Brain Surgery day 6-19
December 13: Smile!!
Here’s my smiley guy this morning!! We’re up to 4 seizures. 3 from the scarred area (MTS area) in his brain and one 12 second from the top of his head. We had a good night last night and hoping to see more activity but the docs haven’t been in yet today….so we don’t know yet! I’ll be leaving to spend the evening/night with Britney for her 12th birthday. My boy is sure to perform on the EEG and with LOTS of small seizures from the same point soon…I’m praying for clear answers everyday!
December 14: Cuddles! My sisters visited together again today. Wow did we have a great time with Ryan. Singing and dancing and having a lot of fun with the books, cars, stickers, movies, and other toys. All while catching up, the 3 of us girls and loving on Ryan. He loved it too! The EEG leads needed to be messed with a bit on Ryans head so I asked that while the nurse was changing Ryans bed sheets and the Tech was changing leads, I hold Ryan. Everyone agreed so I was one happy mama!!
230pm: First time holding little man since surgery on Monday! Please say a prayer for our little fighter!
December 15: Hanging out waiting for some activity!
1030am: Breakfast in bed and laying down is how we do! Good Sunday morning!!! I saw some activity last night in Ryan that I saw back in September and noted for the doc which happened to be seizure activity then…hoping and praying it is this time too so we can move on to the next phase!! Ryans pretty itchy and will have his head rewrapped again today to help with his itchy head which should help. Docs will be in a bit later to (verify or not) seizure activity. Once the docs have enough seizure activity, they will respect areas of Ryan’s brain causing the seizures as long as we all agree.
My sister and her family came to visit and Ryan absolutely loved the love they had to share and give him. He raced his cars with Uncle Jeff and drew on his doodle with Aunt Katie. What a blessing to have them in our lives! December 16: Motor mapping
330pm: Prayer warriors – Ryan and I need you and your prayers. He had motor mapping and after only 3 grids in his head were stimulated, he started seizing….and continued off and on for an hour. He’s sedated now and will be sleeping for awhile now….we’re moving back to ICU as they are concerned about his respiratory stats if he seizes again. Another surgery conference will be at 8am tomorrow morning with our neuro and neurosurgeon….I will know more info then and will update. Please pray that is the information they need about the seizures. That we can understand where Ryan’s motor functions are another way since the motor mapping is proving Ryan to being very vulnerable for…pray for my strength and peace. Shalom.
530pm: LOVE the LOVE coming from ALL over!! This sign (like others) will be with us for a VERY long time. Thank you Sue for bringing Grandma Pam’s wish come true for Ryan. His very own sign letting EVERYONE know the fighter he is!! Shalom!
10:30pm: He’s tuckered out and sleeping….still. Now its mamas turn to try and catch some z’s. Its been a really long day, but through it all, I’m reminded of [our pastor’s] service on Sunday – more specifically – Shalom! (Its perfect for this week!) We all need it – and the many different meanings of Shalom were seen (and felt) today – a state of calm without anxiety or stress (trusting in Him that all is for a reason!), wholeness, to be safe (seizures in the hospital are safer than home), a sense of well being, perfect (regardless of the challenges, we are ALL perfect to Him), complete (with God), healthy (what were trying to achieve here in Ryan with his seizures!), harmony (all of our support systems coming together for Ryan!), fullness (in Christ!), rest (what I will get tonight in the arms of God’s loving and strong arms!) of many other meanings, but the most common is Peace… May the peace of the good Lord above, be with you tonight, tomorrow, and the rest of your days! Shalom!!!
December 17: Itch a little itch.
930am: Somebody’s been wide awake and playing, itching, and wiggling all around the bed since 6am this morning!! Its almost nap time (already) and time for the doctors to come in and let us know what our options are from their surgery conference this morning. Praying for answers, peace, and strength to handle and get through it all. Thank you for your continued prayers too!!! Shalom
Britney had her Christmas band concert for school tonight and since it was my night to spend with her, I got to go. She plays the flute and did a great job! She was so excited for it and couldn’t wait for me to hear the songs they chose to play. She’s learning so much and growing into such an amazing lady to be around…I love it!
