Hey folks,
I'm excited to say that this will be my last post from the hospital! Jordyn has recieved the green light and is being released.
Last night was fairly uneventful, though we had some issues with her IV. She needed one more dose of the steroid, and her IV was leaking. Go figure. So they decided to put a new one in and this time put it in her forearm. One nurse tried, but kept missing the vein, then another tried and finally got it in. Poor Jordyn, she hated it. Around 11pm, the nurse came in to check on her and found that she was really sweaty. She didn't have a fever though. The problem was that she was sweating enough to losen the tape on the new IV. The nurse got a new piece of tape, took the old one off...and out came the IV. We were horrified--would she have to get a new one? Luckily, she had already had a little over half of the dose of Steroids, so they decided that she could do without, and just go ahead and start on the oral meds. Thank goodness. After that, we all got the most sleep that we've had this whole time.
Early in the morning the neurologist came in and confirmed, she was doing well and she'd get to go home...right after breakfast! He told us that "the proof is in the pudding". Everything that they expected from ADEM had happened, and therefore, we are assuming she is on the mend and there is no other problem to watch out for. She will be coming back here mid-week for physical therapy, we will continue to monitor her blood pressure and blood sugars, and then she will have another MRI the third week of November. By that time, the swelling should be all gone and it should come back all clear.
Well, Jordyn has eaten her breakfast, had a small nap...and Jon tells me the discharge papers are waiting. Thanks again to everyone who has supported us. Feel free to call or come visit this week. I will update periodically as her therapy continues... :)
Saturday, October 31, 2009
Friday, October 30, 2009
Friday Oct 30
Hello everyone. Jordyn is taking a nap, so I thought I'd take this opportunity to update the blog. Last night, Jordyn was very tired from all of the moving around she had done both with the therapists, and with Jon and I. We did a bit of our bedtime routine, including a sponge bath and stories. She had just fallen asleep when yet another doctor came in and woke her up. This time, we had to check her blood sugar right before bed. She hates getting her finger pricked, as was quite upset. They have been monitoring her blood sugar all day. The steroids that she is on can make a person hyperglycemic, so they wanted to keep a close eye on it. At lunch, her sugar was up to 315--very high. They decided to keep monitoring all night in case there were any spikes. Fortunately, the levels went down during the night, and they decided that it wasn't going to be a serious problem. We will have to keep watching it though, as long as she is taking steriods.
The nurses also had to re-tape her IV last night before bed. She had been moving around so much, it had began pulling out. This was quite an ordeal, and made Jordyn upset. They actually had to tape her arm to a board to keep her from bending and twisting it at the elbow. She really didn't like this, but was so tired that she didn't fight it too much. This just made therapy today a little bit more difficult.
Once Jordyn fell asleep last night, her heart rate dropped into the 40s. We were all very worried because she is normally in the high 60s-80s. I had a hard time sleeping because her alarm kept going off and her heart rate was so low. She was sleeping soundly. Finally they called in a doctor and he checked her out. He told me that he wasn't worried about her rate, because, although low, it was steady. Her oxygen was good, and her breathing and blood pressure were good. He said that with this disease (ADEM), there are not really heart problems associated. What he was worried about was blood sugar, and that seemed to be ok as well. Some people just have lower heart rates, and as long as all the other things are ok, there is nothing to worry about.
This morning was eventful as well. Jordyn woke up and was in good spirits. She wanted to look out her window. She walked over to the couch I slept on and we sat and looked out the window. Then the doctor visits started. The rehab doctor came in and told us some good news. Jordyn will have to go to rehab only 3 times a week, and she'll get to go to Community East, right by our house! She thinks that this will be sufficient to get to a full recovery. The neurologist team came in and they told us that Jordyn is doing very well indeed. They explained that this sort of disease is usually a one-time-only thing. Once a child heals from it, it doesn't usually come back--in 95% of cases. In the rare case that it does come back, it usually indicates that there is something else going on. But it is rare. We will have to check her blood pressure once a week, and get a kit to check her blood sugar. She will be on a course of steroids, gradually reduced in dose, for six weeks. We aren't sure when she'll be able to go back to school yet.
