Goodbye Hospital-The End of an Era

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)

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!"

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.

New News!

Crazy, crazy times. Last week was the most awesome week we've had with Lex since mid-April. Lex went 9 days and only on 2 of them did he have desat seizures!.That is AWESOME, people!! We had really high hopes that the new medication he started a couple of weeks ago (Sabril) was responsible, and it may have been. Unfortunately we started noticing some unusual jumpy motions that we hadn't seen before, which I finally admitted to myself looked like spasms on Saturday. After showing a video that I caught of it to the neurologist they set him up for a continuous EEG until they had the info they needed. They have special Epilepsy monitoring units-which at one glance would appear to be like any other patient room. The difference is that there are cameras and microphones set up so that they can get detailed video and sound of the seizures. Of all the EEG's Lex has had we've never stayed in one of these rooms before. At first it wasn't so bad, other than having to leave what has become "home" to us on the 8th floor. The idea of being on video wasn't exactly thrilling to me, but I was willing to deal. It wasn't until later that night that the creep factor set in. The camera's moved-they followed Lex around anytime we picked him up and moved him. The creepiest part? Someone was sitting out there watching and making the camera's follow him! I was so not a fan of that, but again-I dealt with it, Lex had a hard time of it though-he's a tad camera shy. He had many spasms through that night and the next morning which were confirmed to be seizures. Monday morning (before they had taken the EEG off) Lex broke his 4 day desat-seizure free streak. I was holding him and noticed that the inhale-exhale rhythm that I've gotten quite attached to had stopped, and looked down to see his mouth twitching. Despite the fact that we were told to never expect Lex to be completely seizure-free, we were hoping that at least maybe these pesky desat seizures would leave him alone! He went on that day to have several more and has been having multiple seizures (in which he likes to do magic and change colors-particularly blue) daily.
Last week we had also began to wean his Keppra, but when the infantile spasms decided to stop by for their unexpected visit, the doctors invited Keppra to come back and stay a while too. He will be back up to his previous normal dosage today. In addition-medicine #7 would like to introduce itself. Everyone say "hello" to Zonegran. He starts today and we're hoping to see some seizure control within the next few days so that we can then begin to wean Trileptal. We need lots of prayers everyone. There are fears that Lex's underlying condition continues to worsen more and more which is why it seems nearly impossible to get seizure control. Sometimes it is so hard for me to not give into this mentality. I have to really stop and catch myself and remember my faith and where to put it. Every now and then I tend to pick up my faith and say "hey, I'm going to set it right here for a while-yep, I like it there", but it doesn't take very long and I notice that my entire mood, outlook and attitude is completely negative and just sad. This isn't to say that I stop putting trust and hope in God, I just lose focus every now and then and need a little reminder. That's when I really feel like I'm being tugged on. So I pick my faith back up and put it right back where it belongs-in Jesus, guess how I feel after that? Hopeful, strong, encouraged and confident. "If God is for us, who can be against us?" (Romans 8:31). So, we are just praying for seizure-control, someway, somehow-we're not picky :D. More than this we always pray that God's will be done, whatever it may be.
Also, to quickly update you guys on the home situation. We are basically only still in the hospital because there have been issues regarding the nurse situation. No home health companies in the surrounding counties are willing to accept him due to his..complexities, shall we call them? There are other options that we are looking into that our insurance may cover in which we could get a private nurse. Unfortunately it doesn't look hopeful, but we are trusting that God will provide in some way. We do feel that Lebanon is where we are being lead and that is where we intend to be, for a while anyway.
So I've decided to start including five little happy times in every entry I make in all things Lex related. We'll call them:
Five Reasons to Praise
1.) No seizures for 5 hours now
2.) The head of neurology has taken over all medication decisions
3.) He loves sucking his binky again (even if it is the easy one :p)
4.) Tolerating all of his feeds very well
5.) He's been staying awake despite being on 6 seizure meds which are very sedating (pray he keeps it up with the introduction of #7!)
oh and f.y.i. we got to keep our room on the 8th floor!

