Yesterday was the first hurdle experienced in a long time. Since surgery, Hudson has been steadily increasing his bottle feeding. However, they wanted to ensure that all food was properly being swallowed as infants with his diagnosis often have higher risk to aspirate, causing food to enter airway/lungs vs. esophagus/stomach. They ran a swallow test on him and assessed his aspiration tendencies with various bottle and nipple sizes. The test results indicated that he evidenced higher potential to aspirate and as a result recommended two actions: 1) reduce flow of bottle and 2) insert feeding tube :(. Needless to say, the news was a bit of a surprise. why did we run into this hurdle now? However, after a bit of consultation with hospital staff, we began to realize this was the best thing for him in the interim in order to receive the necessary volume of milk required for him to grow. And as they told us, growth is Priority #1, 2, and 3 ahead of next surgery.
Last night and today was the second hurdle and it centered around blood oxygen levels. His levels began to dip last night and hit the lowest since surgery this morning. The hospital staff escalated his monitoring and requested head doctors to evaluate his rapid decline. They conducted both a x-ray and heart echo. Both tests showed no signs of either fluid/congestion in lungs or issues with his BT shunt in heart. They began to think two things may have caused the declined levels. First, during echo they noticed his ductus valve was now fully closed (result of elimination of prostaglandin post surgery), forcing his heart to adjust to reduced bloodflow to lungs. Second, because of the recent insertion of feeding tube, he was now receiving the full 60 mLs of milk every feed, which he never had before. They said this obviously results in stomach expansion which could lead to increased abdominal pressure on heart and lungs. Either way, they placed him on light oxygen to ensure proper saturation levels for continued monitoring. Good news is that ever since, he has been steadily in the green zone on his blood oxygen levels. They are hopeful this was just a one-time body adjustment but are definitely going to continue monitoring for some time.
With both of these recent developments, the original plan for upcoming discharge is likely delayed. We will know more tomorrow and Monday but for now we are very thankful that we were 1) able to experience these while in hospital and 2) they were quickly diagnosed and able to correct. We are hopeful that neither are long-term issues for Hudson.
This weekend they also began to share with us what to expect for Hudson for the period between hospital discharge and re-entry with next surgery. They highlighted that although he will be home, he will continue to be in a highly fragile and vulnerable state. He will not be able to enter public places, such as grocery stores or schools. For any doctor visits we must phone ahead and only enter office when ready for evaluation. We will have a nurse on call for any communications and must report vitals daily. We have to significantly limit visitors, especially children due to potential for germs being passed to him. Most importantly, we have to learn a multitude of processes and evaluations to perform to ensure we are well versed in daily assessment of Hudson. If for any reason anything looks significantly off vs baseline, we must be prepared to call 911 due to his heart condition. It has been a lot to take in and we often have become overwhelmed with the responsibility ahead. However, we know that it is our time to step up in order to provide our son the opportunity to experience the next phase of his life. We will need even more support and prayers to make the journey successful but truly believe we can achieve as Hudson is one tough son-of-a-gun. As Grandpa Ralph often preached, must be "Rough, tough and ready." We believe we are and so is our son. FIGHT ON HUDSON!
Below are pictures from the past two days which includes capturing the first time Hudson met Uncle Trevor!
Special thanks to nurses Steve and Kim for their tremendous care during Hudson's hurdles...you made it easy to go through!