History

Sunday, November 9, 2008 10:00 AM CST

We're home now. Katie's had her party last night, Macey was able to go for a while but went home early with my MIL. She had more stomach pain this morning and has stayed home from church. She came home with no new medicine so we're giving her what we have. We'll be home through Tuesday and then go up to Egleston for her surgery. So far we know they are going to drain the ovarian cyst and look at her bowel. He might also take the gallbladder. We hope to have the pathology results from the biopsies by surgery. When the GI was doing the colonoscopy he noticed some spots of lumpiness. In medical terms it's called lymphoid hyperplasia. According to Macey's immunologist who emailed me yesterday it is seen in CVID patients but they don't know how it relates to the diarrhea. She also said we should be cautious about removing the gallbladder unnecessarily. So we'll let the surgeon make the call on that one. So the overnight bag is still open in the bedroom and has been gone through and reorganized. It's alittle harder to run home for things from Atlanta than it was from Macon. Surgery Wednesday should be around 1pm so lots of prayers at that time would be appreciated.

Friday, November 7, 2008 9:15 AM CST

Still no results from the prep but I think we're going to do the scope anyway. The nurse was just in for me to sign consents. They've said it will be sometime after lunch. Childlife was by earlier and will be going over with her to the procedure. She's resting in bed right now. She hasn't need any pain medicine yet this morning.

Thursday, November 6, 2008 8:03 PM CST

The bottle of mag citrate has been drunk. No results yet. The ultrasound came back ok. the hida scan showed an ejection fraction of 29% which is abnormal. the report is going to be faxed to her surgeon so we'll probably look at taking the gallbladder when he takes the cyst. Her pain has been more often today, probably due to all the movement and testing. She's need another pain medicine for when she has pain before the Toradol is due. It really didn't put her out like I thought it would be has gotten her to the next dose. Hopefully the prep will kick in soon and the scope should be sometime after lunch tomorrow.

Thursday, November 6, 2008 10:27 AM CST

Macey's back from radiology. she had an ultrasound and a hida scan. she fell asleep during the hida scan. she's had medicine this morning for pain and nausea. now we'll just wait until it's time to start the prep for the scope tomorrow. she's watching tv now which is a good distraction for her and the pain

Wednesday, November 5, 2008 8:38 PM CST

Macey is in the children's hospital now with stomach pain but thankfully no more loose stools. They've had her on IV fluids for almost two days. She tried some sprite and jello today but cramped up again and refused to take anymore. tomorrow they will be doing a hida scan and ultrasound and then a colonoscopy on Friday. The meds have been pretty much hit or miss around here. none have been given on schedule and one med they don't even carry here at the hospital and asked us to bring from home. Her surgery next week in Atlanta will still happen as far as I know.

Thursday, October 30, 2008 9:25 PM CDT

So we saw Macey's surgeon on Tuesday. We took him a CD of her CT's (chest,abdomen,pelvis). He already had the CT report that was faxed ahead of time. He will take the CD to the hospital and have a look with the radiologist there. He thinks the lymph nodes are incidental findings and possibly should be watched. I explained how I was alittle alarmed because of the increased incidence of lymphoma in PID patients and how Macey's never seemed to have any lymph node activity before, ever. We discussed the cyst on her ovary and what might happen because of how large it is. He is going to drain it on November 12th and have a look at the lymph nodes while he's in there. He can do it laparoscopically so there won't be much of a recovery. The scheduling person at his office implied we would go home the next day but I'm thinking it should just be an outpatient procedure. Unfortunately it is also Katie's birthday.

Macey's been home again this week from school with her stomach. We've upped her dose of Elavil to 50 mg, added Lomotil on a schedule now and she's taken some Phenergan here and there as the nausea hits. Also every now and then her peak flows are dropping from her baseline of around 320 to 270 or so. She takes a quick neb treatment for that and they usually go right back up.

