April 22 - Infusion #8
We got over to the hospital and parked in the garage tunnel. We walked into the hospital and down to 3K to check in. We saw Nurse T while we were checking in. She wasn't feeling very good so was wearing a mask, and those kinda still freak Levi out a little, but he eventually figured out who it was and said hi. We got all checked in and walked out back. Nurse K was our nurse for the day and we got put in the jungle room, which is Levi's favorite.
It was time for vitals check, and that didn't go well. Levi was not wanting to sit still at all so they were not able to get a good blood pressure, and he didn't want to hold his finger out so that they could get a good O2 stat. But they eventually were able to get both.
We headed into the room for Levi's port to be accessed. We all were holding our breath a little in hopes that the port would work well after last weeks surgery.
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| Getting ready for the port access. |
And boy did it work well!!! The blood return was amazing! It didn't matter how Levi was sitting it just came out! Nurse K said that it was acting exactly how it should be, that the back of the port felt great when she put the needle in. All was good. Surgery number two was a huge success and so worth it!
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| See that blood return!! YAY! |
Levi's plasma was ready and Nurse A went down to get it. Dr. V stopped by and took a look at Levi. Everything was looking good. He was expecting this to be a nice short visit. Levi's CBC came back and his numbers were at 228, so a 40 point drop from the day before. We are now going to assume that the two labs are a 40 point difference and will be getting concerned when our lab work drops below 200 instead of below 150.
Levi ran around the halls a little waiting for the plasma to come up. The playroom is still closed for renovations so he was playing with the car and dolls in the hallway. He met a little girl who was riding around in her wagon. She was 3. She gave Levi a sticker that said "friends" on it! Levi's first gift from a girl! :) We picked out the movie to watch, Levi picked Planes.
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| Driving the car around the hospital. |
Finally Levi's plasma came up from the blood bank. We went into our room, got the movie started, and the plasma started. Jay and I decided that with a hopefully very short trip we were going to keep Levi awake as we should be done the infusion around 2pm and then he would sleep in the car on the way home. Jay headed down to the cafe to get lunch. Levi asked for a hot dog and cookie.
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| Infusion started! |
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| Cuddling with Piglet and Monkey while we waited for daddy to come back with lunch. |
Levi was very antsy from the minute the infusion started. Normally he doesn't get antsy until an hour or two in, so it was very strange. I set on the floor with him while he set in the black recliner and just kept trying to get him to settle down. We played with piglet and monkey, Nurse K brought him in a warm blanket to try to help him settle down. I figured he was just hungry and getting tired after the short nap the day before. Nurse K and Nurse A came in for the 15 minute vitals check. All was going well. His vitals looked great, so they upped the infusion pump to 100ml/hour. Things were chugging along now.
Levi continued to be very antsy, he was standing in the chair, spinning around, jumping, it was getting very hard to keep him and his line from getting tangled. I was trying every trick I knew for him to settle down. I got him to settle for a second and noticed that his face looked a little extra red. The next second he spun around in the chair again and his shirt lifted up a little bit and I saw a strange bump. I picked up his shirt and his back and stomach were covered in hives. And in the few seconds I watched I saw more and more coming! It was pretty scary. I picked Levi up, set him firmly in the chair, said "Do NOT move!!!" and ran out of the room down the hall to the nurses station. Nurse A was sitting at her computer and said "Is everything ok?", at the same second I saw Nurse K and I said "He has hives everywhere!!" Nurse K took off at a run to his room, I was right behind her, and Nurse A was right on our heals after stopping to grab and cut open the hyper sensitivity kit. I got in there and got over to the chair that Levi was sitting in. In the 30 seconds that I was gone the amount of hives had more the quadrupled for sure. He was covered in them from head to foot. He was half crying half screaming at this point, he couldn't wiggle as much as he wanted, you could clearly see that he was wanting out of his skin and he couldn't get out. I tried settling him down in front of him, and then climbed underneath him and held him still, and whispered in his ear. At this point Nurse K had unscrewed his plasma and was pushing saline through