Home

Sorry for abandoning the blog. Macey is home and waiting for the consult letter to catch up with her local GI doc. We're hoping it works. She's started back to school and enjoys her classes. We'll update again after the medicine starts.

Testing is over and we're home tomorrow

So the gist of this week is Macey still has the same motility disorder she had when she was younger and needed the tube in her stomach. There is however a new medicine out, Amitiza, that should help her and keep from needing another tube. She will start out with one capsule a day and be able to increase that to two if needed. She will try this for 3 months or so and if it handles the problem then that's what she'll stick with. She will have a pain medicine ordered called Elavil that will be given at a much lower dose than before (10 mg twice a day) to handle pain and it will be on a scheduled basis not as needed because Dr. DiLorenzo says it works better this way.

So hopefully at Christmas she will be pain free and more comfortable and not needing surgery. We went to a movie after her tests this morning and then did alittle shopping. Now we're back at the RMH resting and our flight leaves out tomorrow at 4. Thank you to everyone who has been so good to pray for Macey and offer words of support on here and on Facebook. The calls and texts have been very uplifting.

Another early morning

Up and over to Nuclear Medicine early. After the tests were over Macey napped for a while then we headed out to downtown.

We went to the state capitol.




Then ate lunch at Subway. Who knew the had pizzas?




Afterwards we walked to the COTA office and bought bus passes so we didn't have to keep coming up with loose change. Then we walked down to the river where they have a Santa Maria ship museum.









It wa very hot down in the boat so we bailed early and decided to go to the science museum across the river.




This place was a blast. I even got a coupon on foursquare for checking in there.













Then it was back to downtown to catch the COTA 1 back to the RMH. COTA has been an unexpected resource here and not at all difficult to figure out and ride (thanks to Google Maps and my iPhone).

Another test at 8 am then off to the zoo until we meet with the doc at 4 pm for his opinion.

Waiting at the RMH for the hospital shuttle. Few things about this particular house. It is the second largest in the world (behind NYC). Kids under 18 must be with parents at ALL times. There are washers/dryers with free detergent/dryer sheets and you must stay with the machines the whole time you are using them.

Label all food in the fridge but it has been known to "walk off" so far during our stay. The coke machine here has soda, oj, water bottles for 50 cents. Lunch and dinner are usually volunteer provided.

The neighborhood is ok during the day but iffy at night. CVS and a Kentucky Fried Chicken are within walking distance. (during the day)

The shuttle runs on the hour and at 20 minutes past the hour. But it's an ok walk to the hospital.

Arm bands are worn at all times. Blue for under 18 and yellow for over. Visitors to the house are confined to the front living room. House residents may not take them to their rooms or the dining area.

Second test out of the way

Macey went from nuclear medicine (starting the colonic transit) to motility (doing the "down bottom" manometry) and is now back in nucler med to eat her high protein breakfast and take her next scan. After that she goes back to her room and will eat lunch. Another scan this afternoon and then she should be done.

First test of the morning

Tests are over for the day

At 5 pm Macey finished up her test downstairs. She is working on her Incentive Spirometer each hour after the anesthesia. They did give her some Decadron during the surgery and I think that helped.




Now she's back in the room and has eaten alittle dinner. She has to be NPO again at 9 pmfor a test in the morning. Hopefully after that obe she will be released to the RMH for the rest of the week.

Eating her "test" meal

Procedure has started

Transport came and took Macey around 8:30. She hopped on the radiology table and they gave her Versed to calm her nerves. Then she started getting very starry eyed. The anesthesiologist gave her the hite sleep medicine (Propofol) and it stung. After about three good breaths she was asleep. They tucked her arms by her side and I went to the waiting room. It should take about 45 minutes.

More people come by

Dr Yeung is our GI Motility Fellow. Definitely is inquisitive. Questioned Maceys CVID but I explained her variant and why not all CVID's had a Tcell problem (which he seemed to think you had to have to be CVID).

Macey went to xray to get a KUB done to make sure the prep worked.







Then the floor nurse started her IV with just one stick.

The radiology report said she only had some gas but no noticeable stool. This means no NG tube is needed. Once I knew this I headed back to the RMH to get her a couple of Sprites (Nationwide no longer sells sugared drinks).

It never fails when you think you're safe the doctor comes by. Macey told him I was nearby and could be back quickly.

Fifteen minutes later Dr DiLorenzo was in the room with the Fellow and talking about what we wanted out of the trip and how we got there. Macey and I told him most of her strange GI history.

She will have to do an enema at 8 pm tonight and then NPO after midnight. We're still not sure
which case she is tomorrow.