1030pm: It was a LOOOOOONG night last night and I’m just finally settling in tonight after getting a second (and third and forth) wind… Ryans day was great!! He was in a terrific mood all morning, playing, but was very restless. Once calmed down he slept a great nap, dad says. The surgery conference discussion from the docs was….interesting. They want to wait for Ryan to seize on his own instead of using the motor mapping to trigger the grids in his head. It was proven yesterday that his brain is very vulnerable but they want to see a Ryan seizure…not a machine induced seizure. We may look at different lights to stimulate or sleep deprive him, but we will not do the motor mapping again anytime soon. This could potentially be a long road ahead as Ryan has NEVER seized the way we see at home in the hospital….and thats what they want to see… Please pray for Ryan seizures as they will provide the real answers the docs need to see! I was with Brit tonight and really enjoyed her concert and some time with her catching up on our shows! Love my kids so much it hurts…. Sleep well my friends! I know I will be.
December 18: The Aunts visit again!
These two sweet faces and beings are my heart and soul! Love them bunches and bunches!! Brit comes up to see Ryan every other day and we love her visits so much!! My sisters both came today so that was awesome to have all three of us together…totally unexpected too. Always a great time with lots of laughs! Had a visit from Tim too again. Yay!! Update on Ryan: We saw the neuro about 3pm when he said from what he reviewed, Ryan wasn’t showing any seizure activity and he wanted to discuss a tentative end date to the long term monitoring with neurosurg…OK fine. Just let us know…. 2 hours later, both docs are in here and Ryan has had 4 electrical seizures from 1pm-437pm.. 1@20sec, 2@30sec, and 1@65sec!!!! This is GREAT news as we were convinced Ryan wouldn’t show anything for a few days at least! Thank you for your prayers! Keep them coming. We have sparks in that little brain….now we need a fire…but nothing too extreme!! Just enough for him to show what the docs need to move forward. Thank you!!!!
Update #2 for Wednesday: I forgot – rewrapped Ryans head twice today! Both times were very stinky and seemed to help the itchiness very little. He just wants the whole thing off!!! He was in great spirits today though and if he wasn’t bed ridden, would want out and to be running around this floor chasing all of his favorite nurses. Such a flirt!! He is very active in bed and we’re so thankful for the little but great activity in his brain that’s becoming more active too!! We will pray for more this week and have an answer during our meeting with our Neuro team on Monday. (tentative stopping point for LTM) Possible surgery/resection on Tuesday. Just another day right?
December 19: Dad/Papa’s Brithday
Because one birthday cake isn’t enough…. What a great night with my family for my dads birthday! I needed a good fun night with them….and boy did we laugh! Ryan was in great spirits and showing more activity in his brain but nothing clinical until this evening. Hoping what his dad mentioned and saw tonight was the clinical seizure we need/want…but afraid it isn’t enough. Regardless, we’re looking at surgery Monday or Tuesday next week for the resection of at least the temperal lobe. Blessed to have amazing family and friend support during all of this. I’m amazed and in awe. Shalom!
December 20: Katie and Abby visit:
4pm: Shout out to one of our favorite nurses who has spent more time with my Ryan the last week, than she has with her very own two beauties. Thank you for ALL you do! Your love, care, kindness, and sensitivity every time we see you, is so appreciated!! I am so glad you don’t ever get sick of Ryan putting stickers all over – the room, bed, floor, even your face…and you seem to even enjoy his love kicks. Hopefully after this next week, when you think of us, we can all be rest assured we’re just a FB message away instead of a stay up on 8! You make our time at Children’s easier…
11pm: This is what a nap looks like around here….non-existent. On days Ryan has napped, he doesn’t show activity at night….so I keep him up as he’s more susceptible to show activity on nights he doesn’t have naps! A temperal lobectomy is scheduled for Monday. (A resection of the temp lobe) This is where the Neuro and neurosurgeon is very sure the seizures are coming from and starting. If we get a clinical seizure, we will just have confirmation of that. They will load him with anti seizure meds and do motor mapping to be sure where his motor functions are. Praying and praising as God is bright and shining right through Ryan in all of this!