She's going to try to get to school tomorrow but right now it's really her stomach calling the shots. Each day she's up and showered and dressed for school and then out of the blue her stomach cramps and she's in the bathroom for the longest time. She'll crawl to the bed and lay down and 30 minutes later she'll be in the bathroom again. This goes on sometimes until noon. We can't seem to relate it to any particular food or stress or medicine. It's happened when she's going off with friends, right before church, sometimes in the middle of the day. Noone seems to know where it's coming from and she's had a battery of tests.

Thursday, October 23, 2008 6:25 PM CDT

Yesterday Macey's surgeon's nurse called and said he had looked at the report and wanted to see her in clinic. His next clinic day is Tuesday. So she will see him at 4pm. She is still having problems with nausea. I've given her 25 mg Phenergan and thankfully it is getting on top of it. I just hate she needs it so often. She also has been having problems with stomach pain. She's a bit swollen in her stomach. Hopefully she can make it to school tomorrow.

Wednesday, October 22, 2008 12:43 AM CDT

The CT report came back showing an ovarian cyst 5 cm on the right side. Inguinal lymph nodes on both sides with the largest ones being 1.3 cm. Also small bowel lymph nodes with the largest being 1 cm.

The report has been faxed to her immunologist and her surgeon. She's still home from school with pain but hopefully she will feel like going tomorrow. We hope to hear from someone soon about what to do.

Monday, October 20, 2008 6:56 PM CDT

This morning Macey woke up with her stomach hurting again. She took the medicines that they had prescribed for this type of episode and decided she did want to go to school. 30 minutes after being at school she called to ask to come home. She had already been in the restroom 3 times and was hurting too bad to stay. Someone picked her up and I scheduled a visit to the ped. They said they would see her as soon as we could get there.

The ped examined her and talked to her about her pain. Felt her abdomen and listened to her chest. She asked about any history with her gallbladder or h.pylori. Also i reminded her Macey had done a breath test at the end of the summer for bacterial overgrowth which was negative.

The ped thought it would be best to start out getting a CT of her chest, abdomen and pelvis. With and without contrast. So after some automotive difficulties in the parking lot that Les came from work and rescued us from we went directly to the CT machine. They had her drink 10 oz of oral contrast, wait 30 minutes and then drink about 3 more ounces. Then the took a scout CT to see if the contrast worked. Then they put an IV in her left arm and started the scan.

When the IV dye was injected she said she had the sensation of going potty but we reassured her that it didn't happen and that was how the dye made the body feel to see everything right.

They said the ped radiologist would be over later to read her films and another teenager they were doing later. The ped rad on was the one who has been there since Macey was a toddler and has read alot of her stuff already so I know he is good.

She's still achey and will stay home again tomorrow. They said the ped would have a report either tonight or first thing tomorrow. So we'll wait it out and medicate meanwhile. Her appetite is really iffy so we're encouraging mostly fluids (which will help get the dye and contrast through her system anyway).

Saturday, October 18, 2008 6:08 PM CDT

Macey's had a good school year so far. wonderful grades and band is going great. She has a repeat sleep study Thanksgiving week she will be at Scottish Rite for 2 days. The doctor ordered the test this summer but they couldn't schedule her in until the second week after school started. Since she was doing fine and nothing will pretty much change by the tests I ask that we schedule it when she was out of school. Fall break we were taking her on a Disney cruise so November was the first available.

Also she will have a clinic appointment with her immunologist. We hope to get to the bottom of why her chest and upper stomach have been hurting so much.

Wednesday, May 21, 2008 9:13 PM CDT

Macey's appointment went well. Her PFT's showed a slight increase in restrictive airways but not enought to account for her recent problem. She woke up this morning lower than ever. Dr. K did a very detailed exam and pronounced that she has mycoplasm pneumonia, aka "walking pneumonia". She has bumped her Prednisone dose back up to 30 mg for the next 5 days and then we'll start to taper down again. She has an 11 day course to run (which times out perfect to our trip to Florida). She also has put her on Zithromax and increase her Xopenex dose. She is also to continue the Atrovent treatment if they provide her relief. This is Macey's third pneumonia this year. The other two were infiltrate right lung pneumonias so this one snuck up on us kindof. I will email next week to let the clinic know how Macey is doing before we go off on our trip. I have already given her the first dose of the Z-pack and she took both treatments before going to bed. She's very tired and worn out from the driving but hasn't seemed to have much energy anyway lately.

