So Riley has had a few more doctor visits in last week. She saw her pediatrician on Friday and weighed in at 21 lbs 15 oz. This is almost a five pound weight gain from a month ago. I plotted it on her growth chart, and it looks crazy...an 11 month period that is totally flat, then a spike of 25% in such a short time. She also saw her Ped. GI doctor who was happy with her progress, and released her from his care and gave us some feeding advice. That's the good news.
The not-so-good news is she is back to having breath-holding spells. Her neurosurgeon predicted those would not stop, and said they were unrelated to the brain tumor. Great. She hadn't had any in three weeks following surgery, so I was optimistic...thinking they must be connected somehow. Nope, they're back. Something makes her upset, starts crying, gets worked up and cries harder, freezes on end-expiration, and does not take a breath for 15-20 seconds until she turns blue and starts to pass out. When she finally relaxes she wakes back up and gasps for breath. After having 3 on Monday we took her in for a check-up on Tuesday (she was originally scheduled to go on Thursday for a follow-up with the neurosurgery team). They said she was doing well as far as recovery from surgery, but referred her to another neurologist on the team who examined her on Wednesday and thought everything was okay. The question has been whether or not she is a having any kind of seizure activity during these episodes, which can sometimes accompany the breath holding spells. We were suspicious a couple times that they looked different, and it made us wonder, but the doctor felt like what we were describing was typical for breath holding spells and not seizure.
I mentioned in an earlier post that while we were still at LPCH some student-athletes at Harker put on a "Run for Riley". When I got back to work I heard it was a pretty good event, but didn't get many details. I was just told that at the next school meeting they we tell us more about it. So Jenni and the girls were able to come with me to Monday's school-wide meeting. At the end of the meeting they ask everyone who had participated by running, or sponsoring a runner, to stand up. I stood so I could see across the gym, wanting to see how many people it was, or who all stood up. Well, I was totally shocked to see hundreds of people stand up, literally. I couldn't believe it, I had no idea the response would be so large...amazing. After a few nice words from the students that organized the event, they presented us with the money that was raised, as well as strings of 1,000 oragami cranes that students had folded. It was pretty overwhelming. The money that was raised is enough to pay Riley's medical bills...wow! The time and effort people had put in to give our family these gifts is truly a blessing to us. Plus, we got something else I've always wanted, a novelty size check, Happy Gilmore style! We can't give enough thanks to everyone from Harker who has been rooting for Riley. A special thank you to David and Arman who came up with the idea for the event, and got it organized (I hope I'm not missing anyone else). Thank you to everyone else who ran, sponsored a runner, created the 1,000 cranes, sent a card, donated, or simply shared their concern with me since getting back to work.
We were in complete shock to receive some money from some very special people to be used as a treat for Jaron and I. Amy, my absolutely amazing and kind-hearted sis in law, put out a request to help bless us as we went through this stressful time. We are thankful for these people, some of who we do not even know, and are appreciative of their generosity and selfless giving. A big THANK YOU to:
Derek and Amy (and kiddos)
Diane and Bob Massey
Kurtz Family
Brian and Stephanie Fuehrer
Dana Olson Fam
Carey Olson Fam
Moore Family
Wilson Family
Martin Family
Chuck and Debbie
Ray, Bev, Jonathan and Justin Massey
Lynnae and Chris Hoff
Harney Family
You guys ROCK!
I love routine. I love to know what my day has in store and what to expect. With that said, you must realize how incredibly hard the last few weeks have been for me. I am a creature of habit and I do the same things in pretty much the same order everyday. Don't misunderstand...I do have my fair share of surprises and fly by the seat of my pants sort of days, but on the whole my days usually follow a pattern. Today was the first day since going into the hospital with Riley that was a "routine" day. We had an appointment with her pediatrician this morning (more on that in a minute), but then the day fell back into a normal routine which was so lovely for me. I was struck as we played outside in the beautiful warm sunshine today how incredibly blessed our family is. We are so thankful to be together at home and that Riley is doing so well. As I pushed her in the swing and saw her huge smile I was in awe (as I am so often these days) that she had major brain surgery 2 1/2 weeks ago! God is so good!
