Wednesday, August 31, 2011

Exploring our new pad


Today we have spent a lot of time "riding" round our new building. It's so nice having the freedom to unhook from his bed and explore. It does SO much for his spirits (and ours too!).

We got all the way down to a play area and he realized that he needed his shoes, so went back up to the room to get his shoes. He then realized that he needed socks too, so I went out to the car to scavenge around for a pair of socks (gotta love a well stocked mini van). So we got him all suited up for his stroll and went back to the park, with more appropriate attire. Well, kinda. We need to add clothes to the mix, he's been hanging in his diaper, which seemed appropriate until now. On my list of things to bring for him from home: clothes. He also insisted on wearing my sunglasses, for which I don't blame him, his eye must be sensitive after being indoors so long.

You may also notice from the photo that my boy has gained some serious weight. I mean he is chhhuuuuby. Every time I feed him (which is often) I can't help but laugh a little to be stuffing food into his chubby little face. I am used to chasing him and Kade around hoping they will eat enough to sustain themselves and so to have a kid that actually eats is a new thing for me. Good thing chubby looks good on him!

The rehab doc watched Levi eat today and noticed that the right side of his face seems to be not quite right. He suspects nerve damage, maybe from the swelling. This is also the likely reason that he has not opened up his right eye yet, even though the swelling is so much better. Time will tell us how the nerve heals, but the doc feels that recovery is likely, and so we'll hope and pray for a speedy recovery of the nerves in that area. It'd be great for him to have both eyes again!

Here is the video that I tried to post yesterday, but for some reason it didn't work. It's hard to decipher but his response to my question is "yes", but he says it in his cute pathetic voice. He then says his typical "cheese" when posing for a picture.
video
Love this boy.

Tuesday, August 30, 2011

Holy Awesomeness

So tonight I am quite happy to announce that we made it to the promised land. Of course the move happens right at bedtime, but hey, I am not about to complain about it.

This room is beautiful and it is everything that one could hope for as they look forward to an extended hospital stay. Here is his new room. Lovely, isn't it? There is also huge bathroom and bath that is not pictured. Can't wait to give this boy a bath!!


I am tired, so this will be a shortish post, but I just wanted to spread the exciting news.

Pray for Levi's anxiety during his physical therapy, as he is very unsure of himself and seems very scared to try things with his new body.

Monday, August 29, 2011

An evening stroll on a perfect summer night



Who would of thought that after THREE WEEKS in the hospital we would be so excited and waiting with such anticipation to be moved to another part of the hospital with an anticipated minimum stay of another 4-6 WEEKS? But hey, you gotta celebrate the little things, because right now the little things are big things. So here are a few of the little things that happened today:
Neurology has given us the boot and no longer want to care for us, so we have been transferred to orthopedic for his rehab. This is a big thing because from the stand point of the brain surgeons, you know the REALLY smart guys, his brain is clean and healing well so lets get the kid walking again. (The smart guy comment is as no offense to any doctors out there, but the saying does go, "This isn't brain surgery." not "This isn't knee surgery.") I mean currently aside from a little black eye, and bad hair cut and a 10 inch scare across his head, you would never know he had surgery. So lets get this kid walking again.
His sodium levels have been holding in a very tight range the last few days so they are no longer taking blood samples 3 times a day to check his levels. The hormone guys feel good about his current dosage, so we are going to move forward and just make sure he his drinking and peeing enough.
He is nearly completely unplugged. There is only one wire hooked to his toe to measure his pulse and oxygen levels, and his IV PIC line. All the other monitors are off. These have been bugging Levi the whole time. His IV meds are done tomorrow, so that means that he may get his PIC line out very soon and be completely free of "hospital connections".
Because he is so stable they are going to be moving him to the new rehab unit as soon as a bed opens up. Until then we are free to go outside and do as we please. We just can't leave the campus. Once we get into rehab we will have a lot more freedom and even get some weekend passes to go home once he is doing better. That is going to be a great place to get to.
The one thing that is keeping him from being in full rehab is he is unable to do the 3 hours per day that is legally required for him to be designated as a rehab patient. The doctor feels he is only a few days away from that, but is willing to get him into the rehab unit before he is officially ready.
We are pretty excited about the little things that have happened today. As a family we are getting into a new groove,Dan and Kara are switching off sleeping here with Levi and at home with Kade. Dan is getting back to working full time and Kara's full time day job for the time being to support Levi. We are grateful for the people who have and are coming down to visit Kara during the day. Levi is a great kid and all, but not the best conversationalist. Hopefully an hour of speech therapy over the next 4-6 weeks will change that.
Thank you for walking with us along this journey. The love, support and prayers that so many have given are helping to sustain us. Blessings to you.

Sunday, August 28, 2011

Sunday Funday


Today we enjoyed company from two of my closest friends and their family, it was a great way to pass the weekend and day and made this journey seem a little brighter.

I got locked out of Levi's room today because I was 5 minutes late for the shut down they do between 7-8 for shift change. I begged for an exception because my 2 year old was on his own in there, but the door keeper had no mercy. Now, I understand why they say to steer clear of a momma bear and her cubs, should you ever happen across them. If I had big teeth and claws I think I might have used them on this door keeper. Needless to say, I was not happy about having Levi in his room all alone, with his dinner in my hand ready to bring to him. Thankfully, he was just fine when I got to him. I won't make that mistake again.

I am headed into another night sleeping at the hospital. Each night I sleep here the more and more I hate it. I don't use the word hate lightly, but I actually do hate sleeping here. I like camping and technically this is not much different but for some reason this is just way worse. Okay, enough griping.

Levi continued to be very stable today, I think he even managed to be completely fever free today, wahoo! His sodium levels have been between 138-139 for the last few days, which is his ticket to rehab! His spirit is showing more and more and it's so fun to see him acting more like himself.