She has awards night at school tomorrow. We received a postcard in the mail letting us know to be there because she will be getting an award. We are very proud of her. She's missed a total of 35 days of school this year.

Monday, May 19, 2008 11:16 AM CDT

Macey has an appointment at Egleston on Wednesday. This time last week she was waking up each day having chest pain and trouble breathing. Her peak flows were down so Les took her to the pediatrician on Tuesday. She started Atrovent treatments and continued Xopenex treatments we had already been doing for about 4 or 5 days. Also she started her on a Prednisone dose.

On Thursday I emailed her immunologist at Egleston and she emailed back that Macey needed new PFT's and perhaps a lung CT. So she said that her nurse would call with the appointment. I had not heard from her by this morning so I called. She said Dr. K also wanted a clinic appointment so we scheduled both for Wednesday afternoon.

So 5 days into Prednisone and Macey still woke up this morning with low peak flows. I really think this might be a lung issue and not an infection or virus. She just looks so run down. But we'll know on Wednesday.

Sunday, March 2, 2008 10:46 AM CST

I've started a blog which seems to be easy to post to from my cell phone by text messaging. It should make it easier to give updates from Atlanta. Updates on Katie's surgery will also be there as well as family updates.

http://holleman-newz.blogspot.com/

Saturday, March 1, 2008 6:14 PM CST

Macey's Barium Enema (BE) is scheduled for Monday. We started thining out her diet yesterday and she's taking additional doses of Miralax getting ready for the actual bowel prep tomorrow. We're going on up to Atlanta after lunch tomorrow so that she is closer to the hospital and isn't on the interstate with such a long ride while her prep kicks in. We will need to be at registration at 7:30 and the BE will be at 8. It should take one to two hours. She's read several handouts on the procedure and feels more confident about what we're trying to look for and how it might go.

She seems to have cleared all her chest infection and her lungs are good again. No more sinus crud and she's been at school all of last week but one day when she came home with her stomach.

Thursday, February 14, 2008 9:18 PM CST

Macey has another infection. Probably a sinus infection but it could have already turned into another pneumonia. She is on antibiotics by mouth this time with a probiotic (culturelle). She also is on a decongestant, neb treatments, advil and nose spray. She has run some fever with this infection which is actually a good thing. Until of course it got up to 102.4 and I started worrying about the possibility of more febrile convulsions. SO we gave her Tylenol also and the combination of Advil/tylenol seemed to break the higher fevers. Since then they've gotten up to 101 but advil brings them down. She gets bad headaches with her fever so she's very uncomfortable. Last night she started coughing around 3 am and when i went to check on her she had gotten up to 101.5 and had a nasty peak flow of 200. SO she got more advil, a cool washcloth and an additional neb treatment.

i did speak to the GI in atlanta who said that giving her the oral antibiotic would not be too bad on her gut as long as we did the probiotic and that the infection took priority. She also said that they would call with a date for the Barium enema soon. It should be in about 2 weeks as long as Macey is over the current infection and has been fever free.

Thursday, January 31, 2008 1:58 PM CST

Macey's honeymoon period is over. In December it was decided to take her off her daily prophylactic Vantin because it might be fueling her overgrowth problem. She had been on it for 3 years now along with weekly subq.

Monday she had a sore throat, which in hindsight was probably a restricted airway. By Tuesday morning she was coughing and by Tuesday night when I listened to her she wasn't moving much air in her right lower lobe. Plus her peak flows had fallen quite a bit. So we started neb treatments of Xopenex and took some Advil for comfort and she was really good about drinking more water than usual.

Wednesday morning she still wasn't moving as much air on the right as on the left and peak flows were not rebounding but actually dropping after nebs. Plus the cough just sounded alittle worse. So we called the ped and they saw her right after lunch.

She has crackles in the right lung now but is actually moving air better. She got 2 gms of Rocephin. IM. Poor kid. She's still doing the nebs but at least not every 3 hours now. She is getting CPT every 6 hrs and doing an incentive spirometer. Peak flows are still crap.

