I would be lying if I said last week wasn't a trying one. Lex has never been a fan of stability (for more than a day or two anyway) so I wasn't surprised when day after day he was up and down and back and forth. He had okay days and he had worse days. Most of them pretty much packed full of seizures. We were moved back into the PICU on Thursday night after Lex was having one apnic seizure after another with no more than a 20 minute break between them-despite the two doses of Ativan he had already been given in the past few hours. They eventually calmed down a bit and began tapering into 'simpler' seizures without apnea. I call them simpler because I obviously prefer seizures in which Lex continues to breathe and doesn't turn blue. He had no seizures with desats for over 24 hours so back to the floor we went. He did well overnight here and the apnic seizures didn't pick back up again until early afternoon. And then Lex got 'Ativanned' AGAIN. He has done awesome since then, which is such a relief. I have caught myself more than once this weekend not looking where I need to be. It's amazing the difference it makes to focus on God and His will instead of worrying and thinking about what 'could' happen. Sometimes I stop and realize that I'm sad and worried and I think 'I should pray' and then for a second I think 'Oh what's the point?Nothing could make me feel better right now and I just don't feel like it'. But I push through that last feeling and then you know my entire outlook changes almost IMMEDIATELY and I am so sure I feel God with me and giving me peace. Also, tomorrow we will find out the results of the PET Scan. We're still praying for some sort of answer to getting these seizure under control and if this is the route that God is giving us then great! But still praying for peace and patience if this isn't the way we're going to be headed.
So this weekend I was given a moment of overjoying excitement in the midst of the steadily constant seizures and chaos. Backstory-Lex has a weak suck and aspirates when he swallows, so as you can imagine he has always had a binky issue, that is-he could never hold them in his mouth. We finally did find one that he could hold onto! It is very light and the nipple is constructed in a way where he can just hold it in his mouth if he got too lazy to 'suck' on it. It is really important that he continue using his binkys so that he can develop a good suck and eventually be able to eat orally (here's hoping!). Anyway, he hasn't been interested in a binky at all for a couple of weeks now. The other day he did decide that he wanted to take his old reliable that he can hold in his mouth. I was over the moon about this and just ecstatic to see him interested at all. Alright, here is the REALLY awesome part. Yesterday he seemed to want to have something in his mouth, but wouldn't open his mouth enough to fit old reliable in. So the nurse said she would get a hospital binky which I chuckled at because I knew there was no way Lex would have any interest and that he would instantly spit it out as soon as he got it. However-she brought it to us, I tried and it and you can imagine what happened, folks and there's a video to follow to prove it! In fact, I'm going to post a couple of Lex's binky videos for you to get a feel of how excited we are. Praise Jesus again! Thanks everybody!
Lex and Daddy fell asleep on the couch together tonight...my two guys were sleeping HARD...well, they still are. Oh! And Happy 5 Month Birthday Lex!!
So this weekend I was given a moment of overjoying excitement in the midst of the steadily constant seizures and chaos. Backstory-Lex has a weak suck and aspirates when he swallows, so as you can imagine he has always had a binky issue, that is-he could never hold them in his mouth. We finally did find one that he could hold onto! It is very light and the nipple is constructed in a way where he can just hold it in his mouth if he got too lazy to 'suck' on it. It is really important that he continue using his binkys so that he can develop a good suck and eventually be able to eat orally (here's hoping!). Anyway, he hasn't been interested in a binky at all for a couple of weeks now. The other day he did decide that he wanted to take his old reliable that he can hold in his mouth. I was over the moon about this and just ecstatic to see him interested at all. Alright, here is the REALLY awesome part. Yesterday he seemed to want to have something in his mouth, but wouldn't open his mouth enough to fit old reliable in. So the nurse said she would get a hospital binky which I chuckled at because I knew there was no way Lex would have any interest and that he would instantly spit it out as soon as he got it. However-she brought it to us, I tried and it and you can imagine what happened, folks and there's a video to follow to prove it! In fact, I'm going to post a couple of Lex's binky videos for you to get a feel of how excited we are. Praise Jesus again! Thanks everybody!
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