I did learn today that some of his docs want him to get an MRI on wed before they clear him of the meds he is on to fight a potential infection (nothing was ever found in any of the lab results). I am not super excited about him having to fast, and be sedated for another test, but I better go ahead and get used to it, because there are many more MRI's to come for this little guy. The good thing is that if the MRI comes back clear, he will get his last IV out and then be officially free of attachment to medical devise and cords.

I'll try to take pic of our adventures as we travel to our new room tomorrow, should be exciting. It's the little things that we have to celebrate these days. I am looking forward to leaving this room and phase of his journey behind.

Here's to hoping we actually do move tomorrow!

Kara

Saturday, August 27, 2011

What's to come

Whew! What a day, we tried to mix in "normal" life activities with the hospital bit and boy did it leave me tired.

I was talking with some friends about Levi's progress and prognosis and I came to a realization that Dan and I hadn't included some key details about his current situation in previous updates, so here is my attempt to keep everybody up to speed.

Usually, kids with this type of surgery/tumor are hospitalized for several weeks and then sent home as good as new. In Levi's case the surgery went very well as far as tumor removal is concerned but along with the tumor came most all of the connective tissue for his pituitary gland which we've talked about a lot in regards to his hormone balances, etc. What perhaps we haven't been as clear about is tiny blood vessel that was damaged during surgery, which damaged a small section of his brain. The area that is damaged is known to control movement, specifically on the left side of one's body. At this point Levi cannot sit up on his own, cannot use his left hand or leg.

We have started therapy to restore these functions, but this healing will take time. I asked one of the therapists, "how long????". Her answer is all I have to go on and it as such; "I don't know". She went on to say that if she was presented this answer by someone she would think to herself, "Oh yes you do, you are just not telling me." I respect her humor and honesty, because it's exactly what I was thinking. I pressed her for some sort of timeline, just to wrap my head around what we may be dealing with and she said, "One to three months". Okay, so it was sobering to realize that we are looking at months rather than weeks, but it was good to have a general understanding of what we are looking at.

All that said, we are looking at moving to rehab on Monday. As with all things hospital, I won't be holding my breath, but I do feel that it is reasonable to expect that it may actually happen.

Oh, one other fun thing that happened today is that he got his staples removed. I walked in at the very end of the procedure and I have to admit that I am glad to have missed this event! I heard he took it like a champ! Now we can attempt a better wash of that beautiful hair.

Okay, off to get my well deserved rest.

Kara

Thursday, August 25, 2011

Standing up, cruzing around

Well, kinda.


Today was about as eventful as it's gotten so far for Levi's rehabilitation. For PT they brought this contraption (shown above) that starts him off flat, secures him in, and then gradually lifts to 90 degrees. Today we got to about 70 degrees and then went for a cruise through the unit and for a look at the play room. Even though Levi's verbal response when asked if he liked it was, "no", the therapist and I both agreed that he really did like it. He also requested to hold his blanket for the big event, my boy loves his blanket.

I have to say, I miss all our old docs and nurses in the PICU. They were becoming like family, I mean, we were with them 24/7. The IMU peps are lovely and all, but it makes me much more eager to get to our final destination (rehab).

I've been slightly hesitant to post lately, as I feel like all of my posts would be repeating the same thing over and over again. Fever up, fever down, sodium stable, sodium low, heart rate high, heart rate better, threw up, didn't sleep, not eating, eating better and grumpy. I feel like once anything is better for any moment of time, I have learned that it can turn the other way before I could even expect it. It's hard not to feel discouraged and I know he is making progress, but I guess it is hard because it feels so slow. So slow that you can't tell it is actually happening until you take a step back from the day to day grind. It's nights like these that I am thankful that I can do just that. I have to remind myself that he is getting better and he will be my little boy who can cuddle in my lap once again, but just not tomorrow . . .or the next day.

Tonight, Kade and I are home together. We are trying to get this little guy back on some sort of decent sleep schedule and even get him back to the habit of sleeping in his own bed. I was up stairs rocking in the glider in his room while he was playing in the bath. I wasn't feel that great and I was just asking the Lord for the strength I didn't feel I had to get Kade down for the night. I was relishing in a few moments of quiet and I thought my little angel was just lost in his imagination to be that quiet for that long, so I thought I'd be a good idea for me to give a gander and check on him. Oh dear. I see an empty bottle of body wash and a very soapy tub and a very entertained 4 year old. Erg, I just bought that. Fortunately, I was too tired to really worry about it and I guess it was worth the few moments of quiet it gave me to prepare for the evening. So, since so many of you asked if there is anything I need. There is. Children's hair and body wash.

Kade then gave me the gift that I needed tonight, he went to sleep with no hesitation in his own bed. Thank you Kade, now I am really glad I was so easy on you for the body wash thing.

Thanks for still following along and for still praying and for sticking with us for the long road ahead.

-Kara

Wednesday, August 24, 2011

Great Night and a Great Day

The wonders of a good nights rest. Levi slept from around 7:30 pm to 7:00 am, which meant that I(Dan) got a good nights rest as well, only I napped so much from the previous night, I had a harder time getting to sleep myself. My night went something like this: almost asleep, getting there, deeper...beep, beep, beep(some alarm going off)...awake...repeat. Eventually it all worked out and Levi and I are feeling rested. Kara was home with Kade for a second night and he is going to be coming doing to the hospital for the day. Dad and Kade will probably get away for a little while this afternoon for some bonding time and then another night either at home or we may try to have Kade stay with us here at the Ronald McDonald House.

Well enough about us, back to Levi. All his levels are staying in a good range. We don't want to get to hopeful, but a rehab transfer is looking closer and closer. There he will get 3 hours of rehab each day as opposed to 30 minutes. His physical and occupational therapist are not his favorite people, only because they are pushing him in his development each day, but they are great people and we know they will get him back to 100%. It will take some time for his strength and confidence to be built back up. So often I find myself thinking about Levi running around, dancing, and just being a 2 year old. It brings me joy as I look to the day when he will be able to do those things again.

