Thursday, 08/22: Eli was running a high fever for hours. It didn't come down until Friday morning despite alternating doses of Tylenol & Motrin every three hours. He was also vomiting, dry heaving, and (most concerning to me) his oxygen sats were lower than normal. Even with raising his oxygen to 1L he was sating 92%. Usually he stays 95% or above with 0.5L. I also noticed he was working harder to breathe and breathing faster than normal. I debated a trip to our ER, but decided to keep an eye on him and take him if he got worse. By the time offices were opening I was texting and calling so we could get the ball rolling with him. I wasn't sure what was going on, but we knew it wasn't normal and needed addressed.
Friday, 08/23: After speaking with our cardiologist and Angie with Infectious Disease it was decided to admit him to the hospital. I packed up (most of it was ready to go anyway!) and we headed north. Bryan stayed in town to finish the workday and be with Zachary after school. When we got to the hospital we were what they call a direct admit. We still have to go through the ER but that's just for them to get his vital signs and hold us until his room is ready. Once we got to the ER, Eli's sats were down to 77%.
We were taken to a room on the third floor (general peds unit) and he was seen by a hospital intensivist and by the Infectious Disease doctor and nurse practitioner. He was admitted and sent for chest xray. Then back to the room for an IV and lab draws, including two blood cultures. Then we went for a chest CT. The purpose of that was to see if he had any large areas of infection to blame for all these issues. After all that was done we got to settle in for the night. His room is one of the cool "Peyton Manning" rooms meaning it's decorated with Peyton and Colts memorabilia. After we'd been in the room a couple hours Eli was looking around and got excited to see Blue, the Colts mascot. He's in a big boy bed instead of a crib. They said they could get us a crib if I wanted but I think he likes the openness of the bed and is doing fine for now. We know that when he's feeling better he will have to have a crib for safety purposes because he will be on. The. Go.
Eli had a pretty good day and night Friday but he is still a very sick little guy. Because of everything going on he is considered septic right now. He threw up once at the hospital but was able to eat and drink some and keep it down. His fever was gone (without any Motrin or Tylenol) but his skin still felt very warm. Despite being on 2L of oxygen he was still breathing fast and working hard to breathe. His oxygen saturation varied in the 80s most of the night. He had IV fluids going for hydration, nighttime PediaSure feeds for nutrition, and was also started on Cefazolin (antibiotic) to start fighting whatever infection was present. After the blood cultures are back we'll know if we should change to another.
Saturday, 08/24: The day started off with an echocardiogram. Eli didn't fuss much and she was able to complete it quickly. Throughout the morning we saw several of our docs. It started with the hospital intensivist for the day who had taken care of Eli multiple times on our previous admission April-June. Dr. Whalen had a lot to discuss about Eli. He said that Eli's body is very strongly fighting an infection. His white blood cell (WBC) count was very high at 27,000, his bands were high and his CRP was high at 21. {Translation: WBCs are cells in our blood that fight infection. Bands are immature white blood cells. Eli's body is fighting so hard that it is sending out immature WBC ("untrained troops") to fight. The CRP is another indicator of infection or inflammation present in the body.}
The good news didn't stop there. The CT scan showed the effusion that had been drained Tuesday was back. The scan also showed areas of atelectasis (develops when the tiny air sacs (alveoli) within the lung become deflated). Basically the upper and lower lobes of Eli's right lung weren't moving air. The middle lobe wasn't moving much because of the effusion. Dr. Whalen wasn't sure if the atelectasis is due to the effusion or pneumonia. That's right, possible pneumonia. Also, the blood cultures they drew Friday were growing a bacteria. It would take another 24 hours to identify which organism was growing and then another 24 or more hours to test which antibiotics it may be sensitive to. Because we had a positive blood culture, Eli was started on Vancomycin in addition to the Cefazolin. At this point there are still a lot of pieces to put together, but at least we have a starting point for treatment.
Dr. Abraham (heart surgeon) came in to see us. We hadn't seen him since June 4 when we were discharged after the long Fontan admission. I asked if he'd missed us and with a smile he replied, "No, not really." He talked to us about the different things we'll be addressing in the next few days. He wants to place a chest tube tomorrow (Sunday) to help raise Eli's sats and make it more comfortable for him to breathe. That may also help decrease the atelectasis and allow Eli to fight the pneumonia a little more. At some point he wants to do a tagged white cell scan. They inject a radioactive dye into Eli's IV and it attaches to the white blood cells. Using nuclear imaging they follow the glowing WBCs and see where in his body they're gathering. That could give us some information regarding the source of his infection. He has been clear with us since Eli's abscess in May that the pacemaker may need to come out. If it does come out, we could possibly treat Eli with strong antibiotics for several months and then revisit the possibility of putting a pacemaker back in. However, he said first thing's first and that is the chest tube.