A little while later, I went down to visit with Olivia and Gloria in the cafeteria, and two carebears came to do physical therapy with Jordyn and Jon. A lot of the nurses and doctors are dressed up today for a costume contest at 1pm. I hope Jordyn is up to going and seeing all the costumes! Her IV was taken off and she was able to move around cord free. In therapy, they had Jordyn walk to the playroom and play a fishing math game. She did very well, controlling the fishing pole and getting down on her knees and up again. She had a little trouble with the math, and using her fingers to count, but we'll work on it. Next they had her walk up and down a set of stairs. She did ok going up, but going down was very difficult. She definitely won't be able to navigate stairs alone for quite some time. But she has made so much progress in such a short time--we are thrilled!
Now for the best news of all....ready? Jordyn gets to come home...Tomorrow morning!! We are so very excited! There is a lot we will need to do to get the house ready for her, like adding an extra railing on the stairs and a baby gate, a railing on the porch steps and maybe a futon in the living room. But we are ready to get home and get started. This also means that she will be able to dress up for Halloween and help hand out candy. It's the next best thing to trick-or-treating, and she seems excited about that. Well, that's all for now. I'll be sure to post any other news or changes as I can. :)
The nurses also had to re-tape her IV last night before bed. She had been moving around so much, it had began pulling out. This was quite an ordeal, and made Jordyn upset. They actually had to tape her arm to a board to keep her from bending and twisting it at the elbow. She really didn't like this, but was so tired that she didn't fight it too much. This just made therapy today a little bit more difficult.
Once Jordyn fell asleep last night, her heart rate dropped into the 40s. We were all very worried because she is normally in the high 60s-80s. I had a hard time sleeping because her alarm kept going off and her heart rate was so low. She was sleeping soundly. Finally they called in a doctor and he checked her out. He told me that he wasn't worried about her rate, because, although low, it was steady. Her oxygen was good, and her breathing and blood pressure were good. He said that with this disease (ADEM), there are not really heart problems associated. What he was worried about was blood sugar, and that seemed to be ok as well. Some people just have lower heart rates, and as long as all the other things are ok, there is nothing to worry about.
This morning was eventful as well. Jordyn woke up and was in good spirits. She wanted to look out her window. She walked over to the couch I slept on and we sat and looked out the window. Then the doctor visits started. The rehab doctor came in and told us some good news. Jordyn will have to go to rehab only 3 times a week, and she'll get to go to Community East, right by our house! She thinks that this will be sufficient to get to a full recovery. The neurologist team came in and they told us that Jordyn is doing very well indeed. They explained that this sort of disease is usually a one-time-only thing. Once a child heals from it, it doesn't usually come back--in 95% of cases. In the rare case that it does come back, it usually indicates that there is something else going on. But it is rare. We will have to check her blood pressure once a week, and get a kit to check her blood sugar. She will be on a course of steroids, gradually reduced in dose, for six weeks. We aren't sure when she'll be able to go back to school yet.
A little while later, I went down to visit with Olivia and Gloria in the cafeteria, and two carebears came to do physical therapy with Jordyn and Jon. A lot of the nurses and doctors are dressed up today for a costume contest at 1pm. I hope Jordyn is up to going and seeing all the costumes! Her IV was taken off and she was able to move around cord free. In therapy, they had Jordyn walk to the playroom and play a fishing math game. She did very well, controlling the fishing pole and getting down on her knees and up again. She had a little trouble with the math, and using her fingers to count, but we'll work on it. Next they had her walk up and down a set of stairs. She did ok going up, but going down was very difficult. She definitely won't be able to navigate stairs alone for quite some time. But she has made so much progress in such a short time--we are thrilled!
Now for the best news of all....ready? Jordyn gets to come home...Tomorrow morning!! We are so very excited! There is a lot we will need to do to get the house ready for her, like adding an extra railing on the stairs and a baby gate, a railing on the porch steps and maybe a futon in the living room. But we are ready to get home and get started. This also means that she will be able to dress up for Halloween and help hand out candy. It's the next best thing to trick-or-treating, and she seems excited about that. Well, that's all for now. I'll be sure to post any other news or changes as I can. :)
Thursday, October 29, 2009
Thursday Night
Well, almost a whole day has passed and I haven't updated yet. We've been very busy today with keeping Jordyn active. She slept pretty fitfully last night until 3-4am. She said she couldn't sleep with the lights on. The problem was, all the lights in the room were off, but I couldn't turn the hallway lights off. She finally got to sleep, only getting up about once an hour to go to the bathroom.