Had a good chat with endocrine today, getting a better picture of Levi's near and long term treatment, which will just take a little getting used to as we work it into our daily routine. It does mean Levi will require somewhat of an instruction manual for anyone who is watching him for a long period of time. But in the grand scheme of things that is all no big deal. The CANCER is gone. I will take a few pills and a shot any day over the alternative.

I recently was listening to a message preach out of the first chapter of Philipians in the bible. Here is the link if you want to listen to it. It was about having victorious joy. When we place our hope and trust in things that will fail us then it is easy to get discouraged and let down. But as we place our hope in the One who is faithful, surrender those things that we have no control of the the sovereign God who does have control, and we truly believe that as it says in the book of Romans chapter 8 verse 28 that for those who love God, He works all things for GOOD according to His purposes. The key thing for me these days is the His purpose part because that is what I am resting upon, God's purpose in all this, the way He is using this to mold and shape ourselves more into the people He designed us to be. This type of perspective helps put the circumstances of life into checkmate. With the help of God, we win no matter what. We trust that God's got this, we rest in His power and purpose, believe that He is much bigger then all this, and take control of the things we can and leave the rest in His care, letting Him worry about the things we can't change or control...we have victory, we have joy, and that is a great place to be.

Tuesday, August 23, 2011

Transferred, yeah baby!!!

Not down to rehab like we are ultimately hoping, but to Intermediate Care. His vitals will be checked every 4 hours, instead of hourly, which will hopefully lead to some better nights of sleep and it is a good sign that everything is getting dialed in in regards to his hormone dosages. The one thing that has been difficult to get right is the hormone referred to DDAVP, which regulates urine output. Too much of it and he retains water causing his sodium levels to drop to low. To little and he literally pees like a race horse and his sodium levels become to high and he feels like he is dehydrated. His high heart rate the last few days may have been due to not enough liquids, who knows. The last few days have been getting all this figured out.

One thing I have learned is how important it is to speak up when you have ideas. I am not sure if my suggestion for the hormone dosage was taken, but the plan moving forward is what I suggested to the nurse last night. A few days back, Kara's mom had a thought about the timing of his hormone dose, which was keeping him awake at night. All that said, Levi has improved the last few days with the help of the staff, but also because Kara and I have been proactive with the things we can have control of, sharing our ideas, giving him a quality diet and "exercise". We hope our stay in this unit is short and we move to the next phase of rehab quickly, because that will bring us closer to home.

Now that Levi is stable the next focus of Kara and I is the stability of Kade, our 4 year old. He has been a champ in all this but the last few days have been difficult for him. The sad reality is that the more time he has away from mom and dad, while staying at the grandparents, the better he does. If he gets a dose of time with mom or dad it is just too hard for him to get back to normal. So Kara and I are going to be putting a lot of focus on Kade and his stability over the next few days to determine what is the best setting for him over the remainder of our time. This is a major prayer request for us because it hurts my heart knowing what he is going through.

We have gotten some glimpses of the Levi of old, he said "cheese" yesterday for a picture we took and we are starting to see some smiles. Hopefully a good night sleep for him will revive his spirits tomorrow.

Kara and I are getting anxious about each of our work situations. Both of our places of employment have been amazingly supportive, but the reality of all this is that we will need to get back into things very soon. Please pray that as our Levi stables up, that we will be able to develop a daily routine and that this will allow us to support both Kade and Levi and put our best efforts into our jobs outside of caring for our kids.

Thank you for your prayers and support. The biggest need we are feeling these days are for visitors. So again I will put forth our shameless plug for a little time down here at Rady's. The sun is always out, there are some great play grounds for your kids, and it really lifts our spirits when people stop by.

Blessing,

Dan and Kara

Monday, August 22, 2011

Ah, Monday!

Unlike most people I know, I actually like Monday's. For me it means the start of a new week with full potential and a fresh start. Today that excitement has a stronger presence than normal.

Levi finally slept well last night, which means that I (Kara) who did the night shift also slept well. Then, he actually ate the first few bites of "real" food since his surgery. He had half a pancake, which is like feast compared to what he has eaten recently.

My mom cleverly theorized that one of the hormones that he has started and took every night before bed was messing with his sleep. Our docs and nurses looked further into it and confirmed that yes indeed, one (of the many) side effects is not being able to sleep. So we worked with the docs to hold it until this am. I hadn't anticipated that there would be side effects with the hormones that he is replacing, so I guess I was quite disappointed to read the long list of side effects yesterday that is associated with each of them. Bummer.

Levi's sodium levels seems to have stabilized significantly, they only fluctuation a few points in the last 12 hours. This is key, as this is the primary factor that is keeping us in the PICU.

Pray for our 4 year old Kade, he has been such a trooper, but had a rough night last night after Dan spent the afternoon with him and then left him at my parents house. Dan and I are still trying to determine what is best for him and how to best help him feel safe, secure and loved during this time. I am planning to have the afternoon with him, bring him home and have as normal as can be evening with him. Hoping for some restorative time for us both.

Saturday, August 20, 2011

Our August at Rady's

You know how when you go on vacation and you forget what the date is and you are not sure what day it is. Two weeks in the hospital is kind of like staying at an all inclusive vacation resort, but not as awesome and with really bad food.

Not a whole lot to report these past two days, just more of the same challenges we have been facing this past week, only with many improvements. Levi has been stabilizing, just trying to get his days and his nights straight which makes for some long nights for dad. We are just fine tuning his hormone meds so that he can keep his sodium levels in the optimal range. Today they dropped low again and he got very tired and non-responsive, never that awesome to witness, thankfully not as low as last time. Hopefully, we may be transferred to the rehab unit early next week (so we are told to hope). The change is a welcome one, as we all could use a change of scenery, especially Levi. We had to move him into a crib because he was showing a desire and increased ability to get out of his bed.