Joe's First Daddy's Day

I'm sure Joe Mike never imagined that his first Father's Day as a dad would be spent staying with his son in the hospital. I know I never envisioned it that way,but that's the way it was. So Lex and I put our heads together and tried our darndest to make it a good one for Papa Joe Joe, as he likes to call himself. I made a onesie for Lex to wear as a surprise for when he got here afer work. Naturally he looked like a bundle of cuddly cuteness, can't you tell? We watched Avatar and laid together with Lex between us. It was such a great feeling. Unfortunately Lex began having seizures that night, but JM didn't let it dampen his good mood. We just enjoyed each other all night and soaked in the goodness of the situation that we're in, despite all of the bad that typically seems so prominent. Lex is so blessed to have the dad he does and I am grateful that God chose us to be his parents.

CPR Training

Joe Mike and I both had CPR training a week after Lex was born when he was going to be released from the NICU. As we sat in the room and the instructor described to us each step to take if we noticed that our baby wasn't breathing we quivered at the thought of that happening. But deep down inside we knew it wouldn't happen, you know that feeling? The one where you really think nothing bad is going to happen. The night when we were at home sitting in bed with Lex between us playing with him and we looked down to see him turning blue was indescribably horrifying. I panicked instantly and handed him to Joe Mike who tried to stimulate him while I ran for my phone to call an ambulance. In the meantime I reminded him of the steps that I could recall from our CPR training which had been only a few weeks before. He began doing chest compressions and mouth-to-mouth and soon after, Lex regained consciousness. Joe also performed CPR on Lex on one other occasion. Although the doctors don't agree with me, I don't believe that the CPR was necessary in either instance, looking back with the knowledge of Lex's seizures now. Though his SATS drop to zero and he does turn blue, he always begins breathing on his own. However, there is no way to know that for sure which is why when the doctor recommended we be given a refresher course on CPR we were more than willing to submit to his request. When the instructor came in and began saying things like "if you find your baby not breathing then..." and I recalled that day in the NICU. It is such a weird feeling to look back and think of how we felt then and know what we've been through now. I never expected to "find (my) baby not breathing" but Lex stops breathing multiple times a day typically. We have seen Lex turn blue more times than I could count on Joe Mike's and my fingers and toes combined, so when the instructor said "IF you notice a color change or Lex starts turning blue..." I looked at Joe Mike and we just grinned at each other. That may sound weird to you, but we have been through so much together it was amusing to hear her say IF. We fully expect to see Lex turn blue many, many, many times after we get home. It will be our judgement COMPLETELY of when CPR will need to be administered (and the nurses' after they get to know him). Fortunately we will also have oxygen at home which will be so beneficial. So as I sat there and listened to her continue on about the rare chance that we will find our baby not breathing at home it became crystal clear to me for a moment exactly what we are going through and that although it has become normal to me, it is not normal at all. It just reminds me once more about how tightly God is holding me and the strong sense of peace He gives me every day that I go through this.
As far as what is going on with Lex now, we have a new plan! Here goes:
-When Lex has six seizures within an hour he is typically given IV Ativan. We tried Diastat as an alternative because we will not be able to administer Ativan at home obviously because he won't have an IV. Diastat didn't work so we found that Ativan has a pill form which we will try to use the next time he has six seizures within an hour instead of the IV form. It would be wonderful if this works so that we will have that as an emergency med at home.
-It had been decided as of this morning to discontinue the Ketogenic Diet to see if Lex had a flurry of seizures so that we would know if it was helping. I did not fully support this decision since he has never gotten into full ketosis, but was convinced since the hospital is the best place to be experimenting with these things. However, after the nutrionist (she's amazing) was informed of this she began reviewing all of his labs from the past month-determined to figure out why he STILL hasn't produced ketones. His inability to produce ketones is something she has never encountered before since it typically only takes a couple of days and Lex has now been on the diet for a month or so. They suspected that maybe the steroids that we have been in the process of weaning him off of were the cause, but those ended on Monday and still we haven't seen any. So after reviewing the labs she found that his Carnitine levels were low. Carnitine is a nutrient that helps turn fat into energy, which is very important in producing ketones and for the Ketogenic Diet. So he is now receiving Levocarnitine to help with that. We are PRAYING this is going to solve our ketones problem.
-Lastly we have decided to try a new drug on him called Vigabatrin also known as Sabril. It has some rough side effects but we're kind of down to few options at this point. The neurologist here this week has high hopes for it because has seen many cases where children with seizures like Lex's responded very well to it. It also has similarities to Ativan which he responds EXTREMELY well to, so that is also a huge positive factor. Unfortunately it means that we have to begin weaning another med. So we have a rough week ahead of us next week, but I am excited about the new plan of action and hopeful to see great results. Holding fast and praying hard always :D
"If God is for us who can be against us?" Romans 8:31

