1 Month Old!

Yesterday, Rowan turned one month old and it's been a crazy couple of days here at Children's Mercy.

Wednesday was a bit of a rough day.  We accidentally slept in Wednesday morning and when we got to the hospital at 9:30, the doctors had already rounded.  The one day that we weren't here before 9 they rounded on Rowan first... most days we have to wait around until 10:30 or 11 before they come to talk about him.  Anyway, the nurse said that there weren't any changes being made for his plan of care for the day.  Around 11:30, the nurse gave Rowan a dose of morphine because his heart rate was high and his blood pressure was a little high as well.  All they told us was that they thought maybe he was in pain from being reintubated on Tuesday.  We weren't super comfortable with the decision to give Rowan the morphine, but didn't fight it.  The rest of the day, Rowan just wasn't himself.  Long after the morphine should have worn off, he was still very lethargic and just not himself.  He didn't wiggle around like normal and when we tried to hold his hand, he didn't grip it like he normally does.  John and I were pretty concerned.  Rowan's oxygen needs also increased throughout the day and he didn't have wet diapers like he normally does.

By early afternoon, the nurse practitioner suggested that he get another dose of morphine and this time we asked them to just try to reposition him.  When Rowan is upset or uncomfortable it is pretty easy to tell because he has a very expressive face (I wonder where he gets that from...) and he had been asleep all day and clearly not in any pain.  We didn't see a need for the morphine.  Because of his oxygen needs and the fact that he was not breathing off much CO2, they decided that it would be best to put Rowan back on the high frequency ventilator (the oscillator).  This was very unexpected and really had John and I worried.  The need for the oscillator combined with how he was acting just left us with an unsettled feeling.  The doctors didn't really seem to know what was going on and the unknown was worrisome.  They ordered more labs to check for infection and to see what else was possibly going on.  We stayed pretty late on Wednesday night and around 10:30 Rowan finally started wiggling around and opening his eyes a bit more.  This made us feel a little more comfortable and we finally left for the night around 11:45.  It was a long day.

Thursday, we got up a little earlier and were at the hospital before 8.  When we got here, Rowan was requiring 100% oxygen... not the way we wanted to start the day.  He did seem to be more active and was wiggling around quite a bit.  He had also pooped overnight and had a little bit of a wet diaper. They gave him a diuretic early in the morning to help relieve some of the fluid build up... he was starting to look really puffy Tuesday night. The doctors rounded pretty early.  They weren't real pleased with Rowan's high oxygen needs; however, his CO2 levels had decreased to a normal range with the oscillator.  They ordered an echocardiogram to check for the possibility of pulmonary hypertension and to check on his PDA.  They suspected he had pulmonary hypertension because of his high oxygen needs.  Our understanding with that is that the blood pressure in the lungs is higher than that of the rest of the body, so it doesn't allow as much blood to flow through the lungs therefore it doesn't oxygenate the blood as well.  This is what they thought had caused the high oxygen rates.  The lab results from Tuesday looked good.  His CRP was 1 and his CBC looked good.  His hemoglobin was a little low, so they ordered another blood transfusion... Rowan is apparently a vampire.  :-)

Later in the afternoon, we got the results from the echo. It showed that Rowan's PDA was still slightly open (the same as it had been), but he did show signs of pulmonary hypertension.  Treatment for this is to add nitric oxide to the gases that he is getting.  The nitric oxide opens up the blood vessels in the lungs and allows more oxygen to flow through. Within an hour, Rowan's oxygen needs were already decreasing, so the nitric oxide was doing its job.  Rowan also had a better urine output and was moving in the right direction.  By evening, Rowan was acting much more like himself.  He was moving around a lot and was awake a lot more.  He would look towards John and I's voices when we talked to him and he was gripping our finger a lot better.  He was also down to 74% oxygen.  We still don't know what was going on with him on Tuesday, but we're glad he seems to be over it!  It was quite the day for his one month birthday!

This morning, he is doing pretty good.  He is down to 64% oxygen and was sleeping comfortably when we got here.  We are still waiting for rounds.  They had to do a sterile procedure on our roommate this morning, so we are still waiting to get in to see Rowan and to talk to the doctors.  We do know that they did a chest and abdomen x-ray this morning and they are planning on doing a head ultrasound today (routine).  They will hopefully resume feedings today depending on how his x-ray looked this morning.  We will also ask when they think we can get transferred back to Stormont Vail.  We're hoping that we are done with bad days for a while and that we can get a good stretch of days where we progress in the right direction!