During our time here in the CICU, Matthew has developed quite the reputation for doing things in his own time and on his own terms. The doctors and nurses here have learned that Matthew will let them know when he is ready to take the next step, and in turn they have to take it very slow when it comes to making any changes.
Since his last surgery over two weeks ago, the goal has been to get him back up to his daily goal, in regards to calorie intake, in order for him to gain weight. Prior to the Norwood procedure, Matthew had been getting bottles of breast milk, however because of the issues with his vocal cord, he has been unable to return to bottle feeding and subsequently has been restricted in the volume of fluid that he is able to take through the G-tube.
In order for Matthew to continue to meet his calorie demands, he needed to have supplementation with formula. Unfortunately after a few days, blood was found in one of his stools. Another thing we have learned throughout this process, is that the doctors have to treat everything like it is the worst case scenario as a precaution. So in this instance, the worst case was that Matthew was developing restricted blood flow to his stomach and intestines which was causing the tissues to die off and bleed. Babies with heart defects like Matthew are more at risk for something like this because of their lower oxygen saturation levels.
Because of this concern, they had to stop his feeds for three days so they could rule out this scenario. GI specialists were consulted and fortunately the tests came back negative. Also, he didn’t develop any other symptoms, so all they could come up with is that Matthew potentially has a milk protein allergy from the formula. In order to determine this, they switched him to formula with milk proteins in a form that is already broken down. They wanted to see how he would tolerate this change, but did not get much of a chance before Matthew decided to put a hold on it.
This past Friday, after about two days on this new formula, Matthew developed a sudden fever reaching 104 degrees as well as an extremely elevated heart rate. In a very short time, Matthew went from looking like his normal self to looking VERY ill and listless. It was explained to us that babies with HLHS don’t tolerate fevers very well and because their heart has to work much harder, it can be life threatening.
It was also suspected that Matthew likely had an infection and the worst case scenario was that he developed sepsis and his body was going into shock. Fortunately, the system they have in place here for emergencies is top notch and they noticed the change in his vital signs immediately. As Brian explains it, the entire team worked as if they were a pit crew working on a race car; with every member having a specific role and seamlessly preparing equipment at high speeds without running into each other. Within minutes they were prepared for anything and everything.
Matthew was started on antibiotics right away and many tests were done to determine the type and potential severity of the infection. Within a few hours of being on the antibiotics, Matthew’s fever finally broke and fell below 100 degrees. All I can say is that it was easily the scariest situation we have seen with Matthew and we have seen him go through A LOT.
It has now been three days and he has been slowly recovering from what they think is a bacterial infection from his PICC line (a permanent “IV” that provides his much needed heart medicine). The doctors feel that Matthew should recover fully from this, but it will take a little more time to get him back to where he was before the infection. Over the next couple of days, they will continue to test his blood to make sure it has been completely resolved.
Today Matthew was finally able to start feeding again via his G-tube, so the new goal is for him to tolerate the new formula and begin to gain weight without any interruptions.
Thank you to all the clerks, nurses, doctors and specialists (some of whom rushed back to the hospital after their shifts had already ended) who helped save Matthew’s life on Friday. Matthew has been doing his part to say thank you by smiling and winking at everyone that comes by to check on him.