We also had visits from Dr. Belcher (Infectious Disease) and Dr. Kumar (cardiologist). They didn't really have any new news for us other than Dr. Kumar saying that the echo looked stable in comparison with Eli's last one and it also didn't show anything in the heart that would indicate infection. An echo isn't the primary way of discovering cardiac infection but it could show up there if it's present. He said that Dr. Steinberg (another cardiologist, this one is in charge of the pacemaker settings) will interrogate the pacemaker this week. That means they'll access the "memory" and see how much Eli is using the pacer. If he's not very dependent on it then it will ease some of our fears if the pacer has to come out.
Bryan and Zachary got to the hospital just before lunch and we got to visit together most of the day. The two of them left for the Colts game and spent the night at my sister's house.
Sunday 08/25: Bryan got to the hospital mid morning and the three of us spent some time together. Zachary stayed at my sister's house and later went with one of Bryan's sisters. They went miniature golfing and Zachary got a hole in one :) He said, "I just can't believe it!"
Eli was brought down to the PICU about 10:30 to have his chest tube placed. Bryan and I waited out in the lobby like we have a few times before. This time we waited a long time. Just as we were starting to voice our concern to each other, one of the PICU nurses came by and gave us an update. Eli was doing fine, but Dr. Abraham was having trouble accessing the effusion. He was going off the chest xray (as he did with all the other chest tubes he's placed in Eli this year) and tried one spot , but didn't get any fluid out. He tried a second spot and got a small amount of fluid but knew it wasn't enough. He had an ultrasound tech come in and verify exactly where the fluid was and what it looked like. He didn't like what he saw on the ultrasound. Eli has a pocket of fluid but it's in a difficult spot to access. He could maybe get it if he went in Eli's back instead of the side, but that would be very uncomfortable for Eli in the coming days. Complicating things further is what's happened to the effusion. It's not a single sac of fluid, it's actually multiple sacs. The term used is loculated. It has several sacs together, kind of like a honeycomb. If Dr. Abraham were able to get a chest tube in the right spot, he could only drain one or two of the small sacs and there would be multiple more to get. Dr. Abraham wasn't comfortable proceeding further in this setting so he's taking Eli to the OR Monday. I honestly didn't get to hear much of what he was explaining about the OR because Eli was crying a lot at the time. I couldn't even think of questions but that's okay because I wouldn't have heard the answers! I know I will see him or Sara (nurse practitioner) before the procedure so I'll get a better explanation of how this will be addressed then. Eli is tentatively set for noon but it could be bumped to later depending on how the cases before him progress.
Because his sats were low and he was working so much with each breath, they kept him in the PICU for the night. We don't know for sure but I suspect there's a strong chance we'll be here tomorrow night too. For now they can hold our room on the third floor so we don't have to move all our stuff, but we don't know how long they can hold it. It just depends on how many admissions they get while we're gone. Eli has rested some tonight and had a lot of fussy times. He's on something I'm not familiar with called Vapotherm. It's an oxygenation system that delivers heated and humidified oxygen with positive pressure (meaning it's harder for the patient to breathe out what we want them to keep in). It helps reduce the amount of work it takes for Eli to breathe right now. It's delivered through a nasal cannula so he can still talk, eat or drink.
So, in a long nutshell, that's what's been going on the past few days. We don't have a lot of answers but we are making some progress. There is absolutely no talk of discharge anytime soon. I've already started making a mental list of things I'd like Bryan to bring when he comes back next weekend. Yes, Bryan left to take Zachary back home. He really debated staying for tomorrow's procedure, but to be quite honest he doesn't have a lot of vacation/sick days left. We don't know what we may be facing in the next few days or weeks so he decided to go back to work. The advantage is that Zachary will still have one parent in Washington and they can be together almost every night. Our hope is that Bryan won't have to use any of the days he has left and can use them for pure enjoyment around the holidays!
We can definitely use your prayers. Two of the docs have independently told us this is a very complex case right now and we have a lot of work to do. Eli is strong and it's awesome that his body is fighting they way it has been. However, we don't want him to have to fight this hard! We want him to go home and tear up the house, sneakily open the child lock on the cabinet containing the potato chips, and sit on the couch watching the Reds with Daddy. That's where he belongs and what he's good at!
Specific prayer requests:
- for Monday's trip to the OR to be safe and productive
- for guidance on the right path to take as we put the puzzle pieces together
- for Eli to get some peaceful rest. He's hurting tonight and just generally uncomfortable (and probably mad at us!)
- for Zachary as he adjusts to our separation again
- for Bryan as he assumes the unwanted role of being a single working dad
- for me as I try to take good care of Eli, ask the right questions, and properly relay information to Bryan and all of you
Thank you for the continued prayers and support! It is really uplifting to see your words of encouragement and know Eli is lifted in prayer from so many! Thank you :)
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