Archives for category: infection

Today, as I was getting Lizzie dressed, I was running a commentary as always.  I was telling her what a wonderful day it was and that since the weather was so nice that I definitely had to get her outside.  Yesterday we used her gait trainer outside, and she did really well with it.  Today I wasn’t sure if we should use her gait trainer again, or use her bicycle.  I mentioned this to her and I was finishing getting her dressed, and she started making “Buh,” sounds.  Now since the beginning of time for us, we’ve called Lizzie’s feedings babas since they started as bottles.  I looked at her smiling and saying “Buh, buh,” and I thought that’s what she was doing.  Never mind that b’s aren’t a common sound for her. I asked her, “Are you hungry, do you want a baba?” and then I saw her smile fall and I said, “That doesn’t make sense, you just had one.”  Then something occurred to me and I asked, “Bike?” she looked at me, and I asked, “You want to go on your bike?”  Her face lit up.  Now I don’t know if this was a fluke, or she was trying to say bike.  I’m praying it’s the latter. Image

So, a little while later after I pulled out the bike and cleaned the dust off of it from storage, I put her on it, and we did our usual walk around the circular street where we live.  Miss Lizzie was really pulling on the handlebars today, which was causing me to have to hold tight to the push handle and battle to keep her from veering too far.  I had just decided to walk around the front to flip the handles out of her range of grasp, when she started moving!  Lizzie was pedaling all by herself!  With the exception of a couple of times that I had to give her a nudge to restart her, she must have gone about 30 to 40 feet on her own.  I am completely amazed.  My eyes were tearing up.  I was so proud of her.  This is the first time she has ever done it alone.


Okay.  I have had it.  I wrote yesterday about our wasted visit to the hospital to see a surgeon who did nothing but ask us to come back Friday.  I was already angry about that.  This morning they called me and said that the doctor will be going out-of-town tomorrow to have surgery of his own, and would we be able to come in next Wednesday.  I think my heart missed a beat, and steam may have shot from my ears.  I lit into his assistant.  We were just there yesterday and he did NOTHING.  We were brushed off and asked to come back on Friday.  Are you seriously telling me that he didn’t know he was going out-of-town to have surgery of his own?  I’m sorry, I have a tendency not to believe this, as we’ve been brushed off by his partner for sudden out-of-town excursions.  It is unbelievable at this point.  I was told that we could see him Wednesday.  That’s my son’s first day of school.  She said, well we can get you in early he starts at 7:30.  I repeated, that’s my son’s first day of school, and he goes from 8:30 to 9:30.  She then told me that we could see the partner (the first doctor to blow us off numerous times) on Monday instead.  I said at this point I didn’t care who we saw, as long as someone actually took care of this.  Yet, somehow I ended up with an appointment on Wednesday at 11:00.  I am livid.

I am pretty sure, that by this time next week her abscess will have dried up and there will be nothing they can do.  Then a week later it will crop up again, and the surgeon will probably be on vacation again.  I am beside myself.  This is ridiculous.  These doctors seem to spend more time out-of-town than in.  Is that anyway to run a practice that is supposed to take care of kids?  I pray to God that we never need actual surgery from these guys.  I am sure getting a follow-up appointment is a joke.

We went to see the surgeon today about the abscess by Lizzie’s feeding tube.  They called me back yesterday, and told me they had an opening at 9:00 am, and could we make it in?  Of course I jumped at the appointment, thinking we were being made a priority.  Then I was told that the doctor would be squeezing us in.  Between surgeries.  How that is an opening to see the doctor, I don’t get.

So, we went today.  We only waited about 20 minutes, which surprised me, because with our “standby-for-an-opening” status I expected to wait an eternity.  However, we got in the room, the doctor came in, looked under Lizzie’s bandage, and said, “Looks like we have a small abscess there.”  No, really?  Why did he think we were there?  We just happened to have an appointment, and oh goodness this abscess just cropped up.  I mean, really, did I need him to tell me what it was?  We made the appointment because there was an abscess.  I needed him to find out what is causing it.

