Tuesday, February 12, 2013
January 26-29
January 26- Nick sent me to Ronald McDonald house last night for my first full night of sleep since the weekend before. Shayleigh has her last weekend therapy at Baylor. I spend most the day gathering up things for Nick to bring back home so we won't have as much stuff to haul Thursday. Shayleigh is now getting meal tray. Unfortunately, they mostly go uneaten. I can't imagine why since pureed hospital food is so yummy and appetizing. HAHA. We have had a hard time getting good vital signs on Shayleigh. Wehave finally found a way to get Shayleigh's blood pressure without a meltdown. We either carry her down the hallway or stroll her down the hallway and keep the blood pressure monitor out of sight. At this point, we will do whatever it takes to appease the doctors our last few days.
January 27 - Today is our 6 hour pass away from the hospital! We start it off getting everything ready - meds, extra clothes, feeding pump, feedings. The doctor comes by before we leave and we make a few adjustments to her medication and we quit the 4 hour feeds with 2 hour breaks. So we dont have to worry about feedings on our outing- YAY!! We finally leave the hospital around 10:30 headed to the Dallas World Aquarium. We are only there for about 1 1/2 hours. Shayleigh is super tired for whatever reason so she dozes a lot of the visit. She does seem to enjoy watching the otters and sharks and stingrays get fed. We end up right in front of the otter enclosure for feedings. The otters put on a show jumping around and trying to scale the glass wall. We are in a cool tunnel for the shark and stingray feeding. We check out the museum gift shop before leaving and to give us time to pick out a lunch place. We go to he Spaghetti Warehouse. The food is ok. Shayleigh gets her meds as soon as we get to the resturant. She acts like she wants to eat, but cries when we offer food. She ends up falling asleep on Paw-Paws shoulder. When she wakes up she ends up scaring us to death by trying to choke and poop at the same time. Needless to say, we have to do an outfit change before we leave the restaurant. Daddy, Grammie and Paw-Paw want to stop and check out some cow thing and graveyard before going back to Baylor. Daddy and Paw-Paw head out soon after we get back to Baylor. Daddy does read Shayleigh's new favorite book- The wide mouth frog. It was a good day had by all!!
January 28 - After talking with the physical medicine doctors and team we have decided to postpone Ritalin at this time. If they think we need to readdress the issue or add it back into our plan of care we will re-evaluate as needed. Shayleigh is walking better. She also kept mommy up last night until 8:45 thrashing around in the bed which is hilarious for her, but so incredibly stressful for me as I try to make sure she isn't going to hurt herself. At first it really freaked me out, but she smiles the entire time she does it and is so proud of herself. I was worried about how well she was going to do for therapy after having such an active night. She did well though. A lot better than I was expecting. So, I was pleased. The tape on her NG tube is coming off and the tape is the only thing holding her NG tube in. So, the hospital is making me replace the NG tube so I can be "checked off" to go home. Even though, I WILL NOT be the one putting it in if it falls out at home. I have a friend who said she would help and I am also going to have home health. I really don't think it should be my responsibility to put it back in especially since she will probably only need the tube for a short period of time, but they said I have to do it before we leave. I spend most of the day crying and freaking out. I have done quite a few NG tubes on adults, but NEVER on a child and NEVER on my own!! Anyway, we wait until after lunch and I am able to keep it together during the whole procedure! I measure for the tube and put it in while the nurse and my Mom hold Shayleigh down. Then as soon as I get it in I hold it there and the nurse tapes it down. Shayleigh did REALLY well and it wasn't as bad as I thought it would be, but I REFUSE to do it again!! As soon as it was all said and done Shayleigh stopped crying and Mommy started crying. The rest of the day we spent enjoying my silly girl!
