Yesterday was ridiculously long. I woke up about 6:30 to prepare everything for Kal's visit to the clinic. He was scheduled to get a 4-hour long infusion of IVIG to help boost his immune system, in order to help him fight off his decently diagnosed parainfluenza (flu) and RSV. Those diagnoses on Wednesday came as a shock, as Kal wasn't acting too out of the ordinary, other that throwing up 4 times that day and having a slight cough. On Thursday, though, I knew he was starting to not do as well. He was very clingy, breathing about 75 times per minute, and just looked sad and "sicky" in his face. I knew the infections must have been starting to make their effect.
Sitting in the back seat with Kal while Jonald drove to the clinic was unnerving. Kal was just staring out the window, arms slumped down to his side, and not making a peep. Usually, he would be kicking, moving his arms happily around, and jabbering on and on to us. On our way, I saw Kal slowly close his eyes with no tired fuss at all. My heart sank. Poor baby boy... He fell asleep so fast, I even put my hand on his chest to make sure he was still breathing. Luckily, he was, but hardly flinched at my touch. This was certainly not my sweet, happy, smiley boy that I know. I had a feeling once the doctors saw him, they would choose to admit him. After dropping Jonald off at work, I was really scared he would stop breathing in the backseat. I told him, "Stay with me, Kal. Okay, buddy?" I tried talking to him while driving- no response. I tried singing- still, no response. Every now and then, I would hear a cough that would bring me a sigh of relief to know he was at least breathing.
We showed up to the clinic at 9:10 for our 9:30 appointment. Once the tech got his vitals, we were sent to a room and thought the process would get started right away. After being seen by the Nurse Practitioner (NP) and telling her about how Kal was really out of it that morning as well as he had already threw up 3 times already, she decided it would be best if she had a look at his lungs, via chest x-ray. She also wanted to start him on some oxygen, since his oxygen saturation levels were hovering between 86-89. We had to wait a while to get his labs drawn, and then headed to the packed Imaging Department downstairs. After the x-ray, we headed back upstairs to the clinic again. The NP and the doctor looked at his x-ray and said, thankfully, it didn't look too concerning. No pneumonia. It just looked like he had a viral infection, but was not affecting his breathing too bad. Phew!
Finally, after 12, Kal had his IVIG infusion started. Kal was very tired, but only napped for about 30 minutes at a time. He threw up twice more during that time. Thankfully, he still managed to keep his temperature in the 99s, so he didn't have an official fever. He was breathing about 60-64 times a minute, which is still pretty high. Despite having oxygen, he was still having a hard time keeping his oxygen levels up enough, though. During the infusion, the NP decided it was best to admit Kal back into the Immunocompromised Unit of the hospital. After the infusion completed, we still had to wait in the clinic for quite some time until Kal's room was ready. Because Kal has both RSV and the flu, he needs to be in a special room in the unit for the breathing treatments he needs to receive. Finally, around 6 p.m. we were able to go to Kal's room, but had to then wait for a crib to be brought in his room. After that, I rocked him to sleep, set him in the crib, and headed home to pack some things and grab something to eat. I hadn't eaten since about 8:30 that morning.
Upon returning to the hospital, saying goodbye to Kayelee in the car was especially sad. She kept asking why I had to go be with Kal and telling me how much she loved me and wanted me to be there with her. Ugh. It tore my heart in pieces.
Kal's first breathing treatment was scheduled for 10 p.m. that night. The treatment will be 3 times a day for 5 days with ribavarin- a highly potent drug that is given as a mist mixed with oxygen. Each treatment consists of having albuterol as a pre-treatment, then a 2 hour treatment with the ribavarin, and then a 30 minute rest to let the particulates in the air settle. During the treatment, Kal needs to be in a big, plastic tent-like thing to prevent the potent mist from going everywhere in the room and to keep it closer to him. The respiratory therapists wanted him to wear the mask so he can get the highest concentration of the mist, but he was not having any of that. After trying to wrestle him, tape the mask to his face, etc., they decided that the best we could do is to have someone hold the mask close to his face for the entire 2 hours. Doing so would also require wearing a gown, gloves, and a special HEPA filter mask to be protected from the ribavarin. They finally started the treatment around 11 p.m., and the tech and I took turns holding the mask while watching "Full House" and "Fresh Prince of Bel Air." Haha, we know how to party! It was just really sad and hard for me to not be allowed to hold, console, and cuddle him during the treatment. Even though I could hold his hand, it was so sad that he has to sit in that strange tent all alone with a strange mask in front of his face for 2 1/2 hours. Poor bubba...
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| Kal's ribavarin tent getup |
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| It's so hard to not even be able to hold him during this time. :( |
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| My protective getup. Lastest fashion trend, don't you know?! Duhhh... |
Kal is doing okay today. His cough sounds worse, with more junk in it. His breathing is still fast, around 60 a minute. He still looks sleepy, but usually is playing quietly or cooing to himself in his crib. Thank you for all of your love, prayers, and encouraging words!
