Tuesday, May 10, 2011

New Doctors For Luke

No new pictures, but wanted to give an update on Luke. We knew twins would be challenging, especially once the boys were born and we realized that the "normal/great" experience of a first baby would be nothing like we had hoped for. I knew that leaving my job to stay home with the boys and care for all their special medical needs would not be easy, but never imagined how demanding, stressful and exhausting this past year has been. I still love being home with them and am thankful for the opportunity. Had I known what challenges we would face this past year, I'm sure it would have scared me away from quitting my job and dedicating all of my time to Jack and Luke.

Sorry for the lack of updates. Extreme busyness is no excuse - I know that everyone is busy - but it's just a way of life here now... I hate dark and rainy days as well as the extreme heat. I let too many things get to me and constantly struggle with focusing only on what really matters and not wasting my time and frustration on things that don't. This spring Luke's specialty clinic at the hospital started a support group for families of kids with special needs and chronic medical conditions. It has been great to share frustrations and get tips from others in similar situations. As hard as we have it, most families' medical struggles are far worse than ours, and it reminds us how much we have to be thankful for. It's good to be reminded that as loving and helpful as family and friends are, no one else really "gets it" and understands our challenges unless they are living and dealing with medically needy kids every day.

Last week the group was small and most of the time was spent talking about Luke and his feeding issues. His intake is never consistent month to month or even week to week. Occasionally he will take a small amount of food with texture and have no problems, but the next day he gags and throws up as soon as anything enters his mouth...
He has had his feeding tube for over three months and is gaining the exact weight that he was before the tube was placed. Normal gain is 10 grams per day. He has always averaged and is still only doing 5 grams per day. The doctor's goal is to reach 10-20 grams per day to help catch up, but so far his body is taking everything it can without any increased weight gain.
Luke has stopped drinking bottles and will occasionally drink slowly from sippy cups, but the only time we can feed him consistently is overnight and during nap time. We hate overfilling him and making him throw up, but finding the right balance has been very difficult.

The leader of our support group referred us to a developmental clinic at the hospital that assesses medical and psychological conditions to treat extreme feeding dysfunctions. This morning we had our first appointment and LOVE the doctor. She wanted to hear the entire story of Luke's life - before and after birth. She asked lots of questions, took very detailed notes and is the first doctor that has really connected with and taken a true interest in him. For over a year, we have asked for tests and referrals, trying to do anything we can to get some answers and find out what Luke needs. We now have someone who will fight for us and not stop until we get answers and start to make some progress. She called a pediatric GI doctor while we were there, explained that Luke could not wait any longer and needed to be seen immediately, and was able to get us in this afternoon.

Luke is starting two new medicines. The first is an antihistamine that surprisingly should increase his appetite. The second is reglan, which will help his stomach to empty faster. We are aware of reglan's side effects and have tried it before - Luke did not tolerate it and we stopped after about one week. This time the dosage is about one-fourth of what he was getting before and hopefully it will be enough to help without causing the irritability and twitching.

For feeding, we were told that we MUST make sure he gets at least 20 ounces per day (our high-calorie formula/calorie-boosting powder/microlipid mixture that we are currently using). He usually gets around 16 ounces since the only guaranteed feeding time is overnight and naptime. He is just too busy during the day - never still and constantly trying to climb on things - but we have a solution. His feeding pump is very small and came with a special-sized backpack that holds the pump and IV bag. The problem is even though the backpack is small, it is still almost as tall as he is. There is a "super-mini" backpack that we have ordered and should have within the next two weeks. That will allow him to wear his pump and receive feeds while he is awake and active. Many kids with feeding tubes wear their backpacks and have continuous feeds throughout the day - it becomes a part of them and helps them gain the weight they need. We are still a month or two away from that, but at least it will make it easier for us to eventually get enough into him.

OK - way too long and the boys have already been asleep for over three hours. If I don't quit and get to sleep now, it will be a really rough day tomorrow. Thanks for all of the continued thoughts and prayers. We will do our best to keep you updated on a more regular basis.