Riley weighed in today at 21 pounds, 15 ounces! ( 15th percentile) Woohoo! She is playing and walking around and unless you saw her scar for life, you would never guess she has been through this amazing journey. She is laughing and we are having so much fun listening to her. We go back to see her Pediatric GI doc on Monday and then to Dr. Edwards (neurologist) on Thursday. Riley's next MRI is scheduled for May 6th.
Here are a few pics of us enjoying the Spring weather!
As Riley weens off the steroids, her sweet personality is coming through more and more. Tonight she played it the bath with Avery. It was so great to see her laughing, playing, and smiling. She has developed this laugh that sounds like such a mischevious little chuckle. After that she actually let Jenni put her down on the living room floor and she ended up walking over to me, then to her toy baskets to play...WOW. It was the first time that she has really walked since her surgery, she was a little unsteady...no suprise, since she has gained 20% of her bodyweight and hasn't walked in 3 weeks :) Her mood is still swinging back and forth though, and for every smile there's a time where she is trying to claw at her face because she wants a snack. There is definitely more and more of the sweet/happy Riley coming through every day.
Her digestive system is definitely still trying to recover too. It's hard to say how much of her trouble is related to the steroids, and how much is related to digestive difficulties. Tomorrow is the last day of the Decadron, so we will see in 2-3 days what changes. I think that has a lot to do with her huge belly and puffy cheeks. She is definately gaining weight though, she is almost unrecognizable to me...it's crazy. She will see her pediatrician later this week, and her ped. GI specialist next week to monitor her nutrition/weight/etc.
We were able to bring Riley home this afternoon. 17 days at the hospital was enough. It feels weird to be at home, it makes all the events of the last 2 or 3 weeks seem even more like just a trip to the Twilight Zone. Riley is doing well, but still has 8 days left of the Deximethisone (steroids). They are making her crazy. She is moody, grouchy, needs to be in direct physical contact with us, will not let you put her down for even a second, she swats at everyone and grunts, sometimes starts slapping herself in the face. They also make her crazy hungry so she is still CONSTANTLY wanting something to eat and keeps saying "sna, sna, sna, sna, sna,sna" (snack). She will surely gain weight no problem now, the doctor is more concerend what her eating/appetite will be like once she is off the steroids. The whole hospital stay, all the side effects, it all seems like such a small price to pay for all the live-saving care Riley has recieved. I was trying to describe to Jenni today a feeling of almost not wanting to leave the hospital...I think it boiled down to feeling like I would do anything for my daughter. Or wishing I could do more, instead of her taking the brunt of it all. It was a feeling that going home was almost a luxury and I'd stay in there as long as it took (even in a shared room with the obnoxious, belching, beat-boxing guy).
Everything happens on "hospital time" here, so who knows if we will really get out of here anytime soon. They still have to remove her "picc line", the central IV line that runs up her arm all the way to her heart. It kind of freaks me out to think that they just slide that thing right out...weird.
There is also a "Run for Riley" happening at Harker today. It was organized by some of the student-athletes as a way to support Riley and our family. How awesome is that? I'm really hoping to get Riley home so I could stop by the school and see what's going on.
More good news as Riley was able to eat a regular diet yesterday without experiencing gas and bloating. No vomiting and she ate a ton of calories so all are happy here. The docs should be by in a few minutes and we are hoping for discharge today. We are all ready.
