ACCKKKK!!! I don't think my brain can take anymore of this crazyness. In the past two weeks we have had more medical intervention than the past two months. I am stressed to the max and exhausted. It all started in the beginning of January when Eli broke out in a weird fungal rash all over his trunk and upper limbs. They took a culture but it somehow was lost in transit to Children's Hospital. He has been on grisefulvin (and antifungal) for 4 weeks now with 2 more left to go. The rash just now started to clear up a few days ago and we (as well as the doctors) were getting worried. They do not know why his immune system allowed him to have such a wide-spread fungal infection which is rare but he seems fine otherwise.
His physical medicine appointment was another story. Eli has been doing worse over the past few months in terms of his gross motor skills and swallowing. After he got his cast off Al and I immediately were worried about his gait and external hip rotation. He couldn't walk and when he did it was dragging his right leg behind him. Going down steps was a no go without one of us holding both hands or carrying him all the way down. Eli was falling a ton and kept saying his legs hurt in addition to his ankles being super tight. One night after bath I was putting lotion on him and he had extended clonus only on his right ankle which concerned me a great deal. I guess I was right because his phys med doctor was quite alarmed by his declining neuro status as well.
She ordered a bone density scan to make sure there is nothing wrong with his bones because he shouldn't have broken his 3rd metatarsal jumping on a matress. We had the scan on Monday and I will get the results this Friday. She also ordered an MRI of his brain and spine. It was supposed to be done on Monday right after his bone density scan but the anesthesiologist was concerned with his aspiration and respiratory compromise so it will now be done intubated and under general anesthesia on Monday Feb. 2. My poor baby has to be put under for yet another procedure. His doctor also ordered another swallow study to evaluate his dysphagia next Thursday the 5th. Cross your fingers for that one. Eli will be getting casted for AFOs in the coming weeks due to the decline in his gait and function of walking. I hope he pics out a pattern that he likes so we don't have to fight him to wear them!
With all of this going on I have been a mess. I hate having things pop back up from his NICU days. It has almost been 4 years since his scary arrival 15 weeks early and during times like these I hurt inside for the struggles he continues to face. We are unimaginably lucky and blessed with how unscathed Elias has been for a 25 weeker but neuro changes and g-tubes somehow eat at my soul when thinking of my rambunctious little man. It truly is a journey that we will get through together.
The uvulitis came into play with the only member of our household that seems to NEVER get sick....Al. He woke up at 3am yesterday choking and when he calmed down enough to let me look in his mouth, his uvula (the dangly thing in the back of your throat) was swollen to the width and length of his pinky!! We called my parents to come sit with the kids since they were sleeping and headed over to the ED. He got a steriod shot in his hip and put on oral steriods for the next five days. The ED doc said someone had to stay with him for 24 hours in case the swelling got worse and blocked his airway so I had to call off work :( Everything ended up okay though and he is now sitting next to me complaining about me still being on the computer!