Jordyn was awake by about 9:30am and ate a little breakfast (all she wanted was a pop tart, but we were mean and coerced her into eating a boiled egg and a few bites of sausage first). Shortly after breakfast, the neurologist team came in and checked her out. They said that she seems to be right on track for recovery, and is doing very well. Good news! They could see a definite improvement in her motor skills. Next came the physical therapists. Unfortunately, Jordyn had just fallen asleep and they had to wake her. But, being the trooper that she is, she got right up and did what they asked. They had brought in Mr. Potato Head and Connect Four. Shortly after they did a few minor tests, they had her sit up in bed and then get up and stand to play with the potato. This she did great at. (There are pictures on Facebook) After a little while the nurse did some checking and found that Jordyn's H1N1 tests all came back negative, and she was taken off her quarentine--all the nurses and dr.s were required to wear gowns, gloves and masks when they came in. So the therapists took off their gear and we actually took Jordyn over to the play room to finish her therapy.
It was amazing the difference between yesterday and today. She was walking much more steadily (less shaky, though we still have to hold onto her for safety). Her balance isn't completely returned, but she can take a few steps without help. When we got to the play room, she was so tired and didn't want to do much, but the therapists convinced her to play a game of Connect Four. At this time, we decided we'd try to have her eat lunch in the play room--we knew if she went back to the room, she'd just go to sleep. Jon ran down and got a Happy Meal for her with a chocolate shake. By the time he got back, she had moved over to a toy work bench and then stood up and built a tower of very large legos. It was great to see her bend down, pick up a block and stack them neatly. We had her eat a little and then headed back to the room. The therapists said she is doing wonderfully and they were impressed.
Later on, a dr. from the rehabilitation center came and evaluated Jordyn. She said she may be a candidate for out-patient rehab. The biggest concern is that our house is two-storied. We may have to just have her set up camp downstairs.
Jordyn and I were playing with her stuffed animals in her bed, and she loved it. She actually was active in the playing and made Buddy squeal when the Catberry ghost came near him. Then she was laughing loudly when the penguin pillow would slide down the hill made by her knee under the blanket. The rehab dr. was outside and heard all of this and was very impressed. We learned later that the dr. said she may not even be a candidate for rehab at all!
Just before bed tonight, we took Jordyn back to the playroom, and she walked there almost entirely by herself. She was able to squat down and sit on the floor and hold a video game controller (though she quickly got tired and had me play!). Her nurse was very happy to see this much change in so little a time. We headed back to the room with a snack and gave her a sponge bath. She brushed her teeth, watched an episode of Dora, and is now getting bedtime stories. We thought that it would be a good idea to get the bedtime routine started again, and hopefully help her sleep better tonight. (Jon and I could use some of that ourselves!)
Oh! I taped all of Jordyn's get-well cards up on the cabinets in front of her bed. She really enjoys looking at them, and is able to read them from in her bed--for the most part! Again, thanks to everyone who has given us support, food, care packages, and cards. Your love and good energy is helping! I think that is all the news I have for today--at least all my sleep-deprivated mind can think of. Let's hope for more good news tomorrow!
Jordyn was awake by about 9:30am and ate a little breakfast (all she wanted was a pop tart, but we were mean and coerced her into eating a boiled egg and a few bites of sausage first). Shortly after breakfast, the neurologist team came in and checked her out. They said that she seems to be right on track for recovery, and is doing very well. Good news! They could see a definite improvement in her motor skills. Next came the physical therapists. Unfortunately, Jordyn had just fallen asleep and they had to wake her. But, being the trooper that she is, she got right up and did what they asked. They had brought in Mr. Potato Head and Connect Four. Shortly after they did a few minor tests, they had her sit up in bed and then get up and stand to play with the potato. This she did great at. (There are pictures on Facebook) After a little while the nurse did some checking and found that Jordyn's H1N1 tests all came back negative, and she was taken off her quarentine--all the nurses and dr.s were required to wear gowns, gloves and masks when they came in. So the therapists took off their gear and we actually took Jordyn over to the play room to finish her therapy.