Very good news today. The final pathology report came back today, confirming that the tumor was a low-grade pilocytic astrocytoma. That means there is no other treatment that needs to be done right now, it just needs to be monitored to make sure it does not continue to grow. There is still some of the tumor remaining, that could not be removed. This could either (A) go dormant, (B) recede/get smaller, or (C) continue to grow. Before they performed the surgery they said if they could get 90% of the tumor, there would be much less chance of it recurring. Since they did get 90% or more of it, we are hoping the chances of it returning are small but we don't know exactly. She will need an MRI every three months at first to monitor it, and they will follow her many many years it sounds like.
Okay, so it's been 15 days of living in a hospital...but the worst of it is over, just finishing out her recovery now. The latest silver lining of being stuck in the hospital is that because of Riley's digestion distress they took a stool sample to test for some kind of potential bacterial infection, this could potentially be contagious, so Riley has had a "contact precaution" for the last couple days. This means she can't be in a shared room...bummer! So we got upgraded to a luxury suite, a private room with a recliner, rocking chair, bathroom, etc. So nice. The test turned out negative, so we are keeping our fingers crossed that they don't ship us back to where we were last.
On another note, Avery seems to be doing great. I really thought by this many days in she would be more out of sorts, or more homesick. She has bounced around staying with two sets of grandparents, an aunt/uncle/cousins, and she has adapted well. She probably thinks she is on vacation. She knows Riley had an owie on her head, but hasn't seemed to mind seeing her all wired up and scarred...she is so sweet to little Riley, and she really does "rock".
Just in case you really wanted to see Riley's incision.
Riley is trying to work back up to a regular diet after having so much bloating and trouble with eating anything and everything the first time around. She's be eating "clear" stuff the last two days...Jello, broth, and some sorbet type stuff that she loves.
As Jaron previously posted, it has been a rough 2 days. Riley is still struggling with bloating, gas, diarrhea, and horrible discomfort. She is not able to eat and the poor girl's butt must be hurting like crazy from so many diaper changes. I feel so sad for her and the hardest part is we cannot really do much to comfort her. I have been feeling so frustrated and since I am already sleep deprived my patience is thin. I am ready for her to be better, to be home in my own bed, and back to a normal routine. I have cried too many times to count over the past 2 weeks and am ready for this to be a distant memory. I just want her to be well.
Riley has been having a rough time since mid day yesterday, she has an insatiable appetite/thirst...and CONSTANTLY wants to be eating and drinking. They said she could have whatever we wanted but we have tried to limit her because she would get out of control. Now she is all "bloated" for lack of a better term (ileus?)...a side effect of all the anesthesia (3 MRI's and her surgery) and the narcotic pain meds she's gotten since surgery. So now she can't eat or drink anything til that sorts itself out. They x-rayed her belly this morning to make sure that's all it is. She was up all night whining in discomfort, and asking for her cup or a cookie the whole time. Finally Jenni and Riley both fell asleep about 10am, hopefully they will sleep for a while, then were supposed to get her up and about to work out some of that air out of her gut.
The good thing...even with stuff her face, she has not vomited. Wow. I'm still hoping she can avoid another surgery.
Last night, Riley had a blood transfusion and her heart rate was super low so it was a busy night. I slept from about 10pm until 3am then went to relieve Jaron at Riley's bedside. He was able to sleep a little bit, but I can tell he is super tired and still very stressed. The neurology team came by this morning and removed Riley's bandage (pic later). It looks a bit scary, but they said it looked good. She is able to move around as much as she can tolerate and eat and drink what she likes. She drank so much this morning that her stomach is a bit distended. Hopefully the nap she is taking now and a break from her cup will make her feel a bit better. She is loving the pacifier they gave her which is so weird because she never took one before. We are blaming it on the tumor. I think from now on, we will blame everything on that nasty tumor! :)
We were moved out of the PICU this morning and back up to 3 South. It is much more comfortable and less stressful. There are not as many beeping monitors to freak us out. We will stay up here for a few days to count her calories and if she can do it on her own without throwing up, we should be out of her by early next week. Her GI tube and fundoplication surgery is on hold for now until we see if she can manage on her own. Please pray for that! We would love if her body could just snap back to normal and she could aviod another surgery. We are still waiting on the pathology report. Hopefully in another day or two we will hear the final word.