We are pleased with his progress, but we are learning to not hold too tightly to anything because it seems as fast as things can improve, they can decline as well. One day, one moment at a time.





Friday, August 19, 2011

Turing the corner

Levi is very stable today: not temperature, easy breathing, calm heart, decreasing swelling in face, both eyes almost open, left side strengthening...

Clears eyes, full heart, can't lose!

That is the road we are on, ever up and ever forward. The prayers of many are being heard and Levi is getting stronger. In this brief update I leave you with a variation of the poem "Invictus". I do not mean to be over dramatic, but in the unknown that lies ahead, "I lift my eyes up to the hills. From where does my help come? My help comes from the LORD, who made heaven and earth." Psalms 121:1-2

Invictus...my version

Out of the night that covers me,
Black as the Pit from pole to pole,
I am thankful to my God
For my unconquerable soul.

In the fell clutch of circumstance
I have winced and cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
You Lord are the master of my fate:
You are the captain of my soul.

Thursday, August 18, 2011

Levi is one tough little dude

Difficult day as a parent watching Levi's body battle through fever, a racing heart beat, backed up bowels(sorry), and strained breathing throughout the day. On a day where it seemed that there was so much promise with the way things went last night. Well maybe the 9 cups of milk and juice didn't help with the whole bowel situation.

Now as we head to sleep, his fever is down, his pulse is calmer, his breathing is somewhat easier, and his bowels are empty (be glad that you did not choose today to come visit...sorry again). We are learning more that our stay here will be a bit longer then anticipated, all depending on how quickly he rehabs back to full strength and function. That being said, Rady's is a great place to visit. If it is ugly and overcast on the coast, it is bright and sunny here. Feel free to stop by. Consider this an open invitation. We'll be here.

Chocolate milk and apple juice...a lot of it



So this photo, all NINE cups in it represent all the chocolate milk and apple juice Levi drank LAST NIGHT...crazy. You would think if you drank that much you would have to, as they say, pee like a race horse. Which he did, which is exactly what they wanted him to do. At last count his sodium levels are up to 146, with 145 being the goal the doctor had yesterday, so he is now in the safe and optimal range. His personality is evident that he is in a much better place. He is asking for things and communicating a lot better, using his very cute NO as a response to most things. He slept rather well, considering he had ice packed around him for most of the night. He is still working through a fever, which could be an infection or it could be nothing but the hypothalamus(control center of body regulation in the brain) getting itself back to normal. The tumor was pushing on it and the disruption can easily cause many of the symptoms we are observing.

Kara and I are settling in to a new perspective on our stay here, not focusing on the exit point, but making sure that each day is healthy and productive for ourselves individually, as a couple and a family, making sure we are feeding the mind, body and soul. I guess you can say we are letting go of the things we have no control of and taking control of the things get can. It has really helped us already look at the day in a new light.

Thank you as always for your love, prayers, thoughts and support. Your comments help sustain us. Please keep praying that the fever will subside and that his hormone levels will find the proper balance.

Blessings,
Dan

Wednesday, August 17, 2011

Wednesday . . . glad I paid attention in Biology

A good night's rest helps with everything! Heading into the hospital I felt so much better about today, which I needed, really needed. Thankfully, I felt recharged because when I got to Levi I was met with disappointing news. He was not nearly as responsive as he was yesterday, he is running a fever and still won't eat (or throws up if he does) and now won't drink everything. Ah!!! For a moment, I had a major mom freak out because of these declines.

After a review by the lead Intensivist here, he determined that all of this is likely due to his very low sodium levels. Because of the surgical disruption to his pituitary he is being given hormones to control his urine output, the dosage was too high, not allowing him to get rid of extra water or allowing his body to self regulate. I am hopeful that since they took measures to adjust immediately, he will start to feel better and be able to eat and keep it down. They have decided to get him back on IV nutrition, so I am hopefully that will help him too. His sodium level this am was 128, normal levels are 135-145, so let's pray that we will be able to maintain him at those levels fast and that the Docs can find the correct dosage for his sweet little body.

Not sure how physical therapy is going to go this afternoon considering I can't even get him to respond to simple questions. Here's to hoping.

We are looking at a few more days for sure in the PICU, but don't know much beyond that. Dan and I were discussing this am that we have to gain new perspectives and expectations of our daily life. Choosing to live for the day and make the best of each moment, not living for what is to come, but what is immediately before us.

Thanks for keeping us lifted up and helping us to survive each day.

Kara

A pre-op video, reminding us of the sweet boy that we are all rooting for.

video

Tuesday, August 16, 2011

It was the best of time, it was the worst of times

Today was one of ups and downs. We had some great physical therapy today and Levi is getting stronger. We had him sitting up in a chair for well over an hour today. His left side is weak, confirming a damaged blood vessel during the surgery. Dr. Levy is confident he will make a full recovery with rehab and the fact that the brain is still growing. Dr. Levy also noted that he doesn't see anything there, meaning the tumor, as far as he can tell, is gone. It feels awesome to write that. Time will tell and Levi will be getting regular MRI's to make sure all is clear.

The Irish Eye Doctor came to see Levi today and confirmed that damage we initially suspected to the optic nerves. There was no apparent damage from the surgery, just the long term presence of the tumor which compromised the nerves. The good thing is that we (humans) only use about 10% of our optic nerves, but how Levi sees depends upon how his body uses what is there. It is like having a killer HD flat screen and putting rabbit ear antenna on it. You may get a great picture or not based upon the direction of the antenna. Let's keep praying that his body responds well.

Levi is not holding his stomach well, which is possibly a result of the post operation recovery and the sodium imbalance they are working on by finding the correcting hormone dosages.

