Monday, February 16, 2009
Handsome's procedures at Children's Hospital started at 2pm on Thursday. He wanted nothing to do with the hospital gown, so he went back to the operating room holding his Ted and wearing nothing except a pull-up. He looked adorable, of course! Evidently they clothed him once he was under anesthesia, because he came back to me wearing a gown.
I went out to a family conference room and anxiously waited for the first doctor to come out. my husband was at home with our five year old, so I was by myself. It took awhile, but the first doctor came out and told me he was done with the bronchoscopy and laryngoscopy and everything looked perfect--no clefts anywhere!! Woohoo!! This was the news I was expecting, but it still was good to hear. :) Then he gave me color glossy photographs of Handsome's vocal cords. Pretty neat!
I waited for awhile longer before the next doctor came out. This time it was the GI doctor. Handsome's endoscopy looked GREAT and so did his tummy--no ulcers, no twists in the duodenum. And, his tummy showed no visible signs (ie irritation, redness, etc) of food allergies. He took biopsies as well and we'll get those results later. Aaaaand, he gave me color glossy pictures too! Pictures of stomach acid (bubbles!), tummy, esophagus...all looking nice and healthy.
After that Handsome was off to the MRI (I didn't see him between any of these procedures and he was under anesthesia for everything.) Finally I found out what his hospital room would be, so I headed there to wait for him.
After his MRI, his resTech probe was placed before he woke up from the anesthesia. This is a new kind of probe that Children's has just started using. It was threaded through his nose and into the back of his mouth (most ph probes go way farther down.) The point of this probe was to see how often he refluxed so high up that he risked aspirating stomach acid.
While I was waiting for him, someone came from the GI lab to give me instructions on the probe. I had a little (palm size) computer to push buttons on every time he coughed, ate, sat down, etc. Plus a log to fill out that documented everything he did for the next 24 hours.
At about 4:30pm, I heard Handsome crying down the hall--turns out I could hear him while he was still in the elevator. My boy is LOUD! He was still groggy and was very unhappy. A nurse brought him down the hall in a wheeled crib and he was one upset baby. He was most upset that both his arms were restrained so that he couldn't bend them and yank out the probe.
He screamed for the next 1.5 hours or so...it was pretty miserable. At one point he managed to rip off one of his restraints--that shocked the nurses! He also kept clawing at the IV ports that still were in his hand. I was so nervous that he was going to rip those out!! He screamed even louder and kicked and flailed when the nurse tried to take his blood pressure and listen to his heart--he usually LOVES that kind of stuff, but he obviously was scared of all procedures at this point. Poor baby.
Finally I got him semi-calmed down and was able to take him to the playroom and distract him for a little while. Poor baby still was wobbly though and he really couldn't play with anything because he couldn't bend his arms at all. :(
(You can see one of his restraints sticking out from his gown in this picture...he could only swipe at the toys...not very fun!) We went back to the room and I petitioned the nurse (again!) to get permission to remove the IV ports from his hand--I knew they wouldn't be needed. She was really reluctant, but finally called the GI residents who were on call. They came fairly quickly and were really nice. Luckily they agreed that the IV port should come out.
The nurse took Handsome's left arm restraint off to get the IV port out (the restraints went from his arm pits all the way down past his knuckles.) He was SO much happier with the one restraint off, so I had her leave it off so that he could feed himself. Plus the probe was taped onto his right cheek, so it was harder for him to reach anyhow.
(Here he is with just one arm board on--he was much happier like this!) He was a lot better after that. The only problem was that he wanted NOTHING to do with hospital food. He spent the next 24 hours eating cheerios, applesauce, and animal crackers. Oh and he consented to eat a banana. He would only drink water. And he hardly wanted any food at all--his eating was NOTHING like it is at home. NOTHING at all like it. :( So frustrating. I don't think he even refluxed once...probably because he was eating bland food and just picking at stuff. This is my child who refluxes all.the.freaking.time at home. Soooo frustrating!!
Anyhow, my mom came to see him in the evening and we went for a walk around the hospital. I let him stay up late in the hope that it would make him more tired (it didn't!) and then we crawled into bed together. I spent the night watching him because I was scared he would accidentally pull the probe out. Any time his free hand wandered near his face, I moved it down. It was a long exhausting night. Every time the nurses came in, they were amazed I was awake. I was soooooo tired...but he kept that probe in!
In the morning we received the wonderful news that his MRI was clear!! No more worrying about his brain pushing on his spinal column and the nerves in that area! Phew!!! This was FANTASTIC news!
Handsome was doing a good job not touching the probe, so in the morning I took the second restraint off and he was a lot happier. Handsome and I spent more time exploring the hospital, playing in the playroom, and playing outside in the play-yard. He also spent a lot of time playing his Leapster, which he loved! At home I ration his Leapster time pretty strictly.
We had fun together and he did not want to leave the hospital! He told me he wanted Mama-Handsome time all the time and cried when I told him that we had to leave the hospital.
The probe was taped onto his cheek REALLY securely. It was plastered on from just below his eye, down to his chin and from the side of his nose, almost back to his ear. They were really worried he'd yank it out! Anyhow, it was miserable for him to have all that sticky stuff yanked off his face and it didn't help that his eczema was acting up--he ended up with bloody patches on his face. :( Poor baby.
24 hours after we entered the hospital, we were cleared to leave...my little guy was so sad--he loves the hospital now! I'm hoping he was groggy enough when he first arrived in his hospital room that he doesn't remember those miserable first couple of hours.
We go back again in a week or two (I need to schedule the appointment) for the results of the probe and the biopsies--but I doubt anything showed results. I'm so frustrated by the probe because I know the results will be skewed by his lack of eating and the bland foods that he did ingest. We've been home for a few days now and he's back to his regular refluxing...SO FRUSTRATING!!! Don't get me wrong--I'm thrilled with most of the test results...just upset that the one thing that we KNOW is a problem is giving us a skewed result.