We arrived at the hospital just before noon in time for his next PO feed. We find out that Beau's oxygen saturation has been dropping all night and went as low as the teens. On my goodness - the lowest I've ever seen it was the 45% yesterday. For the first two hours we were there, he continually had de-sats back to back dropping well below the 50%. Some were almost continuous and others were a few minutes apart dropping as low as to 7. We've never seen Beau have such trouble breathing. It seemed that he was bearing down trying to poop and then he would stop breathing, then causing his o2 stats to drop. He was not self recovering most of the very low drops so nurses and the respiratory therapist had to come in and stimulate him. Their response to his monitors was a vast improvement from up in the Peds ward. We are thankful.
They did a chest/abdomen x-ray including a KUB to check the placement of his NG tube. They did a blood gas test to check his hemoglobin and hematocrit levels.
When results came back the doctor decided to take him off feeds until he seems more stable. They gave him an IV with fluids and Lasix to help eliminate any overload of fluids he may have as the x-ray showed pulmonary edema - "wet lungs". His hematocrit (41) and hemoglobin (13.6) levels came back good. They moved his NG tube 4cm farther down so it is closer to the duodenum, possibly to the pyloric sphincter; hopefully this will reduce reflux.
To add onto an already crummy day, the blood pressure cuff also gave him a blister on his foot and took a gauge out of his leg. Poor boy.
By 8pm he was calm and slept for about 3 hours. Starting at 7pm he began receiving continuous feed. Instead of 60mL over 30 minutes every three hours, he is going to get 60mL over 3 hour which will then begin his next feed, making it continuous. He is no longer on the IV fluids.
Around 10pm, Dr. Alderson came by to check on Beau and told us she believes with his being prone (one his tummy) and his stable stats, she believes he has obstructive apnea. She believes because of his large tongue, when he is on his tummy it falls back in his throat, blocking his breathing.
She also explained a little bit more about reflux to Andrew and I. A person has "sloshing" in the belly after they eat. Well, a person has reflux when the valve (gastroesophageal junction) between the stomach and the esophagus is loose allowing contents of the stomach back up into the esophagus. The medications Beau is receiving (prilosec and zantac) help reduce acid. The acid in the esophagus causes inflammation. He is now receiving the max dose he can have of both of these medications - they call this "therapy level".
Thank you for your prayers. We are lucky to have so many people lifting Beau up to the Great Physician. We continue to trust the Lord with Beau's little body and heart.
Sunday, November 3, 2013
I slept the night over at the hospital just incase Beau had any more episodes and sure enough, desats began again around midnight. By 2am they decided to start the same course as Saturday morning again. They took him off the continuous feed and inserted an IV. He got stuck about 8 different times before one of his veins properly cooperated! Poor guy now has a nice bruise on his left arm. The began Beau on IV fluids and kept him prone for the sake of reflux. They did another KUB/x-ray to check his abdomen and the lungs looked very clear - no more pulmonary edema. woohoo! He slept soundly for a few more hours until desats began again at 6am. Oh man... again? yes. :(
Around 8am, the doctor called for another x-ray/KUB and decided they needed to advance the NG tube another 3 centimeters to it is now in the duodenum. It is now called an ND tube. They re-started the continuous feeds again at 20mL each hour. They cannot do a bolus feed, meaning 60mL over the 30 minutes, anymore because of digestion difference in the duodenum.
They started Beau on another medication called Propranolol to increase heart fuction. It may also decrease his heart rate which is okay as long as it stays above 75bpm. The hope for the medication is to decrease muscle spasms of the muscle under the pulmonary valve. it will open the sub-pulmonary stenosis (narrowing) and lets more blood through toward the lungs without flooding them. This heart medication is commonly used for children who has Tetrology of Fallot (TOF) - one of the heart defects Beau has.
The rest of the afternoon went fairly smoothly and we both went home for the evening.
Monday, November 4, 2013
He had desats overnight into the high 40's and low 50's or higher. Most of the were self resolved within 20 seconds. These desats have not been connected to any drop in his heart rate or respirations. His weight today was 3035g = 6 pounds 11 ounces.
He was on an air cannula today for a few hours to try and eliminate brady-desat events. They took it off him during their evening rounds. Dr. Alderson did an echo and there were no changes.
He mostly slept all day until about 11pm when he decided to be wide awake!!
He had a little blood in his diaper which the doctors believed to be a fissure. They simply put on some ointment as it was so small. When I changed his diaper at midnight it was very discolored and I mentioned it to the nurse before heading home for the night.
Tuesday, November 5, 2013
I called at 5:30am to check on Beau and the senior resident, Dr. Colahan, told me some unexpected news. Beau had bloody mucous in his diaper (as opposed to bloody stool) at a diaper change early this morning. They took Beau off feeds and put him on IV fluids again. Unfortunately, after many sticks, they could only get his IV in his scalp. They believe he may be in the early stages of NEC (Necrotizing enterocolitis) which is destruction or death of tissue in the intestines, usually affects premature infants. Beau does not meet the diagnostic criteria but the bloody mucous is one side effect of NEC. Eek! They put him on antibiotics right away as a precaution and began to run blood work to check for bacteria and get an x-ray to check his belly. He has normal bowel gas patterns and the radiograph looked normal as well. The doctor also mentioned that he was having brief bradys and desats in the morning hours as well.
Dr. Carpenter called around 9:30 to ask permission to put a PICC line in Beau's arm. Yippee! This means he will have the small iv line (looks like a piece of stretchy yard) run from his arm to his heart. This will eliminate the constant sticks for an IV. His total parenteral nutrition TPN pack (starting at 4pm) will run through this line to give him all the nutrients and lips he needs since he's off the breast milk.
When I arrived at the hospital I ran into the pediatric cardiologist and she believes the events of the last 4 days are all feeding related. I talked with the PICU attending doctor and he went over some of the results with me. They will keep Beau on antibiotics for 48 hours and potentially do a full 7-day treatment course. Beau is at increased risk for NEC because the increased blood flow from his heart condition. The x-ray/KUB this morning showed no air in the bowel wall. A CBC test showed his white blood cell count was a little low and a CRP test that checks for inflammation resulted in a normal/high result. Though the doctor isn't sure that Beau has NEC, he decided to make a "soft call" and say he has "medical NEC" just so Beau is covered.
Beau continued to have brady-desat events this afternoon and was put back on his nasal cannula at 1L of room air around 5pm. Even though he has the picc line, they are keeping in his IV to use for antibiotics while it is still clean.
His hematocrit level is 37. This is just 0.1 point higher than last week when Beau had to get a blood transfusion. As of right now the doctor says all his stats are good so he sees no need right now to move toward another tranfusion.
An x-ray was done late in the evening to check the PICC line placement. When it was inserted earlier in the day it was pointing upward instead of toward the heart. The doctor's hoped that the line would loosen and grab hold of the blood to point inself naturally toward the heart. It did not do so, so one of the senior residents had to pull back the PICC line a centimeter.
Poor little guy has a scalp IV, a picc line in his arm, and a ND tube in his nose. :(
Continuing to pray for Beau, you and Andrew, and all the doctors and nurses caring for Beau.
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