January 29 - Shayleigh pulled out her NG tube this morning! I tried to tell them that I would like to keep it out and see how she would do. I told them that I didn't really think she needed it, but they were not at all open to that idea. I also told them that they told us at LSU when the kids pulled the tubes themselves that meant they were ready to keep it out. However, Baylor told me it had to go back in. So I told them I WAS NOT putting it back in. The nurses laughed and said, "Oh no, you already did it once you don't have to do it again." I said "good, cause once is more than enough for me." The nurses put her tube back in. Poor baby. It had to be super traumatic for her. The rest of the day went smooth. Shayleigh was restless and wanted to get down and play so we set up the red mat that PT sent to her room with us and set up her lentils for her to play in. NEVER have I seen a child get so excited and act so silly over lentils. She had soooo much fun throwing them everywhere and hitting mommy in the face with them and the toys that were hidden in them. She also took about 30+ steps down the hallway. She was just ready to go!! Shayleigh didn't want to eat much on her tray, but she did eat a few of the things we bought for her. We had a fun day today and she was amazing!!
Tuesday, February 5, 2013
Rehab January 24-25
January 24 Today has been a terrible day. We changed our feedings, increased our Miralax and added Ritalin. We started Ritalin to see if it will help increase her motivation and make her less distracted. Unfortunately, Shayleigh has been fussy and apparently mommy woke up on the wrong side of the bed too! Thank goodness my mom was here to help me! Shayleigh cried most of the day and wouldn't perform for ANY of her therapies. She refused to eat and pitched an absolute fit! She cried for pt and ot as well. She was absolutely miserable. We are going to discontinue to Ritalin right now and try it again Monday. She let me brush her teeth and her tongue tonight! Score! I have been so worried about her teeth. We have always brushed our teeth twice a day and not getting to brush them at all is killing me!! We have chosen a rehab facility at home. We are hoping that she will really continue to progress once we get home. I am still worried about going home, but I am ready to go. Crazy pregnancy hormones.
January 25 I am headed home to Shreveport for my 28 week OB appointment. I really kind of wanted to reschedule,but I have been having a sore throat, runny nose, and congestion and I want to talk to my OB and make sure it is just allergies or a cold like I think it is. Plus, I have never gone this long without checking on my baby. Perks of working in an ER is having a doppler. The drive home was nice. I was able to spend the three hours just thinking. Yesterday was such a terrible day I needed some time by myself. I was able to run by the house and take a nice little bath. I don't like to take baths in places that aren't my house, my parents house or my inlaws house. Nick was able to come home early and come to my appointment with me. Baby brother sounded good and is measuring ahead. I lost my pictures & videos on my phone so I was able to go to Verizon and they FOUND THEM!! Once I can figure out how to download them I am going to try to download my favorite video. Nick and I were able to eat and then we headed back to Baylor. Nick stayed the night at the hospital with Shayleigh and sent me to Ronald McDonald House to get some rest.
Meanwhile, my parents stayed with Shayleigh. She had a much better day today than she did Thursday. Some of the nurses mentioned water therapy as a possibility a few nights ago and mentioned it to PT so we are going to try water therapy today. Shayleigh has ALWAYS loved water so we thought the water would really help motivate her. I really hated to miss it, but apparently I didn't miss a whole lot. She clung to PT and seemed kind of scared of the water. We think it might because she has never been in the water where her arms and legs weren't doing exactly what she wanted them to. We plan to try water therapy again ourselves once we get home. My parents said overall, she had a really good day! I was so glad to get back to the hospital and get my kisses in!
January 25 I am headed home to Shreveport for my 28 week OB appointment. I really kind of wanted to reschedule,but I have been having a sore throat, runny nose, and congestion and I want to talk to my OB and make sure it is just allergies or a cold like I think it is. Plus, I have never gone this long without checking on my baby. Perks of working in an ER is having a doppler. The drive home was nice. I was able to spend the three hours just thinking. Yesterday was such a terrible day I needed some time by myself. I was able to run by the house and take a nice little bath. I don't like to take baths in places that aren't my house, my parents house or my inlaws house. Nick was able to come home early and come to my appointment with me. Baby brother sounded good and is measuring ahead. I lost my pictures & videos on my phone so I was able to go to Verizon and they FOUND THEM!! Once I can figure out how to download them I am going to try to download my favorite video. Nick and I were able to eat and then we headed back to Baylor. Nick stayed the night at the hospital with Shayleigh and sent me to Ronald McDonald House to get some rest.
