|Nov 20, 2008|
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Cooper updateHey ladies. Thanks for all the thoughts and prayers for us. I am exhausted b/c I have slept like 6 hrs in the last 2 days, so I am just copying and pasting from my blog. This is more vague then I will post on here, b/c all my family reads our blog and I don't want to freak anyone out. But I will update more detailed later. Cooper is still having a tough time. He is also still having diarrhea. It was bloody in the hospital from the biopsies, but isn't anymore. Basically, he took the general really hard and his breathing wasn't great afterwards. That is why it has taken me so long to post. Sorry it is so long!
So sorry it has taken me so long to get an update posted. I tried several times throughout the day yesterday, but the internet kept knocking me off. Now, for a very lengthy update:
When we spoke to the anesthesiologist yesterday prior to Cooper's procedure, he told us he was not comfortable sending Cooper home after general anesthetic due to his pulmonary history.We were all happy to hear that they would be keeping him and monitoring his heart rate, respiration, and oxygen saturation all night. He was very upset before they took him back. He was so hungry; he had to go like 16 hours without nursing. They gave him an IV steroid before starting the procedure in order to reduce any inflammation and help keep his lungs as well as possible.
The procedure itself was pretty quick. The GI came in and spoke to us. He was very pleased at what he saw and said the medicine had been doing its job protecting the GI tract from damage. He saw no visible signs of an EGID (praise God), and we will have the biopsy results to confirm soon. We were refreshed on how to record his symptoms for the pH probe and expected to see Cooper soon. But, he really struggled to wake up. He was very groggy and unable to maintain his oxygen on his own. His stridor was also very bad, so they administered another steroid in his IV, and that improved. After about 3 hours, he was doing better and able to go to the step down, and we finally got to see him. He had a fever at that time, and has continued to have a low grade fever off and on since.
We got up to our room at about 5pm yesterday. Cooper was incredibly sleepy and slept most of the early evening. We tried to get him up to play around 8, and he did a little bit. But, he was certainly not himself. Around 9, thing got noisy. He was uncomfortable and unhappy. He cried/screamed off and on for most of the night. He finally slept for around 3 hours, so we all were able to get a little rest.
this morning the GI came in and said we could go home today. We tried our best to let Cooper have a few hours of normalcy in order to get the most accurate probe results possible, but he was no interested. He was still too sleepy. He had the probe pulled around 11 and we left around noon.
He is still running a temp, and is no at all the "Cooper" we know. He has not got his appetite back yet, and he is still extremely groggy and tired. He will only play for a few minuets and then just wants to lay in my lap. I talked to the GI nurse, and she said if he is running 102 or higher to call. If he is not a lot brighter tomorrow, I will take him to the pedi in the morning. For tonight, we will be lazy, and he will sleep with us tonight.
|Nov 20, 2008|
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
|oh how sad! Poor baby! 16 hours and no nursing?! Joslyn would KILL me! Poor darlin. I am glad you are home..... hoping you stay there. Cuddle with your lo tonight.... wishing you some peaceful nights sleep!|
|Nov 20, 2008|
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
|I'm glad you've got good news but it stinks how he's feeling. I bet he just needs some time to get all that stuff out of his lil system. I hope he feels better soon!|
|Nov 20, 2008|
Mom to Ethan, born 4/23/08. Diagnosed with Reflux at about 1 month, started medicating with Zantac, which wasn't helpful for us. At about 2.5 months, we started on Prevacid, twice a day, and that is working much better.
Ethan is breastfed and has a few solids that he is enjoying very much.
|Poor little guy. Hopefully you guys will get some good rest tonight, and he'll feel better tomorrow. |
|Nov 20, 2008|
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
|Thanks for the update Molly Beth! We have been praying for Cooper here. I am sorry he is still feeling poorly but glad you seem to have gotten some answers with more to come. I will be thinking of you and hoping that he is considerably better in the morning. All this stuff just makes you want to love on them even more. Poor little guy! Sending ((HUGS))!!|
|Nov 20, 2008|
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
|i have been thinking about you guys, i am glad the scope looked clear but sorry cooper had so much trouble with it. I really hope the ph probe was reveling even though he was sleepy. i bet he is glad to be back home and able to nurse freely!|
|Nov 21, 2008|
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
|You must be exhausted. What a stressful time. I am so happy that the scope came back clear. What a huge relief. I hope you get some answers from the ph probe.|
Hope cooper feels better tomorrow. Katie had a hard time with it too. Took a couple days to get back to normal. SHe also had fever.
|Check with your