Thursday, June 12th - New Treatment Plan

Note for the reader: You may want to find a comfortable chair to read this one. It was a pretty busy day. Sorry for not getting it posted sooner. I will tell Kinley to try and keep her days less eventful so mom and dad can keep the blog up to date.

We arrive around 8:00 am, right after the morning shift change, to find Sunny and Sarah watching over our baby girl. The morning is pretty uneventful as we wait for the doctors to do their rounds. As soon as they get to Kinley we will have a better idea of what her new treatment plan is.

It is 12:30 pm and the doctor's rounds still have not made it to Kinley's bedside. I am guessing that they are saving the best baby for last. Instead, we have different visitors. Sofia Miller and her parents have stopped by to say hello. Kathy and I step out for a few minutes to catch up with a family that was literally at the same baby station, with ECMO, around 3 months ago. Sofia is looking great and by what we have been reading on her blog (http://www.babymiller08.blogspot.com/) she is having a ball being at home with mom and dad. We are very very happy for the entire Miller family, to finally have their little girl home and doing so well.

Around 12:45 pm Dr. M stops by to discuss Kinley's new treatment plan since she did not respond well yesterday to trying to come off of ECMO. As of right now it looks like we will be working on a 4-step process to try and get Kinley off of ECMO and into surgery.

Step 1: A new pulmonary treatment to try and get Kinley's pneumonia mucus moving out of her airs sacs and towards her breathing tube, where it can be suctioned out. This new treatment is called IPV. The official name is far to hard to spell and type, but it works similar to the high frequency ventilator Kinley has been on in the past. It delivers the same volume of air as the conventional vent, but at a higher pressure and at very rapid intervals. It works by getting air behind the mucus and pushing it towards the main bronchi of the lungs. From there the lungs should take over and keep the mucus moving so Kinley can cough it up and then the nurses will suction it out. Dr. M is wanting to try the IPV treatment once and see how Kinley responds. Many babies dislike IPV treatment and tend to drop their sats (oxygen saturation), which means they have to stop the treatment. If Kinley can tolerate the IPV treatments, they will be done every 6 hours and each treatment will last 10 -20 minutes.

Step 2: Change out Kinley's ECMO machine. The artificial lung and circuits on ECMO machines tend to have a life span of two weeks before blood clots in the system become a concern. Today is Kinley's 14th day on ECMO and we know now that she will need to remain on ECMO through the weekend, at the very least. They will change out Kinley's ECMO machine today (after her IPV treatment) in a controlled environment rather than waiting for a clot to form in the system and having to change them out in an emergency setting. Switching out ECMO machines usually causes the baby to regress a day or two because it takes about that long to get all of the settings on the new machine to where the baby likes them.

Step 3: Try to lower the amount of air in Kinley's bowels. (This will not be attempted until Kinley is stable on her new ECMO machine.) Recent x-rays have shown that the bowels in Kinley's chest have a fair amount of air in them. This causes there to be more pressure on her heart and lungs. In order to lower the amounts of air in her bowels they will need to paralyze Kinley. This will stop Kinley from inhaling any more air into her stomach and it will also allow the doctors to be able to manipulate Kinley more and try to get the air moving out of her chest.

Step 4: Re-evaluate Kinley and decide whether to try and see if she can come off of ECMO or move forward with surgery while she is still on ECMO. Either way, we are looking to have Kinley's diaphragm repair surgery sometime next week.

Kinley's first IPV treatment begins at 1:15 pm. It lasted around 20 minutes. They were worried the IPV would agitate Kinley, but she loved every second of it. All of her numbers got better during the treatment. I guess we shouldn't have been that surprised since we know that Kinley prefers the high frequency ventilator over the conventional ventilator. Kinley was coughing during the IPV treatment, but that is to be expected and is a good thing because it means the mucus is moving.

At 1:40 pm we get the results back from Kinley's heart echo test this morning. Honestly, I had not even thought about her heart echo test. I assumed that they were going to cancel it once they knew that Kinley could not support herself off of ECMO. Her heart echo results show that the pressure in her right ventricle, and therefore her lungs, is still the same. So it looks like it wouldn't have mattered if Kinley could have supported herself off of ECMO because her pulmonary pressure is still too high.

A little before 3:00 pm Kinley gets a chest x-ray. The reason for the x-ray is because Kinley's sats (oxygen saturation) has not returned to normal since her IPV treatment. The chest x-ray shows that the mucus is less concentrated in the upper lobe of her right lung, but some of that mucus has moved into the areas of her lung that were clear before. Kathy and I had not thought about the mucus spreading throughout her lung, but overall it is a good thing because now it is less concentrated and Kinley should be able to move it easier. Also, the nurses will be suctioning Kinley more often now and rotating her on her bed to try and keep the mucus moving.

The moment that we have been most worried about since hearing the new treatment plan has arrived. At 3:45 pm they began the process of switching out ECMO machines. The entire process did not take very long, but it felt like an eternity for Kathy and I. The moment that really takes your breath away is when they clamp and cut (literally) the tubes that are transferring blood to and from your baby. Once the tubes are cut they must connect the set coming from Kinley to the new ECMO machine. There is obviously much more that goes into this process, but too much to put into writing. Just know that we feel that the switch went fairly smoothly and at the same time we hope we don't have to do it again.

After the ECMO machines had been switched it took quite a while for Kinley's numbers to normalize. Her BP was staying pretty high and her O2 saturation was on the low end of acceptable. Kinley ended up needing a few doses of BP medication to keep her BP down and her O2 saturation levels slowly came back.

Kinley's 2nd IPV treatment of the day was scheduled for 7:00 pm, but we weren't able to start until around 9:00 pm. For this IPV treatment we are adding an extra step to the process. The extra step will be to give Kinley a round of pulmazyme first, before her IPV treatment. Pulmazyme is a liquid that will be vaporized and connected to Kinley's ventilator. It will help to loosen the mucus in her lungs. She breathes in the entire dose (probably takes between 10 -15 minutes) before her IPV treatment begins. Once again, she loves her IPV treatment. She coughs a bit (which is good) and the nurses are able to suction a fair amount of mucus out. This time, after her IPV treatment is over, her sats return to normal much quicker than before.

Soon after the IPV treatment is over a chest x-ray is ordered to see how her right lung is looking. The x-ray shows that Kinley's right lung still has mucus spread throughout. Earlier today Dr. M told us not to expect drastic changes because the IPV treatments will most likely need a few days before we start to see real improvement. She also told us that they may discontinue the treatments if they begin to feel that they are counter productive. As of right now, Kathy and I feel that the IPV treatments are doing more good than harm and we hope that the doctors decide to continue them.