Friday, September 08, 2006

A December Date....

We just got home from the surgeon. Unfortunately I was right and Eli does have an incisional hernia. His surgeon does not want to go in and reopen his scar from his Nissen fundoplication surgery since Eli is just over 3 months post-op. There is a high risk of operating on the site prior to 6 months post-op due to his scar tissue not being fully formed and the increased risk of adhesions. The muscle ring around the hernia site is stable and so Eli's doctor decided to wait until December to go in and do the repair. Eli will then be a little over 6 months post-Fundo and it should be an outpatient procedure. If we noticed that his hernia is not reducible (i.e. we can't push his intestines back into his abdominal cavity) or that Eli seems to be in pain due to the hernia, we may try and push up the date of the surgery.

Eli will also have a muscle biopsy taken at the same time as his incisional hernia repair. The muscle biopsy will be taken out of one of his thighs and given immediately over to pathology to be put into liquid nitrogen. They want to do this biopsy to try and rule out
mitochondrial disorders as a source of Eli's extremely high caloric needs and poor growth. This will add another 2" scar onto his body but thankfully it won't be in a very noticeable area in most life situations.

We go to the GI doctor on Tuesday to discuss if Eli's upcoming endoscopy and colonoscopy can also be done at the same time as the hernia repair and muscle biopsy so he can only be put under general anesthesia once instead of multiple times. It would be nice to get all four procedures out in one big bang. Hopefully Eli will be at a good, healthy weight and height in December and on track with his adjusted age for milestones so that these procedures/surgeries don't have a huge impact on him as they have in the past. I am quite anxious about the effect another surgery will have on our little man since his fundo in May almost killed him. The months of weight loss, FTT, malnutrition, illness, regression of development, and loss of *our* Eli was hard on everyone and I hate to put an 18 month old Eli through it all over again. All of this is necessary though because of the negative outcomes if we refuse the surgeries/tests.

Good news for the week......

1.) Eli was resubmitted for
Synagis and qualified!! Our insurance company has already paid in full for the first month. I am so relieved that we will have the extra boost this RSV season with Carson bringing home who knows what from preschool and Eli going through at least one more surgery. The first month cost our insurance $3,343.76 and Synagis is dosed based on weight so the cost will only increase (hopefully) as the season progresses through April. Thank God for insurance. We have paid a ridiculous amount out of pocket this year but it pales in comparison to what Aetna has shelled out.

2.) Eli went to the opthamologist on Tuesday for a follow-up
ROP check. We got the wonderful news that he does not need glasses quite yet! His opthamologist said that his ROP (stage 2, zone 2 bilaterally) did cause him to be near-sighted and he most definitely will need glasses in the future. He suspects that Eli will get a pair in about 2-3 years judging by the length of his eye. I was relieved to hear this bit of news b/c Eli won't even keep sunglasses on for 10 seconds and I was at a loss on how to keep glasses on the kid.

3.) The best news of all......I'm done writing this extremely long and medically in-depth update on our little 25 weeker. Thanks for making it through it all!


maggie said...

Sending hugs to little Eli! Sounds like he has a busy medical schedule in the next few months. I'm praying that everything turns out just fine!!!

Good news about the synagis and ROP!

To end on an even better note - GO BUCKEYES!!!! This Penn State household will be cheering them on this weekend!

laura said...

congrats on the extra year of synagis. we ahd to jump through some hoops for the 2nd season too. word of advice from the micropreemie mom with school age kids...worse than preschool sorry to say, PUREL. Give some to the school and make it the law of your world that no one touches Eli without a squirt of Purel. Good health to you as this season fast approaches