Eli was scheduled for a CT arteriogram. We found out late morning that it was ordered and they scheduled it for 3pm. Eli was going to be sedated for this because of how necessary it was for him to hold still. Because of what they were trying to get images of, his unique cardiac anatomy presented a challenge. The contrast dye for the CT would have to be given through IVs in his upper extremity and his lower extremity. He has an IV in his arm, but they had to start an IV in his leg. The nurse called the IV team to send someone and asked them to bring ultrasound to help find a vein. The lady who came found one vein in each lower leg that she felt comfortable trying. She used the left leg first because she 'liked that vein better'. Eli cooperated very well as she inserted the IV (he did cry but he held as still as he could and didn't fight). She got it in easily, but when she flushed it, the vein blew. So off to the other leg we went and unfortunately the exact same thing happened. After that she said she was done and didn't see any other places to try. Our last option was for the anesthesiologist to possibly start one after Eli was asleep. I hate, hate, hate that he was stuck twice and neither worked, but he doesn't have good veins. Unfortunately we have to put him through things like that sometimes. Luckily once he was asleep, the anesthesiologist was able to start one and we are still using it. It's been very helpful during the last couple days to have two IV sites.
While we were passing time waiting for the test, the GI doctor came in to examine Eli. He was not one I had met before, but he was extremely nice and explained things well. Toward the end of his visit he said they would probably do a paracentesis in the near future to remove the fluid. I asked if he knew they recently scheduled a sedated CT for that afternoon. He did not know that but was very interested. I asked if it was possible to do the CT and the paracentesis together to avoid separate sedation times and he said that's what they were going to try to do. He quickly left the room to make arrangements (the clock was ticking!). Within an hour we had confirmation that Eli would undergo both.
Eli did very well for the scan and procedure. I stayed with him until he was asleep then was taken to a waiting area. While there I ate some snacks (thanks Britton's Bullpen!) and drank a lot of water. Eli couldn't have anything to eat or drink 6 hours prior to the sedation so that meant I had nothing to eat or drink for several hours as well. (Although I did hide a water in the bathroom and snuck a few drinks through the day!). They decided to do the paracentesis first in order to remove as much fluid as possible before the scan. The interventional radiologist would be removing the fluid. He said he'd come talk to me when he was done. When he came out he told me they removed over 4 liters of fluid! I couldn't believe it. He said Eli tolerated it well and was having his scan done. Shortly I was taken to a different waiting area closer to the recovery room. He was in there for a long time (longer than he was in the procedure room). Removing that much fluid from anyone could cause problems, but even more with a heart kid. So we had to deal with his blood pressure being low. Once that came back up he was monitored quite a while longer and then brought back to his regular room.
Once here, he was still very tired. He was having his vital signs checked frequently. Around 9pm his blood pressure dropped. A lot. It was 43/29. The nurse called the doc and two doctors quickly came to him (they had been in a couple times before just checking on him anyway). Orders for some stat lab work and fluid boluses were given. Over the next few hours he was given two boluses of fluids via his two IV sites. His lab work came back pretty normal and his other vital signs were stable. He was very sleepy, but when he was awake he was talking to us. He was drinking some and even peed a little which surprised us. His pressures came back up and they continued to monitor him closely all night.
Tuesday, May 15
Tuesday was a long day. Eli was very tired from the combination of the effects of the anesthesia, the lack of good sleep the night before, and the physical exhaustion of the low blood pressure. He was cranky and whiny all day. In addition, when the hospitalist team made their rounds, I found out that the GI group wanted Eli to have an MRI of the liver due to some questions brought about from the ultrasound he had a couple days earlier. At first I agreed, but later realized that couldn't happen due to the piece of pacemaker lead that was still on his left ventricle from four years ago. It's not MRI compatible. I told the team this and they said they'd talk to GI to make further plans. Later that day I was told Eli would have different liver ultrasound that afternoon. He slept a lot through the day. I wish I could say it was a laid back day, but it wasn't. Lots of specialists in and out, lots of activity, lots of whining from him, lots of vital sign checks. He didn't eat or drink anything other then popcorn in the middle of the day when he requested a movie (Alvin and the Chipmunks). He fell asleep during the movie as we laid together in his bed. I slipped out to try to give him more room to sleep. Soon after that, we had a visitor. His YMCA basketball coach and family had come to see him. I knew ahead of time they were coming but no way could I control Eli's nap. Our room is at the end of a hallway so we were able to visit for a while outside the room. At the end of the visit Eli began to wake up. Not nicely, but he was awake. His coach, Taj, went into the room a little and spoke to him some. Then he came out and asked if he could say a prayer with all of us. It was really nice and helped soothe some internal struggles I had been having that morning since hearing some of the concerns the team had. Isn't it amazing how a simple thing like that can help so much? Taj and his family left, but only after insisting on bringing me supper. After they sweetly came back with Fazoli's for us, it was time for Eli's ultrasound. It was done at his bedside and he was very good for it. When it was over, he came to the couch and sat on my lap. Moving him from the bed to the couch wasn't easy since he had fluids going through his upper IV and an albumin infusion going through the lower IV (albumin infusions help replace the protein lost from all this fluid he's accumulating. It pulls the protein back where it 'should be' then an IV diuretic is given to help flush off the fluid). Luckily we had a student nurse with us all day so she and another student helped maneuver his equipment as I carried him from the bed (he can walk, but he was tired and we weren't taking any chances with accidentally pulling out one of those precious IV sites!) It was wonderful to sit with him on my lap for a while, I hadn't gotten to hold him yet that day! I opened up the food and he started eating the spaghetti. I couldn't believe it, but he ate half the serving! He let me order a tray for him and he ate good amounts of some of those items. He still didn't drink much, but he continued to eat little bits all evening. I was able to talk to Bryan for a few minutes and got some news we didn't want. You may remember, we moved at the beginning of the year. We moved then put our former house on the market. Fortunately we had and accepted an offer less than two weeks later. Tuesday, we found out the buyer's loan fell through after a month and a half of working on it. The deal is off. So our house is back on the market. I tried not to think about that too much, but it's getting hard to not be overwhelmed every time I turn around. Child Life services had brought in a PlayStation 3 over the weekend and it's still in our room. We played baseball for a couple hours and Eli's trash talk helped perk me up. We ended the evening snuggled back in his bed, eating popcorn, and watching a movie (Ice Age: Dawn of the Dinosaurs). Both of us fell asleep until I woke to move over to the couch.
