Thursday, July 3rd - Off The Vent & MRI Results

Hello everyone, we apologize for the late post. July 3rd was a very eventful day (both good and not so good) and Kathy and I needed some time to ourselves to process it all before sharing the news with friends and family. Due to this gap in time between experiencing it and writing it out we cannot recall every detail, but we will do our best.

We arrived early to make sure that we were here in time for rounds because if Kinley's morning chest x-ray looked good there was a pretty good chance that she would be extubated (remove her breathing tube and be off of ventilator support). Before rounds began Amber, the nurse practitioner, stopped by to see how Kinley was doing. During Amber's short visit she mentions that she has seen Kinley's morning x-ray and there is some air in her chest cavity. She is thinking that they will probably not extubate today and that they may have to consider putting a chest tube back in, but Dr. K will need to make the final decision. This news is pretty depressing because we were really hoping that Kinley would be able to come off of her ventilator today and also because putting in a chest tube means that Kinley will need to be cut again.

During rounds with Dr. K we receive news that is a bit different from earlier. Dr. K is happy with Kinley's chest x-ray and he is glad that her chest cavity is filling with air instead of fluid. This means that Kinley will not need to have a chest tube put back in, but more importantly, Dr. K puts in orders to have Kinley's breathing tube removed. In place of Kinley's breathing tube and ventilator support she will be given a nasal cannula. A nasal cannula is a tube with two short spouts that will blow oxygen into Kinley's nose, but before Kinley's breathing tube can be removed they want to make sure to have some epinephrine on hand. Epinephrine is used to help decrease swelling and the reason why they want it for Kinley is because she has had a breathing tube in her whole life and it is likely that her throat will be irritated and swell when the tube is removed. To finish up rounds Dr. K decides to decrease Kinley's versed drip by 10%. He also has the final results of Kinley's MRI, but will stop back by after his rounds are completed to talk with us and show us the images.

The time has arrived for Kinley to have her breathing tube removed. The nasal cannula is set up and placed on Kinley's face. It will deliver 100% oxygen at 4 liters per minute. This does not mean that Kinley will be receiving 100% oxygen because when she takes a breath the 100% going through her nose will mix with the 21% (room air oxygen) coming through her mouth. Brecklyn (Kinley's day nurse) and a respiratory therapist prepare to remove Kinley's breathing tube. It comes out pretty easily considering how hard it is to have a breathing tube put in. Kinley is pretty upset about having her breathing tube pulled out and she is trying to scream. Her screams are very faint and raspy due to her vocal chords being "beat up" by constant contact with her breathing tube. We are all watching to see how well Kinley can keep up her blood oxygen saturation. Unfortunately her blood oxygen saturation is steadily dropping so Dr. K decides to give Kinley the epinephrine they have on hand. The respiratory therapist hooks up the epinephrine to a gas mask and holds it above Kinley's face so she can inhale it. Neither Kathy nor I knew that epinephrine could be delivered as an aerosol and inhaled, but now we know. Kinley's drop in blood oxygen saturation begins to slow and soon it is going back up. Dr. K leaves orders with the respiratory therapist to begin IPPB treatments. IPPB treatments are where they "bag" Kinley and force her to take deeper breaths which will help her break up and move any secretions in her lungs. Dr. K also leaves orders with Brecklyn to try and keep Kinley's blood oxygen saturation at 99% or higher.

Once Kinley is stable with the nasal cannula, Dr. K takes us over to the computers outside of the ECMO room (where Kinley began her journey here at Children's Mercy) to discuss Kinley's head MRI results. There have been many moments in Kinley's life so far that have caused a great deal of worry and concern for Kathy and I. And this moment was no different. In fact, it was the worst moment so far. Dr. K explained to us that Kinley's brain is underdeveloped, most likely from periods of time where her brain did not receive enough blood or oxygen. He points out a few areas where there should be more brain tissue and less fluid. Since Kinely is so early in her life and the fact that the brain is such a complex organ, it is absolutely impossible to know how this will affect her later in life. It could range anywhere from nothing noticeable to those around her, to learning disabilities, to loss of motor skills and anything in between. To determine the final affects of this underdevelopment Kinley will require many follow up visits at Children's Mercy so they can track her progress, both mentally and physically. Along with the underdevelopment there are also a few blood clots in her brain, most likely from her 21 days on ECMO, but Dr. K does not feel that they are of much concern and he says that they will disappear once those areas are healed. As you can probably imagine this news was very hard to hear, and even harder to talk about to anyone outside of Kathy and I. (This is the reason this news has taken so long for us to post. Kathy and I needed 24 hours, and a follow up conversation with Dr. K, before we were comfortable telling others.)

Kathy and I spent the remainder of the day with Kinley, handling the earlier MRI news in our own separate ways. Kathy held Kinley while I sat quietly, withdrawn in a haze of depression. I knew that all of this was a possibility with CDH and ECMO, but it still hits you like a ton of bricks when they say it is happening to your child. Your one and only baby girl. She has already gone through more in her 39 days on Earth than I have in my entire life and it is just difficult to imagine that her life will continue to have such huge obstacles. I hate to do this and I don't mean to sound like I am complaining because I know, especially from spending time here at Children's Mercy NICU, that there are many families out there in worse places than us. I, just like any other parent, simply want the best for my child and it hurts to feel so helpless. Please don't get me wrong, Kathy and I have not given up. We are keeping hope alive that Kinley will come through this unscathed and we will do everything within our power to make sure that she succeeds in all of her future endeavors.

Kinley has had a big day and is drained physically, especially from being extubated and her first IPPB treatment. She absolutely hated her IPPB treatment. We, on the other hand, are emotionally drained from the excitement of having Kinley extubated and the results from her head MRI. By the time we leave, Kinley's night nurse George (short for Georgianna) is there to care for Kinley and the oxygen coming through Kinley's nasal cannula is down to 40%. At least we can rest easy knowing that George is caring for Kinley tonight.