Jacob & Lili

Jacob & Lili

Thursday, August 9, 2012

A Bittersweet Anniversary

On July 26th we "celebrated" an anniversary. A year ago Jacob was admitted to Stanford and the NG tube was placed. All foods were pulled and we started on a new chapter in his EoE journey. Although it was the best decision we have made so far regarding this disease, it was one of the hardest things I have had to do as a mom. Below is the journal of Jacob's symptoms that I kept during the time preceding the NG. How far we have come since then.

Date                   Time                  Abdominal Pain              Notes
12/3/10                                                                             Jacob's 1st Endoscopy
12/7/10                                                                             Diagnosis of EoE - Began Budesonide slurry
12/9/10                                                                             Skin prick testing = negative
12/15/10                                                                           Patch testing = negative
12/16/10           4:30 pm                 3
12/19/10         11:30 am                                                     Chest pain while running
12/20/10         12:29 pm              Pain                               Won't eat
12/22/10           1:59 pm              Pain                               Eating french fries
12/23/10           2:30 pm                10                               Headache
                         3:29 pm                10                               Headache, fever of 100
12/24/10       all day                    Pain                               Headache
12/25/10           12:29 pm              3
                           1:59 pm              8
                           4:00 pm              5
                           4:59 pm              2                                   banana & guava juice
                           6:29 pm              9                                   potato with chicken broth
                           7:30 pm              3
                           7:59 pm              10
12/26/12             8:15 am              5                                     Headache
                           1:00 pm              6                                     Headache
                           4:00 pm              5
                           4:59 pm              7
12/27/10             8:30 am              8
                           9:29 am              6                                     Banana
                          10:59 am             4
12/28/10              1:30 pm            5                                      Headache
12/30/10              6:00 pm            9
1/1/11                  9:00 am            6
1/2/11                  7:59 pm            6
1/10/11                                                                                   Additional labs came back negative, still
                                                                                               having belly pain - 2nd scope to be        
                                                                                               scheduled
1/11/11                                                                                    Started miralax
1/13/11                                                                                    Emailed doc about possible Chron's
                                                                                                -no call back, no call regarding 2nd scope
1/20/11                                      Hurting                                 No school
1/21/11                                      Hurting                                 No school
1/25/11                                                                                   2nd Scope
1/27/11                                                                                   Biopsies clear, protein in urine, reduced slurry
1/29/11                                       Hurting                                 Throat pain
                                                 12:00 am                               101 fever
1/30/11             all day                                                            fever
1/31/11                                                                                  severe stomach pain, fever all day
2/3/11                                              5                                    positive for strep
2/4/11                                                                                    still no meds for strep
2/7/11                                                                                    xray for constipation, shows moderate
                                                                                              constipation, started mag = BM
2/8/11                                                                                     2nd dose = BM
2/9/11                                                                                    miralax = BM
2/10/11                                                                                    No BM, stopped slurry
2/11/11                                                                                     No BM, unltrasound
2/14/11          6:00 pm                                                             BM!!!!
2/15/11          3:29 pm                                                              BM
2/16/11          5:30 pm                                                             BM
2/17/11          5:30 pm                                                            BM, voiced aggravation with head tick
2/18/11                                         Hurting                             No BM
2/19/11                                                                                  Eliminating eggs, no BM
2/20/11                                                                                   BM
2/21/11                                                                                  BM
2/22/11                                                                                   no BM
2/23/11                                                                                   no BM, stopped taking Strattera
2/24/11                                                                                   BM
2/25/11                                 hurting                                       didn't want to play
2/26/11                                                                                    no BM
2/27/11                                                                                   no BM
                     2:30 am                                                            throat burning
2/28/11                                                                                     restart prevacid, start Sena
                    3:29pm                                                                BM
3/4/11                                                                                     started Budesonide slurry
3/9/11                                     hurting                                     throat still hurting
3/10/11                                   hurting                                     throat no longer hurting
3/11/11       7:30 am                                                               bacon stuck in throat
3/15/11                                                                                  playing tickle monster = severe stomach pain
                                                                                             laid down = chest pain
3/16/11                                                                                    x-ray
3/21/11                               hurting
3/24/11                               hurting                                       wouldn't eat dinner
3/31/11                                                                                   Dr. Torrano (allergist) - eat until Cincy
4/4/11                                 hurting                                       SB chocolate milk and scone
                                          hurting                                         while drinking milk
4/13/11                                 hurting                                      dizzy & leg weakness
4/15/11                              hurting                                         fever - 99
                                         HURTING!!!                               eating mac n'cheese and milk
4/17/11      Evening           hurting
4/20/11      Evening           hurting
6/25/11                             hurting                                        within 5 minutes of eating strawberries
6/28/11                             hurting                                         leg pain
6/29/11                              hurting
7/5/11                               hurting                                         ear pain
7/6/11                               hurting
7/7/11                              10!!!                                             Stanford prescribed periactin
7/9/11                                                                                 no sleep, reaction to periactin
7/11/11                                                                                Stanford prescribed gabbapentin
7/12/11                           hurting                                          started gabbapentin, spoke with Cincy about 
                                                                                           going elemental
7/19/11                          hurting                                           hard to wake up
                                      1:00 pm                                        Spoke with Dr. K - trying to track down Dr. C
                                                                                          won't take the gabbapentin
7/15/11          7:30am    hurting/headache                           call from Cincy = I have to coordinate NG
                     4:30am   hurting/ear pain/hand hurting
7/17/11         5:30pm          hurting                                     veggie soup
7/20/11         5:30pm                                                           leg pain
7/21/11         4:00pm                                                         no beds available at Stanford
7/22/11        12:29pm          hurting                                    won't eat lunch
                    1:45pm                                                           able to eat
                                                                                            Stanford is requesting a bed for Monday
7/23/11        4:59 pm                                                          stung by a bee on the right foot, extreme pain,
                                                                                           complaining of pain in both legs
7/24/11       7:00 pm                                                          stomach pain and foot itching
7/25/11        7:59 am         hurting                                       won't eat breakfast
                   9:00 pm                                                            admitted to Stanford
7/26/11       1:59pm                                                             NG placed






The Maupin's

The Maupin's