After James' most recent surgery in December, we were hoping his acid reflux troubles would go away. And for awhile we thought they had. His reflux was much better and he had a cold in January that didn't turn nasty, so we were hopeful. He even went the whole month of February without any trips to a hospital, only seeing a doctor for an 18-month well visit. Then around mid-March the whole family got colds. Dave and Andrew seemed to get a mild version of what James and I got. It took me over two weeks to kick it. James' reflux was acting up around the same time and the combination always seems to push him over the edge. The doctors say that reflux makes colds worse and colds make reflux worse, so the two can really feed off each other and make a bad cold really, really bad. James ended up in the hospital for two nights while my parents were visiting because he needed some oxygen. He seemed to be getting better so we went home. The Monday after that we headed to Houston so that James could meet his new surgeon and pulmonologist. He also needed to get his vision tested since he had bleeding on the brain when he was a newborn and currently has a droopy eyelid. All of his new doctors are great and Texas Children's is a great hospital. The eye doctor said that his vision is perfect for now and that the droopy eyelid is minor. We'll have to take him yearly to get his vision tested to make sure his vision stays on track (this is due more to the fact that I had a lazy eye that developed later in my childhood than his newborn issues). The surgeon wants to do yet another esophogram with an upper GI and small bowel follow through. He wants to make sure there aren't any blockages or strictures (since his reflux has been acting up again) and get a better idea of what James' looks like on the inside. He also referred us to a GI doctor because we would all prefer to get James' reflux under control with medicine as opposed to another surgery. We won't have to see the surgeon regularly unless another surgery is required. The pulmonologist changed up some of James' nebulizer meds. When he's not sick, he'll be down to one breathing treatment a day. This is to keep the swelling of his airways down that the reflux causes. We'll make trips to see the pulmonologist every 3 months. Overall the trip went well. A new friend from church road along with me since Dave had to work. It was so nice to not have to worry about Andrew while I was talking to all the doctors. On the way back from Houston, James got sick again. We went straight to the doctor when we got home. His oxygen rates were low again and had to be readmitted to the hospital. This time he was in for 9 days. He had some ups and downs over those 9 days. I was lucky enough to have made yet another new friend through church that sat at the hospital with me most days and helped take care of Andrew. Our new church family has been the biggest blessing. James and I never went a day without a visit from someone and they often brought meals and snacks for us too. They are amazing! After James got discharged we headed back to Houston to meet his new GI doctor. She is actually from Pittsburgh...such a small world! She added a new medicine and has a few other ideas to try to help James. We will be seeing her every 6-8 weeks, probably making small adjustments to his meds each time until we find a combination that works for him. She also said that as his core gets stronger, the reflux should get better. This is because as your core gets stronger, your stomach and esophagus get stronger and do a better job of holding down food and acid. She also mentioned that his acid reflux will be a lifelong battle. It was kind of nice to hear this from a doctor instead of believing and hoping that each next step will be the thing that fixes James' problems. Our goal is going to be to get his reflux under control enough that it will stop negatively affecting his respiratory system. James also has new therapists. The system in Louisiana doesn't have as much funding as the one in Pittsburgh, so he won't have therapy as often, but the therapists he has are great. James has also been making progress on his own the past couple months so I think the therapy he will be getting will be enough. For now he has an occupational therapist and a specialty therapist; both will focus on building James eating skills and trunk strength. Finally, James was tested for food allergies last week. The doctors wanted to make sure that there wasn't an allergy making things worse for him. He wasn't allergic to any of the 30 foods they tested for. They also tested his immune system at the same time and it was normal as well. Good news! James has been completely healthy for about a week now. Please continue to pray that his reflux stays/goes away and that his little body can fight off any germs that come his way!
