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

Lex's Buttons

Monday we were given some info that was shocking, exciting and scary all at once. After a month and a half of waiting, Lex would finally be having surgery to get his Nissen and G-tube placed! The part that was shocking (and all of those other descriptive words) was that it would be the following day. We had been waiting for so long for him to get this taken care of. It's a hurdle that we thought we would never get over. When we thought of going home it never seemed possible because we would think "well first we have to get this g-tube and nissen, and who knows when that will be?!". Tuesday was a very long day for all of us waiting on Lex to get out of surgery. We were told that the procedure itself would take only 'a couple of hours'. So when Lex was taken away from us at 9:10 and we were left sitting in the waiting room, we counted the hours going by. A screen with all of the patient's names slowly scrolled by 597 times, each time sharing with us that Lex was 'In the Operating Room'. Finally the fifth hour rolled around and after expecting to have heard something over 2 hours ago, we were all on the edge of our seats and praying hard. They finally called us back shortly after the fifth hour and shared with us that Lex made things a little complicated by making the typically straight and narrow road of Nissen and G-tube surgery bendy and bumpy, instead. (and rightly so, no one should ever expect anything short of complicated when it comes to Lex ;D) But after all the surgeon was very pleased with the outcome, which is all we cared to hear at that point! So, after a long, long wait Lex finally has been g-tubed and nissen-ed. It is so nice to see the NJ tube out of his nose and just see the nice, sweet face of Lex. Just Lex. The surgeon did decide to just go ahead and go straight to giving him a Mic-key Button. He was uncomfortable for the first couple of days, but is doing much better today. Very little fussing and has been mostly resting. He only had 4 seizures yesterday and none so far at all today, which is AMAZING. The neurologist told us to expect more seizures because after surgery the threshold is lowered for seizures, put praising Jesus once again because, what do you know?! LESS seizures :D We will be having a care conference on Monday to discuss going home. It is crazy to think about but we are so excited that we may really be out of this hospital in as early as a week's time. We know that we will be taking home Lex still having dangerous seizures with desats, but we're prepared to handle that. I believe. So, including the obvious belly button, Lex now has TWO buttons and I love them both because they're a part of the something sweet and amazing that's laying next to me. These are two videos the day after Lex's surgery. He for some reason out of nowhere was wanting to suck-but just on his tongue, he had no interest in his binky. The first one does show his button briefly if you are interested to see. P.S. he is swollen from the surgery if you're wondering why he suddenly has massive chipmunk cheeks.

Sixteen Seizures

Lex had one crazy day (and it's not even over yet!). The craziness began at around 11:00 when Lex broke his 42 hour seizure-free streak by having a desatting seizure. He went on to have 16 seizures over the next 2 1/2 hours. After the first four he was given Ativan but it had no effect, so they ended up trying a second dose. The first time he had seizures this frequently (1 wk and 2 days ago) he didn't respond to Ativan either of the times he was given it, so I was sure that giving him a second dose of Ativan this time wouldn't help. But that was me being silly and trusting myself instead of trusting God. He had instant relief after the second dose and has not had any seizures since, Praise Jesus. He did, however, develop a fever tonight which was discovered at around 8:00 p.m. to be at 100.5. They are doing blood and urine cultures so naturally the nurses have been aggravating him to death with needles and catheters through the evening. But he has taken it wonderfully and just been so tough through it all. He's resting now and we're praying for another great and peaceful night for him.

Hints about HOME!

Lex has been on a pretty organized schedule the past couple of days. He prefers having seizures in the afternoon apparently. That's not necessarily a new development though, he's been doing that for a couple of weeks now. Yesterday was a little different because the seizures were a bit more spaced out and his SATS weren't dropping under the 50's and they all lasted under 1 minute. So, considering the fact that they are actually saying the word 'home' to us (more info on that later!) I feel like it's important for us to get a feel of what kind of pattern that this is, rather than throwing Ativan in him everytime the nurses get nervous.Despite my opinion on this the nurse did give him Ativan again yesterday. So we still don't know what these seizures are doing. After speaking with the neurogeneticist, whom i like to call Dr. Bowtie, this morning about my concerns with this he completely agreed and said that he would change the guidelines for which Ativan was given. Dr. Bowtie has had a very agressive attitude this week about getting Lex 'fixed' and getting him home, so naturally I love him. He has gotten the surgery team to finally agree to take a look at Lex again about getting his G-tube and Nissen, since they have been scared to death of him for weeks now. They haven't came by yet but Dr. Bowtie expects them to take care of him early next week!So it will be great to have that taken care of. Other opinions that the doctor shared with us today: 1.)Lex is about as stable as he is going to be for a while 2.)Children who have seizures with desats often will grow out of the desats after several months and then have 'different' seizures-not necessarily worse or better, just different. 3.)We are capable of caring for him just as the hospital as been at home (which I had already figured out for myself-but it's nice having doctor's here as backup!) 4.)We will have equipment we need at home to care for him (oxygen, mask, feeding pump, etc.) 5.)We will more than likely end up having to make multiple trips to the hospital because of Lex's condition (but this is not uncommon) 6.)He is comfortable with us going home as early as a week after surgery. So, a lot of information to take in at once, right?! Some exciting information as well as some stressful stuff. I had already expected we'd be back to the hospital pretty regularly anyway, so this wasn't a shock but it is NOT FUN to think about! I do looking forward to going home, problem is we're not sure where that is at the moment..but that's a whole other blog... So, in the meantime Lex has been doing his physical therapy and getting bath's regularly! He really enjoys both. Can't you tell? Also his Topamax dose has been increased as of last night and his diet is still slowly undergoing subtle changes that we are hoping to display GREAT results. Still praying for large ketones people! Also that this topamax does something awesome for Lex. I just still have such a high hopes and such comfort knowing God is taking care of him. Praising God for the huge improvement Lex has had since we were first admitted, and still praying for NO SEIZURES at all, despite the fact that the doctor's have tiny doubts of this possibility.
A couple of days ago Lex decided to just tell us all about what was going on with him, in a way that was definitely a first for us. So, enjoy this video of him doing just that. Also, you'll see me fidgeting trying to get braces on his hands-he wears these off and on throughout the day to keep his fingers from being shut so tightly in his hands all of the time.

'Many will see what the Lord has done and be amazed. They will put their trust in the Lord.' Psalm 40:3

Better Binky

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!!