I want to see Levi smile. For those of you who don't know him, he is the happiest kid you will meet with a big smile and smilly eyes. I yearn for the day when we will see that again. Kara and I are tired and fatigued. We are so blessed to be getting the care we are getting at an amazing hospital but we are sick of this place. We just want to be home. Kade wants his family home. We are all having a difficult time with the length of time we have been out of whack. Today was day 10 in hospital and day 19 since symptoms showed up.

The hope we hold onto is that we are closer to the end, than we are to the beginning. As we observe other families here and reflect on other peoples experiences we realize that our situation is minor. The CANCER is gone, our son is not dying, and he will get back to normal. In that there is so much to be thankful for and we are trying to keep things in perspective, but the day in and day out is wearing us out. But hey tomorrow is a new day, and our God has the habit of making all things new.

Eyes wide open...kind of


Woke up this morning to Levi looking at me through his one good eye. The other one is still pretty purple, but right now Levi is relaxing watching some Curious George. The bandage on his head came of today. The neuro surgeon is much less gentle with the bandage removal. His incision and staples puts Frankenstien to shame. I will spare you the pictures. You can thank Kara for that filter. He is off all IV fluids now in the effort the get his body to begin self regulating. All we need to do is dial in one of his hormone dosages before they are ready to transfer Levi out of the ICU. The transfer could be to intermediate care or straight to the rehab unit. I think we want the rehab unit if he is ready because it is that much closer to getting home.

He has started his physical therapy and it is miraculous the progress he has made in one day. Yesterday he was unable to sit up on his own and hold his head and this morning he was sitting on his own and supporting his head. He did this for about 10 minutes. They are planning to have him work on walking tomorrow. The kid is a champ and we are at awe at his progress.

So many have offered their help and just because you have not heard from us, does not mean we do not need your help. We are just figuring out how to utilize all that we have been given. My(Dan's) parents and brother and sister-in-law were down last week. A huge blessing as they really help Kara and I focus on Levi while they helped give Kade some much needed attention. One of my best friends can in to town for a help the past two days. Kara and I are just doing the best we can to take steps towards normalcy...but we have many steps to take.

The reality of Levi's hormone treatment is starting to take shape. Daily oral suppliments and a growth hormone shot each day. The nurse commented on it being a short needle. In the world of shots a needle is a needle when you are getting poked each day. But in the grand scheme of things some daily suppliments is no big deal, compared to what we were facing last week.

Please continue your prayers for healing and a quick rehab. Ultimately we are praying that his pituitary will find it's banlance and regenerate. It would be a miracle, but this whole process has been miraculous so let's keep hoping and expecting.

Sunday, August 14, 2011

One week later...

Levi is back, well as back as one can be with a healing skull, iodine and blood streaked hair and a face that looks like he just won a prize fight. The rest God gave us all the last few days made us ready to be available to support Levi as he woke up, which was tough to gauge since both eyes are swollen shut. He asks us to turn the lights on, it must be confusing for the little guy. But he is still aware enough to tell every nurse and doctor who comes in to "go away", pointing to the door. Perhaps this time in the dark will help him develop some heighten senses. You gotta look for a positive in these circumstances.

Levi napped in Kara's arms today, to which Kara commented, "I feel like having a new born, where you are uncomfortable from sitting so long, but don't want to wake your baby." He drank plenty of chocolate milk today, but we have to space it out to not overload his stomach. His request would then shift to white milk, apple juice, water, and even some mommy milk...the kid was desperate.

In his beaten up state, he is way ahead of the recovery curve. We have several doctors who are overseeing Levi's case. The doctor who is more cautiously optimistic shared with us that he feels really good about the MRI being clean and that Levi is recovering way better then he could have imagined. There is some marking on the brain that could either be bruising, or the result of a damage blood vessel. They do not appear concerned about it because everything else about Levi's actions and verbals show he is right where he should be. Regardless I ask for your prayer that the marking on the brain be nothing and be gone the next time he has an MRI, which will be every few months, during this next year.

The doctor did comment on the miracle of Levi's surgery and recovery progress stating that whatever praying that we have going on to continue it because he is seeing that something bigger is at work in all this. Bless the many who have lifted Levi up in prayer and those who continue to do so. We have only completed one leg of this journey.

Kade and I(Dan) went to the beach this evening for one of my closest friends birthday. Kade played in the sand, threw some rocks with his best bud, Logan, while all the younger kids wanted to follow along, threw some sand in his own eye and I remembered what it is like to be a father, making sure my kid gets dinner in the middle of all his playing. It was a sweet taste of normalcy for the first time in one week. I am sitting at home in quietness for the first time in one week. Kade blessed me by going down for bed without a problem, his normal, and I can exhale in peace knowing that we are one more day closer to normal. One more day closer to seeing Levi running around our house. One more day closer to our whole family being under one roof. It will be a great celebration when we are all home again...it is good to be home.

Apple Juice and Chocolate Milk

Levi slept very peacefully last night and has continued to appear calm and comfortable. This morning he sweetly requested apple juice, and slowly slurped that down. He quickly then requested Chocolate Milk!!! It was quite satisfying to fulfill that request for him.

Dan and I also got the best night of sleep since this adventure began, my (Kara's) dad did the night shift with Levi, which we are thankful for.

It's funny that one of the sweet games we used to play was one that he pretended to be puppy and would crawl up to me in the kitchen and bark. I would then rough up his hair and get him a puppy treat (aka. a kids multi-vitamin). I find that funny because now with is face so swollen, to me he looks like a pug. His nose is dwarfed by his face swollen up around it. Sadly, now both eyes are swollen shut.

Looking at the week ahead is somewhat overwhelming. Since we have some of our family leaving town, we are trying to figure out how we are going to manage Kade, our 4 year old, Dan getting back to work and the most demanding job of having somebody at Levi's bedside 24/7. We are so blessed with support, so have confidence that it will work out, it's just figured out that will be our challenge today. I am rather excited for the spread sheet I get to create to organize our week, I'm a dork like that.