December 21: Go Fund me Started
Words cannot explain how blessed I am to have people in my life who support me and want to help anyway they can….here’s one way my sisters are putting it out there for YOU to give if you’d like. Thank you!!!!
December 22: Packer party in Ryan’s Room! We had a LOT of visitors today – Our family, our friends, and those that support us the most. What fun!
Ryan had an awesome, inspiring, true hero to kids like him visit today! Lucca is a therapy dog bringing smiles to kids faces today. And boy did he bring Ryan a HUGE smile. Unfortunately he couldn’t come into the room to see Ryan….but we loved seeing Lucca!! As you can see, we’re letting Ryans head get some air today. Look at his peach fuzz growing back!!! It’ll be buzzed again tomorrow during his left temporal lobectomy. Surgery is scheduled for noon – could be delayed for emergency purposes in other kiddos. Gods still got this and Ryan. He is with us…always!!
December 23: Left Temporal Lobectomy
Would you like a Christmas sticker? Were loaded and ready to be seizure free!! Since he was loaded at 7am – he has become a LOT more verbal. Meds are back on board! We’ll see if we can get off if them forever in the years to come! Mapping will happen about 930 – and we do NOT want seizures now and forever. The whole point of the motor mapping is them trying to find Ryans motor strip. They will trigger apart of the grids and it should move a part of his motor functions (arms, legs, hands, feet – something!) The neurosurg thinks it will be very helpful to know where this is in Ryans brain before surgery. Currently, we’re waiting for the docs, nurses and techs to be ready. In the meantime, Ryan and I are dancing to music (thank you Pandora app!) and putting stickers all over his bed. Please pray! Shalom. Rest assured for those with worry and fear for Ryan – God has Ryan in His gentle strong arms….today and everyday! 230pm: Please pray for Ryan. He went in about an hour ago and they just started the actual left temporal lobectomy about 20 minutes ago. Dear Lord, I pray the surgeons and doctors are working with you moving through them all day today! I pray for Ryan to be held and healed in your arms. For him to be seizure free of all of the storms in his head. I pray his brain is healthy and is able to make up for the tissue that is being removed today. Lord, I thank you for the support I have received in all of the action and adventure we have had the last two weeks. Without my support system, I would be lost and torn apart. Thank you Lord for reminding me that You are always with my children and I. Without You, we would not be able to do what we can and continue to. You’re undescribable love is never failing and all consuming. Thank you God!! Please continue to remind us this is Your plan…not ours! 620pm: Praising God….surgery is over and Ryan, God willing, will be seizure free forever! Praising God this is almost over and Ryan will be home soon. Praying he sleeps well and recovers fast. Can’t wait to see his eyes again!!!! Loving this boy! 1030pm: Ryan is sleeping and hopefully peacefully tonight. He needed a blood transfusion which started at the end of surgery but seems to be doing well from it. (Donate! Give blood!) The doctors suspect the stitches to healed in a few weeks. Praying for his recovery. Also praying his muscle tone from being bedridden for the last 2 weeks isn’t affected drastically. Thank you all for your continued prayers and support. It means the world to us!! Praying Ryan will be home by Friday!!
December 24: Recovery starts NOW!
3pm: More stickers, cars, and books – oh my!! Yay!! This guy is doing SO good today….making car noises and sticking those stickers everywhere – including on his new book and cars! (Thank you Jaclyn !!) He doesn’t have the strength yet, in his core or neck as he did three weeks ago, but with a bit of work at home and some PT exercises and fun play, he’ll regain that in no time! And we’re on Ryans time so no rushing anything! Thank you for your continued blessings of prayer during these last few weeks! Please keep your prayers coming. We’re not 100% seizure free but pray we will be! Merry Christmas!!
