August 19, 2012

And the Diagnosis is...

So after lots of testing and medicating and waiting and watching, Jaren's flesh eating skin rash stopped growing and started to heal. The doctor's didn't know what it was for a long time. We were worried it was SSSS (Staph. Scalded Skin Syndrome) If you're ever bored google that, Goo! We thought it might be a white-tail spider bite. In the end it was Bullus Impetigo, a type of staph infection. 

Apparently the staphylococcal bacteria is everywhere and is not uncommon for kids to get it. People had donated some diapers (nappies) to us that were getting a bit small for Jaren and we were almost through the packet but I noticed it was making his leg a little red. This then caused a bit of an abrasion, and then he got sick independently and somwhere in that process they think his skin became infected.

They said there was nothing that we could have done to prevent this, although if he continues to become infected Varian and I will be tested as carries of the bacteria. Sad. He actually has gotten it once since, but because I knew what to watch for we quickly treated it before it could get so nasty. He never struggled with even diaper rashes before this and now his poor skin seems very sensitive and prone to rashes and mystery spots. It's very disconcerting. 


Doing his dressing was a major ordeal, and in such a horrible location, as it was a crease and you couldn't really secure it well, and Jaren would want to crawl around which would make it slide all over. Basically we would sterilize it, cover it with this mesh that was coated with a suave called bactroban, then we'd put down two different layers of padding, then we'd cover that in a tube like sock that was cut off to just wrap around his leg, and then we started putting a larger band around his waist which we would poke holes in to then thread and make ties into the thigh band to try and hold it up...sounds complicated? It totally was. 

Now imagine having to repeat this every time he did a dirty diaper, or one of the medical teams needed to inspect it, or his wet diaper had just dirtied it too much as well. (Or doing all alone at home once they discharged us). Sometimes we would be doing it 7 or 8 times a day or more. It was exhausting and worrisome, as to keep changing the dressing could open it to further infection. 


As a side note, he's wearing is "Irish I was Irish" shirt here because I took him in on St Patty's day and we had planned on having a St Patrick's Day dinner that night with Lani and Cameron, but instead were hospitalized for the week.


But to finish up the hospital story, things continued to go well. He stayed there that week and I slept next to him in a lazy boy chair (that actually for my big pregnant self was shockingly comfortable.) I have a new found respect for nurses and how they really can make or break your hospital stay. They do so much grunt work and really look after you where as the doctors would just stop in now and then, the nurses did all the behind the scenes work. 

Below is a picture of one of our favorite nurses (compared to the one in the next picture who ended up being so mean). The doctors promised me when they sent me home that they would send me home with all the supplies we needed to take care of his skin, but that last nurse had a vendetta against giving us the supplies and was really nasty about it, despite the numerous other doctors telling me that I could have it. In the end one of the Janitors snuck me out some of the supplies and bless his heart for doing so. 

But in her defense the first day she was in charge of us I thought she was pretty nice and had a lot of dirty work - literally. So the head dermatologists felt strongly that the diapers were the main cause, or at least were aggravating the condition. So she wanted us to only use cloth diapers, but the hospital didn't have any. So one of the nurses decided to just wrap a towel around Jaren and thought that would work. Well maybe had he been 4 months old instead of 14 months it might have. Even sick, Jaren is way too active to just keep a towel around him. 

I went out to go tell this angry nurse that it was falling off and not really working and on coming back Jaren had urinated all over the place (literally - it was the other mom/patient in the room who told me and pointed out the puddles everywhere) and as we rushed to come clean it up he then poo'd all over his bed. Goo - sorry for the TMI but it was seriously a disaster. So angry nurse helped me to get him in the bath while she proceeded to clean up and sterilize the crib. Poor thing. No wonder she was angry  She just got busier and angrier and to get her help to change his dressings would spark her wrath, but nice nurse taught me how to do it myself so I tried to bother angry nurse as little as possible. And can I say that that was my first and last attempt at cloth diapers.  A million kudos for all our poor mothers who had to deal with this.

So all our family was of course wonderful. We had lots of prayers and skype/phone calls with family back home, and lots of visits and meals brought in from our Australian family and new fabulous ward. Jaren was strapped to an IV for most of the time  - oh freaky story, I started to get paranoid that his tubes would wrap around his neck at night and choke him and started waking up repeatedly to make sure this wasn't happening. I told a nurse this who totally dismissed my concerns and that very night I woke up to find it wrapped around his neck as he had turned and rolled around in his sleep. I made them come and take it out and had felt a bit justified, but negatively so. They did still say he'd be unlikely to suffocate since it was a soft rubber cord, but I wasn't going to test their theory on that. 


But mostly Jaren just continued to get better. He did break out in this secondary rash all over his back and face and chest, you can kind of see it in that first rash photo above, but I don't think I'll go back now and add a specific one. They took him off the codeine in his drip and that new rash cleared up. He just wanted to be held a lot, and so I brought toys and books from home and we would take him for walks around the ward and look at all their pretty paintings on the wall, or play in their toy room. Here are some photos of Jaren at the end where he started to get his energy and happy personality back.

Look at these cute Jaren smiles!

After going home I continued doing his dressings and medications for about 2 weeks, and went in for follow up appointments. I should take a photo now so that you can see he's all recovered and fine. Occasionally you can see a faint outline of this infection, but only in certain lights and if you're really looking for it. For the most part it's all healed up and his skin has been fine. So thank you again for everyone who helped us during this time, and for all the answers to prayers and peace we felt through this all. And here's to hoping this was a once in a lifetime experience. :)

ps: People back home are very anti-socialized medicine. I don't frankly know all the details or how some countries socialized medicine is better or worse than others, but I have to say we've really appreciated the health care system here and how great they have been to us, especially when it concerns our babies. They've been wonderful and attentive and have been so thorough and careful in getting us the treatment they need. Yes it kind of bites sharing a room with 2-5 other moms and their babies, but it's a small price to pay for "free" health care. I shudder to think what this would have cost us in the states!

pps: I'm sorry my posts keep ending up being such novels. Soon I'll try and do really short post of mostly pictures to give people a break who are following. :)


Felicity said...

Poor Jaren! Those pictures are just awful!! So glad he had a full recovery and love his smiley pictures at the end!! Such a gorgeous happy boy!

ps) you should watch the michael moore documentary called 'sicko'! It's all about the american health care system and it blew me away (it also made me want to move to france......haha)!

The White's said...

Poor Baby! That looks horrible. I am glad it has healed though. It is so hard to watch your kids go through stuff like that and feel helpless. How are you doing Leah?