It was amazing the difference between yesterday and today. She was walking much more steadily (less shaky, though we still have to hold onto her for safety). Her balance isn't completely returned, but she can take a few steps without help. When we got to the play room, she was so tired and didn't want to do much, but the therapists convinced her to play a game of Connect Four. At this time, we decided we'd try to have her eat lunch in the play room--we knew if she went back to the room, she'd just go to sleep. Jon ran down and got a Happy Meal for her with a chocolate shake. By the time he got back, she had moved over to a toy work bench and then stood up and built a tower of very large legos. It was great to see her bend down, pick up a block and stack them neatly. We had her eat a little and then headed back to the room. The therapists said she is doing wonderfully and they were impressed.
Later on, a dr. from the rehabilitation center came and evaluated Jordyn. She said she may be a candidate for out-patient rehab. The biggest concern is that our house is two-storied. We may have to just have her set up camp downstairs.
Jordyn and I were playing with her stuffed animals in her bed, and she loved it. She actually was active in the playing and made Buddy squeal when the Catberry ghost came near him. Then she was laughing loudly when the penguin pillow would slide down the hill made by her knee under the blanket. The rehab dr. was outside and heard all of this and was very impressed. We learned later that the dr. said she may not even be a candidate for rehab at all!
Just before bed tonight, we took Jordyn back to the playroom, and she walked there almost entirely by herself. She was able to squat down and sit on the floor and hold a video game controller (though she quickly got tired and had me play!). Her nurse was very happy to see this much change in so little a time. We headed back to the room with a snack and gave her a sponge bath. She brushed her teeth, watched an episode of Dora, and is now getting bedtime stories. We thought that it would be a good idea to get the bedtime routine started again, and hopefully help her sleep better tonight. (Jon and I could use some of that ourselves!)
Oh! I taped all of Jordyn's get-well cards up on the cabinets in front of her bed. She really enjoys looking at them, and is able to read them from in her bed--for the most part! Again, thanks to everyone who has given us support, food, care packages, and cards. Your love and good energy is helping! I think that is all the news I have for today--at least all my sleep-deprivated mind can think of. Let's hope for more good news tomorrow!
Wednesday, October 28, 2009
Wednesday Night
Jordyn is finally sleeping. She had a hard time getting comfortable tonight. The doctors said she might get a bit more irritable with the steroids. That along with the added discomfort of being confined to a hospital bed made it a bit difficult to get to sleep.
Earlier today, Jordyn saw not only the physical therapist, but the occupational therapist as well. She was given crayons and a coloring book and asked to try coloring. We were pleased to see that Jordyn was able to do a connect-the-dots page with minimal difficulty. She had no trouble holding the crayon, and only a little trouble getting the crayon to go where she wanted it to go. She was also given putty to play with, which she enjoyed. Jordyn was able to pull it apart and stretch it out. After a little while, she got kind of frustrated with it--it got so stringy!
I am so happy to report that we have seen improvement in Jordyn today. She seemed to be much more alert when she was awake. She was able to focus on words that were in front of her and hold her eyes still longer. Also, she was able to walk to the bathroom, with much less support than yesterday. She seems a lot less shaky, and while still very off-balance, she is able to sit up and scoot across the bed, stand and walk to the bathroom, and pull her clothes up and down (with balance support from one of us). She still has a long way to go, but she is already making progress, and we couldn't be happier!
I would like to thank everyone who has come to visit us in the hospital, prepare and/or deliver food and care packages, and send cards. We all appreciated getting to eat real food. And Jordyn really liked reading the cards and looking at all the great pictures from her friends and classmates. She smiled so big and giggled a lot while looking at the cards--it was so good to see her so happy! Thank you again, and we hope that we can see you all soon.
Earlier today, Jordyn saw not only the physical therapist, but the occupational therapist as well. She was given crayons and a coloring book and asked to try coloring. We were pleased to see that Jordyn was able to do a connect-the-dots page with minimal difficulty. She had no trouble holding the crayon, and only a little trouble getting the crayon to go where she wanted it to go. She was also given putty to play with, which she enjoyed. Jordyn was able to pull it apart and stretch it out. After a little while, she got kind of frustrated with it--it got so stringy!
I am so happy to report that we have seen improvement in Jordyn today. She seemed to be much more alert when she was awake. She was able to focus on words that were in front of her and hold her eyes still longer. Also, she was able to walk to the bathroom, with much less support than yesterday. She seems a lot less shaky, and while still very off-balance, she is able to sit up and scoot across the bed, stand and walk to the bathroom, and pull her clothes up and down (with balance support from one of us). She still has a long way to go, but she is already making progress, and we couldn't be happier!
