I wanted to include the word "fighting" in the title because that is exactly the way we have been feeling lately. We are fighting for Makinley! Fighting against Dr. Sanders push for blood pressure medication and fighting for our opinions. Yesterday and today have been very interesting to say the least.
We were informed yesterday that Makinley has been dealing with some high blood pressure. Her numbers are higher than what they like to see and therefore they wanted us to meet with a specialist who deals with pediatric patients who have kidney/high blood pressure issues. Andrew was coming up yesterday so we agreed to both meet with the doctor. Lets just say he came in with an agenda and was going to try and push that agenda to us. He wanted to run some more blood work, an ultrasound of her kidneys, an echo, and put her on medications right away. This was way more than Andrew and I were anticipating. We had just learned of her high blood pressure on Thursday morning and now on Thursday afternoon he was wanting to make some big steps. We told him that we always try to make educated decisions for Makinley and we wanted to do some more research on our own first. We told them they could do the kidney ultrasound and could do lab work with her normal blood work on Monday. We told him we did not want an echo done at this time and we were going to hold off on medications until the other results came back first.
He was not pleased with this decision. He tried to tell us that we needed to put Makinley on something right away. We went on to inform him that if there really was a NEED then we should have been informed sooner that she was even having high blood pressure. The doctors can continue to monitor her and if we see something change we can make a decision then.
So Andrew and I started to do research. We talked to nurses in the NICU asking them what is all involved in high blood pressure. We talked to friends who were nurses and we called Dr. Grossmann in Orange City for a second opinion. They all agreed that Makinley was on the high end of normal for high blood pressure. Her numbers were usually between 105 & 120. They also informed me that it is fairly common for premature babies to get high blood pressure after being in the NICU for so long. In addition - they told us to watch HOW her blood pressure was being taken. Makinley should be completely calm and at rest state when they try for a reading. They should be taking a reading from her arm and not her leg since her leg will usually give a higher reading. I took this advice and sure enough some nurses were doing it way different than other nurses. Sometimes it was her leg, other times it was right after she was mad from a diaper change, and sometimes it was done perfectly. Even more comical is when Makinley had nurses that we know she is comfortable with - it was always in the okay range. If she had new nurses that she was not familiar with - it was on the high side. So this made us want to monitor instead of act with medication even more so.
I went home with Andrew last night and re-packed my bags for the week. We plan to go back up first thing tomorrow to spend more time with Makinley. I called into the NICU floor to see how Makinley was doing today and was surprised with the information that was provided. First the nurse informed me that the ultrasound of Makinley's kidneys went fine. The left kidney is still slightly inflamed or dilated? but nothing to cause concern. Her kidney showed this dilation already at 20 weeks gestation inside my womb and it is good news that it has not changed. We will continue to monitor it every 3-6 months because eventually we want to see it go away. The nurse proceeded to tell me that the Echo went fine too. The Echo? We specifically told the specialist that he was NOT to proceed with the Echo until we gave further notice. Andrew and I were NOT happy. Needless to say, this specialist lost our respect and we were not going to be working with him anymore. Andrew voiced his opinion that we were sick of procedures being done whenever I was not present. I maybe leave Makinley for a day once every two weeks. This gives me time to re-pack a suitcase and do a few things at our own home before returning to Sioux Falls. There is no explanation why they waited until I was gone to move forward with the ECHO. Andrew received a phone call back from Dr. Stevens (Makinley's NICU doctor) apologizing for the miscommunication. Dr. Stevens said it was his fault and it shouldn't have happened. We like Dr. Stevens but Andrew said he could not take the blame. The specialist needs to take the blame and he needs to respect the parents and our wishes. And there is no need for him to apologize now since he has the results and he has the information he wants.
So, even though we were not supposed to have an Echo, the results were fine. Makinley has an extra vessel to her pulmonary artery but it is nothing concerning. This is pretty typical in babies but most babies don't have an echo to confirm it. She also has a valve that is still open. We will do a follow up Echo in approximately six months to make sure it has closed.
We are thankful that nothing serious was found in the ultrasound or the Echo but unfortunately this does not give us any answers. Our plan for now is to keep monitoring Makinley's blood pressure numbers and pray they take care of themselves. I really do not want to start her on blood pressure meds and then have to try and wean her off them later on.
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