One Step Forward, Two Steps Back

We had a good couple of days last week. On Wednesday and Thursday, Bambino ate like a normal toddler for the first time in his life. His Feeding Therapist and Dietitian witnessed this on Thursday morning; he ate whatever I put out in front of him: two servings of rice porridge, a whole plum and then he munched on dried bananas and strawberries. We were all ecstatic. In addition, his bowel movement seemed to have normalized that we stopped giving him MiraLax. His Neocate intake is still low but at least he is eating normal food well; and his disposition is entirely better. For a couple of days he actually slept better, only waking up once during the night. The eczema-itches also gradually disappeared.

Dietitian P attributed this newfound appetite to three days of Periactin coupled with the Zinc supplement. I was beginning to hope we can scrap any plans of placing feeding tubes.

Then on Friday, everything was totally different. He refused to eat. He was constipated again and it's a lot worse this time. He would twist his tiny body while gripping on something in an attempt to push; his face red and contorted. This happens every half hour and it is heartbreaking to watch. And the worst part is that nothing really comes out but tiny pellets of dry and hard stool.

In addition, he also started to get a Netherton break out on Wednesday. I'm calling it the "classic Netherton" break out to differentiate it from his eczema breakout, which my husband and I believe he developed just recently. As a point of comparison, eczema is itchy and would affect mostly his hands and feet whereas NS is painful (like a sunburn) and affects his entire body. The appearance of the hives are also different and we've learned to tell the distinction.

So because his skin, mostly around his torso, is painful to touch, Bambino is just so miserable. He is not sleeping well again and he refuses to eat or drink anything. He evidently takes comfort from nursing and that's all he wants to do. I was able to get him to take MiraLax only with water.

This morning, I called the GI doctor for a number of issues: 1. his Zinc supplement is all gone and we don't have a refill. 2. What to do with the constipation 3. How are we going to proceed with the GI tube?

I'm still waiting for a call-back.

It seems like there's always something going on with my Bambino. Right now, I just wish the pain will go away so he can be a happy child again.

When Things Are Difficult

Bambino's breakout started on the 1st of December. Today is the 12th day. It started in his chest/stomach area and is now affecting his diaper/thigh/leg areas. I have stopped all steroids therapies and the only management I am doing right now is gauze wrap, and this thigh/leg area is a little bit tricky to wrap. After his bath while his skin is still damp, I apply a thick layer of Aquaphor original ointment. I have compared this task to putting icing on a homemade cake - only that this Sweetcakes would be squirming and screaming and crying in pain. It is heartbreaking. After Aquaphor, I would wrap the affected area with a gauze bandage to keep the moisture in.




My baby's legs and thighs are bad. Thick layers of skin are coming right off, and I can only imagine how painful it is. The doctors have compared it to burn wounds. Because the skin is literally peeling away, he is also more susceptible to infection and we try to keep the affected areas clean. I wash his diaper area with water and mild soap whenever he "goes."

His voice is now hoarse, his throat is sore from crying. My husband and I would take turns holding him because that's the only thing we could do. He would also take comfort in nursing and it seems like he would suckle all night long while he sleeps and a little movement from me would wake him up and he would start to whine. We give him tylenol every now and then, and hydroxizine when he starts to itch.

Right now, as I'm typing this, he is in my arms in the cocoon of my Maya sling, asleep. I am comforted by the fact that these will all come to pass.