Meanwhile, my parents stayed with Shayleigh. She had a much better day today than she did Thursday. Some of the nurses mentioned water therapy as a possibility a few nights ago and mentioned it to PT so we are going to try water therapy today. Shayleigh has ALWAYS loved water so we thought the water would really help motivate her. I really hated to miss it, but apparently I didn't miss a whole lot. She clung to PT and seemed kind of scared of the water. We think it might because she has never been in the water where her arms and legs weren't doing exactly what she wanted them to. We plan to try water therapy again ourselves once we get home. My parents said overall, she had a really good day! I was so glad to get back to the hospital and get my kisses in!
Wednesday, January 23, 2013
Rehab 4
January 21- Director of therapy comes by and is really nice and apologizes profusely for the mix up. She also addresses the speech thearpy issue. Apparently the speech therapist is telling her she is happy with her progress. I still don't understand how she told me on Saturday that she wasn't working with her because she wasn't making any progress, but whatever. She also suggests that the therapists try doing therapy with just Shayleigh. As I told her, I told them from day one if they thought I was hindering progress then I was more than happy to just observe from the window. That would not upset me at all. I am not here for me. I am here for my little girl and I want her to have the best chance she can at getting better!! Apparently, this is not most of the parents attitude/take on this issue. She said that she would talk to speech and get her take on how her and Shayleigh are getting along. She asked me to give the speech therapist a few extra days and then if we wanted to switch therapists we were more than welcome to. I was happy that she came to talk. And I was so glad Nick was here too! We go to OT who is first on the schedule and he starts off saying "I heard about this weekend. I am so sorry. She is making ridiculous progress." He also says he wants to try just him and Shayleigh. I am ok with that. She always does really well with OT. He is her favorite. He is really good with her and he will stop and give her love. lol. Last thing she does before coming back up to the room is kneel for about 30 seconds with no assistance at all. He has tried to do this the past couple of days, but she hasn't been to receptive. As soon as we see PT he apologizes profusely and you can tell he feels bad. He encourages me and tells me she is making good progress. I address the idea of water therapy and he says he will plan on trying that on Friday and that we will know for sure if we will do it by Wednesday. I am ok with that. One of the nurses had mentioned it a few nights before and I thought it might be a good idea. Towards the end of PT he puts her on the treadmill with her playdoh of course and she takes 9 steps by herself!! I am so excited! Shayleigh also does well with speech! She won't let her put the brush in her mouth, but she does respond and touch the ipad screen. All in all, today is a good day. Unfortunately daddy has to go back home, but he had an extra day with us so we are one day closer to his coming back!! Tomorrow is our second and last care meeting if we really do go home on the 31. I am going to try to get some answers about why we would go home if she is making progress. I really don't want her going home with a feeding tube! With her only getting therapy 2-3 times a week I'm afraid progression will really slow down!! We are also changing her feeding tube from ND to NG in preparation for discharge home. Tomorrow is going to be a long and busy day. And I have a feeling a very emotional day.