his line to clear it out as much as possible. More nurses showed up that I didn't know, and Dr. V showed up slightly out of breath, he had clearly been paged at some point and had come running. Everything happened so fast and there was so much going on around us, it was hard to keep everything straight. Dr. V ordered 14mg of Benadryl to be pushed through his port slowly, so Nurse K started that. Another nurse who I don't know was on stand by with an epi pen and Dr. V was continuously listening to his breathing to see if any wheezing started. He had his shirt lifted and his back was just continuing to get worse and worse the hives had all joined together and it was like giant hive that covered his entire back. As the Benadryl started to work through Levi's system he started to slow down his breathing and screaming. Then he started to get a little limp. Dr. V said "IV Benadryl will make him very very sleepy". And it sure did. Levi fell asleep on me, well really more like passed out on me. At this point his breathing regulated and the urgency slowed down. Dr. V stopped listening to him continuously, the nurse with the epi pen on the ready recapped it and put it back in the kit. Dr. V said that he would be back in a few minutes and left the room. Nurse K, Nurse A, and the other nurse helped prep the room for Levi to sleep in. They brought me another warm blanket, helped me recline the recliner, and they brought in a small dimmer lamp that they put in the corner of the room and turned off the big overhead light.
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| Levi passed out on Benadryl |
At this point Jay was coming back from getting lunch and was very confused why the nurses were coming out of our room and turning the lights off. Nurse K filled him in a little on what was going on and then he came in the room to see us.
A few minutes later Dr. V came back in and took another look at Levi. The hives had not completely gone away on his arms, they weren't coming any longer, but they weren't going away, so Dr. V ordered 2mg/kg of Prednisone (a steroid) to be pushed through his line as well as Famotidine (aka Pepcid) to be pushed. We were a little confused why he would be using Pepcid for hives, but he explained to us that Benadryl is a H1 blocker and that Pepcid is an H2 blocker, and since we do not know what caused the allergic reaction it is best to use both to make sure that everything gets taken care of. Levi was still asleep during all of this.
Nurse K continued to come in and check on Levi while she was also filling out the paperwork for the reaction as it all had to be documented. Dr. V told us that he would be ordering a new bag of plasma for Levi and that we would begin the process again. Levi had received approximately 33mL out of the 236mL of the bag when the plasma was stopped.
Levi woke up after about 45 minutes and ate lunch. He was very hungry and woofed down his hotdogs, cookies, and fruit. Plus his milk and juice. He was still pretty sleepy and just chilled and relaxed for a little while. We watched The Little Mermaid 2 and just let Levi relax. His new plasma was started at some point during the relaxing and everything was going well this time. No reaction, but they were keeping it at the slower rate to make sure that everything went fine. A smaller bag had been ordered from the blood bank so Levi would be receiving it all as the bag had 200mL in it.
Levi did fairly well with this second bag, though he was very hungry and very tired. Nurse K kept coming in to see how Levi was doing and laughed when we told him that Levi wouldn't stop eating, she said "That's what steroids will do to a person". Nurse K came in and colored on the floor with Levi for a little while near the end of his bag as she was trying to find that magical point of all the plasma being out of the line with out waiting for a whole bunch of saline to be pumped in after it.
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| Eating! |
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| Coloring |
Levi's infusion finally finished. We put the Heparin in his port and called it a day. He went down the hall to say goodbye to Nurse K, Nurse T, and Nurse A.
It was a long and stressful day! But he got his infusion! We were under direction to give Levi another dose of Benadryl before bed to make sure that everything had taken care of itself. We will also be pre-medicating Levi with Benadryl, Prednisone, and Famotidine before the next few infusions as now that he has had a reaction it is more likely that he will have another one. There is no way to know what caused the reaction, it could have been something in the person's blood, it could have been something they ate that day, it could have just been a difference between what he has gotten before (for example, he possibly had only ever had female plasma before and this was male, or only plasma from white people and this was from an african american), there is no way to know. :(
Another twist in the USS journey. And not one I want to relive often. :(
