Health updates

After talking with Brenna's dermatologist on Monday, we decided to take her in just to get checked out. We feel a little ridiculous running to him every time we think her skin looks "different"...but by now, we know her skin well enough to know what it should and shouldn't look like. And Dr. Conlon reassured us by pointing out that we've never come in unnecessarily.

Upon seeing Brenna, Dr. Conlon agreed that her skin did look very concerning and said at first glance, he would guess she had staph again. The problem was that she'd been on antibiotics for staph for a week. And after he said that, with us having just come home from the hospital, the thought of MRSA completely occupied our worried minds that night.

The cultures came back today positive for two infections - E. coli and klebsiella pneumoniae. These two types aren't typically present on the skin (like staph is, for example) so it's almost certain that she picked them up at the hospital.

Fortunately, the medicine that Dr. Conlon switched her to on Monday is the antibiotic that targets both of these, so Brenna is covered and on the road to recovery! She began to look and feel better yesterday, after several long, miserable days.

For the majority of this week, she has been in a lot of pain. I haven't even been able to hold her very much because she cries out and arches her back as if in pain and trying to evade my hands every time I pick her up. I've been trying to keep her comfortable in her swing or bouncy seat where she doesn't have to endure constant touching on her obviously hurting skin.

I am so thankful yesterday that Brenna finally seemed to be in less pain. She wanted to be held and cuddled more, and her cry was back to more of her sassy self versus her cry of discomfort.

Yesterday, we also paid a visit to the pediatric surgery clinic at St. John's so they could take a gander at her surgical site. The stitch holding her g-tube in place had actually pulled completely out and is now just attached to the tube itself instead of her skin, and the hole had grown a bit. We are now using a cut-up baby bottle nipple to hold the tube in place, and it's quite awkward! We are hoping to switch from the actual tube to a much smaller "g-button" as soon as possible.

Speaking of the g-tube, we have pretty well mastered its use, but Brenna has still been experiencing some vomiting. We got a pump today, so that we can hook her tube up to it and it will feed her over a longer period of time. 

We are also starting with a new feeding team that includes a GI doc, and I am so anxious to get this show on the road and figure out what is wrong with Brenna's system that is making her throw up and not want to eat! 

Today was so frustrating for me, and I teetered between wanting to burst into tears or throw things in anger. Brenna was vomiting after every feeding, and then when the new pump was delivered and we were ordered to spread her feedings out over an entire hour, I was less than thrilled at the idea of her being hooked to the machine for a third of the day. I was questioning our decision to even get a g-tube, and I was so angry that what was supposed to be a huge relief to our family was just turning out more problems. And I was frustrated that the process to uncover the underlying problem of her not wanting to eat seems to be moving so slowly.

But getting the cultures back provided a little closure in my mind, knowing that we had figured out the infection and were treating it properly. And I started trying to be optimistic about the g-tube pump, considering that we can feed her continuously through the night at a very low rate of speed to get her more calories and fluids (now I'm just praying that she doesn't throw it up - I might be a nervous wreck the first couple of nights.)

We have an appointment with our GI doctor next week, and in the meantime, I hope for my sanity's sake that things will be looking a little up very soon...