We ended our 4 month stay at Vanderbilt Children's Hospital last Wednesday. The last time we were being told we would be released was over 1 month and 1/2 ago and I was scared to death. That plan wasn't carried about because there were issues getting the nursing assistance in our area that we were told would be much needed regarding Lex's care. I was relieved at the time because the thought of bringing Lex home was so intimidating to me. After living that extra month and a half in the hospital and becoming more and more comfortable with Lex's situation I realize now that the delay was no accident. As each week went by I realized how eager I was now to get home and start living a real life again, despite the fears that I had. Finally, two weeks ago when Joe Mike and I were talking we decided that we'd had enough. We were ready to take Lex home with or without a nurse. We told the doctors and our case worker at the hospital this. At the time, Lex had an infection so I knew I still had a little bit of time to get more adjusted to the idea that the place that had been home to me for so long would be a thing of the past. Being a sentimental person, I kept waiting for this thought to invoke some kind of negative emotion-but it never did. All I felt was extreme excitement at the thought of escape. When the day finally came to leave, those sad and fearful emotions continued to steer clear. We headed home with huge smiles on our faces and haven't looked back since. I would describe looking back at the past four months would be like I was holding my breath the entire time we were in the hospital. The minute I sat down in the backseat of the Expedition next to Lex in his carseat was when I finally exhaled and life felt real and good again. I have never appreciated life so much as I do now and I am loving and cherishing every minute of it. Everything just feels happy. For many reasons, some that I haven't mentioned here, I can genuinely see a lot of what God has had in mind when looking back at April-August 2010. Part of 'the purpose', I would imagine. It definitely makes me a lot less anxious about what happens next.
So how is Lex doing? You ask. I never could figure out a good way to answer that question until recently. Lex is 7 months old, but he doesn't do things a 7 month old does. He doesn't smile, sit up, roll over, reach for things, etc. So that's bad, for a 'normal' 7 month old. BUT he has almost mastered rolling from his side to his back and is moving his neck better-that's good, for Lex.
Lex has many seizures each day in which he stops breathing, bad for any person. BUT there are days when he only has 1 or 2 seizures-that's good, for Lex.
SO, on Lex's scale-how would I say Lex is doing? I'd say okay, for Lex. We had an awesome ride home on Wednesday. He had 0 seizures!!! Show off...But the next day he had 13, after 6 in an hour we gave Ativan. Friday he had 16, Ativan twice. Saturday there were 10, Ativan again. Yesterday he had 10, but he kept them spaced out so no Ativan!! Woot, woot!! Today he has had about one an hour so far and is at a total of 13. He's kept them spaced out also, but they are much worse than usual. Lex seizure's aren't really like the typical seizures you imagine with shaking and all, but ever since last night he's been pulling that trick out of his hat-in addition to desaturating with them. So after reviewing his seizure performance since we've been home I'd say production is over double his normal seizure output and we're praying that it has something to do with his environment change and that he'll settle down soon. Either way we are still so thankful to be home with him and are loving every minute of it. We are still so thankful for everyones kind words, thoughts, considerations and, of course, prayers. We haven't brought Lex home from the hospital with a cure or even a way to 'quick fix' his symptoms. He is still struggling a lot and still needs lots of prayers. Thank you for loving him.
5 Reasons to Praise Jesus
1.) We're HOME!!!!!!!!!!!!!
2.) We really like Lex's pediatrician :D
3.) Lex is growing!
4.) We have so much great support and help
5.) Lex has been waking up more :D
“Jesus spoke to the people once more and said, "I am the light of the world. If you follow me, you won't have to walk in darkness, because you will have the light that leads to life."” (John 8:12 NLT)
Monday, August 23, 2010
Thursday, August 5, 2010
Praise Report x 5
Here are five very specific and big reasons that we are praising Jesus today.
1.) Lex is steadily gaining weight and is now over 10 lbs!!
2.) He has only had 1 seizure in the past 24 hours!
3.) He was sucking his binky again yesterday for the first time in WEEKS!
Okay, these next two are especially awesome so you might want to sit down.
4.) He TRACKED me with his eyes!! okay, so it wasn't for long but did you hear that?! he TRACKED ME!!
Are you still sitting? Don't get up, because this one is even more fun
5.) Lex rolled from his side to his back!!!!!!
Our favorite PT, Paige, was working with Lex yesterday and had him just laying on his side. We were just chatting while he was hanging out, and after a bit I looked down and he wasn't quite as far on his side as he had been. I questioned Paige to see if she agreed, and she did. So we just watched and he inched a little farther towards his back. So she got a rattle, actually a maraca (thanks Jen!) and started making noise on his other side. Who knows if that's really what stimulated him, but over about the next minute or so he slowly made his way to his back!!!
I get so excited just thinking about it. Ahhh...what an awesome God we serve.
"I will exalt you, my God and King, and praise your name forever and ever. I will praise you every day; yes, I will praise you forever. Great is the LORD! He is most worhty of praise! No one can measure his greatness!"
1.) Lex is steadily gaining weight and is now over 10 lbs!!
2.) He has only had 1 seizure in the past 24 hours!
3.) He was sucking his binky again yesterday for the first time in WEEKS!
Okay, these next two are especially awesome so you might want to sit down.
4.) He TRACKED me with his eyes!! okay, so it wasn't for long but did you hear that?! he TRACKED ME!!