On another note, I have been so incredibly awed by the support and outpouring of love we have received. It brings me to tears just thinking of how many people care for our family and are engrossed in her story. It is amazing to feel so cared for. Throughout this journey, adjusting to hospitilization, the fear of the unknown when hearing about the tumor, coming to grips with the reality of Riley's diagnosis, waiting and then seeing her through surgery, and starting our road to recovery, I have had my moments of fear. But overall I have felt a peace. I know who is in control and I have chosen not to fight with that. I trust in the doctor's care. All that is left for me to do is hold her hand, snuggle her up, and tell her I love her.
I have been so thankful to have friends and family who have given me breaks, provided us with food, given us items of comfort, and I am really grateful for caffeine. :) I feel good about the direction we are headed in and will face each day with optimism and a desire to get her 100% healthy. I am looking forward to hearing her laugh without coughing and gagging, screaming with joy, playing hard with her sissy and not worrying about her falling and stopping breathing... to enjoy her childhood without great fear will be a fantastic gift.
Riley is doing pretty good. She past her eat/drink/swallow food test that the occupational therapist gave her, and she freaked out when the applesauce came out...she was ravenous, and we had to prevent her from guzzling the juice way too fast. The poor girl must have been so hungry and thirsty. They have been monitoring her sodium levels very closely (they want to keep them up to keep pressure in the brain down) and also her hematocrit, which has been low. They finally decided it was too low and she will need a blood transfusion, a small amount, maybe 100 or 150 mL, which she will probably get tonight.
What else...
-1 more day in ICU
-more talk about whether she needs another surgery (fundoplication and G-tube for feeding).
-some days in a "regular" room to recover
-she needs to start eating and drinking, and most importantly, not vomit
-she needs to sleep...she keeps fighting it and the ICU has a lot of activity.
To follow up on Jenni's post, the little baby that was getting a transplant was so sweet and I was praying for her...but Jenni was not joking, her father was totally annoying
Since we have been here at LPCH I have been super sensitive to patients and their families. There are so many sad things here and my heart has been so full of love for everyone I have come into contact with. I have found myself being pretty understanding and patient for all that goes on here...until tonight. We are in a 4 patient room only seperated by curtains. There is a family next to us whose daughter is very young (younger than Riley) and is going to be undergoing a transplant of some sort. When I first got here to relieve Jaron she was screaming, but it really did not bother me. I felt for her and her family and was sympathetic. Now it has been about an hour and the dad has yelled at the mom a few times, is burping very loudly and extending them out in a very gross way, and is beatboxing in a very annoying fashion. Yes, I am at the end of patience. It's going to be a long night.
They thought Riley was doing good enough and breathing well enough on her own that they could extubate her. They turned down all her sedation meds and she woke right up, then they removed her breathing tube and she cried right away and starting calling for "Ma-Ma"....SOOO good to hear her talk, especially after they warned us it was possible she wouldn't talk for a while. Eventually she said "Da-da" too, so I'm loving that...even if it is a 20:1 ratio of mama to dada.
She looks pretty rough, like she's been through the ringer...but considering all she has been through she is doing great. I'm sure she will be groggy for quite a while and have some pain to try to treat, she will be in the ICU 1 or 2 more days. So Jenni and I will try to take shifts being at her bedside. I hope she will continue to to recover quickly and that her pain level will not be too bad...I just hate to see her grimmace and wiggle around in discomfort.
Riley's MRI came back and it looks good. The brain stem has expanded and looks more normal and where the tumor once was, is now open space for spinal fluid to flow. She still has her breathing tube as of now (1:35 pm), but by 2pm they will turn off the oxygen completely so she will be breathing on her own and by 3pm she should be extubated. It is hard to sit in the ICU and wait, but we are anticipating holding our baby girl in just a few hours.
