A really long story

When Mark got sick right before Christmas last year, he ended up too sick for ear surgery on Dec 26th. I didn’t realize that was the least of the trouble we’d have with his ear surgery. We were scheduled for surgery February 4th. On Thursday, January 30th, I got a call from the hospital about pre-registering. One thing led to another and by evening we were in trouble. The OR claimed they can’t proceed with the surgery without a release from a cardiologist. The pediatric cardiologists are booked out three months-and that’s if you have an “urgent” problem. I problem solved all night, finally deciding my best chance of success was to get Dr. Odell (primary care) or Dr. Blotter (ent-surgeon) to talk an anesthesiologist into ignoring protocol. By mid afternoon on Friday, Dr. Odell’s office had confirmed that Dr. Palfreyman would do the anesthesia IF Dr. Odell saw Mark to give him clearance before the 6 am Monday morning surgery. That meant I had two hours to get Mark out of school and to the Doctor’s office. When Dave & I left for our date, I turned Mark over to the nurse with instructions NOT to let him get a fever. If we could make it until Monday morning, Mark could have the surgery.
Our first stop on our date was the hospital. Earlier that afternoon my sister had her baby. We stopped by the new Women’s Center, just to take a peek at him. They hide the babies in the new center, but they let us into her room where we got to hold little Kasey. What a fun reason to visit the hospital.
Monday morning came early, but once we arrived at the hospital, we had to wait forever! A young child had inhaled peanuts, so Dr. Blotter was in emergency surgery for a couple of hours. Finally after Mark’s surgery, we took him home with a “dressing on his head.” He was alert, but drifted in and out of sleep the rest of the day. By the next morning he just wanted that “dressing” off his head and he wouldn’t quit scratching at his face. We put his knee immobilizers on his arms so he could not get at his ear or face. He still rubbed his head against the soft fabric of the immobilizer for so long he rubbed a spot on his face above his eyebrow completely raw—then kept rubbing as it bled. Apparently as the Loritab wears off, it makes you itch. Over the next couple of days I spent a lot of time holding and rocking him.
Wednesday morning we went to see the urologist. A consultation recommended by Dr. Odell. I decided mid-morning when Marky was home anyway would work great. At a follow up appointment on Monday, the 11th, Dr. Blotter released him to return to school on Thursday. By Wednesday night, his incision was getting red. Thursday morning, the 14th, the nurse said his incision appeared to be coming apart. I took him back to see Dr. Bennion. (Dr. Blotter was out of town). While Mark sat upright in my lap, Dr. Bennion removed the bandaid/dressing and peeled Mark’s ear right off his head. Sure enough, the dissolving stitches had dissolved before his body had healed.*** It was as gross as it sounds. I turned away and Dr. Blotter’s daughter who was “job shadowing” Dr. Bennion joined Natalie waiting out in the hall. Dr. Bennion put in some sutures, but was concerned about infection. He put him on a couple of fairly serious antibiotics and sent us home with instructions to come back if it looked worse. It did. We went back to the doctors’ office again on Friday (15th) for him to “pack” the wound. Back again on Saturday (16th) to re-“pack.” When we showed up on Sunday (17th) morning, he sent us over to the hospital. Mark’s fevers were too high and the antibiotics didn’t seem to be fixing the problem. When Mark gets a fever, his stomach stops working, which means he is throwing up and getting dehydrated.
Once we were settled on the pediatrics floor, Dr. Armstrong, the pediatrician on call, ran the usual tests and started serious IV antibiotics. Monday (18th) was Presidents’ Day. With the antibiotics, Mark’s fever was down and his fluid levels were back up. Dr. Blotter stopped by to change the packing. By Tuesday morning he was tolerating small slow feedings. With all the RSV in the hospital, Dr. Odell wanted him to go home before he got sick, but he needed at least a week more of the IV antibiotics. I’ve learned to do a lot of things, but taking care of/starting IVs is NOT one of them. Because of the destructive nature of the antibiotics and the extended length of time he would be getting them, a picc line would be best—and I could be trained to take care of it at home. So we headed to the Emergency Room for the picc line to be put in.