So 24 hrs after the 2gms she's starting to rebound. If she's still crackling tomorrow or her peak flows aren't at least in the yellow then she'll go back for a recheck and possibly more shots.

This is her first chest infection in a while. We sure haven't missed em'.

Tuesday, January 29, 2008 1:29 PM CST

Macey did come home with all A's for last semester. Minus the C in Spanish 1A. But so far this semester things are clicking alittle better in that class. If we could just keep her in school and not out sick that might help too.
She went to Egleston to see the GI about her stomach and gut. It was a good appointment and now we're waiting to hear about possibly doing a Barium enema and manometry tests. The BE can be done in Atlanta but we may have to go north if there's no motility clinic started there soon. Her afternoon appointment with her immuno came out good. She'll have levels run next month. She's been having some breakthrough pain with her stomach so she's been bumped up to 75mg of the Elavil. Today she's actually home with a sore throat and cough. She infused Sunday so it's probably viral. Plus she went to tumbling last night and it probably was a little cool in the gym so that didn't help. But she's doing really well and almost has her cartwheel down. He's even spotting her for a back handspring.

Saturday, January 5, 2008 9:47 PM CST

Macey's doing well. She enjoyed a nice Christmas and now has started back to school for the new year. She has an appointment later in the month with a new GI doctor for a third opinion on her stomach. She's still on the 50 mg's of Elavil. We hope that this new doctor will have new ideas about her stomach and can get her off the Elavil.

Her infusions are going well. She does the whole thing now. She draws the med, primes the pump, sticks herself and goes about her business. WHen she's done she puts everything up and checks her lot numbers.

Her grades are better this year since the Narcolepsy was diagnosed and she's on medicine. She gets her report card next week but finals went well and she hopes to bring home all A's. (minus the high school Spanish class - but we won't talk about that).

She has a youth ski trip in February and she's looking forward to going off with them. She actually skis pretty well for her age. The one time she's been before.

Happy New Year to everyone and take care.

Wednesday, September 19, 2007 11:39 AM CDT

day 2. feeds are at 80 cc/hr. elecare 30 cal. she was sick last night after they tried to bump up the rate. then they pulled it back down to 60 and slowly bumped it back up overnight. She's made several laps around the floor and is feeling better. HHC delivered a kangaroo pet pump and will send out a Joey pump when one comes into the office. the pump has a backpack with it so that's nice. but the Joey will be half the weight. hopefully we'll be out of here sometime this afternoon. Hopefully there will be no more vomiting.

Tuesday, September 18, 2007 5:57 PM CDT

Macey is in for her NG tube. the first one came out when she was throwing up after the feeds were started. the second one seems to be doing better. feeds are continuous at 60 cc/hr. hopefully we'll be home by lunch wednesday.

Monday, September 17, 2007 12:37 AM CDT

THe GI called Friday and said that the biopsies looked good from her stomach. That was a huge relief. So we know we're not dealing with any disease to speak of. But the irritation and aggravation in her stomach lining is still there so we will trudge on with the gut rest.

Macey has to be at the Children's Hospital Tuesday morning at 9am. NPO after 5 am. She will get the NG tube and they will use Elecare for her feeding. The GI nurse is faxing orders to a local HHC called Pediatric Specialists. We're not familiar with them. We've used Accredo and PSA in the past.

She is listed as 23 hour observation so we'll take her in tomorrow morning and hopefully be out by Wednesday afternoon.

I'm still curious to see how he will order her meds. If he will actually let her take those with a sip of water or if we're going to have to go to the full extreme of crushing them. Also she is on every other day Miralax. How will we do that? Or will the extra water in the feeds help with her colon transit?

We talked last night about our trip to Orlando during their Fall break and she does still want to go. Very certain of that she said. So today we'll gear up for tomorrow, comfy PJ's, DS to play. She has to get her subq of IgG so we'll also get that out of the way.

The last standing questions will be for him tomorrow, how often a day for feeds and how long is she looking at having the tube?