Care Conference #4

Monday morning we were eagerly anticipating the day ahead of us. It was the day of our scheduled conference that we had been looking forward to so much, because we would be discussing taking Lex home and getting any questions we had answered. We began to dream about what it would be like to have Lex at home again, caring for him by ourselves and getting back on the road that could slightly resemble "normal" if you glanced at it and didn't notice the seizures and other health issues that come along with the sweet package that is Lex. The thought of going home initially scared me to death but the more I thought of it the more excited I got. Especially since we had made the decision to move back to our hometown (at least temporarily). All of the extra support would be fantastic, and to be away from the medical staff seemed like it would be a dream come true! So, with all of this in mind, I'm sure you can imagine our frustration when the neurologist scheduled for this week came in to tell us that the care conference would not be happening that day. Not only would it not be that day, but we also should not be thinking of going home, at least not alone. If we were to go home we would need at least part-time support of a nurse, however home didn't seem to even be a realistic option to him. Instead he shared that he would prefer us to go to a low care facility. A place with medical staff at hand.Not a hospital, but not home either. Again, I initially was extremely upset. I let my emotions take me over and became so upset that I wasn't going to be able to care for my own child. I was mad-why did they think that a nurse could do a better job caring for my son than me? After all, Joe Mike and I can make his formula for the Ketogenic diet and feed him through his g-tube, we can check his ketones and do his heel sticks and we are the ones who administer the blow-by oxygen when he has a seizure..so 'why do we need a nurse' I thought to myself. I asked that same question today at the care conference, and I'll tell you the answer I got in a few. Today we found out (AGAIN) that Lex's prognosis based on the symptoms he has when compared to others with similiar symptoms (seizures with apnea) does not look good. The neurologist today said he didn't expect him to live past five years old and most definitely not ten. Ouch, that hurt. Bad. I wanted to cry, it wasn't the first time I had been told-not even the second but it doesn't matter how many times you hear it, it always is painful. Fortunately I remembered, before any tears formed, the wise advice I have been given to never put my hope in the doctors-always in God, ALWAYS!! When I take this attitude I remember that "with God all things are possible". And my Lex may possibly be a miracle, with God. Wait-scratch that-my Lex IS a miracle.
So, I guess you want to know what was decided?! Well, it seems that we will be having a nurse at home, potentially 24 hours a day. We will be given a detailed description and guideline of in which situations Lex should be brought back to the hospital and when his emergency meds should be administered. So back to the question that I posed to the doctors. When I asked them "why do we need a nurse?" the palliative care lady kindly looked at me and said "because you will eventually need to shower", the resident on the neurology team added "and go to the bathroom" and the resident pediatrician said "and SLEEP". It made me sad, but they were right. No matter how much help I have at home (family is awesome) it is going to be hard, especially at first as we're adjusting. But the neurologist made the best point of all. He said that we need to just be parents. Lex needs for us to just be parents. He will have someone to do all of the other things for him so that we don't have to be his doctor or nurse or therapist. Right you are Dr. B, right you are. So, after all I am actually very relieved and feeling at peace with this conclusion. It looks like if things continue as they are that we will be out of here sometime next week and on our way home to meet the newest addition to Lex's medical team. I have prayed continuously for peace always for Joe Mike and I over all things happening and I know you all have been praying for all of us also. I want to say so much more than just "thank you" to all of you, you're prayers are definitely heard and God does put them into effect, especially when it comes to giving us peace. God is doing something great in our lives and though it is hard and it's sad I am genuinely excited about it when I stop and think. The neurologist said today "Because of Lex your lives are going to be extremely difficult, there is going to be a lot of suffering, pain and struggle". It may not have been the nicest way to say it to us, but he was right. It will be so worth it though...Praise God that this isn't all that there is!! I am so thankful for my Savior and that I get to spend eternity with him and Lex will too..
"Yet what we suffer now is nothing compared to the glory he will reveal to us later."
~Romans 8:18