9:40 am - Riley is having her repeat MRI.
The report from the doctor was that the surgery went well today. It took about 6 hours and they were able to remove the majority of the tumor, probably greater than 90%. There was no evidence during surgery of any nerve disruption, and no surprises or obvious complications.
Riley is now in ICU and still sedated and intubated. The ICU is a stressful place to be, Riley has so many IV's, monitors, wires, tubes, etc. All the beeping and alarms will freak you out in a hurry. Tomorrow she will have an MRI of her brain to get an "after" picture and hopefully be extubated by the end of the day/night. Time to try to get some sleep.
2:15 The first report from the surgery team is that everything is going well so far, it appears to be a "low-grade" tumor (that's good) and they are making good progress on the resection. We are trying hard to distract ourselves, but I feel like I'm going to end up with an ulcer!
12:03 They told us at 12:03 that they had just started operating.
10:20 Jenni and I sat with Riley in pre-op this morning until they gave her a "twilight" drug and took her back to start prepping her for surgery about 10:20 or so. They said it would take about 90 min. to get her all ready. They should be telling us soon when they actually begin surgery.
Doesn't she look so much different with some fluids and food in her?
Today, for me, has been filled with a sense of waiting for something to happen. It is nice to just sit here with Riley, but it feels like it is just the calm before the storm. The later in the day it gets the "heavier" and closer it starts to feel. It will be the last time I hear her say "Da-da" for a while. She will be sedated for at least 36 hours or so (surgery ~8hrs, then still sedated for another 24 hours or so of her initial recovery time). I think the next few days will be especially long and hard, but I have faith that God will care for my (and his) sweet baby girl, Riley.
I also want to thank everyone who has called, emailed, prayed, texted, commented on the blog...it is all so encouraging. If you haven't heard back from us, believe us when we say it is still appreciated. With so many people following her journey, it is hard to communicate with everyone, so we will continue to use the blog to post updates.
To give you an idea of tomorrow, I think they will take her down about 6:30 am tomorrow, begin prepping her at 8:30, and operating around 10:00. Thanks for your prayers.
Jaron
Yesterday was a pretty non-eventful day. We just had a day of counting calories and resting. Riley has been on IV fluids and she was on lipids all day yesterday and continues today. She is also on a steroid to help reduce swelling. I think the combination of all of these has made her look so good. She has gained over a pound since we have been here and it is easy to see how much fuller she looks. She just has a healthy glow about her since she is actually nourished and hydrated. She continues to be able to eat on her own and has not thrown up at all. This is probably due to the steroid which relieves pressure and swelling near the brainstem and causes a decrease in nausea and vomitting. Yahoo!
She was so happy yesterday. We went on a few wagon rides and she was visited by a physical therapist who blew bubbles and tossed a ball back and forth with her. Once she warmed up to him she was all smiles.
A friend of Jaron's came by and brought the girls a gift and also brought us lunch which was awesome. The last time I had eaten lunch was on Tuesday. You rock, Evan! Our dear friends, Bob and Glenda, and baby Ella of course, came for a short visit and brought us delicious chinese food for dinner and super yummy chocolate cupcakes. After that I headed home for a bit to spend time with Avery. I made her dinner and she then devoured a cupcake! She would have probably ate the entire box if I had let her. She helped me clean up a few things and then I gave her a bath and put her to bed. The few hours I was home made me feel a bit normal and gave me joy in being able to participate in the simple things with my beautiful Avery. She had been such a trooper and though she does not understand what is truly going on (she thinks Riley is sick and at the hospital for blood tests) she has been patient and loving every step of the way.
Today will be another low key day, but the prospect of tomorrow is starting to bring fear into my mind. I know she is being uplifted in prayer by literally thousands of people and I know she is in the arms of Jesus who will be laying right next to her during surgery and will never leave her side.
"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5:1-5
