Care4Conway: GI Doctor Update

Thursday, January 10, 2008

GI Doctor Update

We're home from Dr. Brady's now. He weighed 21 lbs. 6.5 oz. That's up one ounce since last Friday. She was happy to hear he's vomiting less and trying new textures and tastes. She is still (Thank God!) in agreement with us that we'll give him more time to get back to eating orally. She just thinks that with all the development he's doing, it's definitely out of the range of possiblility. Also, the main reasons for doing surgery for the g-tube (and in his case repositioning the pacemaker) would be if he is pulling it out constantly and can't stand it in there or if it is prohibiting him from developing. It is doing neither so he's fine with it in unless things change. We are going to try to sneak some extra calories in his overnight feeding by adding one scoop of Progestimil. It is a special formula that is supposed to be super easy to digest and shouldn't cause any upset tummy. If he tolerates that for a week we'll add two scoops which would bump him up to 24 cal feedings at night. Then if he tolerates that for a week or so we can start adding it to his daytime feeds. We'll just have to see how he does. Basically now he's just maintaining weight and she'd like to see him gain some more. She did say that my milk is the easiest to digest and so after he turns one he will stay on it rather than switching to whole cows milk. I'm kinda bummed b/c I was looking forward to the end of pumping, but I'll try to stick it out if it's the best thing for him. She said if I can't take it and want to stop, by all means she can find something he can digest (they even make formulas that are predigested!) such as Alimentum, but I know those are really expensive so if I can, I'm going to try to just stick it out a bit more and pray he starts eating more food soon! We go back in 1 month and that time see the nurse practitioner.

Tomorrow he will get this month's dose of his RSV vaccine (synagis).

Either he isn't crazy about sleeping in the closet (don't worry, the doors are off!), is overtired at night when his nap is cut short, has a new case of separation anxiety, or all of the above. Last night it was a three hour process to get him to bed for the night! He got so mad he made himself throw up. I could tell he was not having reflux because he could lay down just fine if I was in there. Once I left, he screamed bloody murder. So, if he were "normal" I'd probably give him a few nights of cry for 10 min, check on him, reassure him, let him cry some more. But since he's not the crying makes more phlegm which makes him gag which makes him throw up which makes him not gain weight! If I go in there and pick him up then he learns bad habits but keeps his food down. It is so hard to know what to do sometimes! Parenting. . .such joy (yes, that was said sarcastically)!

1 comment:

Anonymous said...: Erin I just finished watching the true vedio of Mookie playing peekaboo with Connie. I hope you can back this up and have a permanent record of this. I am praying Connie will be able to eat by mouth soon so as to give you more relief. Love Dad; January 16, 2008 at 11:45 PM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.