I would like to thank everyone who has come to visit us in the hospital, prepare and/or deliver food and care packages, and send cards. We all appreciated getting to eat real food. And Jordyn really liked reading the cards and looking at all the great pictures from her friends and classmates. She smiled so big and giggled a lot while looking at the cards--it was so good to see her so happy! Thank you again, and we hope that we can see you all soon.
Wednesday, October 28
Hello all. Today is day 2 of the steroid treatment. Jordyn was a bit restless over the night, and was missing her own bed. Daddy brought in a few of her toys from home, as well as her own pj's. She seems a little more alert today, though it is still difficult to understand her speech.
Jordyn was able to eat breakfast this morning and ordered a bunch of fresh fruit (so far her favorite thing to order!). Around 11am a physical therapist visited the room to get Jordyn up and moving. We took her out in the hallway and over to the playroom in this unit. Jordyn seemed happy to be up, though she is still unable to walk on her own. In the playroom, we sat her down at the table and looked through the games. She really wanted to play Mouse Trap (which she saw and read from across the room), but when we got it out, a lot of the pieces were missing. I told her that I would get her a brand new Mouse Trap game as soon as I could. :) She ended up playing Connect Four with the therapist, and did a good job getting the pieces into the grid. Afterward, we walked back to the room and she took a nap.
The therapist told me that she is assuming that Jordyn will indeed need to go to Methodist for rehabilitation. She will probably need to re-learn how to walk and maybe how to talk. The good thing is that she is alert and very aware of her surroundings.
That is all I know for now, but she is in good spirits and seems to be happy. Please continue to send your good toughts and positive energy her way. She still has a long way to go!
Jordyn was able to eat breakfast this morning and ordered a bunch of fresh fruit (so far her favorite thing to order!). Around 11am a physical therapist visited the room to get Jordyn up and moving. We took her out in the hallway and over to the playroom in this unit. Jordyn seemed happy to be up, though she is still unable to walk on her own. In the playroom, we sat her down at the table and looked through the games. She really wanted to play Mouse Trap (which she saw and read from across the room), but when we got it out, a lot of the pieces were missing. I told her that I would get her a brand new Mouse Trap game as soon as I could. :) She ended up playing Connect Four with the therapist, and did a good job getting the pieces into the grid. Afterward, we walked back to the room and she took a nap.
The therapist told me that she is assuming that Jordyn will indeed need to go to Methodist for rehabilitation. She will probably need to re-learn how to walk and maybe how to talk. The good thing is that she is alert and very aware of her surroundings.
That is all I know for now, but she is in good spirits and seems to be happy. Please continue to send your good toughts and positive energy her way. She still has a long way to go!
How it started...
Hello all,
I wanted to find a way to keep everyone posted on how Jordyn is doing and what is going on with her recovery. I know the kids in her class were requesting a blog, so they could get daily updates in school. Luckily, they have computers available to us in the Parents Waiting Room here at Riley. I will try to update this daily, and whenever we get more news. Thanks for all of the well-wishes and prayers. We appreciate it all.
Jordyn had been sick on and off for a few weeks, as were a lot of the kids in her school. We weren't very concerned and just kept her home when she seemed feverish or too tired. When Fall Break rolled around, Jordyn went with her dad and sister, Olivia, to visit family. That's when Jon noticed that she wasn't quite herself. She seemed extremely tired and out of it. She fell asleep on the way home that night and went straight to bed. She seemed sleepy the next day, but not sick. We stayed home and she was on the couch most of the evening. Her doctor was called and, because the common theme throughout this whole two weeks of on-and-off illness was a headache, the doctor called in a prescription for allergy meds and antibiotics. By the end of the day Saturday, Jordyn had her first dose of the medicine and went to bed very early.
SUNDAY, Oct. 25
Sunday morning was when we first noticed something was very wrong. Jordyn got up some time in the morning to use the bathroom and said something about the floor board being "wobbly". We just assumed that she was tired, and maybe had low blood sugar due to not having a great appetite for a good while. However, when we decided she needed to get up and eat something around 9:30 or 10, she said it again. This time we really noticed that she was extremely off-balance and "wobbly". We carried her downstairs and put her on the couch. Still assuming low blood sugar and maybe an ear or sinus infection, we had her walk to the dining table and eat a bowl of cereal. At this point we noticed that she had a hard time getting the spoon to her mouth and she was also having a lot of trouble speaking. We decided to wait a while and see if the food helped. However, by late afternoon, it became very clear that she wasn't getting better and we decided to take her directly to the emergency room at Community East.