Photo album of trip

Feel free to follow our visit pictures at

https://picasaweb.google.com/uahollem/Ohio2011?authkey=Gv1sRgCK7L1Y7V7MuuRw

Day 3 - inpatient admission

Settled in the room and the nurses have done their assessment. Macey has on a regular blue hospital gown and is on her iPad. Now all we need is the Fellow to come by and write orders.

Location:Nationwide Children's Hospital

Made it to Ohio

This morning started out with a 5 am start from home to the airport in Atlanta. Our plane was on time and we were straight on and settled in our seats.

The flight took about an hour and a half and we touched down in Columbus just short of 10 am. We collected my bag which I had decided to check at the last minute and headed through a maze of elevators and tunnels to the taxi/shuttle stand at Port Columbus Airport.

Taxi service to the Ronald McDonald house here at Nationwide Children's runs about $40 each way. Alittle steep for me considering it is only 12 miles away. So we spent the first 15 minutes sitting down using my Hotspot on my iPhone to service Macey's iPad so I could figure out a better way and not lose my eyesight on that tiny phone.

Finally I decided on a route of COTA (Columbus Ohio Transit Authority) buses for $1.75. But right as I decided this the bus for the airport (which had been sitting there for 15 minutes) pulled out to make its run. It was 20 minutes before the next one was scheduled. Which makes it 30 minutes since we departed our plane and Macey was pooped. She napped in her chair (which had been brought along for good measure). The next bus came and since I am unfamiliar with the area and we had to switch buses I asked the driver if she and I would be safe at the bus stop where we switched for the 10 minutes between buses. He said since it was during the day yes. 10 minutes wouldn't hurt.

The bus ride was adventurous and although a short route was definitely taking us through some of the less advantanges "apartments" in town. Finally we reached our transfer stop and proceeded across the street to the bus stop for our final leg. Ten minute went by and no bus. There was a very sweet lady there about my age who had a bicycle with her and struck up a conversation. Plus a gentleman about 50 or so who was very well versed on the COTA system. Once our bus missed it's time schedule he was on his cell phone with the COTA rep asking what gives. Their answer was that there was a gas leak and our bus had been rerouted but one was coming for us but would be late. Another 30 minutes passed and he called again and now was told it was under control and another bus had been dispatched to our location. Finally this bus arrives but of course with all the people who had been accumulating at the stops before us and it was slammed full. We had the two suitcases plus Macey's transport chair so they didn't look real happy when we got on. I got the chair up the isle and some sweet older man gave Macey his seat. Our bus driver defintely enjoyed his brake system and several explatives were heard from the back of the bus by passengers standing. Macey was very calm about it all (because it was very much a packed house with alot of unhappy people who had been waiting almost an hour at each of their stops only to be tossed around). She helped me follow the Google Map as we used it's Bus feature to get directions from our transfer bus to the Ronald McDonald House. I love this feature. When you get directions on Google Maps you have the choice of by car, bus or walking. By bus pulls the local transit schedule into your directions and lets you know when the next one is coming and you follow the blue dot as you advance up the road and come near your destination.

Once we approached the hospital (which is across the street from the RMH) we pulled the cord which sent an automatic signal to the driver that someone wanted off at the next computer announced stop. Otherwise he keeps driving. We jumped off and proceeeded across the torn up road (they are resurfacing) and into the front doors of the House that Love Built.

We were given the house tour and I signed our paperwork about the rules of the house and our chore that was assigned to our particular room. Once we had our room card and pantry key we unpacked and went back downstairs. The house managers had grilled hamburgers/hotdogs and there were side dishes. Macey has started her bowel prep so she ate chicken noodle broth and a Sprite. Back upstairs later she started to read on her iPad but was quickly dozing. So we dressed her bed with the linen and she changed into sweats and has gone off for a well deserved nap.



Preop appt went ok. Breathing was down so Albuterol inhaler prescribed for a while. Shopping now for Katie's dorm room then home.

On our way to the beach

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.



- Posted using BlogPress from my iPhone

School IEP and 504 Health Care Plans - our take

The first thing you want to do is schedule a student support meeting.  This will include all teachers, the guidance counselor, the assistant principal (aka instructional coordinator) and the school nurse.  Not the school med tech but the nurse.  Some schools share nurses but you want the nurse.  She/He will be instrumental in evaluating whether you need an IEP under Other Health Impaired or if a 504 plan will cover the accommodations.  You will also want to start making copies of all of the doctors notes that you turn in.  It's amazing how something like that can go missing at the school and you have no recourse.  In some years I've been known to back track and supply 5 or 6 excuses they said "never made it there".

At the meeting you need to make it very clear that while not being confrontational about it you feel your child's needs are not being met.