Saturday, August 13, 2011

Levi is thriving!

Levi had his MRI at 2:00 today. The results show that everything looks clean, meaning it seems like all of the tumor was removed. The final review of the MRI will be on Monday with the surgeon and brain cancer doctor. But Levi continues to be doing well. He was off medication most of the day and only on Tylenol to manage the pain. It is a pretty amazing recovery considering the state he was in only 24 hours ago. Our only explanation for such a recovery is the goodness of God.

Again, it means so much to have your support and prayers. More updates to come.

good night.

~ kara.

On the other side

So here we are. Levi is peaceful and apparently comfortable, as much as you can be considering what he has been through. It took until around 2:30 am this morning for him to settle in and for the amazing staff here to dial in his pain management. He has been snoozing pretty much since then, it is 11:15 am now. Kara and I took shifts being by his bedside last night, which was great because we both got some decent chunks of sleep last night. MRI is scheduled for 2 pm today.

Last night I(Dan) walked out of the hospital and sat on the same bench that I sat on less then a week before. At that time I was frantically calling people, trying to talk to someone as my world was in apparent free fall, having stepped into a parent's worst nightmare. Last night, however, was much different. Kara and I had a lot of peace going into the surgery and during the process, but I did not realize the weight I was carrying this entire week. It is amazing the feeling I had last night with the weight now removed. I am able to, with hope, envision the long life of my son.

We cannot express the impact of all the prayers, love and support that so many have sent our way. The messages people have posted have help encourage and support us through this week. Levi is bruised but far from beaten and as the nurses have said he is doing amazing in his recovery. Hormone levels are looking promising, so continue the prayers for some more miracles.

Friday, August 12, 2011

Seeing My Baby!

Our initial viewing of Levi was surprising (in a good way), first because he looked so "normal", secondly because he was awake!!! Although, while I was with him, he was starting to bruise up pretty good. They expect that he won't be able to open his eye for 4-5 days.

Wow, wasn't prepped for that. Wanna guess what the first thing he whimpered was? You got it, "Chocolate Milk". Gotta love that boy's persistence. We expect to be able to give him fluids after his MRI, but don't know the schedule on that yet . . hopefully early.

As happy as I am that his breathing tube is out and he is awake, it's facing the reality of the next fews days that I am not so happy about. The little guy is hurting and as a momma it's so hard to see and so hard to try to comfort, knowing that I don't have the ability to make the pain go away. He will be on pain meds, but after your face gets pulled off of your skull, then your skull cut apart, I am thinking that morphine might not make as much of a difference as one would hope.

Dan is planning on taking the first shift tonight and, since I'll be across the street, I'll come over and relieve him sometime during the night. It's not clear yet, but we are getting the idea that it might be a week or so before we make the trip home.

I feel like I can breath again, and it feels good.

-Kara

surgery completed

Dan and i just finished with the consult from Dr. Levy.

Wow, glad to be on this side of surgery. He feels really good about how things went, and felt very hopeful that 100% of the tumor was removed. An MRI tomorrow will show us those results. The optical nerves looked good. He had to take out some parts of the pituitary, but that is something that can be corrected with hormones over time. The Dr. said everything went smoothly but as far as difficulty goes, this surgery was an 8.5-9 out of 10.

We are headed up to see Levi soon, although he will be under through tomorrow when he has the MRI.

We are so relieved and have been so thankful for all the support. Thankful that this part of our journey is done and hopeful about the future.

Please pray for a smooth recovery. We'll update when we can.

We're so thankful that God brought him through the surgery and thankful for your prayers.

Love,
Dan and Kara

5 pm update

They called to let us know that they expect to be completed around 7 pm, but didn't have any substantial info on the progress. Wow, my heart almost pounds out of my chest as we get these phone updates, it doesn't help that I have to run out of the building to get reception. They moved him into a new PICU, so that may be nice to have a little change in scenery.

Next update should be more interesting . . .and hopefully filled with a good report. Although it is the coming days that will be more telling.

Wed 3 pm

Today at 3:00 one of the nurses called to let us know they were still working on getting to the tumor and not yet to the point of removing it yet which means the surgery will likely take longer than originally anticipated.
We got to meet Dr. Levy before the surgery began and were relieved to see how calm, cool, and collected he was. It was very reassuring.
So we wait and pray and we are so thankful for your continued support and prayers.

it is finally friday.

A quick update while we are waiting to meet the team. The morning has passed moderately fast (so far) which is good considering that Levi's waking request was "Chocolate Milk". Luckily, I was there to stop Dan from fulfilling his request. When a kid is in a fasting mode, they really do need to clear his room of all food because tired and delirious parents will give their kid anything. He proceeded to ask for everything he could think of, not quite understanding why I wasn't rushing to fulfill his request. He's still asking for food and drink on and off, but he is mixing it up with being his playful self.

Last night, I bowed before God in tearful surrender, crying out to Him. He restored peace to me during that time and is giving me strength to face today.

We'll update as possible.

Can't say enough how much your prayer and support has helped us through each moment of this journey.

Thursday, August 11, 2011

levi.





Please Pray for Levi today.

"So we choose to hope. We hope in the One who gives us reason to hope. We lean on the One who carries us through our trials. His grace is sufficient for us for His power is made perfect in our weakness. " ~ dan ryska, levi's proud daddy.

A Guest Post From Dan

We are at a place right now as we are within 18 hours of the surgery where we can choose to worry or to hope. Yeah we are scared. We have no clue as to what the outcome of tomorrow will be. I look at my amazing son napping right now and wonder will I get him back?I say that and mean several things. There are the many risk in going under the knife, or I should say the saw. He may not make it. He may make it but only through major complications. Or he may come back completely new. I mean the little guy has had this thing in his head for a while and probably been living with a head ache for some time. To be free from that can change anybody...we just don't know what the outcome will be. So we choose to hope. We hope in the One who gives us reason to hope. We lean on the One who carries us through our trials. His grace is sufficient for us for His power is made perfect in our weakness.

