Wednesday, September 17, 2008

My kid is such a trooper!

Today Princess Bear (PB) had a cookie swallow test. For those who aren't familiar with this test it involves drinking various consistencies of barium while being x-rayed to see if you are aspirating or not. PB has gone through this tests basically since birth. We knew that PB had reflux within a few days (actually my best friend figured it out...I thought she was just spitting up!). Anyway, at 3 weeks old I was nursing PB who decided to add the first of many gray hairs to my head by turning blue while nursing. We were actually at the breast feeding resource center (PB was nursing for an hour at a time every hour and a half... she was killing me!) so they sent us to the pediatrician immediately. They checked her pulse ox numbers and decided the best route was admission into the hospital. Now please bear in mind that at birth PB was in the hospital for 5 days. We'd been home barely 2 weeks and we were back. Well, the thing we walked away from this particular hospital stay was that PB not only had reflux but she also silently aspirated....both during swallowing and during reflux for liquids to enter her lungs. She was sent home on an apnea monitor so if she did reflux enough to interrupt breathing it would sound so I could get help. She wore that awful thing until she was 10.5 months old. She was put on thickened liquids and has been on them to varying degrees since then. I told PB about the test last night because I didn't want to spring it on her. Its always a fine line with don't want to freak them out but what is worse being a little scared and having mommy reassure you or being very scared because a procedure was sprung on you last minute. PB is still very scared of shots after all of the needed ones for kindergarten and the last round of blood tests for the endocrinologist. I assured her that there were no shots involved and she seemed to be relatively ok with everything. This morning we talked about it again & she was ok especially because my mom was going to be there to pick her up and then for the test as well. What is it about the best laid plans?!!!? PB was in an assembly when I went to pick her up so I switched plans & dropped my mom off at work. The plus of her working at the hospital is that she can meet us whenever PB is in for anything. I explained to PB the change of plans and that she couldn't eat until after the test. That didn't go over so well. Finally its test time (I'll skip over the admission process....lets just go with the fact that PB is entirely too familiar with the hospital!) The test was going relatively well & PB was holding court as she tends to do. Every couple of swallows she would stop drinking and change who was holding her hand and who was holding the cups for her. I'm doing my best to keep her calm but also watch the monitor (you see things in real time) and listen to the speech path (who we've known since PB was a baby) and realizing that things are going as smoothly as they should. In the meantime my mom is promising PB that this is the last time she'll have to do this test....hold the my mom not watching the same test I am?!!!? I tried to nip this one in the bud but she keeps on murmuring over and over...this is the last time for this test. It was like laughing in the faces of the g-ds. Test finishes and ta da............. PB is still in moderate danger of aspirating. She doesn't need thickened liquids but cannot drink out of an open cup in the near future. She has to use a sippy cup (we tested 3 of them) or a cocktail straw (a regular straw would allow too much liquid). Now since we're having so many problems with the school I'm sensing a big problem with lunch time since they are doing such a good job monitoring everything else. The plus side of all of this is that PB went skipping out of the hospital with a smile on her face and acted like she didn't have a care in the world! Me...I was ready for a nap! kid amazes me and makes me so dang proud!

HM Sarah Siggy


Heather said...

Poor kid! She's been through so much, and so have you! I'm continually amazed that the two of you deal with these challenges on a daily basis, and still keep your chins up! Good for you!

Sarah said...

Thanks Heather! Its always nice to have someone let me know that I'm doing a good job- I appreciate it!

Susan said...

She's just taking it in stride, hon. It's most likely harder on you! Amazing what kids can do. (Says a lot about her mommy)