Monday, July 2, 2012

Maybe next weekend will be better

So apparently this summer is really hindering my blogging, but I swear I have a good reason this time.

Tera has not had a good couple of weeks.  At this point last year we were commenting on how lucky we seemed to be that she hadn't gotten sick and that maybe she'd just be a really healthy kid; and then month six hit and we've been trying to recover ever since.  I have to say though, for all that she's been through in that time, we've never had to go to the ER; until this weekend. 

Friday morning we went to Gigi's with Tera's aunt and uncle, she got to play, and then we headed home for therapy at 1:00.  My sister was also coming over to paint our bedroom in step two of the master bedroom rehab project.  She napped and we woke her up for therapy around 1.  During therapy since she hadn't eaten lunch yet, we fed her so that she could actually eat and also so the therapist could see how she did with self-feeding.  She ate pretty well considering her appetite had been touch and go for the whole week and after the therapist left, my grandma showed up for a little visit while my sister painted.  Tom was off for the day and had Tera downstairs playing for a while when she started to get a little cranky.  She hadn't napped real long so we figured she was tired and so he tried giving her a bottle.  A few drinks in she threw up, mostly on herself and a towel, a little bit on Tom and a little on the couch.  Not a great thing, but not really a sign of anything yet. 

I took her upstairs, we cleaned her off and she was tired so I tried rocking her in the chair in her room.  All of a sudden I felt it in her stomach and I had just turned her around when she threw up again, this time almost all on me.  Tom took her to wash her off, I cleaned up, and tried calming her down.  Then it happened twice more.  By this time I had Tom calling the doctor because she was now exhibiting all the same symptoms as the last time she had pnuemonia, but now her breathing was labored also and she had a fever of 100.  The doctor told us to come in and after a very short visit, a temperature reading of 102, and a nebulizer treatment, she sent us over to the ER for what she also suspected as pnuemonia. 

Once there they were able to get us right into a room and Tera was completely wiped out.  She had nothing left in her and her fever was now 104.  They gave her tylenol and motrin right away to get her fever down and began the process of trying to get an IV in.  I'm not a doctor or a nurse, but even I can tell it has to be zero fun trying to find a vein in a 16 month old.  After two tries, the poor nurse called in two other nurses to try and they finally had to put it in her hand.  Once she was settled, Tom took off to run home and get us some overnight stuff and pick up some food.  The pediatrician had told us she would probably have to stay overnight at least for observation, but by the time the pediatrician at the hospital saw her chest xray and listened to her, she told us to prepare for what could be a few days.  By the time Tom got back they had moved Tera to a room in the children's wing and she was awake again.  They were going to be doing nebulizer treatments every three hours to try and keep her oxygen levels up and she was getting fluids to replenish her after all the vomiting.  They had also already given her the first round of antibiotic. 

Since she was awake again and it was 10pm, Tom and I alternated trying to get her back to sleep and inhaling dinner since we were both starving.  There was only one bed (and bed isn't really the best way to describe a wooden shelf with a pad on it) and one chair that I didn't realize reclined so we were going to take turns "sleeping" on the "bed".  I had just about given up hope of her going back to sleep when she finally did around 11:45pm.  Tom woke up as she was going to sleep and we attempted for the next four hours to share the "bed".  Around 4:15 I couldn't sleep anymore and moved to the chair where I was pretty much awake until she got up around 6. 

By the time she woke up she was feeling much better, which was good and bad.  Of course I didn't want her to feel sick, but then the realization that we would have to try and figure out how to entertain a very active child hooked up to an IV, a pulse-ox monitor, and confined to a crib, set in and panic ensued. 

Around 8am family had started checking in and we quickly realized we needed reinforcements so we planned to have Tera's aunt and uncle come late morning and Tom's parents early afternoon.  I don't think the three of us would have made it without them. 

When the doctor came in around 9 and listened to Tera's chest, she was amazed at how much better she sounded and told us the words we had been hoping for all night; as long as she continued to improve, we could probably go home that night after they gave her the next dose of antibiotic.  We were elated and began not so patiently counting down the hours.  We napped a little on and off when she did and Tom's parents brought us lunch (this weekend was not great for dieting purposes) and then the time really slowed down.  Finally they came to do the antibiotic and that's when they realized her IV had somewhat slipped out and they wouldn't be able to give her the last dose that way.  The nurse wanted to see if they could do it orally, but it ended up that she had to have two shots, one to each leg, to get the last dose.  Needless to say she was not a happy camper and since by that point we were already coming up on her normal bedtime, it took everything in both of us to get her calmed down until we could leave.  Fortunately that didn't take much longer and by around 9:30 we were finally on our way home.

So that's the really fun tale of our weekend and the reason for my lack of posting these past few days.  One of the things I realized is how calm Tom and I both are in times of crisis.  Neither one of us panicked or overreacted, we were both level-headed in the ER, and we still managed to maintain a sense of humor (upon the second attempt at an IV we told Tera to man-up; the nurse thought that was hilarious and I hope he knew we were kidding).  We did begin to lose our sanity a bit around mid-afternoon and early evening on Saturday, but that was completely due to lack of sleep and on my part, I think the fact that I was and am fighting the same virus that put Tera in this whole mess. 

And of course what do you do during and after a weekend like this but reflect on how much it sucks that your child is going through it and wish with every bone in your body that you could fix it, and at the same time realize how much worse it could be.  That's the part that always plagues my emotional state.  I know that she is going through more than a lot of kids do, and probably will for some time because she just can't fight stuff the same way other kids can.  But on the other hand, I just cannot fathom how I could handle watching her battle cancer, or have open heart surgery, or so many other things that so many other kids do. 

 A slightly less common fact about DS is that there is a slightly increased risk for kids to get leukemia and so in my online groups of other parents of kids with DS, I've come across far too many stories of parents posting about a whole different diagnosis; one that has far more implications than the one they originally thought might.  Also, it is not uncommon at all for babies with DS to have open heart surgery.  I know many parents who's kids have gone through it; sometimes more than once.  I read these stories and I think to myself that if all we have to deal with is pnuemonia, I will consider myself lucky every single day. 

Thank you again to everyone for the well wishes and good thoughts.  It makes things like this a whole lot easier to manage when you know you have so many people willing to do so much to help and is definitely one of the other reasons I consider myself lucky every single day. 

In the ER passed out after finally getting her IV

On Saturday feeling much better

One of the many times trying to keep her entertained.  The red light on her toe is the pulse-ox monitor.

Right after she finally got the IV out and was one step closer to being sprung.

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