So, he says, “Do you live nearby?”  I thought, Why?  Are you coming by our house later to take care of this?  Then he says his next patient was being put to sleep, and asked if we could come back Friday to have the actual digging and cauterizing done.  I mean, as if that wasn’t horrible enough the first time, now I have to anticipate it for three days?  It’s times like this that I am grateful that there are things Lizzie cannot understand.  How horrible would it be if she had to anticipate this for three days?

The assistant tells me, “We’ll just give you back your co-pay and your referral, and it’ll be like today’s visit never happened.”  Maybe for you.  But you weren’t up late last night with a sick dog, who you weren’t sure would make it, only to get up, get ready, get your kid ready, get her feeding ready, get her medication ready, load her in her wheelchair in the car, and head to the hospital (wasting gas and money), breaking your neck to be there by 9 am, only to go to an appointment that on the books never existed.  Really?  I wish we hadn’t gone.  Why couldn’t they have just scheduled us for Friday in the first place?  The last few times, when our pediatrician called to get us the appointment and the abscess was really angry-looking and draining nasty stuff, did they care about us coming in right away?  Did they break their necks to get her in?  No, they told us the doctor was on vacation, and how would it be if they fit us in a week and a half from now?  Now, when the abscess wasn’t that bad, we called to make our own appointment, and they had no time to see us, they squeeze us in only to be basically rescheduled?  Does that make sense to anyone else?  Because it sure doesn’t make sense to me.

I’m hoping we finally make some progress and get to the bottom of things on Friday.  This is getting to be a nuisance, and Lizzie and I are so ready to be done.

Lizzie has had a g-tube (gastrostomy feeding tube) for many years.  It’s been pretty easy to use, and we haven’t had much issues with it, until recently.  Within the last 3 months, she has had repeat infections in her g-tube area.  The stoma, which it the circular opening that surrounds the plastic tube, has been getting a bubble on it, which then fills with pus and drains.  We have done multiple courses of antibiotics, and had it opened up by a surgeon more than once. It just keeps coming back.

The last time it cropped up, back in June, we visited a surgeon, who cauterised the infection.  This is the worst experience I have ever been through with Lizzie.  They gave her a shot of lidocaine first, which I’m not sure did anything really.   Then after a few minutes, the surgeon used a pair of scissors to cut off the top of the bubble.  That wasn’t really the bad part, Lizzie was mad about being held down, but not about the procedure.  They cleaned out the pus, and looked around inside the wound (the theory being they would find a surgical stitch or some other foreign body in the wound that was causing it to fester).  When they didn’t find anything, they took out the silver nitrate sticks.  I thought they were going to just burn off the edges of the wound.  I was caught off guard when the doctor stuck the stick into her wound.  She let out a scream, like I’ve never heard.  And a few thoughts went through my head: 1: Thank, God, her brother wasn’t with to watch this., 2: why would they make me help hold her down for this, 3: (and most importantly) poor Lizzie.  It was horrible, and seemed to take forever.  She screamed through the entire procedure, as I tearfully apologized over and over again.  I was shaky afterward, and my heart took a while to return to its regular beat.  Lizzie slept afterward, obviously because she was exhausted from the ordeal.  The ironic part was, Lizzie has been to the hospital for much lesser events, and given stuffed animals and toys, this time, after her horrible ordeal, she didn’t get as much as a sticker.  It seemed wrong somehow, like adding insult to injury.  I mean not that they should give her something every time she goes, but with something that awful it seemed she should have something to make it up.

The scar looked black and burnt for a couple of days, and then slowly healed.  At first it didn’t come back, and I began to think that at least the trauma had been worth it.  Until this week, when the bubble returned.  I took Lizzie to the pediatrician on Friday to have it looked at.  She didn’t even give us an antibiotic this time, just a referral back to the surgeon.  I couldn’t even bring myself to make that call on Friday.  I’m not ready to put her through that again.  Don’t get me wrong, I will call first thing on Monday morning.  In the mean time, I’ll be praying it resolves on its own again.