Thursday, January 2, 2014

Good but not OK

I woke up this morning with puffy eyes! These bad streaks are really wearing on all of us! Reagan is back to good, for now, but I want to emphasize how bad these bad days are for all of us, but primarily for her. Earlier this week I was mad at the world! Why does our girl have to suffer like this? Why? Mike and I were talking about it the other night and he doesn't think we could handle the pain that she goes through on bad days. We'd have to be sedated or we'd go insane...but sedation doesn't work on her on these days (at least not anything we've been able to try from home). There's probably some high dose of narcotics or something that would work via IV, but hospitalizing her for 2-5 days every week or two just isn't an answer either! This isn't OK. What she goes through on a weekly or biweekly basis is NOT OK. Someone needs to figure this out! This has been going on for way too long...our girl needs some relief!! And the million dollar question, what's causing these cycles? Is there something we can do to prevent them or lessen the severity? Diet seems to play a role. When she was on that low calorie PurAmino formula at the beginning of 2013 (and losing way too much weight), she was doing great! Less bad days, no nausea! But as soon as we tried to add the calories back, everything got worse. And then again, when we switched to the Pediatric Compleat...the nausea didn't completely go away, but she was having less frequent bad days and certainly less nausea than she's having now. We definitely feel like we're back to square one again. So beyond frustrated for our sweet girl! When you see her on good days and you see how wonderful and sweet and happy she really is, it enfuriates you even more to know that she has to endure this hell so often. So unfair. We've got an appt with her neurologist tomorrow (they sqeezed us in) and I'm waiting on a call from her GI doc and I'm hoping we can brainstorm something, anything to help her! Please keep this in your prayers! She deserves a better life! So on to an update (I thought this was going to be an uneventful post, not so much)...Reagan continued sleeping last night...she was OUT. She did wake up around 4:30am, she was super sweet and talking, I got up and tucked her back in and she eventually fell back to sleep! She woke up for good around 8:30am with a huge wet diaper (thank goodness)! She had an early session of PT and she was super talkative and wonderful! She dozed back off around 10:30am all snuggled up in her bean bag chair (it's actually foam so it's even softer). She woke up in a great mood and ready for a session of speech. Her hands were in her hair a lot, but otherwise she was great! She's been a little congested today (sinusy), but I figured it was just from all of the sleeping she did yesterday. She's also been running a low grade temp of 99...her nurse has been monitoring it (sometimes it's 99, sometimes it's 98) so I wasn't worried. Then tonight I went to pick her up and she felt very hot to me. I thought maybe it was just from being cuddled up in her chair, so I picked her up and held her for a while. She still felt warm an hour later so I put her down and grabbed the thermometer...100.8 in one ear and 100.9 in the other (later going up to 101.2). I decided to go ahead and give her ibuprofen! We don't need this skyrocketing during the night! I'm a little concerned as to what this might be since Mike has had a sore throat and low grade fever for a couple of days...not good! Please keep my girl in your prayers! She certainly doesn't need sickness infringing on her good days! :(

1 comment:

Elizabeth said...

No, it's not fair. It's not right, and it's maddening. I'm so sorry you have to watch your child suffer. I hope the doctors can find some answers to give all of you some relief! Reagan and your whole family are in my daily prayers!