4:30 pm, Sun, Oct 25
We arrived at the ER and they immediately took her back to a room. They were very concerned about her inability to speak clearly. Many doctors and nurses checked her out, and the best way I can describe her behavior at this time is this: if you can imagine taking way too much nyquill, the almost drunken body movement and slurred speech. But this wasn't the most concerning thing. The doctors noticed that her eyes were making jerking movements--nystagmus. Now usually when they see this, the eyes jerk from side to side (if you can imagine how eyes keep trying to correct when the room is spinning). However, her eyes were jerking in an up-and-down motion. They decided that we needed to get a CAT scan of her head to make sure there was nothing big going on in there.
The CAT scan came back negative, much to our relief, except for the indication of a large sinus infection. The decision was made to send her to Community North pediatric unit to monitor her overnight. She was given antibiotics and fluids via IV. We were then put in another room in the ER to wait for the ambulance to transfer Jordyn up north. She is poked and prodded some more, and is very, very tired.
12am, Mon, Oct 26
The ambulance arrived and Jordyn and I rode up to Community North. When we get there, she is taken directly to a room in the Pediatric unit. Nurses and doctors poke and prod her all night, and she finally gets some rest.
In the morning we are visited by several other doctors, who are now even more concerned about her speech and eye movement. A neurologist is called in and examines her. They tell us that it is true that an ear or sinus infection could cause her to be unable to walk or sit up right, and even cause her to slur her speech. However, it would not cause the eye movement. They decide it is time for an MRI and Spinal Tap. They are concerned that there is something in her head blocking the signals to her body. At this point they give us the news that she will need to be sedated to undergo the Spinal Tap. This concerned us given her lethargic state, but it was necessary for them to get all the information they needed. Originally they were going to wait and get it all done at once, but they neurologist was very concerned and decided to rush things along.
2pm, Mon, Oct 26
Jordyn is taken down for the MRI, while Jon and I wait and make phone calls. When she is done they take her back to her room, just in time to be taken up for the anesthesia and tap. We go along with her while they sedate her, and then are taken out to the waiting room. We won't see her again until the proceedure is done and she is out of recovery. By this time Grandma Kay has shown up and we go get some food in the cafeteria. Just as we are sitting down, we find out that she is done and we all head back.
6pm, Mon, Oct 26
After waiting a while for everyone to look over the results, the neurologist comes to the room and asks us to come with her. She wants to show us the films. At this point I am just floating along, almost too scared to feel anything. We sit down and she says, "let me show you what we are concerned about". She then shows us all the views of the brain, the layers, and finally the mass that they have found on the pons Varolii, in the brain stem. Now at this point they aren't sure what the mass is, but they are trying everything to find out. What the doctor thinks it may be is post-infectious encephalitis: Secondary, or post-infectious encephalitis occurs when a virus first infects another organ and secondarily enters the brain. Bascially, as we understand it, the antibodies that were created to treat whatever illness she had, also began attacking her brain. This caused the swelling and mass that we see. It is decided that she is to be sent to Riley Children's Hospital asap to be looked over by the neurology dept. The results of the Spinal Tap come back. Her white blood cell count is way up, indication and infection and pointing toward the encephalitis.
8pm, Mon, Oct 27
An ambulance is called and we are now on our way to the ER at Riley. There they will examine her all over again, we will answer the same questions for the hundredth time, and finally a neurologist will come look at her and decide which unit to put her in.
3am, Tues, Oct 28
We are finally admitted to the Riley Heart Center, where all heart and neurology patients go.
3:45am, Tues, Oct 28
A pediatric neurosurgeon visits the room. He has review the films and has news for us. He tells us that the tumor is in the brain stem, and as we know, it is too dangerous to stick a needle in there for a biopsy. There is too much important stuff concentrated there. It is also impossible to operate on. I have now been given the worst information of my life. He wants us to know that there are other routes we can take, but surgery is not an option.
