|
I never think of the future. It comes soon
enough. Albert Einstein ~2003~ |
||||||
| Visit
to local doc |
Children's overnight |
Children's day trip |
||||
|
Sun |
Mon |
Tue |
Wed |
Thu |
Fri |
Sat |
| *** = pokes | JULY
17 start of two week vacation |
18 transmission failed on Steven's Pass |
19 Innertubing at Mutiny Bay |
|||
| 20 Ben sick |
21 Ben sick |
22 Ben sick |
23 Ben sick |
24 Ben to local Dr. W |
25 Ben sick |
26 Ben sick |
| 27 Ben sick |
28* local chest x-ray & blood draw 10:30pm ER Dr. called, midnight arrived at Children's |
29*** noon renal ultra sound, 4pm diagnosis (teams arrived: Renal, Rheumatology, ENT, Ophthalmology, Audiology, Surgery) Steroid IV |
30**** catheter surgery, Foley catheter, dialysis 1hr Plasma Vit K Steroid IV |
31***** eye exam hearing exam Cytoxan IV Steroid IV Mesna Zofran |
AUGUST
1* end of bladder flush dialysis 1hr |
2* dialysis 2.5 hrs Pass Dinner |
| 3* Pass Aquarium |
4 dialysis 3.5hrs |
5 renal biopsy
|
6 Heparin free dialysis 1.5hrs, blood loss Pass Movie |
7 dialysis meds at home: Cytoxan Prednisone Prevacid/Lansoprazole Cefuroxime axetil Sulfamethoxazole/TMP Calcium Carbonate Nephrovite Calcitrol |
8 |
9 dialysis |
| 10 Salmon fishing |
11 dialysis |
12 jugular stitches separated |
13 dialysis |
14 won two trophies at the fair, salmon fishing |
15 dialysis, surgeon ok'd neck Start reducing Prednisone |
16 fishing, fair and Rendezvous |
| 17 fair, Levi and Gena here |
18 dialysis Pike Place Market |
19 | 20*** permacath replacement, heparin free dialysis, surprise overnight stay |
21 took trailer to Ft. Casey |
22 dialysis to 51K, high blood pressure 9 hours after |
23 Ft. Casey with Atticus |
| 24 fishing, overnight at GG's |
25 dialysis |
26 | 27*** check into hospital Cytoxan IV Mesna Zofran |
28 bladder flush |
29 to Ellensburg |
30 Ellensburg Rodeo |
| 31 home from Ellensburg |
SEPTEMBER 1 exit site looks infected, check blood levels |
2 | 3 Nephrology / Rheumatology clinic, check blood levels add Labetalol HCL (bp med) |
4 | 5 | 6 |
| 7 |
8 first day of school |
9*** Non catheter blood check, permacath clotted Double Labetalol dose |
10********* PICU 7:00am found seizing 9:05 airlifted 10:30 stabilized (intubated and heavily sedated) cranial CT scan MRI, MRA, MRV arterial bp line Dilantin Phosphenytoin Valium Ativan Fentanyl Hydralazine Calcium Gluconalc Vecuronium Vancomycin |
11** PICU 5:00am extubated Diagnosis Reversible Posterior Leukoencephalopathy Syndrome probably caused by seizing from hyper tension Very groggy EEG Chest x-ray |
12**** PICU Diuretic Thrush Chest x ray shows Aspiration pneumonia, Left hand cellulitis, Ativan complication, gross motor skills still impaired, failed MRIs, began Nystatin Clindamycin |
13******* PICU Ativan complications, Chest x-ray, peripherally inserted central catheter installed, permacath removed gross motor skills still impaired |
| 14* PICU played cribbage ultra sound of shoulder for DVT 7pm moved to floor Vancomycin |
15* CT lungs and sinus magician therapy dog walking BP meds: Amlodipine Labetalol Isradipene Hydralazine IV |
16*** CT results show lesions on lungs, infection in sinus TB test Therapy dog Music therapy BP still out of control, added Procardia XL |
17* Lung biopsy Chest x ray Clowns visit from social worker and Child Life services BP still out of control, added Enalapril Maleate |
18 Chest x ray gift shop tour Ben made phone calls to grandmas BP still out of control, added Hydrochlorathydroside |
19 Lung biopsy results BP still out of control, added Minoxidil |
20 crew at home emptied Ben's room, began oral, daily Cytoxan |
| 21 dizzy & puking Todd vacuumed heater ducts |
22*** learned to give Epogen injection |
23 | 24 second day of school |
25* Dr.W blood new flooring in room |
26* Dr. W hand |
27 |
| 28 retchy every morning, sleeping until about noon |
29** Dr. W hand |
30 | OCTOBER1* Dr. W blood Dr. W hand |
2 | 3 throwing up from Cytoxan |
4 |
| 5 started oral daily Zofran |
6 |
7 | 8* Neph / Rheum Clinic stopped Procardia XL reduce Tums & Prednisone |
9 Dr. W hurts to breath |
10 started oral daily Mesna |
11 Able to get up and feel OK at 7am, opening day of hunting season |
| 12 | 13 | 14 | 15* Dr. W blood |
16 | 17 Neurology Clinic |
18 |
| 19 |
20 tu |
21 tu |
22* Dr. W blood |
23 | 24 hunting |
25 hunting |
| 26 hunting |
27 hunting |
28 hunting |
29* Dr. W blood |
30 hunting |
31 hunting |
NOVEMBER1 hunting |
| 2 swimming! |
3 |
4 | 5* Neph / Rheum Clinic |
6 Biofeedback Clinic |
7 | 8 |
| 9 S |
10 | 11 Up at 2am for sleep deprived EEG |
12* Dr. W blood |
13 | 14 | 15 |
| 16** Admit through ER for vomiting |
17 | 18 | 19** Dr. W failed IV |
20 Biofeedback Clinic |
21 | 22 |
| 23 |
24* check into hospital Cytoxan IV Mesna Zofran |
25 Stayed at Grandma and Grandpa's because Amanda had the flu |
26 Finally stopped daily vomiting caused by oral Cytoxan |
27 | 28 | 29 |
| 30 |
DECEMBER1* Dr. W |
2 |
3 Neph / Rheum Clinic |
4* Dr. W started vomiting again |
5 |
6 |
| 7 |
8* Dr. W |
9 | 10 | 11 | 12 | 13 |
| 14 |
15* Dr. W |
16 | 17 | 18 Biofeedback Clinic |
19 | 20 |
| 21 |
22*severe vomiting check into hospital Cytoxan IV Mesna Zofran |
23 | 24 | 25 | 26 | 27 |
|
You get the idea...lots of appointments and squeezing in the good stuff where we can.
Disclaimer:
This web site is provided for informational purposes only. |
||||||