Explain what you need to each teacher and each subject.  Some classes will need different accomodations than others.  Our daughter had different needs for her advanced spanish class than for her english class (one could provide work for home the other truly had to be done before school when she returned because I couldn't tutor her in Spanish).

There should be someone provided by the school at this meeting to take minutes.  At the end of the meeting make sure a follow up date is documented.  It should be somewhere between 14-30 days.  I know that sounds like a long time but setting this in motion will not happen overnight.  Just like the PID diagnosis didn't happen overnight.  What you are doing though is setting in motion a plan that will follow through high school when it most matters.  

These plans are something that parents should set up right away once a PID is diagnosed.  It is only a matter of time with this disease when your child will need it.  Don't wait until the illness takes them out of school and you're already stressed with hospital stays and doctor visits to try and haggle out this plan too.

The school will try to tell you your child is not sick enough or "delayed" enough for this plan.  This isn't true.  A physicians update is all that is needed to document the need for accommodations.   

These plans are not just good for the sick times but also good for at school times in order to cut down on sickness.  We've talked before about the accommodations of having HEPA filters in the classroom for lung/asthma patients (easier to do in the early grades when they don't change classrooms, Middle/High school virtually impossible).  Also being made aware of not only contagious illness in their own classroom but grade level (any type of contact).  Each day in elementary school Macey's class got to "play" in shaving cream on their desk (because it cleaned and sanitized the desk for the teacher automatically).  But it was a written accommodation.  

Older students can cut down on fatigue by not carrying large textbooks back and forth to school each day.  Have it written that two sets will be assigned each year (one set for home and one set for school).  Their books can be kept in each classroom so they don't even have to be toted from the locker.  

Accommodations for the allowed amount of time to make up work.  The time needs to start after they have met with the teacher and reviewed what they missed.  

Bathroom trips, water access, breaks on the playground (Macey's school did not permit younger students on the playground to sit on the benches, they were required to "play" their entire recess.  Impossible for her), somewhere to go in the office if symptoms are present but might be fought off and the child can stay at school (better for middle/high schoolers).  Macey has salvaged many a day in high school by going to the office for 20 or so minutes and resting.

You basically have to make them understand that this is expected to be a lifelong medical illness that will need to be accommodated to make him a productive citizen when he is an adult.  It does fall under ADA and is recognized as a medical disability.

But setting it all up will take time and a great deal of patience.

Pulmonologist/Sleep disorder visit

Macy's visit to the pulmonologist went well. He reordered her Ritalin dose and also gave us an additional daily dose for 5 mg in the afternoon when her sleepiness is at its worst.

Sleep doctor visit / Auburn

Tomorrow we have to go to Columbus to take Macey to the pulmonologist to follow up on her sleep disorder then we're going to go over to Auburn with Katie and her friend to see the campus. It should be a fun day temperatures will be in the 70s and everyone should enjoy the trip. I wish Macey had more energy.

Winter progresses on

Counting down the days of winter until Spring hits.  Just after Spring hits then it's spring break and a well deserved trip to the beach.  Things have been good here.  A new daily dose of Alleve has helped with the larger joint pains and each little head cold that has started was stopped short and didn't turn into a roaring sinus infection.

Some days are better than others when it comes to the GI stuff.  It usually is easier on the weekend than during the week because of the extra rest and calmer pace but lately even on the weekends there have been extra trips to the bathroom and pain.  Steroids are still at an increased dose and I don't think we're going to be able to come down on them anytime soon.  I'm going to ask at the next appointment in Atlanta if we can try another burst dose of IV steroids.

Spring musical tryouts are next week and with a good song in hand there will hopefully be a positive outcome.

Christmas time is here

We have heard from Ohio and the response is a big YES. Dr. Dilorenzo will consult on Macey's GI problems. She was presented in late October and approved by their intake committee. She has been put on the patient list. They have rooms for 4 patients per week and Macey is #57 as of right now. So we were told to expect to hear from the GI scheduling nurse in late February or early March to schedule her stay. They will have us come into town several days before admission to work on pre-admission stuff. Staying hopefully at the Ronald McDonald House or another patient center. Then on Monday she will be admitted for a week. We should expect to be there 7 to 10 days.  She will be scheduled for several motility tests and also considered for a program that takes advantage of the SMART pill.

She has just recently finished a round of breathing treatments the immunologist at Egleston ordered and has cleared yet another MRSA infection this time in one of her fingers.  Christmas was a wonderful time to spend with family and friends and as we start the new year we are ever more assured that God has given us only what we can handle and no more. He is using our abilities to make us use our talents to glorify him.