Wednesday, May 16
Eli seemed to be much better Wednesday. He woke up happier (not happy, just happier than he was the day before!). He requested a breakfast try and ate most of it. He watched tv for a while which was the first time he watched the tv. Later he changed to the iPad and watched videos of mascots from his favorite teams. While he watched those, we had our typical influx of doctors and nurses each doing their own assessment for him. The biggest battle of today, as well as yesterday and likely the next several days, is managing his fluid balance. He's been given albumin infusions three days in a row to help with that. He's on two diuretics multiple times a day. We painstakingly count every ounce of fluid he drinks, every milliliter of medicine given, and every bit of urine that he pees. Obviously his belly was smaller Monday night after having four liters drained from it, but the next morning it was already larger than the night before. Through the day today, I think it has gotten a little larger still. It's nowhere near as big as it was prior to the paracentesis, but the fluid is reaccumulating. GI visited and said in light of the results from the two types of ultrasounds on his liver, their next recommendation is a liver biopsy. We don't have anything set for that, partly because there is a big meeting tomorrow where Eli will be the main topic of discussion. The cardiac group has their weekly meeting on Thursday mornings. All the cardiologists, the cardiac surgeons, and anyone else necessary will gather to discuss cases that need figured out. We've known since the weekend that Eli's case would be presented so they can work out what is the best plan for him. I found out today they've asked Dr. Tibesar (the GI doc on Eli's case) to be there as well. We should know what they recommend sometime tomorrow. I am not elaborating on the concerns with his liver right now. It's not that I don't think they're right, it's that I don't understand it all well enough right now to fully explain. You all know we're pretty honest with our news about him, so it will be shared, but not until we know what we're sharing. Let's just be clear that it's pretty serious and not what we expected. We are way beyond the point of "let's get him a pacemaker and everything will be fine." Eli is very complicated. All heart kids have a degree of complication, but Eli is beyond that. In talking with specialists today I heard him called "unique" and "different" once each and "an enigma" twice. Once again, Eli is blazing his own trail and taking us along for the ride. We're all on this ride.
Specific Prayer Requests:
- that the team is able to have a plan for Eli regarding his needs with his heart and his liver.
- for Eli's fluid balance to be stable, as well as his vital signs and heart rhythm
- for me and Bryan as we process whatever news the team gives us tomorrow
- for all of our kids who are each dealing with this separation in their own ways
- that we find out for sure why he's accumulated so much fluid in his abdomen and are able to treat it
- that our house sells soon so we don't have to worry about the upkeep of two homes while we're living separately under these circumstances.
Thank you for all the calls, messages, meals, visits, offers of help, prayers, and everything else you've done for us. I don't see this admission being over soon so we may be accepting more of those offers of help in the near future. We are so grateful for all of you. Trying to end on a positive note, here are a few photos from the last couple days:
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Eli's special guys who help Pablo take care of him. In the back is a pillow from Heart Hugs. Left to right we have Austin, Tasha, Giraffy (given to him by Mady and family), Giraffy (given to him by Zachary the night before his first heart surgery), Uniqua, and Tyrone.
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| Not a great picture, but this is the pic I got of his belly Monday night after they drained 4 liters |
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| Mommy, Eli, and Pablo cuddled in bed Tuesday with some popcorn and a movie. This was a rare smile and I happened to catch it on camera! |
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| He walked around the unit once and out to the laundry area to help me bring in our clean clothes. The deal was a wagon ride if he walked for a while, so here he is in the wagon. Doesn't everyone read Pete the Cat when riding in a wagon? |
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| He still sleeps like a frog sometimes! |
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