A picc line is an IV that goes in near your elbow, threaded through your veins up and ending right above your heart. I’m not fond of watching Mark get poked, so I went to the cafeteria. They still weren’t done when I returned. To determine if they are in the right place, they draw back blood and run a test—the amount of oxygen tells them if they are in an OK place, but they kept getting funny results. After an hour, they decided a CT scan would be necessary to determine if it was in the right place. Mark had been lying still on his back sedated during this procedure and he continued to sleep through the move. I sat back in the little technician’s booth while they did the CT scan, watching and listening. The picc nurses still couldn’t find the tip of the line. They had to call in Dr. Bitwinski, the radiologist. He was furious. Not noticing me in the background, he banged his finger on the screen as he shouted, “You can’t find it because you’ve got it clear down here in the (bottom chamber of the heart)!” So they pulled it back “a ways” and sewed it in place. We got loaded up and went home on Tuesday (19th).
*****
Unfortunately two hours on his back not moving-no coughing, no suctioning-was too much for Marky’s lungs. By noon the next afternoon we were back in the doctor’s office. This time Dr. Clarke—Dr. Odell had the day off. He order an X-ray by Dr. Anderson, then sent us to the Emergency Room. Instead of the picc line going down to just above his heart, it was up into his head. In the Emergency room, Dr. Armstrong ordered another X-ray—this time of his whole chest. Dr. Job confirmed that Marky had pneumonia—in addition to whatever the antibiotics were fighting. We checked back into the hospital after being home for less than 24 hours.
Around this time (Wednesday the 20th) we learned that in addition to the pneumonia, Marky had MRSA. (Not really an infection, but rather a class of bacteria resistant to many antibiotics—meaning we needed the picc line and the “big guns” antibiotics. Unfortunately, Marky’s kidneys were not handling the stress very well. He was swelling up like a balloon. After some albumin and lasix, on Friday the 22nd we took Mark home again. This time on oxygen for the pneumonia and a couple of IV antibiotics. Funny thing: The nurses who take care of him at night are LPN’s. They are not “qualified” to administer IV drugs. However, me, the mom with NO nursing training, AM qualified. That meant that I had to give Marky’s meds at least once overnight—start it, sleep for an hour, and take it off. It’s not something you can do half asleep and I was really getting tired of Marky being sick.
By Wednesday the 27th Marky returned to school. He could’ve gone on the 25th, but while he was out, the school fired his nurse and hired a new one, who wasn’t available until the 27th. He was still on oxygen and the IV meds, but happy to be getting back to normal. All told he attended school four days in February.
He kind of plateaued for the next week. Not making much improvement, but not getting worse either. Some mornings he would wake up with a puffy face. His kidneys were worrying Dave and I, so we took our puffy little boy to Primary Children’s Emergency Room on March 6th. Not an emergency, but the only way to get a kidney consult is to go to the kidney doctors resident hospital. Dr. Wood was mildly concerned about the puffiness-worried that the picc line was causing a problem, she ordered a sonogram of his arm to look for blood clots. Dr. Prince found nothing remarkable. Marky solved the problem by filling THREE diapers while we were in the office. By the time we left he wasn’t puffy at all. But the visit resulted in an appointment with the nephrology department head two weeks later.
By the next day (Friday Feb 6th), I told Dr. Blotter’s office staff that I was pulling the IV. In theory he still needed three more days of antibiotics, but his little body had had enough. His arm was warm above the IV and the puffiness was back. We pulled it that night. By Monday he was back to schoo-no oxygen-back to normal.
***Eventually we learned a few things about Marky’s kidneys. We already knew they spill protein and according to his last kidney doctor nothing could be done about it. Now we know what that means—(1) proteins are how the body heals and grows. Marky’s ear did not heal before the stitches dissolved because of the low protein in his blood. At his “other ear” surgery, his doctors used slower-dissolving stitches to solve this problem; (2) the body stores immunity information in proteins—because he “pees it off” his body doesn’t remember it had this cold already—which is why he gets sick over and over and over; (3)Precautions need to be taken when Mark is dehydrated. Too much of the wrong kind of fluid sends him off balance the other way. We now have a protocol of what to do—and it’s worked the handful of times we’ve had to use it; (4)it is fixable. Dr. Nelson put Mark on a couple of drugs that over the last year have almost stopped the protein spillage. He’s happier, healthier, and growing well.
Marky’s second ear surgery in August didn’t go as well. Due to vein anomalies they couldn’t do the canal wall down part of the surgery. It still took him several weeks to get better. And although it wasn’t as scary-we did go to the ER 4 times for a new IV. The MRSA flared up again, but I refused to have a picc line put in, so near the end of his round of IV meds, we had to get a replacement IV every other day.