Busy July!

Well... Eli is soaking up all the attention he can get before his sister arrives! Like every year, we went up to my best friend's lake house for the 4th of July. On the 3rd, Eli got to take his first boat ride and loved it! He enjoyed the day outside and went to sleep perfectly fine. But... Starting at about 11pm on the 3rd he starting coughing and woke himself up at about 2:45am from all the coughing. He couldn't stop coughing and started to struggle with breathing at about 5am, so we ended leaving the lake house early to start heading back home near the hospital. After talking to the pediatrician on call, it sounded like maybe he was just having an allergic reaction to something and needed some breathing treatments. Since it was 4th of July, there were no offices to go to... so if his breathing didn't get better we would have to go to the ER. While it seems to get a little better when we got home, Eli was bad again in the evening, so we ended up in the ER. Thinking we would just get an inhaler/ breathing treatment and head home... We were surprised to find out Eli had a little fluid in his lungs (pneumonia), an ear infection, and tested positive for the common cold! He was/ is the HAPPIEST baby I know with all those things! (They also tested him for Whooping Cough, which thank the Lord he did not have!) Needless to say, we ended up staying in the hospital for a few days.

For about a week he had to take some new medications for his pneumonia & ear infection. We have now added some breathing treatments to his daily routine: CPT 4 times a day, cough assist machine 2 times a day, and a QVAR inhaler 2 times a day. He also has an albuterol inhaler as needed if he has any more cough attacks/ allergic reactions.

very scheduled baby with his treatments & meds

While it's never fun to be in the hospital, this time around was pretty amazing because God is building such an awesome community for us at Lutheran General Hospital. This time around we did not get our favorite ER doctor, but he still stopped by our room to talk to us for 5 minutes and get all the update on Eli. When we were in our room, the next morning I "met" our resident doctor, who is actually a woman we know from the NU football community! (Fun fact - she took our pregnancy announcement photo for Eli after a NU football game.) Some of the nurses at Lutheran are getting to know us and one of the respiratory therapists remembered us from January when she had to do CPT on Eli then! And best of all, our guardian angel, Kathy, stopped by to see us. She was our care service coordinator on our case December - February. She helped us with getting appointments, referrals, and everything once Eli was diagnosed and our life was a little crazy. Annnnnd this week, we found out she's back on our case! She is going to help us not get readmitted and figure all this breathing/ reflux stuff out with Eli. :)

At least he thinks CPT is funny...

dancing at my GI appt

We left the hospital still not fully understanding where all of Eli's mucus, congestion, and coughing is coming from. The best guesses were still reflux, possible allergies, or maybe something in his anatomy is blocked/ not allowing him to breathe properly. Thankfully we were able to answer the last question a few days out of the hospital at Eli's first ENT appointment. Our ENT was able to scope quickly down Eli's nose and throat (which was not very fun for Eli), and saw that everything in his anatomy is perfectly fine! So his best guess is that Eli's reflux is causing all this congestion... Which is also causing his coughing, hiccuping, spit up, and choking. The hope is that if we find a better reflux medication for Eli, all of this should go away. Our pediatrician went to work last week trying to find what that better medication would be, but with Eli's growing team around this reflux issue (pulmonologist, ENT, & GI) and insurance issues... this has been tricky. However, we were able to try a temporary new reflux medication starting last weekend to hold us over until his GI appointment today! And after today, we are feeling much more hopeful as our GI doctor will be taking over all his reflux issues and has many medication ideas for us to try. So as of this upcoming weekend, Eli will be trying another new (his 3rd) reflux medicine! The hope is that this alone will fix all his symptoms, but if not there are other medications we can try to add with it to help.

Eli also had an EEG last week! This was only a one hour EEG that he was supposed to be sleeping for, but putting him in a car for about an hour (to drive down to Christ Hospital where our neurologist is) and expecting him to stay awake is near impossible. Even after pulling over, blasting music, playing all his musical toys, and trying to make him dance... He just fell right to sleep in the car with a smile on his face. So needless to say, he did not sleep during his EEG. However, our neurologist was able to get some results from it. It was not bad or good... NO seizure activity; however, some increased peaks for chances of seizures. His EEG in April showed these peaks as well, but they are more elevated this time around. Because of this, we will not go down anymore on his Keppra and will redo an EEG in September with possibly talking about going up on his Keppra again to help control those peaks... Which should ultimately help him with his development. Our neurologist is a little concerned that Eli is not developing overall more than he has... But also understands that he has had a lot of complications along the way!

EEG hair :)

Praises:

• So many amazing doctors on Eli's team, all trying to figure out what's best for him!
• GI taking over his reflux needs and finding us better options.
• Congestion and spit up are getting better on the 2nd temporary reflux medicine he is on.
• No vomiting for a little over a week!
• Amazing family & friends who serve us so well and love on Eli so much.

Prayers:

• 3rd reflux medication does the trick! Hoping he doesn't need to be on others as well.
• Getting reflux under control so that we can start food by mouth again (this has been on hold since it makes him vomit with the reflux).
• Eli's overall development - his eyesight,  his muscle strength and movement, interaction with his environment, communication, growth, etc.
• Continuing to not have seizures and in the near future getting these spikes under control.
• Preparing for baby sister and Eli's adjustment to her arrival!

“for God gave us a spirit not of fear but of power and love and self-control. Therefore do not be ashamed of the testimony about our Lord, nor of me his prisoner, but share in suffering for the gospel by the power of God, who saved us and called us to a holy calling, not because of our works but because of his own purpose and grace, which he gave us in Christ Jesus before the ages began,” ‭‭2 Timothy‬ ‭1:7-9‬ ‭ESV

If all of this wasn't enough going on... Eli is getting 2 molars! His other 8 teeth have been no problem - just some drool. These have been a little different for him and we are remembering that our happy baby can cry! 2 molars = lots of cuddling and drool. 

Just waiting on sister to arrive...

Had a blast at Levi's 3rd birthday party!