7pm: Swelling within 48 hours of surgery is normal. We’re seeing a bit of it tonight. But what an excellent day we had!! Once on the EMU, our favorite nurse (she knows who she is) reassured me Ryan was doing absolutely amazing compared to other patients…he was playing, moving around, verbalizing and even giggling today – which is all amazing stuff compared to what other patients have been known to do the day after surgery (stay in bed and sleep all day!!). I knew the resections recovery was going to be easier than the grid placement, but I didn’t imagine it to go this great!! Ryan is at his baseline for his personality already. He’ll be himself in no time – which could mean he will be home as soon as tomorrow!!! I’ve tried to sit him up and let him stretch. I was curious how his muscle tone held up the last few weeks – he held his head up almost 7 minutes before wanting to lay down. He wanted to get down – so while he held onto the bed and me onto him, he stood by himself for a minute before he wanted to climb back in bed. He’s been flirting like crazy with the nurse on tonight and is just fantastic!! He’s had another popsicle and some jello. We’ll try some breakfast in the am. Merry Christmas everyone!! Ryan is such a sweet and amazing and gorgeous reminder of what God can do in our lives if we give it ALL to Him. I am in awe of the love God has for ALL of us, the love I have for Britney and Ryan, and the love I feel from them and all of YOU!….the circle of faith is amazing and so worth trusting all of it to Him!!
December 25: Christmas Day!
4am: MERRY CHRISTMAS!! Most are up this early on Christmas morning because of the kiddos waking for the gifts under the tree….not IV machines beeping every 10 minutes because a little boy wants to suck his thumb.
9am: We’re pretty wobbly this morning – but we have ventured out to the play room! Not walking on our own and sitting up is shaky but Ryan has learned all of that before. Being laid up in bed for the last two weeks proves to be a challenge on his muscles today but nothing this little fighter can’t regain in the weeks to come!! Please keep those prayers coming. We definitely feel them!!
4pm: Favorite gift award for Ryan goes to Santa that visited the Ronald McDonald house where Brit has been staying with her dad when I’m with Ryan! He loves this one!! We washed his head for the first time in two and a half weeks today. He started his medication back this afternoon and he could go home tomorrow. He’s the sassy playful fun kid I remember and can’t wait for him to be home to start his recovery plan! Those muscles need some work! This Christmas has NOT been the same with him in the hospital…obviously… Merry Christmas everyone! Hug and tell those you love how much they mean to you!
7am: Someone is sitting up straight in a high chair and loving vanilla milk shakes!! Working on strengthening Ryans core and legs again, gotta start somewhere! He’s taken a few walks today and is sitting up for longer periods by himself in bed. Therapists are checking in and evaluating him for a referral closer to home in the weeks to come. Once we get his medication under control, and he’s covered, Ryan will be discharged. He will be on anti seizure medication until he’s seizure free for awhile. If Ryan proves to be seizure free or future EEG’s are clear of seizure activity, medicines will be weaned off. Thank you all for your continued prayers for Britney, Ryan, and I. We are walking the path God has put in front of us. I pray its a seizure free peaceful path from now on. Shalom!
There’s no place like home!! And we’re here!!!! Yay!!!Ryan’s meds have him VERY irritable. It will take about a week in order for his little body to get used to them. He’s still pretty unstable while walking but if he gained his core and sitting up as fast as he did this time….he will be walking again in no time!! Please pray for his safety and all of our peace. He’s got a love-hate relationship with EVERYTHING he comes in contact with right now. Its fun, but not. We love having him here and he tore his gifts open tonight… that was such a joy to watch!If you need to get in touch with me in the days and weeks ahead while Ryan is awake, chances are you will have to send a message or text. He needs a very watchful eye for awhile…Thank you all for your loving support. I’m in awe of it all!