October 3rd 2017 updates 1123

On By SMCLeave a comment

Well life seems to be busy, it has been a while since I have written anything.

RT had his G tube removed back when he was 11 months old and I think I forgot to write about it. It was a quick procedure just deflate the ballon and remove it.

Well it didn’t close up so we scheduled surgery for after my deployment. As life would have it while I was deployed mom got a call with an earlier surgery date possible so I was not there for it. It has now been closed up several months.

He has been progressing outstandingly. Incredible really. He is not quite crawling but kind of moves around like a seal. Both arms and then both legs. Still working on getting him to alternate legs and arms. But still, from early on with a fear that one half of his body might not function to him exploring the house under his own power, is just something I never even knew was going to be possible.

He has started to push him self up to standing also! He is so proud of himself when he stands. The first time

He tried to stand the first thing he did was try and hop around and then stand on one foot. Thinks he can go straight to the crazy stuff.

Well today is another surgery day unfortunately he has a hydro seal ( inguinal hernia but only fluid no intestine pushing through. He had a inguinal hernia on the right side that was repaired at the same time as G tube placement.

Left him in the nurses arms at 1025.

Sedation with gas, then local anesthesia will be injected into his lower lumbar. The baby’s version of an Epidural. They will put a breathing tube in the back of the mouth but no intubation so that’s a plus. Surgery should be a bout 50 minutes.

We have an incredibly happy boy! Not sure how we got so Lucky.

Update

Surgery complete 1121! Surgeon says it went well. Waiting to be able to see him now!

May 27th 2017

On By SMCLeave a comment

Water baby. RT loves the pool. I think he will be swimming pretty young!  Getting some sun, exercise and fun between the projects around the house. 

He gets so excited he starts to wheeze a little bit when he is working really hard so we take breaks between his super energetic swimming.  He is able to go longer now though before he starts wheezing. Looks like most of the same muscles as crawling so hopefully it will help with that.  We will have to get a child pool safety fence in the near future before he starts getting really mobile. It probably won’t stop him because it seems he will be a climber but it will help slow him down. 

May 2nd 2017

On By SMC3 Comments

As some of you may know RTs eyes were dilating differently than each other. Somewhat concerning due to his history and having a grade 4 IVH brain bleed when he was born.

We were not needing to follow up with any neuro doctor about his brain since the hospital. We were told don’t need anything unless something new prompts it. This was it.

We got an emergency eye doctor visit last week, the eye doctor said yes his eyes are dilated differently but was not too concerned given RT’s history with his eyes, agreed we should still follow up with a neurosurgeon and an MRI.

Reached out to the surgeon that did his PDA ligation to make sure the clip on his heart would not be effected by the MRI.

May 2nd went in for his MRI in the morning. They ended up moving our appointment with the Doctor later by about 3 hours, mom only found out because she was being thorough, not because we were notified that it had been changed.

To have an MRI you have to be still. Difficult for a baby to do.

They swaddled him up, strapped him to a board and inflated it to make it more ridged and secure, put ear plugs in his ears, wedges on either side of his head then a strap over the front. He was pretty secure and handling not being able to move really well. He did kind of look shocked.

Then off we went to the MRI machine. Gave mom my wallet, phone, keys, and glasses, can’t have metals near MRI. 

I put in my ear plugs and we put RT into the MRI. He remained calm til they tuned on the machine. It startled him and was ridiculously loud. He immediately began to cry. We pulled him out, gave him a binky and some sweeties and put him back in. He was startled again but not moving bad so we continued.  It was difficult to watch him cry for the next 15 minutes but we need to know if anything bad is happening in his brain.

I gently patted his legs and talked to him. It didn’t help much.

It was finally done, we popped him out of the board and we went back to the area mom was waiting at.

He calmed down pretty well once I was holding him. He leaned toward mom, he wanted some mommy time. She held him and he settled down the rest of the waay.

Now for waiting till the appointment to find out anything in a few hours.

Eventually it was time to see neurosurgeon. The waiting room was absolutely empty. Wonder why they had to push our appointment back so far. 

Nurse comes in and asks what prompted visit, give her a brief overview of RTs medical history.

In comes Dr. Explain some of it again.  He asks if we want to see the images.

Of course we do! He shows us, he scrolls through the different cut aways of the brain different scan depths. Looks pretty normal to me, but I’m no neurosurgeon. He says they don’t see anything that should cause his eyes to dilate differently, he also says he sees no sign of the IVH grade 4!!!!!

Absolutely Amazing! 

He says there is a little extra fluid around outside of brain, maybe slightly lower volume on the brain but overall looks good, especially for what he has been through. 

I ask if dexamethazone could have cause the lower volume and he says its possible.

He then goes on to tell us we should not require his services, our son is a miracle and it’s amazing he is still with us!

Your day changes a little from fear of seeing holes in your son’s brain on a MRI scan to relief when your neurosurgeon says your son is a miracle, and that he sees no signs of his IVH. 

Good day!

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