Saturday I needed a break from the hospital so I took Hudson to the zoo. It's only about 5 minutes away from the childrens hospital, and it was nice to have a few minutes to snuggle with my sweet baby boy and process everything that was going on. I was now sleeping with Roman every night to hold him so that he wouldn't roll in his sleep which meant that I wasn't getting much sleep (Roman is not a very still sleeper, I was constantly being hit or he was moving and I would have to make sure that all the wires and tubes were okay.)
Saturday night they did a blood test to make sure that vancromycin was clearing Roman's system. Because of the decreased kidney function the levels were extremely high in his body still so they had to skip his dose that night, and again the next morning. The good news, in that time they were able to isolate the strain of infection and what antibiotics would work to fight it. The bad news was that there were only 3 options. The Vancromycin, another antibiotic that was also processed through his kidneys or a sulfa drug that he may have been allergic to. We decided at that point that the safest route would be to try the sulfa drug and watch him closely for allergic reaction. Thankfully he did not react to the septra (sulfa drug) and he was able to take that to help with the infection. On Sunday the doctors wanted to be more aggressive about clearing Roman's bowels, by this point he had been on a high dose of Miralax and clear liquids only for 4 days but they thought there was something stuck high up. Roman's nurse, Lacey wasn't convinced there was still anything left in him so when the doctors ordered an enema on top of all the other laxatives she basically said "prove it!" She said if they did an x-ray and there was still a blockage she would happily do it, but she didn't think there was anything left in him and she didn't want to traumatize him further. So they decided to wait until Monday for the enema and ordered an x-ray for Monday morning.
Monday afternoon we were given good news, Roman's bowels were EMPTY, the infection was under control enough they were able to do the test, and they felt that his kidneys were finally able to process the dye. So they scheduled the VCUG test for Tuesday...sometime. Also that night Roman's birth mom got here to see him. She was supposed to get in that afternoon but she missed her flight, so they (Mommy Katie and her adorable baby, Betsy) didn't get here until about 9:00 that night, she stopped by the hospital that night to say hello then she spent most of the next day with us at the hospital.
Thankfully they got him in for the VCUG fairly early in the morning. Roman is a very private person and this hospitalization was very hard for him because there were so many people invading his privacy. We went in for the test and they were able to use the catheter he already had to inject the dye into his bladder then they had to remove the catheter then they like to take pictures of the urine draining out. The problem is, who wants to pee in front of an audience of 5 people? The tech kept saying "It's okay, your mom will catch it, we aren't watching. After trying for about 15 minutes they finally just took a series of x-rays then sent him to the bathroom then took several more. The radiology technician told me she couldn't diagnose but she didn't see the valves (later found out she meant the ureters) leaking at all.
They were told to wait and have the urologist re-catheterize him because it was so traumatic the previous time so Roman was able to go almost the entire day without the catheter. He was back to his usual crazy, out of control, into everything self. It was so good to see him back to being silly and into everything. The Child life specialist, Odessa came in that day and let Roman paint his window, she found him a scooter that he rode all over the hospital, he went and played in the playroom with Odessa. We were all laughing at Roman and his silly self. Then the urologist came in to talk to us about the results from the VCUG and to replace the catheter.
The VCUG showed that there was a lot of damage to his bladder, it should be smooth and soft, his was rough and rigid. They also could say that the problem was the posterior urethral valves. It was a problem from birth that had been missed and had just gotten worse over time to the point that it was not draining at all. They scheduled Roman for surgery the next day and had to talk to me about all the possible risks involved with the surgery and about the problems he may/will have because of the damage to his kidneys and bladder. It was all so hard to hear then to make matters worse, they had to put the catheter back in and I literally watched Roman go from silly, crazy to crest-fallen and sullen. The first thing he said after the catheter was back in was "I can't ride my scooter anymore." And he started to cry. The urologist also told me that Roman needed to be on a renal diet, but he was okay to have dinner that night. I called down to room service to order his dinner, he REALLY wanted some Mac and Cheese. About 2 minutes after I ordered the kitchen called back and told me they were sorry but they couldn't get him mac and cheese, it was not part of his diet. At that point I lost it. Thankfully the kitchen worked some magic, he can have egg noodles and low sodium cheese and butter so they made him his own version of Mac and Cheese, which he loved.
As soon as I got the food arranged I excused myself and went out to the patio and cried. I cried because my crazy boy was gone again. I cried because he couldn't have the Mac and Cheese he wanted so badly. I cried because he would never be able to eat school lunch. His whole life was different now. It was like everything hit me at once and I was so sad for my sweet boy.
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