So I thought in 2013 when we heard a few times that we almost lost our sweet Peanugga that we would never have to hear that again. That we had things under control. Boy was I wrong! 2014 was full of huge developmental progress and growth and yet we still heard 4 times that "she probably would not have woken up". Those words are devastating even more so because it is solely my mommy instincts that prevented it. Sometimes there is no clear indication that something is wrong. It's just off and my gut gets this horrible feeling that something is really wrong. Thankfully all of our doctors listen to me and we've come through it okay.
The shunt revisions are horrible. Knowing that they are digging around in her brain is incredibly hard for me as one little slip could change our lives so quickly. Sugar issues are even worse. We had a scare in November, I thought it was just a coiled feeding tube as she wasn't tolerating feeds. We contacted Milwaukee and decided that we didn't need a med flight (we had already had 3 of them in 6 months) but that we would immediately head to Children's Hospital and would be a direct admit through the emergency department. Madilyn was starting to dehydrate and was tolerating zero fluids through her feeding tube ports but was otherwise acting completely fine. Imagine my surprise when they got her IV going in the ER and then checked her blood sugar and it was only 32. For those that know nothing about sugar levels 32 is organ failure and coma range. The nurse couldn't even contain her surprise as she frantically ran from our room in a panic. They said that Madilyn should have been completely lethargic and difficult to wake up (if she woke up at all) but not our little pistol. We had to mummy wrap her in a sheet and 3 of us had to hold her down to get her IV going. This causes HUGE concerns because once again she doesn't display any typical symptoms when there is a problem. During this 4 day stay we had to hear those dreaded words "for reasons unknown to us"...I get so tired of those words. They determined that Madilyn's entire GI tract just randomly stops working and they have no idea why. They've done scopes and blood work and meds repeatedly and there are no answers. Our teams of doctors are fabulous and you can tell it bothers them just as much to say it as it does for us to hear it...I can't even begin to adequately explain the way it makes me feel.
Since we came home in mid November things have been very difficult. Madilyn was supposed to have her routine eye exam under anesthesia in mid December and the doctor let us reschedule it until right after Christmas, this was a good thing as she ended up with round 1 of the croup and was on steroids and they wouldn't do anesthesia. Five days prior to the rescheduled trip she ended up with the croup again and this time it turned into pneumonia and we spent our very first overnight stay at our local hospital for observation for her breathing issues. The pneumonia/'croup diagnosis puts anesthesia off for 4 to 6 weeks due to airway narrowing. We were scheduled to go again in early February and once again failed the surgical clearance physical. Both of Madilyn's ears were infected again (5th or 6th time in 6 months) and her lungs were not yet clear, so we wait....another 6 weeks. We attempt again in March to pass the surgical clearance and pray, pray, pray that the fluid pocket on her right eye remains stable. In the meantime the ear infections have earned us another specialty to add to our list. We now have to see ENT for possible tubes when we go for our big cluster of appointments in mid April. Six appointments in 3 days plus x-rays makes for a very long week, especially since the Peanugga and I travel alone for those extended routine trips.
I always had the idea in my head that the older she got the easier this would be and I realize now that is not really the case. In some aspects it is easier, she is able to play with her toys and is mobile and is learning to talk so it helps. On the other hand it brings new struggles, she is mobile but is unable to walk on her own yet doesn't want to be held or carried so a simple thing like running into the bank or post office requires dragging a stroller everywhere because otherwise it's world war 3 as the Peanugga thinks it's perfectly acceptable to roll around the nasty floor wherever she chooses. The talking also brings about issues, she has words but not quite enough to express herself all the time which tends to lead to angry lashing out. She will grab at my face and arms and pinch or gouge at me (or whomever is closest) when she has no other way to communicate and is frustrated or overwhelmed. When we end up in seclusion when she is sick the progress we have made with transitioning in public comes completely undone. For example: Walmart used to be one of Madilyn's favorite places (even though I hate it..) and after not being anywhere we spent the entire first trip with her in tears and puking. We took her there three times last week just to have her out somewhere....I really need to find some better places to hang out..
We have now entered the world of sensory brushing and joint compression and are waiting (since November) for theratogs for Madilyn's legs. All of these things will hopefully help when she's on sensory overload or to somewhat avoid the overload to start with. I'm to the point that I'll try just about anything to attempt to make her life a little easier, for both of us.
We've had so much going on the last few months that I have not been keeping up with the blog. Sometimes I find things extremely difficult to process and I'm not sure how to share it without sounding completely negative, and I don't like negative as it gets us nowhere in life. So I will just share....the good, bad, up, down, ugly and amazing. I actually am beginning to thing that part of the problem is there is not enough pink in her purple/pink tennis shoes...maybe it's time for new pink shoes....because life is all about the little pink shoes..
