
fluid. On call neurologist explained that GBS patients will typically present
with high protein levels (max is about 150). We don’t yet know what Bella’s
reading was from her April 8th LP – we’ll get those results from
Dallas Children’s soon I hope. Let’s say it was around 130. If it’s been
steadily coming down and is now at 71, that’s good. If it went all the way down
to normal levels (45) and is now back up, that’s not good. Again unfortunately
we don’t have a reading from between the hospital stays to compare to. In
addition to the 2 neurologists and the pediatrician, Bella also saw a pediatric
ophthalmologist today. He did not seem overly concerned with her condition and
his role would really be to help her deal with the double vision if it
persists. The neurologists are the ones who will help to cure it.
Bella was stable today. Still experiencing double vision but
still as strong as she has been. Her back hurt terribly all day after the LP,
which is very normal. In spite of several visitors including her best friend
Avery and her mom; brother Brody & sister Faith; Grandma, Great Aunt Mary,
and two special ladies from her Dad’s school (Sheila and Monica), Bella struggled
quite a bit today with having to be back in the hospital. She was very sad and
I pray she does not fall into that horrible depression again. It was very hard
to leave her tonight. Brian (her dad) is staying overnight since he sleeps
better with the surrounding chaos.
Thank you for the prayers, comments, and texts! We draw
strength and comfort from the army of Bella’s prayer warriors.
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