I just got Eli to bed. It's almost midnight and I just got the monkey in his crib. Why so late? Well, he's running a fever. This has been happening off and on in the evenings since Sunday night. Today he ran a low grade fever all day and then spiked to 102 after 9:30pm. He did wait until after we saw which NBA team drafted Cody Zeller. He & Zachary were very excited for the draft and were yelling "Victor!" (Victor Oladipo, IU player drafted #2 overall) and "Cody!" Well, that's what Z was yelling. Eli's sounded more like "Vicar!" and "Tody!" It was so neat to see IU guys drafted #2 & #4. Good guys too.
Anyway, back to Eli. He's had these temperature spikes in the late evening since Sunday. One dose of Tylenol had taken care of it, but why was he getting them in the first place? We really didn't worry the first night, but when it kept happening we knew something was up. We still don't know what. On Tuesday (06/25) he had a scheduled check up with the cardiology team in Indy. I say team because it was with several people. Luckily they're all in the same office so it was them who had to take turns seeing Eli, not us rushing around to accommodate them! We saw Dr. Parikh (Eli's main cardiologist in Indy), Dr. Steinberg (cardiologist in charge of the pacemaker), and Sara (surgical nurse practitioner). Overall, the appointment went well. They're happy with how he's doing. He'd even gained a little weight since discharge which made me happy because he doesn't eat as much at home as he did in the hospital. He eats, but he's a busy two year old who has much better things to do than sit down and eat more than three bites at a time. We basically offer him food every 20-30 minutes all day, every day.
Eli had an echo, EKG and his pacemaker was interrogated. That means they hold a device over the area of his body that has the pacer and it feeds info to a machine. They use the machine and that device to check and change settings on the pacemaker as needed. Eli has a dual lead pacemaker which means there's a lead in his atria (top chamber of his heart) and in his ventricle (lower chamber of his heart). Yes, I said chamber for each because Eli's heart is soooo much not like ours that he basically now has one atria instead of two and one ventricle instead of two. Dr. Steinberg has said all along that Eli only required atrial pacing, but since he was in there and you never know what a single ventricle kid will need in the future, he went ahead and placed a dual lead pacer. Now the lead going to the ventricle isn't working. That's really no big deal because Eli wasn't using it anyway, but it is kind of annoying. Dr. Steinberg said we'll just remove it or change it when it's time to change the battery or the atrial lead. Good news is that the important lead, the atrial lead, is working very well. The only thing he changed was Eli's rate. When Eli is awake he's paced at 80 beats per minute, when he's asleep it's 70 beats per minute. If he's really active or upset, he can go higher. The pacer doesn't stop his heart rate from rising because its purpose for Eli is to keep his heart rate up. Prior to the pacer he was in a junctional rhythm which resulted in a very low heart rate for him.
The echo and EKG were good. Eli wasn't thrilled about the echo, but he's so used to these things now that he doesn't actually fight us. He'll scream and reach for us, but he doesn't fight the procedure. Eventually he settles down and doesn't scream, although he doesn't act happy until it's over and he'll put his hands out, shrug a shoulder, cock his head to the side and say "All done?" It's very cute. The echo showed that he does still have some pleural effusion present, but it isn't any worse than before.
When we mentioned the fevers to the cardio team, they weren't too worried. At the time he'd only had two nights of fevers so they said if it continued to get two blood cultures and a couple other blood tests. Getting the tests isn't such a big deal. The part that was going to be tricky was they wanted them while he had the fevers, before any meds were given. He wasn't feverish until the late evening, so that meant we would have to go to the hospital after hours, get out outpatient admission done through the ER (not an ER visit though!), and then go to the lab.
So, that's what we did tonight. The past couple nights he had very low grade temps. Then he had a low grade fever all day today which spiked to 102 this evening. I went to change and gather our blood work order and insurance info. In the meantime he fell asleep on Bryan's lap. Hoping the fever had broken didn't work because I took the temp again and it was the same. So he was woken up as I lifted him off his comfy spot on Daddy's lap and took him to the hospital. We didn't have to wait too long, but from start to finish the whole thing took a little over an hour. Because they needed two blood cultures from him, he had to be stuck twice. Again, he screamed the whole time, but didn't fight it. I don't blame him for screaming. He wasn't feeling well, couldn't have any medicine for it, and it was waaayyy past bedtime in a not so fun place. Luckily, the guy who drew the blood only had to stick him once on each arm. He was very good and I was incredibly grateful for that.
The only other change we're making to Eli's routine is to resume a regular diet (instead of low fat diet) as of Monday July 1. That means instead of this special formula he's getting at night, we'll go back to cans of PediaSure for the nighttime feeds and he'll drink 2% or whole milk instead of skim. We also don't have to watch his diet (any more than a reasonable parent should anyway!). After being on a regular diet for a week, he'll get a chest xray and some blood work. That will show how his body is tolerating the fats well and if it changes the effusion in any negative way.
Tonight's update sounds pretty depressing, but honestly he is doing well. He plays a lot, he's nuts, he runs races (by himself or with us), he plays drums, he doesn't turn blue and he's pretty happy most of the time. He's been a little fussier with these fevers, but who isn't?
While I have your attention, I'd like to ask for prayers for a new heart warrior. Liam was recently diagnosed with cardiomyopathy. His mom was one of our nurses during Eli's seven week stay, and Eli was very comfortable with her (that was a HUGE deal!). The day Eli was discharged, Liam was taken to the ER for what they thought were asthma issues. An incidental finding that his liver was lower than normal lead to a chest xray. That revealed an enlarged heart, which lead to an echo, which lead to the diagnosis that their precious 3 1/2 year old son will need a heart transplant. A few days later, Liam had a cardiac MRI to determine more details about his heart. In the recovery room, he went into cardiac arrest. They were able to bring him back and put him on ECMO (heart & lung bypass machine that does the work of those organs allowing Liam's to rest). He was transferred to Cincinnati Children's Hospital a few days later. He is now off ECMO which is wonderful. Things are still very serious for him as the medical teams continue to determine what damage has been done and how long before he will need a transplant.
All this has come as a shock to his parents who just thought their son had asthma complications. I completely remember the overwhelming feelings of shock, disbelief, numbness and grief that we went through when Eli was diagnosed. These parents have been very strong, but need more prayers for them and for Liam. I know they're staying in the nearby Ronald McDonald house and their family & friends in Indy are working on fundraisers for them as they begin this journey they never expected to take. Please keep them in your prayers.
Specific Prayer Requests:
- for us to find out what is causing Eli's fevers
- for the perfect heart to be donated to Caleb
- for Liam to continue to do well and for his family to deal with these life-changing events
- for Eli to do well when his diet is changed
Thank you all for the prayers!
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