Diaphragm Drama

Let's catch up with the past months activities....

Peek a Boo I'm 2!

Eli turned 2 on June 9th!!!! Wow I still can't believe we have a 2 yr old. We decided not to do a party this year since he was just a month out from surgery and germs were still an issue then. Instead, we spent a nice family day at Lincoln Park Zoo and had fun viewing all of the animals. Eli picked Olive Garden for his birthday dinner with just a little influence from mommy, such a smart boy!

June was a pretty quiet month for us as we awaited his surgery consult appointment on the 28th with the general surgeon Dr. Lobes, to address the hernia problems. It was a pointless visit as the doctor was not prepared to talk surgery or actually spend any time checking into Eli's history. After we waited over 3 weeks for that appointment, he wanted us to come back in a month after he had a chance to talk to Eli's cardiologist and his cardiac surgeon. He wasn't sure the surgery was necessary because Eli didn't seem to be in pain or distress. I assured him that Dr. Ilbawi (cardiac surgeon) had told us on the night of Eli's fontan surgery that the hernia and diaphragm most definitely had to be addressed.

Needless to say we left that appointment more than upset because we both felt like we were being blown off. I got on the phone with Eli's cardiologist immediately and begged for them to please do something to speed this process up considering these heart doctors had already cleared him for this next surgery. Well being the amazing doctors that they are, two days later the general surgeon, Dr. Lobe's, nurse was calling and telling us to get a CT scan scheduled. Thank God someone listens to me! We would need to get into the pediatrician for a complete history and physical before they would sedate him. Because of his age and his fear of hospitals, Eli will be fully sedated for the scan. It's always scary for someone to be sedated but these babies sometimes have more issues than most. Thankfully Eli has never had a problem with anesthesia and we hope it continues that way.



Tomorrow morning at 6:30am we'll be loading into my car and heading for Hope. He has an appointment for 8:30 so hopefully we'll be heading home around noon. I honestly have no idea how long these things take because the only other time he's had a scan he was already in the hospital and he only had light oral sedation. They will be doing a chest and abdomen scan so "they can see exactly what they're dealing with".

We had already scheduled our month later retry at the surgery consult so hopefully we can get surgery scheduled then if they don't call earlier. I'm hoping with that little push from cardiology, they will take me more seriously. I will of course update before the surgery once we figure out the game plan. I just realized I haven't exactly said what this surgery is...duh! This surgery will be for his hiatal hernia that is causing his left diaphragm to be paralyzed. The diaphragm is causing his left lung to be tiny and could potentially put a lot of stress on his heart. Also because the diaphragm is up so high his stomach is also up higher than normal, which doesn't really do any bad things that we are aware of. 

On July 5th, Eli took a nice little fall into the edge of our coffee table. He got a deep but small length wise cut right near his left eye. We took him to Edwards hospital in Naperville because they have a really nice pediatric ER and Eli has been there twice before so they have his info on file already. They decided to glue shut the cut even though according to my doctor cousin they aren't supposed to use the glue that close to the eye because it can go into the eye. Gee guess what happened??? They ended up gluing part of his eye shut! They then had to open it back up and that was more traumatic for Eli than actually being glued shut.  The scab and glue have since fallen off and the scar looks horrible in my opinion. It still looks like it could use a stitch or 5. There goes my babies beautiful face :(

On to the not so medical side of Eli's life.....

On June 25th, Eli started his third type of therapy his receives. He now does Occupational therapy weekly with Suzy. We aren't sure how long he will need this therapy because it was originally suggested so we could address some sensory issues that his developmental therapist thought she was seeing. Eli's physical therapist has always disagreed with that diagnosis and it seems like Suzy does as well. We'll still keep doing it for awhile because any help we can get we'll take. So our schedule is now  Monday is developmental therapy with Lori, Tuesday is occupational therapy with Suzy, and Thursday is physical therapy with Meghan.

 July is a fun month for Eli because we have a lot of birthday parties (every weekend) so he gets to see a lot of kids. We have been trying to get out more and enjoy life now that Eli wants to walk more and be more mobile.

Thanks for keeping up with our little guy and all of his adventures. We ask that you keep him in your prayers for his CT scan and sedation tomorrow and his upcoming surgery. Thank you and I promise to update before the next surgery!