Sunday, September 9, 2007 10:32 PM CDT

So now I have meds and surgeries as a part of her journal history and i can get to it pretty easy and just add as needed. We're anxiously awaiting wednesday's results from the lab. Macey seems to think this is really going to help her and i hope that she is right.

Sunday, September 9, 2007 10:30 PM CDT

plus it would be nice to have her list of surgeries and hospitalizations they always ask for.

June 1995 EEG

March 1996 Bilateral Eustachian Tubes & Bilateral Tear Duct Probe - upper and lower lids

March 1997 2nd set Bilateral Eustachian Tubes (T-tubes) & Adenoidectomy

October 1997 8 day inpatient admission - Bronchitis - Functional Endoscopic Sinus Surgery; 3 day admission - Staph aureus infection in sinus cavity

November 1997 CT - brain with sinus views

December 1997 Sinus lavage - Bronchoscopy - Laryngoscopy - PICC line placed - 15 day IV Rocephin (sinus infection & orbital cellulitis); Port-A-Cath placement - Egleston Children's hospital PICC line infection - line removed

January 1998 - August 1998 December 1998 - December 1999 December 1999 - present 5 gms IVIG infusions via port q 4 weeks 10 gms IVIG via IV q 3 weeks 12 gms IVIG via IV q 3 weeks

February 1998 Sinus infection - IV Rocephin x 14 days

March 1998 Bacterial Overgrowth of Small Intestine - oral Gentamicin x 10 days

May 1998 Sinus Infection - oral Cefzil Endoscopy w/biopsies - abdominal pain

August 1998 Serum sickness - Penicillin allergy confirmed

September 1998 4 day admission - Staph Epi infection - IV Vancomycin x 14 days

October 1998 Upper Respiratory Infection - Infiltrates - 2nd staph infection - Port Removal PICC line placement - IV Vancomycin x 7 days - home health IV's

November 1998 4 day admission - Pseudomonas - IV Gentamicin 45 mg & Fortaz 1 gm x 14 days - PICC line removed Speech Therapy re-started; OT therapy started Pneumovax response levels Grade I left kidney reflux - VCUG & Renal US

March 1999 MRI - brain - Egleston

June 1999 Endocrinology consult - Water deprivation test - partial Central Diabetes Insipidus Diagnosed - DDAVP started

September 1999 CT - Sinus & Chest

December 1999 VCUG, renal ultrasound, CT - Sinus

January 2000 Central line placement - IV Rocephin 1200 mg x 18 days, CT - sinus

January 2000 24 hr pH probe, Upper GI series

May 2000 MRI-brain, EEG, spinal tap

June 2000 - CT - Sinus

October 2000 - CT - Sinus

December 2000 - VCUG & Renal sonogram

March 2001 - Ear Tubes removed

April 2001 - Admission for NG tube w/Go-Lytely for bowel cleanout

May 2001 - Chest CT

August 2001 - Gastric Emptying study, rectal biopsy

September 2001 - botox injections - gut

October 2001 - cecostomy tube placed

November 2001 - IVIG restarted 15 gms

October 2003 - cecostomy tube removed

August 2004 - Subcutaneous IgG replacement started

July 2006 - IgG replacement changed to 32 gms per month

September 2007 - EGD

Sunday, September 9, 2007 10:27 PM CDT

I was thinking about it yesterday, if i was somewhere and didn't have her med list with me how would i know what she was on and how much and when. it's really not that easy to remember all of that and recite it to a nurse when you're child is in pain and needing you. so if i post it here i could pull it up and tell them to just print it out. so here goes

Ritalin SR 20 mg Narcolepsy every morning
Nexium 20 mg GERD every morning
Singulair 10 mg COPD/Sinus disease at bedtime
DDAVP 0.1mg Diabetes Insipidus at bedtime
Vantin 200 mg infection prophylaxis at bedtime
Zyrtec 10 mg sinus disease at bedtime
Miralax 17 gms colonic inertia morning and bedtime
Vivaglobin 8 gms subq Common Variable Immune Deficiency once a week
Lomotil 2.5 mg colon infection as needed

Saturday, September 8, 2007 8:36 PM CDT

Macey had an endoscopy (EGD) on Friday. The GI said that there was inflammation and irritation and that he took several biopsies and did a CLOtest (H pylori). The clotest didn't even start turning while they were in the room fininshing the case so we're pretty sure it's not that but he doesn't know what the biopsies will show. They should have the results on Wednesday.

