Really Frustating and Concerning Situation

Madeleine was re-admitted to Children's Hospital yesterday after four days of us struggling at home with her oxygen saturation levels. Using the pulse oximeter (pulse ox) that we brought home with her last Friday, we began monitoring her blood oxygen levels this past Monday when she just didn't seem right to us. We consulted with our pediatrician as well as with the pulmonary folks at Children's DC and after Kirsten took Madeleine to the pulmonary clinic yesterday, they decided to admit her as they were concerned with her labile (highly fluctuating) oxygen saturation levels.

Our initial frustration focused on everyone's inability to explain why her saturation levels were so low and fluctuating. The doctors took two different chest X-Rays, checked her blood levels, her electrolytes, and a host of other issues. Finally, after exhausting most other potential causes, they ordered an echocardiagram to examine her heart in an effort to rule out one more possible cause. The doctors weren't overly concerned with the heart given the success of her previous surgery confirmed by follow-up echo cardiagrams while Madeleine was still in the NICU. Unfortunately, the echocardiagram unearthed some concerning information: it diagnosed pulmonary hypertension.

For those unaware of pulmonary hypertension-- a group that included Kirsten and I until about 3 hours ago-- this is a diagnosis that is made when the lungs have higher blood pressure than the rest of the body. In a healthy human, the lungs have slightly lower blood pressure than the rest of the body making it easy for the heart to send blue blood back to the lungs for re-oxygenation. Hypertension is dangerous because the higher pressure makes it more difficult for the heart to send blue blood to the lungs. We learned that there are two types of hypertension: primary and secondary. Secondary hypertension is more common and is the treatable form of hypertension and results when someone has significant trauma (pneumonia being the most common form of trauma) and/or infections that can cause a temporary increase in the lung's blood pressure. Given Madeleine's recent bouts with pneumonia, it is entirely possible that this is the form of hypertension that she has but since we did not have echocardiagrams performed during her previous three stays in the hospital, it makes it hard to determine if the hypertension has been caused by her bouts with pneumonia or if the hypertension is one of the primary causes. Primary hypertension is the less common form of hypertension that cannot be treated and is ultimately fatal. (For those from the medical profession that are reading this-- I know I'm oversimplifying the issue but this is how it was explained to us in the hospital.)

At this point, there is no way of knowing what type of hypertension we're faced with and the doctors must gather a bunch of data before we'll know anything certain. For right now, our focus is on treating her lungs and ideally eliminating the high pressure. The good news is that the treatment that was started when she was admitted on Thursday is largely the course of treatment that is recommended for hypertension. The best "drug" for treating hypertension is oxygen, so the doctors are going to keep Madeleine at a higher oxygen level (at least 2 liters) for the next three days. In addition, Madeleine was started on a round of IV steroids and this will continue through the weekend. There is no evidence of infection at this time but Madeleine will be closely monitored and if any is identified, they will start a round of IV antibiotics as well. After three days, Madeleine will undergo another echocardiagram (for those unaware, this is a non-evasise procedure that uses the exact same technology as an ultrasound used on pregnant women.) If the echocardiagram shows a decreased level of blood pressure-- this will be really good news as it will likely indicate that the high pressure is caused by the lung trauma and the treatment-- oxygen and medicine-- is helping to resolve the issue. If it doesn't show a decrease in pressure, this won't be terrible news but will likely indicate the need for additional medical intervention including some drugs that I know nothing about. The worst diagnosis-- primary/persistent hypertension-- will only be confirmed after all of these different forms of intervention have been exhausted.

Kirsten and I are obviously frustrated/scared/angry/worried and lots of other emotions that we were unaware existed just over 6 months ago. That being said, we're confident knowing that Madeleine has come through plenty of other difficult diagnoses and we're fully expecting her to clear this hurdle as well. We'll report back further information as it comes to us-- just wanted everyone to be aware of the issues we're faced with right now. Thanks for your support.

Brent and Kirsten