January 22- Shayleigh wakes up very fussy. She isn't real receptive to any therapy. PT didn't even try to put her on the treadmill because she was so fussy. Speech therapy tries to give her a sucker, but she throws it on the floor. She falls asleep for the 30 minutes between speech and OT so she won't even work for OT. She only wants to snuggle and be held. (I'm pretty sure OT didn't mind that at all- lol) We have our 2nd care meeting. The team continues to believe she will be ready to be discharged on January 31. I tell them I am worried about her going down to therapy 3 days a week. I tell them I am more than ready to go home and that I would be more than happy to go home if she could get therapy 5 times a day. They tell me they will try. They believe that she is making progress, but that her progress will be even better if she goes home to her normal environment. Plus, they feel like I have such great family support I will be ok. And also since she does so well with us ..that she will continue to improve. I don't realy know what to think at this point. At our first meeting I was told if she was making progress the discharge date would change. Now, they tell me she is making progress, but the discharge date remains the same. I am confused. And again, I don't want to stay up here, but I also don't want to go home with her like this. If they aren't pushing her here and we haven't made major progress I have a hard time believing that we will make more progress at home with therapy only 3 times a week. As opposed to 6 times a week here. I am still not crazy about going home with her NG tube. Not that I can't handle it or that I don't know what to do with it,but because they expect me to put it back in if it falls in. Personally, I don't believe that is a job I should do. If it were a long term situation, then yes definitely, but she won't need this tube forever. I am stressed, upset and frustrated. I kinda feel like our time here has been wasted if they are planning to send us home and she isn't eating, talking or walking. Nick and I thought for sure she would be doing at least one of those things...maybe we were expecting too much?!?! It is a tough day for Nick and I. Shayleigh enjoys having her Nonnie and her cousin Gracelyn come visit. As always we do some therapy in the room, we try the stander and she tolerates it well. After having 2 nights of restless sleep I decide to go ahead and give her 2.5 mg of Ambien to help her rest. I have tried not to use the Ambien because she wakes up groggy the next morning, but at this point I thought it might help her rest and let us have a better day.
January 23- Shayleigh wakes up at 0720. She whimpers and I jump in bed with her thinking it is the repeat of the last 2 nights where I have had to snuggle with her in order for her to rest. Oh, the terrible trials of mommy...snuggling with her baby. ;) She is wide awake and not acting like she is groggy or wants to go back to bed at all. I say "Good morning, beautiful. You slept really good! I love you!" and she gives me the sweetest smile. And continues to just smile. It was amazing! I get up and start getting her ready and she starts fussing a little and I think oh no. She starts the morning off with 2 sessions of pt at 0900 and 1030. Her first time to have any therapy more than once a day. Pt is very pleased with her. He is surprised at how strong she is (coulda told him that..you should see how stiff she gets for suppositories and enemas lol) and how she can do so much more than they thought (been trying to tell them this and trying to get them to push her a little more). She does everything he asks, but she cries the whole time and isn't real happy about it, which concerns pt and makes him worry about pushing her too hard. I tell him at this point she needs to be pushed! She can do it! Some of the wonderful side effects of cerebellar mutsim are apathy, lack of motivation, irritability and constipation. And of course, my sweet girl has all of those. Plus she IS red headed and stubborn (she gets that from Nick's side of course-lol). Pt comes up to talk to me at the same time that speech comes by to show mommy something. SHE ATE 3 OUNCES OF ICE CREAM!!!! Speech said she was grabbing at the spoon and using her hands and licking them and then whining because apparently she wasn't moving fast enough feeding her!! We were SOOOOOO excited!! During this time, Pt tells me we are going to try water therapy on Friday (which I had suggested Monday as a possibility) and that he wants me to watch and make sure he isn't pushing her too hard. I don't really know how I am supposed to know that. I just want her pushed. lol. She can do it!! Before leaving this afternoon the physical medicine dr came by to talk to us. She is the one who has seen cerebellar mutism. She is also super nice and she likes to play with Shayleigh. lol. She suggested that we might try a medicine to help her with her lack of motivation and to help her focus. She suggested Ritalin. I grew up on Ritalin. It is a good medicine if used as needed. She said that the life is only 5 hours and it works immediately and that she wants to try it for a day or 2 to see if it helps. At this point I am open to any ideas. I don't want her on it long term, but for a little while as needed I am ok with it. So, I am curious to see how tomorrow goes. She has pt,ot and speech back to back. I am a little nervous about them being all bunched up together because she does still tire out so easily, but we will see. All in all, today was so encouraging. I am beginning to see bits and pieces of my little girl coming back. She is happier, silly and all around more content. Which is what she was before December 21. I am still a little scared that this is too good to be true, BUT I also know that I have SO MANY prayer warriors praying that I can't help but know that everything will work out for the best. Plus, God has had his hand in so many areas of this whole situation. From finding the tumor, to providing a great neurosurgeon, to providing a rehab facility quickly, to allowing the pt student to be here Saturday, to providing AMAZING prayer warriors, and love and support groups. I don't know know that words will EVER really be enough to tell ya'll how much each and everyone of you mean to us! We have been overwhelmed with love, prayers, emotional & financial support from family,friends, friends of friends, and strangers! It is amazing!!
