Back Home and What's Next...

Matthew made it back home this evening. He's on 2 new medicines (6 total) that will hopefully keep him feeling better and more relaxed. His Doctors determined that his colic was aggravated by a combination of hypertension, constipation and withdrawal from the narcotics he was on for the first three weeks of his life. Amy and I realize that this is a complete guess on their part but we also understand that not treating the colic was hurting is heart and we have to try something.

One of his new medicines (Clonidine) is a kind of all purpose medicine primarily used to treat high blood pressure, but is also used to treat narcotic addiction and has a very mild sedative affect so it will help him relax. He was also put on Lactulose to help "keep things moving" through his body. These two medicines are in addition to the 1/2 baby aspirin used to thin his blood, Prevacid used to treat acid reflux which is common in heart babies, Enalapril used to treat hypertension which is also common in heart babies and Lovenox which is a type of blood thinner used to help prevent blood clots from forming and possibly blocking the tiny 3.5 millimeter shunt he currently has directing blood flow to his lungs. Eventually he will have 2 other larger shunts (i.e. gortex tubes) that will direct blood flow to his lungs (placed during the 2nd and 3rd surgeries) so blood clots will be less of a concern then, but right now they are concern #1 and will be until the 2nd surgery.

They also tweaked his diet a little bit while he was in the hospital. Since heart babies have trouble gaining weight Matthew was originally placed on Amy's milk fortified with a high calorie formula and a thickening agent. The formula takes the calorie content per ounce up to 27 compared to breast milk alone which has 20 calories per ounce. One theory was that Matthew was having trouble digesting the formula causing him belly aches which also contributed to the colic. His doctor has now switched him to breast milk fortified with a soy formula giving him 24 calories per ounce. They are hopeful that this will ease the workload on this stomach resulting in a happier Matthew.

Hopefully this will be his last trip to the hospital until the 2nd surgery which will be the Stage 2 Norwood - Bidirectional Glenn Procedure. In this procedure the surgeon will connect the superior vena cava (the large vein that collects blood returning from the upper body) directly to the pulmonary artery. This new pathway allows oxygen-poor blood from the head and upper body to flow directly to the lungs, bypassing the heart and hypoplastic right ventricle. In this stage, the tiny 3.5 millimeter shunt that was placed in the first surgery will be removed because oxygen-rich blood can now circulate throughout his body. After this stage, Matthew may still have a bluish tinge (especially when he cries), but will be better able to handle infection and other problems.

Matthew's 2nd open heart surgery will likely happen some time between late February and July of next year. That seems way too soon.