As I have wrestled with God trying to comprehend all that has passed this last week I have come to realize that even my own child is not my own. Each of us is created with a purpose. A purpose that is so much greater then ourselves. Because of that I cannot choose how God will use my child for his purposes. I do believe that God has a purpose in what is happening right now. This is no accident, this did not take the Creator by surprise. While in our limited scope this floored us, in God's grand view of things this is all part of the process of showing Himself to the world. If God's whole purpose in this is to show off His church and his miraculous power, then I am okay with that. My life is not my own, Levi's life is not his own. He is a gift and I welcome that gift, but I must surrender that gift because ultimately, as we have seen, we have not control of what happens in our child's life. We can protect them from every bump and bruise, but this golf ball in his head will still show it's ugly face. We have no control.

And so we choose to hope instead of worry. We trust instead of have fear. Yes we are scared and will be scared for the next 36+ hours. But we surrender those fears and we hope, we trust, we live out the faith that we profess. I have told a few that I do not know if I have the faith to believe in God's ability to be bigger then all this. But my faith is growing and as I profess my fears and move forward in hope I can see the bigness of God and I lean on him, letting Him carry me in my weakness, because that is where his power is made perfect. For scripture tells us "Now faith is being sure of what we home for and certain of what we do not see." Hebrews 11:1

I do not profess to be a man of great faith, but right now I am choosing to believe and choosing not to worry. Yeah I am scared but my God is much bigger and He's got this.

how do you prepare for something like this?




Dan and I both got to hold Levi today and that was precious time, he wasn't thrilled to get back in bed, but is sleeping peacefully now. His brother, Kade came in to say goodbye and he was as sweet as I have ever seen him. I prepped him saying that Levi would be asleep and so we would have to say a quiet goodbye and I have never seen my barely 4 year old act so aware. He whispered "You are my Sunshine" to him, which is a song that we often sing together to each other before bedtime, replacing the "dear" with a family members name. He lipped the whole song, then gave Levi a gentle kiss. On his way out he worked our nurse for his daily Popsicle, his little routine. That's my Kade!

We are told that we need to be available early tomorrow morning to meet with the surgical team, sign more forms, etc. So I'll be sleeping at our room at the Ronald McDonld house. They are telling us that we should received updated during the surgery itself and we'll be provided a pager so that we are not confined to a single waiting room.

Thank you for following this journey. Each time I read through all the comments I am amazed at people's willingness to care and to participate in holding Levi and our family up in prayer.

Wednesday, August 10, 2011

wednesday.



Today flew by, Levi was in great spirits this morning and was up to his sweet self when I got to his room. He was trying to make me laugh by asking the same questions over and over again and then playing peek-a-boo with his blanket. It was an enjoyable morning with him, especially since I was able to get some sleep last night! Yeah!

It's amazing what a good night sleep can do for one's perspective. As I was driving to the hospital this am I was talking with my mom, we were reviewing some of the discussions regarding the surgery and she said something to the effect that "we are expecting a miracle" and I guess that kinda struck me strong. I recalled that anytime that I have sought God and then intentionally put forward the faith to really expect Him, He shows up. So when I heard my mom say that we are expecting a miracle, it gave me such peace. That peace has been with me all day.

He was insistent on getting a hot dog for lunch but then wasn't able to keep it down, which super bummed me out. He hadn't thrown up since Sunday and I thought he wouldn't again since he had gotten some relief from the drain. Bummer! At least he seems like he is more comfortable. He napped much later than normal, so I am hoping that doesn't mean he has a harder time getting down for the night.

tomorrow is a new day. a day filled with ups and downs i'm sure. your continued support carries us through this time.

praying for miracles,

~kara

Tuesday, August 9, 2011

end of day 2.


video
This afternoon/evening has been much harder for Levi, he keeps asking for me to hold him and it breaks my heart that I cannot and really don't know when I will be able too. When nurses are in the room he keeps asking that they go away and is very persistent about it and becomes more agitated so it's harder to keep him comfy.

He did get a Chocolate Bar today, and he was stoked about that, which makes a momma happy.

Dan and I are kinda burnt out tonight, I'll have more to share in the am. Still processing the discussion with the neurosurgeon this am. We just had some more family get in town so we'll have them to help with Kade.

thank you for your continual prayers,

~ Kara



it is only tuesday.

In the middle of the night last night, while I was not sleeping, I was thinking about the fact that when I got up to face the day it was only Tuesday. Really? Only Tuesday? We have 3 more days until surgery day. I am trying not to focus on the long road ahead, but focus on the day at hand, but when we have Friday's surgery pending, that's proving to be tough.

Levi slept well last night and he is back to the sweet thing that he is. He got to eat pancakes and LOTS of chocolate milk for breakfast. He is on a steroid (Decadron) to reduce inflammation in his brain, but a side effect is that it causes hunger, so being able to say yes when he asks for food has made keeping him comfortable much easier.

Early this a.m. we got to speak with the Endocrinology team (hormones). This was reassuring because we learned that his function is "normal" now and that even with extensive damage that may be caused from surgery, much if not all can be corrected via medications. So, going to cross this worry off my list.

We got to speak with Dr. Weingarten today the resident neurosurgeon that has been on his case who had reviewed Monday's MRI results. Gaining an understanding of what the reality of the tumor is, was satisfying to my intellect but traumatizing to my heart. I wanted to hear him say that this tumor would be no prob job and that we're good to go. Instead, I heard that beyond the previous concern that we had for further damage to the optical nerves is the location of the tumor in relation to "Circle of Willis" vascular structures that have the 4 major life giving structures/arteries that connect and serve the brain. Oh. Hmm. Scary. Not what I wanted to hear at all. Not at all. So troops, this can be a focus of prayer. That the surgeon would be able to remove 100% of the tumor without any damage to these vital structures.