11am, Tues, Oct 28
The head neorologist on the clock come in to give us some very good news. She does not believe the mass is a tumor, and that it is actually the encephalitis. The swelling is also in other parts of her brain, so they are going to increase the strength of the steroids and get that process started. She wants Jordyn to be on the high dose of steroids for 5 days. At the end of the 5 day period, it is hoped that she will either have made a good enough recovery to come home, or she will have to go to in-patiend rehabilitation at Methodist Hospital. She also wants us to be aware that there is a 70% chance of full recovery. There is a small percentage of kids that don't ever fully recover and will need special care for the rest of their lives. However, Jordyn is strong and we are hopefull. And grateful--it is no longer life-threatening! Now we just have to wait on the team of doctors from several different areas who have been looking over all of this information to come to a final conclusion and plan of action.
3pm, Tues, Oct 28
The team of doctors come to Jordyn's room and tell us that what we were told at 11 is accurate. They do not believe this is a tumor--it just does not look like a tumor to them. The plan is still to use the steroids for 5 days and then most likely off to rehab. A physical therapist, speech therapist, and occupational therapist will be visiting her every day while she is here.
5pm, Tues, Oct 28
A speech therapist is called in to evaluate Jordyn's ability to swallow. Jordyn does very well and is now able to eat again for the first time in over 24 hours.
All this time Jordyn has been very sleepy and very brave. She has put up with all sorts of prodding and poking, being woken up often, needles in her arms, and being hooked up to all sorts of cords. She is taking it all very well, and we are very proud of her. We can't wait to get her back home!
I will update daily, or as often as I get more information.
I wanted to find a way to keep everyone posted on how Jordyn is doing and what is going on with her recovery. I know the kids in her class were requesting a blog, so they could get daily updates in school. Luckily, they have computers available to us in the Parents Waiting Room here at Riley. I will try to update this daily, and whenever we get more news. Thanks for all of the well-wishes and prayers. We appreciate it all.
Jordyn had been sick on and off for a few weeks, as were a lot of the kids in her school. We weren't very concerned and just kept her home when she seemed feverish or too tired. When Fall Break rolled around, Jordyn went with her dad and sister, Olivia, to visit family. That's when Jon noticed that she wasn't quite herself. She seemed extremely tired and out of it. She fell asleep on the way home that night and went straight to bed. She seemed sleepy the next day, but not sick. We stayed home and she was on the couch most of the evening. Her doctor was called and, because the common theme throughout this whole two weeks of on-and-off illness was a headache, the doctor called in a prescription for allergy meds and antibiotics. By the end of the day Saturday, Jordyn had her first dose of the medicine and went to bed very early.
SUNDAY, Oct. 25
Sunday morning was when we first noticed something was very wrong. Jordyn got up some time in the morning to use the bathroom and said something about the floor board being "wobbly". We just assumed that she was tired, and maybe had low blood sugar due to not having a great appetite for a good while. However, when we decided she needed to get up and eat something around 9:30 or 10, she said it again. This time we really noticed that she was extremely off-balance and "wobbly". We carried her downstairs and put her on the couch. Still assuming low blood sugar and maybe an ear or sinus infection, we had her walk to the dining table and eat a bowl of cereal. At this point we noticed that she had a hard time getting the spoon to her mouth and she was also having a lot of trouble speaking. We decided to wait a while and see if the food helped. However, by late afternoon, it became very clear that she wasn't getting better and we decided to take her directly to the emergency room at Community East.
4:30 pm, Sun, Oct 25
We arrived at the ER and they immediately took her back to a room. They were very concerned about her inability to speak clearly. Many doctors and nurses checked her out, and the best way I can describe her behavior at this time is this: if you can imagine taking way too much nyquill, the almost drunken body movement and slurred speech. But this wasn't the most concerning thing. The doctors noticed that her eyes were making jerking movements--nystagmus. Now usually when they see this, the eyes jerk from side to side (if you can imagine how eyes keep trying to correct when the room is spinning). However, her eyes were jerking in an up-and-down motion. They decided that we needed to get a CAT scan of her head to make sure there was nothing big going on in there.
The CAT scan came back negative, much to our relief, except for the indication of a large sinus infection. The decision was made to send her to Community North pediatric unit to monitor her overnight. She was given antibiotics and fluids via IV. We were then put in another room in the ER to wait for the ambulance to transfer Jordyn up north. She is poked and prodded some more, and is very, very tired.
12am, Mon, Oct 26
The ambulance arrived and Jordyn and I rode up to Community North. When we get there, she is taken directly to a room in the Pediatric unit. Nurses and doctors poke and prod her all night, and she finally gets some rest.