Are you still sitting? Don't get up, because this one is even more fun
5.) Lex rolled from his side to his back!!!!!!
Our favorite PT, Paige, was working with Lex yesterday and had him just laying on his side. We were just chatting while he was hanging out, and after a bit I looked down and he wasn't quite as far on his side as he had been. I questioned Paige to see if she agreed, and she did. So we just watched and he inched a little farther towards his back. So she got a rattle, actually a maraca (thanks Jen!) and started making noise on his other side. Who knows if that's really what stimulated him, but over about the next minute or so he slowly made his way to his back!!!
I get so excited just thinking about it. Ahhh...what an awesome God we serve.
"I will exalt you, my God and King, and praise your name forever and ever. I will praise you every day; yes, I will praise you forever. Great is the LORD! He is most worhty of praise! No one can measure his greatness!"
Tuesday, August 3, 2010
UTI and C Diff
The past few weeks seem to have literally vanished. Week by week just passed by and I can barely make heads or tales of any of it at this point. I do want to give everyone a summary of the highlights that I do feel are worth going into detail about. July was spent searching for some way to get us home with the assistance of some sort of nursing program. Lex was technically discharged healthwise but they were not comfortable at the time releasing him without assisted care for us at home. With every weekly update the case worker kept coming to us with no progress (not her fault) and with disappointing news. After making a trip home (which we were told was crucial in furthering this progression) deemed itself to be completely unnecessary, it was discovered that it was pointless for us to be even attempting to figure out what Lex could receive until August 1st, for reasons that are still mind-boggling to me and would take a painfully long time for me to explain. So, at this point we are still waiting to see what will come of that. In the meantime, Lex was 'readmitted' due to a number of reasons:
1) His urine output suddenly became extremely high, causing his input to actually be negative. He was losing weight pretty steadily (though he wasn't gaining to begin with, but was at least holding onto what he had) so the Renal Team started to follow him. They couldn't find any issues with his kidneys specifically but will continue to keep an eye on that. We did find out that he was pretty sufficiently dehydrated because of how much he was urinating. So, he was put on IV fluids for a couple of days to help with that. His electrolytes were also off at this point.
2) I had noticed blood in his stool one night, which was shrugged off by the nurse, so I made sure to let the doctor know myself. After a couple of more occurrences like this one they tested him for Clostridium Difficile which came back positive. He was then put on IV antibiotics for that.
3) His urine culture also began to show infection so he was put on another antibiotic for a urinary tract infection.
In addition to all of these things his seizures have been worse over the past week. For a couple of weeks he only needed Ativan once a week, but this past one he ended up needing it four times. The days that he didn't need it were still not all clear. His seizures were just spread far enough apart that he didn't require Ativan (which is a HUGE blessing!)
Okay, so let's get to some positive things that have happened aka
Five Reasons to Praise. Actually I've just decided to change the name.
Five Reasons to Praise Jesus!
1.) The trileptal ween seems to still be going well, so we are continuing that. Despite the increase in seizures we don't believe the trileptal to be related and we're giving the infections the credit for that uprise. Please pray that this is the case and that when the infections are cleared that he will go back to his "baseline" (if you can even call it that)
2.) We are still in our same room and haven't had to move to intensive care for over a month!!We are SO THANKFUL for this!
3.) We do have something that helps his seizures when they're out of control-Ativan!
4.) He has some fantastic nurses ;)
5.) We have the most amazing and supportive people praying for us and encouraging us constantly. There have been so many times when a kind comment that I read on Lex's prayer page lifts my spirits up a lot. It means so much.
1) His urine output suddenly became extremely high, causing his input to actually be negative. He was losing weight pretty steadily (though he wasn't gaining to begin with, but was at least holding onto what he had) so the Renal Team started to follow him. They couldn't find any issues with his kidneys specifically but will continue to keep an eye on that. We did find out that he was pretty sufficiently dehydrated because of how much he was urinating. So, he was put on IV fluids for a couple of days to help with that. His electrolytes were also off at this point.
2) I had noticed blood in his stool one night, which was shrugged off by the nurse, so I made sure to let the doctor know myself. After a couple of more occurrences like this one they tested him for Clostridium Difficile which came back positive. He was then put on IV antibiotics for that.
3) His urine culture also began to show infection so he was put on another antibiotic for a urinary tract infection.
In addition to all of these things his seizures have been worse over the past week. For a couple of weeks he only needed Ativan once a week, but this past one he ended up needing it four times. The days that he didn't need it were still not all clear. His seizures were just spread far enough apart that he didn't require Ativan (which is a HUGE blessing!)
Okay, so let's get to some positive things that have happened aka
Five Reasons to Praise. Actually I've just decided to change the name.
Five Reasons to Praise Jesus!
1.) The trileptal ween seems to still be going well, so we are continuing that. Despite the increase in seizures we don't believe the trileptal to be related and we're giving the infections the credit for that uprise. Please pray that this is the case and that when the infections are cleared that he will go back to his "baseline" (if you can even call it that)
2.) We are still in our same room and haven't had to move to intensive care for over a month!!We are SO THANKFUL for this!
3.) We do have something that helps his seizures when they're out of control-Ativan!
4.) He has some fantastic nurses ;)
5.) We have the most amazing and supportive people praying for us and encouraging us constantly. There have been so many times when a kind comment that I read on Lex's prayer page lifts my spirits up a lot. It means so much.
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