I also got a little clarification of the type of tumor this is and how it rates on the cancer spectrum, which was a curiosity of mine. It is considered a low grade malignant tumor. Meaning that the ability for it to spread within the brain tissue itself is minimal, but rather it encapsulates around these structures. So really, if you're gonna get a tumor, it's one of the better ones to have.

Driving home last night I was reflecting on the surreal feeling of being literally held up and supported by all of you. Without you, I realized I would be crumbling. Thank you for the scriptures some of you have shared. One that was particularly helpful was from a dear friend's mom, who herself has battled cancer twice. Psalm 94:19 - "When my anxious thoughts multiply within me, Your consolations delight my soul."

Monday, August 8, 2011

the end of a long day.


I am OVERWHELMED at the support and love that we all have received. Not just a fluffy kind of love but the Christ-like, self sacrificing servant kind of love. I feel the body of Christ around us so strong and it has truly made this withstand-able.

Not a lot of "new" news today. They informed us that the surgery will be 11:30 on Friday, which I am looking forward to and dreading at the same time. Probably a lot more dreading than looking forward too. We are reassured that the surgeon who will perform it is "the best" and an expert at this particular operation. Non official diagnosis is Craniopharyngioma, yes a mouthful.

Levi wasn't cooperating for some of the initial exams today but the neuro-oncologist suspects some loss of vision on his left periphery. We expect to see an neuro-opthamologist tomorrow and they should be able tell more. Of course what vision he has now is not as important as what vision he has after the surgery, since damage to the optical nerves is one of the major concerns.

His spirits seem much better today, I got to spend time with my precious Levi the way he was before all this made him so miserable. He spent his day asking for Choc Chip Kids Cliffs Bars which he knows as "chocolate bar", and when I mean spent his day, I really mean it. Let's hope tomorrow he might get a taste! Tonight he is on clear liquids, but I am happy to say that he has been holding those down quite well and even asked to feed himself his popcicle. I had to look the other way to be putting all that food dye into him, I mean how do they even make red that bright anyway? (sorry, it' just a thing of mine)

Hoping I can get some sleep tonight, needless to say last night's attempt was a complete failure. Thankfully Dan is a sleeping champ, or rather lack of sleep champ and is going to do another night at the hospital while I run home.

Thanks to you all for reading this and loving, really loving my little Levi.


How you can help...

As friends of Kara and Dan we want to do whatever we can to support them and love them during this difficult season.

1. PRAY. please pass on this blog, link it to Facebook or pass it on through email. please let others know about little levi and his condition. pray for continual strength for Dan, Kara, and Kade.

2. If you want to help you can give a gift. here are a few ideas: food gift cards to local restaurants or fast food near Children's Hospital, gas cards (since they will be doing a lot of driving), cards of encouragement, snacks, a financial love offering (a credit card gift card, checks, or cash). Also, Levi (he is 2 years old) will be laying on his back for several days so any sort of toy that would give him joy from a laying down position.

There are 2 drop off locations:
- 1426 Purdum lane, Escondido. Ca. 92025 (wanida maertz #619-888-9391)
- 3610 Promontory Place, Carlsbad, Ca. 92010 (jessica hunter #760-535-0122)

*Please deliver gifts by Wednesday at 7:00pm as we would like to pass them on asap.

3. Leave a comment. If you are unable to give a tangible gift please leave a comment or two on every post (you will see a comment option below). Dan and Kara will be at the hospital for days-weeks and it can become somewhat isolating. Leaving a comment of encouragement is a way to remind them that they aren't alone and are deeply loved.

Check back for more updates on Levi and his health.

Please call me with any questions: anjuli #619-301-4001



Levi's story

The History:
Levi hasn't been himself the last 10 days; complaining of headaches, throwing up, and wanting to be held all the time. This past week he started to do funny things with his eyes, which caused us to be even more concerned. On Sunday, during our third visit to urgent care they decided that it wasn't just a flu that they initially diagnosed him with and had us admitted to Kaiser Zion. They immediately did a CT Scan and the results showed a mass in his brain as well as a significant amount of water on his brain caused by the blockage from the tumor. They decided the best place for him would be Childrens Hospital and they transported him there yesterday.

What we are learning now:
The neurosurgeons explained the difficultly with his tumor is that the location is very hard to get to, as it is in the center of his head and it is surrounding very sensitive areas such as pituitary gland and optical nerves. It is not the type of mass that typically spreads throughout his body and it is very hard to entirely remove. Estimates are that the mass is 3.5x5 cm, which for a little brain, isn't as small as I hoped.

Treatment is surgery, as radiation and Chemo are not typically effective on this type of tumor. Surgery is scheduled for this Friday, we don't have a time yet. We are thankful that the surgeon performing this 8+ hours surgery is an expert at this particular type and we feel he is in good hands. His name is Dr. Levy and he is out of town until Thursday evening but has already been involved in Levi's case.

He has an MRI for 1:30 today, that will provide the Docs a much better picture of the tumor. We expect the MRI to take a couple of hours, so hopefully we can get some rest during that time. Sleep wasn't really happening for me last night. kind of a lot to think about.

Thanks to everyone for prayer and offers of support. We all feel very loved. I will let you know if needs come up, thank you to those of you who have already filled many of them. We will likely get a room here at the Ronald McDonald house and meals are provided to us there as well.

I'll try to daily update facebook and this blog. Please pray. Please share Levi's story with anyone who has a heart to pray. We are entrusting our little Levi into His Father's hands, knowing and trusting in our loving God.

- Kara Ryska.