His plan at this point is to start Elavil. He ordered a baseline EKG while she was still in recovery. He will bring her back for 2-3 days inpatient to get an NG tube and work out elemental feeds. He says that the combination should let her stomach heal.

We've spoken to her about it and in the beginning she teared up but then started asking more questions. So now we're just waiting for the biopsy report to make sure there isn't something completely different going on and then get started if not.

Thursday, July 26, 2007 9:02 PM CDT

Macey's ped GI nurse called today. She told us that the breath test for the bacterial overgrowth was positive. They'll start Macey on oral Gentamicin tomorrow (pharmacy had to order it). She had this before when she was 2 or 3 years old. It probably comes from a combination of her immune deficiency and slow gut. Hopefully this will help with her constant stomach aches. The doctor from Scottish Rite handling her narcolepsy called at the first of the week and is changing her over to Ritalin 20 mg SR. Insurance would never approve the Provigil for her age and since we were needing to up the dose anyway he switched her over to something they would approve. He had to mail the prescription to us because it is considered a controlled substance. Hopefully it will be here soon. School starts back on the 6th and I'd like to have her on it for at least a week to see how she does.

Monday, April 30, 2007 11:14 AM CDT

Macey has started new medicine for what the doctors in Atlanta are calling hypersomnia. The specialist says she is possibly an early on-set for narcolepsy. He has ordered more specialized bloodwork to see if she carries the DNA for narcolepsy. The sleep test was inconclusive but her symptoms are showing signs of it. She has done well with the new medicine. Insurance has denied coverage of it because of her age but we have filed an appeal and just pay out of pocket until it is resolved.

She had a wonderful birthday Saturday and is 12 years old now.

Sunday, April 8, 2007 0:55 AM CDT

We've just gotten back from the beach today. Macey had good days and bad. She could not get use to the routine and had several melt downs. The doctors office in Atlanta called and they were able to move up her appointment for the sleep study consult. They wanted her there Wednesday but since we were out of state that wasn't possible. So they rescheduled for the 20th. Which is still better than the 30th. Her energy level is so down. Also her DI is acting up so I think we're about to bump up her dose for the summer. Still battling this awful head cold. Ped gave her a new decongestant and that hasn't seemed to help. She was able to kick a stomach bug right before going to the beach. She kept down fluids after about a day of not and with the help of Phenergan, Advil and her usual meds weathered through. Looking forward to Easter tomorrow and hopefully the weather will warm up here soon.

Monday, February 12, 2007 7:16 PM CST

Macey went to her first dance this weekend. She and her sister (older 8th grader) went to the school's Valentines Dance. She met up with a few friends and they had a wonderful time. She is also working with the 7th/8th grade girls soccer team as a manager. There are 2 other managers so everything's not completely on her but it's a big responsibility. She comes home every afternoon and tells what was learned and by 7:30 is sound asleep. Her sleep study went well so hopefully we'll hear something this week.

Monday, January 22, 2007 8:10 PM CST

Macey is doing well with her subq infusions. She has been having problems with severe fatigue. She will come home in the afternoons from school, crawl into bed and sleep until either dinner is served or won't wake up at all. She will wake up in the morning ok but then has problems with falling asleep in class and then wants to head directly home from school again and crawl back in bed. She's avoided all after school activities and evening church activities each Wednesday.

She is going to have a sleep study because all of her lab work is normal and her PFT's aren't normal but aren't low enough to be causing this. There are problems with fatigue for PID patients but we want to make sure there are no problems with sleep apnea or Macey going "fully" to sleep. Reaching all the sleep cycles that she is supposed to. There is a far fetched cause that could be pituitary related and since she has the DI we have to consider that.