January 22- Shayleigh wakes up very fussy. She isn't real receptive to any therapy. PT didn't even try to put her on the treadmill because she was so fussy. Speech therapy tries to give her a sucker, but she throws it on the floor. She falls asleep for the 30 minutes between speech and OT so she won't even work for OT. She only wants to snuggle and be held. (I'm pretty sure OT didn't mind that at all- lol) We have our 2nd care meeting. The team continues to believe she will be ready to be discharged on January 31. I tell them I am worried about her going down to therapy 3 days a week. I tell them I am more than ready to go home and that I would be more than happy to go home if she could get therapy 5 times a day. They tell me they will try. They believe that she is making progress, but that her progress will be even better if she goes home to her normal environment. Plus, they feel like I have such great family support I will be ok. And also since she does so well with us ..that she will continue to improve. I don't realy know what to think at this point. At our first meeting I was told if she was making progress the discharge date would change. Now, they tell me she is making progress, but the discharge date remains the same. I am confused. And again, I don't want to stay up here, but I also don't want to go home with her like this. If they aren't pushing her here and we haven't made major progress I have a hard time believing that we will make more progress at home with therapy only 3 times a week. As opposed to 6 times a week here. I am still not crazy about going home with her NG tube. Not that I can't handle it or that I don't know what to do with it,but because they expect me to put it back in if it falls in. Personally, I don't believe that is a job I should do. If it were a long term situation, then yes definitely, but she won't need this tube forever. I am stressed, upset and frustrated. I kinda feel like our time here has been wasted if they are planning to send us home and she isn't eating, talking or walking. Nick and I thought for sure she would be doing at least one of those things...maybe we were expecting too much?!?! It is a tough day for Nick and I. Shayleigh enjoys having her Nonnie and her cousin Gracelyn come visit. As always we do some therapy in the room, we try the stander and she tolerates it well. After having 2 nights of restless sleep I decide to go ahead and give her 2.5 mg of Ambien to help her rest. I have tried not to use the Ambien because she wakes up groggy the next morning, but at this point I thought it might help her rest and let us have a better day.
January 23- Shayleigh wakes up at 0720. She whimpers and I jump in bed with her thinking it is the repeat of the last 2 nights where I have had to snuggle with her in order for her to rest. Oh, the terrible trials of mommy...snuggling with her baby. ;) She is wide awake and not acting like she is groggy or wants to go back to bed at all. I say "Good morning, beautiful. You slept really good! I love you!" and she gives me the sweetest smile. And continues to just smile. It was amazing! I get up and start getting her ready and she starts fussing a little and I think oh no. She starts the morning off with 2 sessions of pt at 0900 and 1030. Her first time to have any therapy more than once a day. Pt is very pleased with her. He is surprised at how strong she is (coulda told him that..you should see how stiff she gets for suppositories and enemas lol) and how she can do so much more than they thought (been trying to tell them this and trying to get them to push her a little more). She does everything he asks, but she cries the whole time and isn't real happy about it, which concerns pt and makes him worry about pushing her too hard. I tell him at this point she needs to be pushed! She can do it! Some of the wonderful side effects of cerebellar mutsim are apathy, lack of motivation, irritability and constipation. And of course, my sweet girl has all of those. Plus she IS red headed and stubborn (she gets that from Nick's side of course-lol). Pt comes up to talk to me at the same time that speech comes by to show mommy something. SHE ATE 3 OUNCES OF ICE CREAM!!!! Speech said she was grabbing at the spoon and using her hands and licking them and then whining because apparently she wasn't moving fast enough feeding her!! We were SOOOOOO excited!! During this time, Pt tells me we are going to try water therapy on Friday (which I had suggested Monday as a possibility) and that he wants me to watch and make sure he isn't pushing her too hard. I don't really know how I am supposed to know that. I just want her pushed. lol. She can do it!! Before leaving this afternoon the physical medicine dr came by to talk to us. She is the one who has seen cerebellar mutism. She