Once again...it's been awhile

Wow...where to even begin since it's been almost 2 months since an update. Time is getting away from me these days. Anywho...Liam's g-tube and nissen surgeries were pulled off without a hitch. He was discharged after 24 hours in the hospital. But, that wasn't the end. He developed an ileus (a blockage of sorts - his was caused by a swollen sphincter from the nissen fundoplication) and had to be re-hospitalized less than 48 hours after discharge and put on complete gut rest. He got out after a couple days and life seemed to go well for a few days. He had a follow-up EEG and neurology appointment toward the end of May. The EEG showed no seizure activity but showed moderate background slowing - confirming he is delayed.

Then, the fun set in about a week or so after that. He screamed literally for 3 weeks on end this month - had pneumonia/bronchitis again, more GI issues leading to a formula change, heart rate and oxygen sats all over the place (bradycardias in the 60s and tachycardia less than 24 hours later over 200). So, we had another EEG this week. Again, no seizure activity during the test but there is no improvement from the last one, either. So, now the doctors are saying all the issues I mentioned are being caused by the damage to his brain caused by the infantile spasms/west syndrome.

He has been smiley for 3 days, now, until today...when his switched flipped again and he was once again screaming. His moods are inconsistent and just all over the place. We are also in the process of getting him a wheelchair and some equipment (special seating) for the house. In addition, we had to bite the bullet and get him a disabled parking pass for when we're out and about.

Ok, enough negative. Liam is such an incredible baby. He is so laid back and even though he's experienced a lot of pain and frustration in the last couple months, he is SO smiley when he's in a good mood.

Less than 14 Hours to go...

Well, we're less than 14 hours out from the time we have to be at St. John's tomorrow for Liam's surgery. They will be inserting a g-tube and doing a nissen fundoplication. The nissen is where they take the top part of the stomach and wrap it around the bottom of the esophagus and stitch it there to stop reflux. I'm not looking forward to him being in pain because, from what I've read, these surgeries come with quite a bit of pain. I know, though, it'll be better for him in the long-term...but short-term, it stinks! I know God is watching over him, though, and lots of people are praying for him. Thank you if you're one of those people!

T Minus 48 Hours

So far Mr. Liam is STILL healthy! This is awesome! That means that unless he gets sick before then (and believe me it CAN happen), he will be having his G-tube and Nissen Fundoplication surgeries on Wednesday morning. This is super nerve-wracking for us as it's the biggest surgery one of our kiddos has been through. We've been through ear tube surgery 3 times, and Avery was circumcised at age 2 (which required being put under general anesthesia b/c of age). Still hoping he keeps it together til Wednesday (and after) then has a speedy recovery and is home for his big brother's 5th birthday on Saturday!

G-Tube Surgery Rescheduled

Like the title says, Liam's g-tube surgery has been rescheduled - for May 11, 2011 (Uncle Shawn's birthday). We're crossing our fingers and praying that it actually happens this time. We scheduled it the day before yesterday, in the morning, and by that evening he was wheezing again. So, we called the doctor yesterday and they put him back on antibiotics (which he had JUST finished a 10-day course of on Tuesday) until his surgery. Hoping this works to get the surgery done. He needs to have Occupational and Speech therapies stepped up but it would be useless to do so with the NG tube so we're kinda holding off until we get the G-Tube for him.

Little man is outgrowing his swing/bouncy seat and the jumperoo and still doesn't have enough trunk strength and control to sit in the high chair without being propped up in there so the physical therapist is working to see about getting us a special chair (called a tumbleforms chair) for him to sit in. We're working on sleep options for him, too, since he's sleeping propped up on pillows on the couch with one of us sleeping in the floor next to him. That's about it.

An Overdue Update

Liam stopped the ACTH injections last week! He is such a happy baby again. He's rolling, now. We have some serious work to do on trunk control. He has gotten so used to breathing with his stomach that that's how he breathes most of the time, now. He is learning pat-a-cake and it's his new favorite thing! I've caught him imitating sounds, too! Today, I said "uuuugggh" really loudly and heard him make the same sound...so we did that a few more times until I tried to show Shane...then he wouldn't do it. Liam has a puppy, now, named Daisy. Daddy isn't happy about this but Liam's face lights up when he sees her. Liam now has a private duty nurse that comes twice a week to take care of him while I do my practicum. It took a lot of self-talk and self-convincing to make myself "okay" with accepting help but I'm going to flunk out of grad school if I don't. Her name is Bonnie and she is great!

Happy Birthday, Liam! A Letter from Me to You.

My Dear Sweet Liam,

I know this first year of your life has been so hard for you. You've had to struggle more than any baby should. But, through it all, you have stayed strong and continued to show the world your perfect little smile and those crystal blue eyes. I'm hopeful that as you grow you will not remember the bad things that have happened this year and only remember that you are loved by so many people - family, friends, church member, doctors, nurses, therapists, and even complete strangers but most of all, me. I love you so much, little Liam.

Happy Birthday, my beautiful little man!

Love,

Mommy

Just a Little Update

We had an Upper GI and a Small Bowel Study done today to make sure there's no blockage. He's been having dozens of poops per day but his belly, over the weekend, kept getting bigger and bigger and he was screaming in pain and his o2 sats were everywhere so I took him to the ER where they did an x-ray which showed, of all things, that he was constipated from top to bottom. So, we added Miralax to his cocktail of daily medications - this is something we dealt with with Avery, so we're not new to constipation with diarrhea issues, it just sucks, though.

Yesterday we had a Neuro appt. where I got chewed up one side and down the other for taking him to the ER because of the germs - which I know but he had been screaming in pain for 4 hours and urgent care wasn't open yet (and really, is there any less germs at pediatric urgent care?)...anyway, won't do that again. Then, there was a mix-up with the ACTH dosages. Neuro had changed the doses 2 times and we were going by the wrong dosing information AND in addition to that, the nurses at the hospital did the math wrong and had us giving 0.35 on the syringe rather than 0.3 so we've gone through it quicker than we should've so he chewed me out because of the cost of the medication (how was I supposed to know the nurses did the math wrong?)...

Anyway, so yesterday I contacted the peds office and requested something either stronger or different for Liam's reflux which has grossly worsened since having the NG tube put down. Well, with all the constipation/diarrhea issues and the increased reflux, they decided to do an UGI and Small Bowel Study just to make sure there were no blockages causing it. So, everything looks good! Which is great.

Now we're looking at a G-Tube in the next week or two. The neurologist and pediatrician seem to think it's time to move forward with that. The Neurologist isn't concerned about weight gain (ACTH has helped with that) but with calories for energy because he is too floppy. Neuro says he shouldn't be THIS floppy, even with ACTH....so...that's where we're at.

Milk and cookies to you if you followed my word vomit, there. I just had to get it out!