Tag Archives: Nystagmus

Deja Vu

25 Mar

Earlier this week we ended up back in the hospital with ladybug. After being discharged last weekend she just became more and more lethargic. She would only stay awake for a few minutes at a time and was like a little wet noodle when I tried picking her up.

I’m quite glad we did because her test results showed she had an infection of some sort. They thought perhaps it could be meningitis – two attempts at lumbar punctures were made neither time they were able to be successful. (Because her blood work didn’t suggest meningitis this was taken off the table.) She was hooked back up to an iv line and this time they added antibiotics.

Within a few hours of us being back in the hospital my lil bug started having these screaming fits. I can only describe them as being similar to contractions. They would come and go in waves and each time they seemed to be getting worse. Typically when she is upset or not feeling well a snuggle from mommy always helps. No matter what I tried, or how close I held her nothing seemed to ease her pain.

The docs had no idea what was causing the pain but knew that it was originating in her tummy.

Here is where the deja vu set in. 8 months previous ladybug was admitted into the hospital initially for a mysterious infection, then came the GI bleed and a source could  not be found.

Were we really going through this all over again?

Aside from low white blood cells, and high liver enzymes everything else appeared normal. We always joked about how she likes to keep everyone guessing I’m beginning to wish this wasn’t the case.

An x-ray was done on her tummy and there was one finding in particular that was quite concerning (I’m not really going to go into details until we know for sure). Because of this the docs decided to give her a lovely little antibiotic cocktail a mixture of 3 different types with the hopes that this would resolve the findings without getting surgery involved.

The pain has continued for most of this week – not even morphine was helping. Several repeat x-rays were done and finally today a very slight improvement was shown.

As great as it was knowing that the x-ray results were improving – the best indicator to let us know my daughter is on the mend was that she was smiling today for the first time in weeks.

She still isn’t being fed anything just to rest her little tummy, but is on TPN (vitamins and nutrients via the port-o-cath). Possibly by early next week she will start slowly on pedialyte then gradually resume her regular feeds.

We have noticed that her Nystagmus (involuntary eye movement) has become more frequent and lasts longer so neurology should be coming to see us and setting up a second video EEG on Monday. Which is really good considering we’ve been trying to get in to see her neurologist for months now and our appointment keeps getting pushed further and further back. I can’t begin to describe how frustrating this is, but that’s neither here nor there.

I’m so grateful for the continuous support from everyone. I’m constantly looking to our CDG family for advice and possible answers for everything that we’re going through, and even though at times I may feel like I’m exhausting that fabulous resource – no one else ever does.

Like before, it’s a day-to-day process and because of the CDG that process may take a wee bit longer but eventually we will get there.