In the morning we are visited by several other doctors, who are now even more concerned about her speech and eye movement. A neurologist is called in and examines her. They tell us that it is true that an ear or sinus infection could cause her to be unable to walk or sit up right, and even cause her to slur her speech. However, it would not cause the eye movement. They decide it is time for an MRI and Spinal Tap. They are concerned that there is something in her head blocking the signals to her body. At this point they give us the news that she will need to be sedated to undergo the Spinal Tap. This concerned us given her lethargic state, but it was necessary for them to get all the information they needed. Originally they were going to wait and get it all done at once, but they neurologist was very concerned and decided to rush things along.
2pm, Mon, Oct 26
Jordyn is taken down for the MRI, while Jon and I wait and make phone calls. When she is done they take her back to her room, just in time to be taken up for the anesthesia and tap. We go along with her while they sedate her, and then are taken out to the waiting room. We won't see her again until the proceedure is done and she is out of recovery. By this time Grandma Kay has shown up and we go get some food in the cafeteria. Just as we are sitting down, we find out that she is done and we all head back.
6pm, Mon, Oct 26
After waiting a while for everyone to look over the results, the neurologist comes to the room and asks us to come with her. She wants to show us the films. At this point I am just floating along, almost too scared to feel anything. We sit down and she says, "let me show you what we are concerned about". She then shows us all the views of the brain, the layers, and finally the mass that they have found on the pons Varolii, in the brain stem. Now at this point they aren't sure what the mass is, but they are trying everything to find out. What the doctor thinks it may be is post-infectious encephalitis: Secondary, or post-infectious encephalitis occurs when a virus first infects another organ and secondarily enters the brain. Bascially, as we understand it, the antibodies that were created to treat whatever illness she had, also began attacking her brain. This caused the swelling and mass that we see. It is decided that she is to be sent to Riley Children's Hospital asap to be looked over by the neurology dept. The results of the Spinal Tap come back. Her white blood cell count is way up, indication and infection and pointing toward the encephalitis.
8pm, Mon, Oct 27
An ambulance is called and we are now on our way to the ER at Riley. There they will examine her all over again, we will answer the same questions for the hundredth time, and finally a neurologist will come look at her and decide which unit to put her in.
3am, Tues, Oct 28
We are finally admitted to the Riley Heart Center, where all heart and neurology patients go.
3:45am, Tues, Oct 28
A pediatric neurosurgeon visits the room. He has review the films and has news for us. He tells us that the tumor is in the brain stem, and as we know, it is too dangerous to stick a needle in there for a biopsy. There is too much important stuff concentrated there. It is also impossible to operate on. I have now been given the worst information of my life. He wants us to know that there are other routes we can take, but surgery is not an option.
11am, Tues, Oct 28
The head neorologist on the clock come in to give us some very good news. She does not believe the mass is a tumor, and that it is actually the encephalitis. The swelling is also in other parts of her brain, so they are going to increase the strength of the steroids and get that process started. She wants Jordyn to be on the high dose of steroids for 5 days. At the end of the 5 day period, it is hoped that she will either have made a good enough recovery to come home, or she will have to go to in-patiend rehabilitation at Methodist Hospital. She also wants us to be aware that there is a 70% chance of full recovery. There is a small percentage of kids that don't ever fully recover and will need special care for the rest of their lives. However, Jordyn is strong and we are hopefull. And grateful--it is no longer life-threatening! Now we just have to wait on the team of doctors from several different areas who have been looking over all of this information to come to a final conclusion and plan of action.
3pm, Tues, Oct 28
The team of doctors come to Jordyn's room and tell us that what we were told at 11 is accurate. They do not believe this is a tumor--it just does not look like a tumor to them. The plan is still to use the steroids for 5 days and then most likely off to rehab. A physical therapist, speech therapist, and occupational therapist will be visiting her every day while she is here.
5pm, Tues, Oct 28
A speech therapist is called in to evaluate Jordyn's ability to swallow. Jordyn does very well and is now able to eat again for the first time in over 24 hours.
All this time Jordyn has been very sleepy and very brave. She has put up with all sorts of prodding and poking, being woken up often, needles in her arms, and being hooked up to all sorts of cords. She is taking it all very well, and we are very proud of her. We can't wait to get her back home!
I will update daily, or as often as I get more information.
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