Paperwork from Nationwide Children's is here

I received all the pre-admission paperwork from Nationwide Children's today.  She will be admitted on Monday morning, July 18 for labwork, an IV and an nasogastric (NG) tube.  On Tuesday she will go to surgery for several motility probes to be placed under general anesthesia.  She will then go to PACU and then go to the GI motility lab. 

Once she is there they will perform an antroduodenal manometry study, and a colonic manometry study.  This should take about 8 hours.  Hopefully on Wednesday she will be discharged to the Ronald McDonald House (which is supposed to be the 2nd largest in the world).  Thursday she will have outpatient procedures of a scintigraphy and gastric emptying test.  Friday she goes back to finish the scintigraphy and they said she should be done late Friday afternoon.  We have made reservations to fly home on Saturday just to be safe.  The lead GI doctor will meet with us after the tests are complete and go over preliminary results.  Then a more detailed report will be sent to her doctors at the NIH and in Atlanta.

Spring musical has come and gone

So the girls have finished the demanding schedule of the spring musical and Macey is already down with a cold and has a low grade fever this weekend. Both are ready for school to be out.













We have a date for Ohio. July 16 . One trip to surgery and several procedures/tests.

Clinic time

Infusion has begun

Wednesday is a big day for everyone

So tomorrow involves alot for most of the members of our house.  Earlier this week Les finally received a call from the nurse coordinator at Accredo to set up an appointment for his first subcutaneous infusion.  The only day this week they could offer him was Wednesday.  It just so happens that Macey will be going to Egleston to the outpatient infusion clinic to receive her first dose of Hizentra (the subq medicine that will be replacing Vivaglobin). So almost at the exact same time they will be infusing together.

Les's nurse will come here to the house and educated him on how to draw up his medicine, prime the pump and stick himself.  Then start the infusion, deaccess the needles and finish up.  His immunologist has ordered Benadryl and Tylenol by mouth if he needs it but he should do just fine.  Before I leave with Macey I will show him how to put on his Emla and that will help.

Macey will take her medicine and her supplies to the clinic in Atlanta and although she has self infused by subq for over 4 years now she has to be observed at clinic when switching brands.  So her appointment is more about being babysat than being educated.

After her infusion we will go to lunch and then return for an appointment with her immunologist.  I hope to be able to go over some results from genetic testing done and we have a new symptom of dizzyness/rapid heartbeat to talk about.  I was hoping the fast heart rate would resolve but even though it does go down at times it does always go back up.   It should be a good visit and I will update as soon as we're done.

Please pray that Les will have a good first infusion and no reactions (site or body wise) and that Macey will also tolerate the new product well and have a productive clinic appointment.

Another subque'r in the house

So after a quick sinus CT this morning my husband met with an immunologist who had started lab work last month to recheck his response and levels.  She looked at the digital copy of the CT and said that other than some inflammation in the ethmoids he overall looked good (no maxillary problems). Then she went over the lab work that had been sent to Quest a month ago when he got his Prevnar shot and the lab work that was drawn last week to see if he responded.

His initial levels were 

IgG 975

IgA 263

IgM 17

The IgA number was a God send.  I was so glad to see that whatever problems he might have we wouldn't be fighting this monster too.  His IgM has always been low but this is the lowest yet.  (the IgG number I'll address later).

Then she started out by saying that he had absolutely no response to the Prevnar. NADA. ZIP. When he had these done in 2002 he at least responded to 2 or 3 of them.  Now nothing.  So she said he was not going to get anything for the IgM from infusions but she did think he would benefit from the antibody perspective.  Unfortunately that great IgG number meant nothing because it lacked any "brains". Also it will make it difficult to follow whether or not his dosage is therapeutic because we can't watch a number rise. He will be followed clinically and we will see if his symptoms improve.  She will run levels anyway in a month but will wait 3 months to see him again in the office.

On the Quest results there is a disclaimer paragraph that addresses what is considered a responder:

"Evaluation of the response to pneumococcal vaccination is best accomplished by comparing pre-vaccination and post-vaccination antibody levels.  A 2-to-4 fold increase in type specific antibodies measured 4-6 weeks after vaccination is expected in immunocompetent adults.  The number of serotypes for which a 2-to-4 fold increase is observed varies greatly among individuals; a consensus panel has suggested that individuals older than 5 years old should respond to at least approximately 70% of pneumococcal serotypes.  Adults >65 years old my exhibit a smaller (<2-fold) increase in type-specific antibody levels."

The reason I mention this is we were talking earlier this week about how many should respond to warrant medicine.  This opinion just happened to be on our paperwork today.

Also he had CD3, CD4, CD8 and CD19 levels done but I'm awful at interpreting these.  She didn't seem too concerned at the numbers. Sometime tomorrow I'll compare them to Macey's to see where he falls.

So they will submit the Hizentra prescription tomorrow and heaven only knows how much he's looking at infusing each week.

New glasses

New glaases today.



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