Hopefully tomorrow or the next day we'll know when we are scheduled and then we'll head to Atlanta for the study. We have a choir retreat in North Georgia this weekend and she is going with the family to that.

Saturday, January 6, 2007 8:30 PM CST

Another year is here and thankfully good health. Macey had a recent checkup in Atlanta and her PFT's are stable, immune levels are stable and her bloodwork looks good. She has been having problems with fatigue but they can not relate it to anemia or anything autoimmune. She just usually naps after school and keeps a slower schedule than usual. She is enjoying Middle School and looks forward to her first real "spring break". Subq treatments are going well. I prepare the medicine and prime the tubing then she sticks the needles into her stomach and runs the pump. She takes the needles out at the end and puts on the bandaids. Everyone is very proud of her. We enjoyed a nice New Year's at Disney and now it's back to school.

Tuesday, February 21, 2006 7:57 PM CST

Macey has been doing well this winter. She's had one or two head colds but nothing that has needed additional medicine. Her weekly subcutaneous infusions are going great. Next week we will start on a premixed liquid version of her medicine. It will make infusion much easier each week. She is doing well in the 5th grade and attempted snow skiing this weekend. She also had her ears pierced. So far so good.

Tuesday, November 15, 2005 9:54 PM CST

Macey has had no success with the Prevacid so now they have her on Nexium. She has been taking her Miralax twice a day for a while now and has had two weekends of Mag Citrate cleanout. She is feeling alittle better with her tummy. Everything else is going well and we are looking forward to going to Disney for Thanksgiving.

Wednesday, August 17, 2005 9:52 PM CDT

Macey's gallbladder ultrasound was normal and her malabsorption test came back negative. So now we wait on the giardia test. She is still taking the daily Prevacid but also still having pains off and on. We're going to give it a couple more weeks. She had blood work this week.

Sunday, August 14, 2005 8:26 PM CDT

This is where more recent updates of Macey will be kept. It's gotten harder to figure out the new web page software so this seems much simpler.

Since the other page was updated Macey has started taking her replacement therapy subcutaneously in her stomach. She recently had a bought of infections so the immunologist at Egleston (Dr.Kobrynski) has upped her dose to 7.5 gms every week. That makes 30 gms a month. She will have labs next week as well as a CBC and liver enzymes run.

This past two weeks she has had problems with pain episodes in her stomach. The pediatrician doesn't think it's related to her colon problem but could be her gallbladder. She restarted a reflux med and we sent a stool sample for tests. Here at home we were thinking it could also be an ulcer because the pain is so debilitating and comes in episodes. She's been on the Prevacid since Thursday so we have another week or so until we see if that works. She has a gallbladder ultrasound tomorrow at the Medical Center in Macon to check that out.

If her gallbladder is a problem then we will go back to Egleston for her surgeon there to take it out. He will also check her old stoma sight and make sure that has finally healed right. Hopefully it's not her gallbladder and is just her reflux acting up.

She has started back to school and is in the 5th grade now. She wants to play sports this year and since her PFT's are starting to come up some (though not normal just yet) then the immunologist doesn't think it will be a problem. Her CT's at Egleston last week came back clear for the sinuses but with some "cystic" changes in both lung bases.

So for now we're interested in how this gallbladder test comes out and getting her back to school because she's been out since the middle of last week with this stomach problem.

Tuesday, June 8, 2004 3:11 PM CDT

Macey's at infusion today. Hopefully only one more IV infusion after this and then we can switch to the subcutaneous method. She's been well these last weeks. Some fatigue down at Disney and she didn't handle the heat well at all. She was sick our first day at the parks. Too much walking, not enough water and too much heat. The next few days we rented a stroller, brought more bottled water and she did much better.

She has glasses now. Her vision isn't completely off but enough so that she's nearsighted and was having problems at church and school.

School's out for the summer now.

Monday, May 10, 2004 11:51 AM CDT

I've decided to create this page for Macey to better update on how she is doing. This should add to the information already on http://members.cox.net/maceyh

Click here to go back to the main page.

----End of History----