Tuesday, April 12, 2011
This Past Month with James
After James' most recent surgery in December, we were hoping his acid reflux troubles would go away. And for awhile we thought they had. His reflux was much better and he had a cold in January that didn't turn nasty, so we were hopeful. He even went the whole month of February without any trips to a hospital, only seeing a doctor for an 18-month well visit. Then around mid-March the whole family got colds. Dave and Andrew seemed to get a mild version of what James and I got. It took me over two weeks to kick it. James' reflux was acting up around the same time and the combination always seems to push him over the edge. The doctors say that reflux makes colds worse and colds make reflux worse, so the two can really feed off each other and make a bad cold really, really bad. James ended up in the hospital for two nights while my parents were visiting because he needed some oxygen. He seemed to be getting better so we went home. The Monday after that we headed to Houston so that James could meet his new surgeon and pulmonologist. He also needed to get his vision tested since he had bleeding on the brain when he was a newborn and currently has a droopy eyelid. All of his new doctors are great and Texas Children's is a great hospital. The eye doctor said that his vision is perfect for now and that the droopy eyelid is minor. We'll have to take him yearly to get his vision tested to make sure his vision stays on track (this is due more to the fact that I had a lazy eye that developed later in my childhood than his newborn issues). The surgeon wants to do yet another esophogram with an upper GI and small bowel follow through. He wants to make sure there aren't any blockages or strictures (since his reflux has been acting up again) and get a better idea of what James' looks like on the inside. He also referred us to a GI doctor because we would all prefer to get James' reflux under control with medicine as opposed to another surgery. We won't have to see the surgeon regularly unless another surgery is required. The pulmonologist changed up some of James' nebulizer meds. When he's not sick, he'll be down to one breathing treatment a day. This is to keep the swelling of his airways down that the reflux causes. We'll make trips to see the pulmonologist every 3 months. Overall the trip went well. A new friend from church road along with me since Dave had to work. It was so nice to not have to worry about Andrew while I was talking to all the doctors. On the way back from Houston, James got sick again. We went straight to the doctor when we got home. His oxygen rates were low again and had to be readmitted to the hospital. This time he was in for 9 days. He had some ups and downs over those 9 days. I was lucky enough to have made yet another new friend through church that sat at the hospital with me most days and helped take care of Andrew. Our new church family has been the biggest blessing. James and I never went a day without a visit from someone and they often brought meals and snacks for us too. They are amazing! After James got discharged we headed back to Houston to meet his new GI doctor. She is actually from Pittsburgh...such a small world! She added a new medicine and has a few other ideas to try to help James. We will be seeing her every 6-8 weeks, probably making small adjustments to his meds each time until we find a combination that works for him. She also said that as his core gets stronger, the reflux should get better. This is because as your core gets stronger, your stomach and esophagus get stronger and do a better job of holding down food and acid. She also mentioned that his acid reflux will be a lifelong battle. It was kind of nice to hear this from a doctor instead of believing and hoping that each next step will be the thing that fixes James' problems. Our goal is going to be to get his reflux under control enough that it will stop negatively affecting his respiratory system. James also has new therapists. The system in Louisiana doesn't have as much funding as the one in Pittsburgh, so he won't have therapy as often, but the therapists he has are great. James has also been making progress on his own the past couple months so I think the therapy he will be getting will be enough. For now he has an occupational therapist and a specialty therapist; both will focus on building James eating skills and trunk strength. Finally, James was tested for food allergies last week. The doctors wanted to make sure that there wasn't an allergy making things worse for him. He wasn't allergic to any of the 30 foods they tested for. They also tested his immune system at the same time and it was normal as well. Good news! James has been completely healthy for about a week now. Please continue to pray that his reflux stays/goes away and that his little body can fight off any germs that come his way!
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Stay healthy James! How did they test his vision? They've told us that they can't test Grace's until she's 2 or 3. I would love it if they could do it much sooner. Maybe your doctors know something ours don't!!
ReplyDeleteBethany-
ReplyDeleteThey dilated his eyes to check for optic nerve damage and imbalance in his vision. He didn't read a chart or communicate with them in any way. I don't think they know or not if he will need correction, just that there wasn't an imbalance in his vision (one eye stronger than the other). Since I have a lazy eye that developed later in elementary school he has to have it checked regularly to make sure the droopy eyelid doesn't turn into a vision imbalance in his eyes. I honestly don't know what that entails. The doctor said he was good and I didn't ask too many questions since we're worried more about other stuff with him right now.
I am happy that you have found good doctors. I do pray for you all every day and know this has to be so hard on you but you continue to amaze me with your strength. God is so good. Love to you.
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