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!

Just an Update

Sorry, mommy's failing at the whole blog thing...really, it's probably more avoidance than anything...but, here's an overdue update. Liam did have some more seizures before leaving the hospital but they were very mild and he hasn't had any since. The MRI came back ok. It's not normal but what's wrong is caused from the seizures, not causing the seizures. He was released from the hospital after 9 days, total. We were held up by feedings - or lack thereof. One hospital intensivist doesn't release children with NG tubes - either have to be taking all feeds by mouth or move on to something more permanent (G-tube). The other hospital doctor, however, decided it was time for us to go home and knew we could handle the NG tube - good thing because we would STILL be there if it weren't for him.

People keep asking how Liam is. It's a hard question to answer. He's not having seizures - which is the most important thing right now. However, he has lost most of his developmental milestones and has only attempted to smile twice since mid-January. My little man is lost inside himself from these ACTH injections. This is nothing out of the ordinary, but no less easier to deal with. Everyone that knows Liam knows he is generally a very happy, smiley, social baby. Now...not so much. This has been very hard for Shane and I to cope with and I can't wait for the day we get to see him smile again (after the ACTH shots).

Bitter with a a LOT of Sweet (at the end)

Liam's been in the hospital since Thursday. He had 17 seizures/spasms in 4 minutes on Thursday night so they gave him Diastat. The medication is a gel that is VERY expensive ($30,000 per vial) and there is nowhere in this state that carries it so it had to be shipped from Florida and should arrive at our house today (we had to promise there'd be someone there to sign for it) then DH will bring the medicine up here to the hospital so he can start on it. In the meantime, they've stopped the Phenobarb after the seizures the other night and started him on Keppra. The Keppra has wiped him out so he's slept most of the time. In addition, he had a MRI yesterday that he had to be sedated for (they used pentabarb) so the combination of the sedative and the keppra are keeping him pretty sleepy. He only wakes up to eat or cry - I miss my smiley little man - haven't seen a smile in almost 2 weeks, now. He is having a hard time recovering from the pneumonia b/c the medication is knocking him out and he's not coughing it out.

So...alot to deal with. The treatment for these seizures is a very strong steroid which will further suppress his immune system which is VERY scary for us because he's currently on his 12th hospitalization since leaving the NICU in May and making him more susceptible to anything scares the heck outta me. In addition, we'll have to take him to the doctor weekly for blood pressure monitoring because the medicine can cause hypertension - if he does develop hypertension, they'll treat that with medication. Anyway...just praying at the moment and hoping to see my baby boy smile again, soon!

The good news is HIS MRI IS NORMAL!!!!

Now We Know

Just wanted to thank everyone for the thoughts and prayers for Liam. They are truly appreciated. Right now, we're a bit shell-shocked and reeling from all this. I know everyone has a lot of questions, as do we, so I'll try to answer them as we get more information.

As confirmed by the EEG this morning, Liam is having Infantile Spasms. Compared to grand mal seizures, they don't LOOK that bad, however, they are more devastating. Most children with IS have some degree of mental retardation. There is a chance he can outgrow them but a very strong chance that this diagnosis will be replaced with another seizure disorder diagnosis.

What we know right now is that he'll be here for at least the next couple days or so. They have to order the medication and it has to be shipped here - should be here tomorrow. They have to see how he is going to react to the medication and we have to learn to give the shots ourselves before discharge. He will get the shots for at least the next 12 weeks. He needs to have an MRI but they can't do the MRI until he has had antibiotics for 24-hours to treat the pneumonia so they can safely sedate him. And, that is the gist of what we know.

Praying for a better outcome

Ok our Internet is now down so I'm posting from my phone. The nurse on-call called back and our ped. said for us to come into the office tomorrow. Was a little frustrated and debating going on to the E.R. when our Neurologist called us himself from home. He said "I'm sorry to tell you this but I think they're seizures" he then went on to say (and confirm our fear) he thinks they are Infantile Spasms. We have to be at the hospital at 9:00 AM to be worked in for an EEG he said depending on what the EEG shows, we will probably be admitted to the hospital to be started on shots. I can't quit crying because he said these are the worst kind of seizures a baby can have.

It's Been Awhile

We've had quite a month so far. Liam contracted RSV, which landed him in the hospital. He very narrowly missed admission to the PICU (as in they told us they were moving him to the PICU but came back to move him and he was breathing a hair easier so they held off). Since then, he got his ear tubes - which were a success - he can hear so much better, now.

Now, however, there's been a new development. He has started having these clusters of "episodes" which are like spasms. I thought they were stomach cramps, and I got them on video after 3 days, but the pediatrician is sending it to his neurologist. I'm just hoping for some kind of answer because he just cries during them and it breaks my heart and there's nothing I can do to soothe him.