When Shep was first admitted to the hospital Vicki and I were informed that he would likely be home in just over a week. We have now been in the hospital for 17 days and we still have a few more days ahead of us. These last two weeks have been incredibly challenging, but Shepherd has been amazing throughout this entire process and continues to impress and inspire his parents.
First and most importantly, Shep's surgery was a success! After two weeks of constantly monitoring Shep's vital signs and performing an echocardiogram to monitor the flow of blood through his heart, Shep's doctors are very pleased with the results of his surgery. There is still a little residual leakage around the patch in Shep's heart, but this condition is common in these types of procedures and the doctors are confident that these little holes will close or get smaller as Shep's heart grows. So with Shep's heart in good shape you may be asking yourself, "why have they been in the hospital so long?" The answer to that question is - Shep's lungs.
During the surgery and in the days following, Shepherd was on a ventilator to help him breathe. About four days after the surgery Shep's doctors tried to take him off the ventilator. Initially, Shep did well, keeping his vitals within acceptable levels and breathing regularly. However, after about 12 hours of breathing on his own, Shep's vitals began to deteriorate and his breathing became labored. The doctors ordered a chest x-ray to get a better look at Shep's lungs and quickly realized that his right lung had collapsed. In his weakened state Shep was unable to reinflate the lung on his own and he had to be placed back on the ventilator. We are not exactly sure why Shep's lung collapsed, but it is not uncommon for babies to have trouble coming off of a ventilator. After his initial attempt, Shep's lung collapsed two more times before he was finally able to reinflate his lung himself and breathe on his own. Hence, his detour down Collapsed Lung Lane.
And so here we are. Shep reinflated his lung and has been off the ventilator for four days! Since Shep has been doing so well he was moved out of the CICU and onto the regular hospital floor. His vitals and breathing continue to improve and we were able to begin bottle feeding. Of course, feeding is all about coordination and right now Shep's suck / swallow / breath is about as coordinated as Charles Barkley's golf swing (if you don't get this reference YouTube it and your welcome). But we are working on getting Shep's swing back. Just like in the NICU, we are back to focusing on feeding and growth. Once we get Shep back to the levels he was at before being admitted to the hospital we can go home. So there are 99 bottles of formula on the wall and we are taking one down and passing it to Shep.
Before I go, I wanted to touch briefly on the perspective we have gained over these past few weeks. There is no doubt that Shepherd's road has been rockier than most. But with that being said, time in a children's hospital offers a parent a unique opportunity to put things into perspective. During Shep's stay in the hospital we have met some wonderful people and heard some amazing stories. It is easy to get discouraged when your 15 week old child has spent more than 10 weeks of their life in a hospital, but when you meet a two year old who is on her sixth hospitalization or a newborn who is undergoing his second major surgical procedure you are reminded that their are roads far rockier than your own. It also helps to have wonderfully supportive people around you. From the amazing grandmothers who have put their lives on hold to come up and take care of Jack, to the other families in the CICU and the incredible doctors, nurses and staff at Children's, the level of support and compassion we have received is difficult to put into words. Vicki and I are so proud of our son and forever grateful to those around us.
Driving straight and fast on the road,
-The Brittons
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