is also super nice and she likes to play with Shayleigh. lol. She suggested that we might try a medicine to help her with her lack of motivation and to help her focus. She suggested Ritalin. I grew up on Ritalin. It is a good medicine if used as needed. She said that the life is only 5 hours and it works immediately and that she wants to try it for a day or 2 to see if it helps. At this point I am open to any ideas. I don't want her on it long term, but for a little while as needed I am ok with it. So, I am curious to see how tomorrow goes. She has pt,ot and speech back to back. I am a little nervous about them being all bunched up together because she does still tire out so easily, but we will see. All in all, today was so encouraging. I am beginning to see bits and pieces of my little girl coming back. She is happier, silly and all around more content. Which is what she was before December 21. I am still a little scared that this is too good to be true, BUT I also know that I have SO MANY prayer warriors praying that I can't help but know that everything will work out for the best. Plus, God has had his hand in so many areas of this whole situation. From finding the tumor, to providing a great neurosurgeon, to providing a rehab facility quickly, to allowing the pt student to be here Saturday, to providing AMAZING prayer warriors, and love and support groups. I don't know know that words will EVER really be enough to tell ya'll how much each and everyone of you mean to us! We have been overwhelmed with love, prayers, emotional & financial support from family,friends, friends of friends, and strangers! It is amazing!!
Rehab 3
January 14- Shayleigh sleeps well through the night! She has been on Ambien for the past 3 nights to see if that would help her rest better. Her sleep has been very restless since surgery. First day she did not cry through PT!! She did amazing with Mr Dan and Mrs. Kelsea! I was sooooo excited and I think Mr Dan was glad that she didn't cry all over him like she normally does! I think we have reached a huge turning point in making some progress with pt! YAY! I think this progress with PT is due to the fact that her head is properly accessorized and that everything is evened out. lol. We increased bromocriptine to twice a day. We are ready and excited to see what this new adjustment will mean for our little angel! Shayleigh cries a little with OT because he takes her playdoh and makes her do a little extra work. She moves her tongue for speech therapy.
January 15- I have officially been kicked out of the bed and my pillow has been swiped by a red headed monster! Shayleigh is super sleepy today. She doesn't want to do much of anything and it is slightly depressing for mommy. According to the physical medicine drs who use bromocriptine and have seen cerebellar mutism before bromocriptine is supposed to make the children wake up and become more active. Not really what I wanted to hear, but they don't seem to be too concerned with her sleepiness. They attribute it to catching up on rest since she hasn't had very restful sleep since surgery. Of course, I am still worried, but what else do Mom's do best besides worry?!?!
January 16- Shayleigh remains sleepy and is slightly irritable when she is awake. Again, I voiced my concerns to the physical medicine doctors, but they don't seem concerned. They think her sleep/wake cycle is off and that she is catching up from many nights of restless sleep. Shayleigh seems content in therapy, but doesn't really do anything new or exciting. Although content is much better than what we were dealing with!
January 17- After spending 2 days in a super funky mood, today I have finally decided not to be upset with all this sleeping and not to be discouraged. It is so hard to be here 24-7 and watch my baby struggle everyday. Especially for me. I am not a positive person. I am greatful for my Mom who is able to see the little progress she does do. If I were here all by myself it would not be good at all. We try a different stander today and Shayleigh does amazing tolerating it! She probably stands for a good 10 minutes and plays with her playdoh on the tray that comes in the front of her stander. PT asks me if I want to take it back to the room and work with her with it! Of course I said yes!! Shayeligh does well with OT. OT is really good at challenging her to do different things. I find out today from the speech therapist that speech is normally the last thing to come back after brain issues. Slightly discouraging news, but praying/hoping/believing it WILL come back!!
January 18- Shayleigh woke up fussy this morning. I am afraid she might be coming down with a cold, although how she got that I have NO idea. I always worry when she wakes up fussy that she will spend the entire day fussy and not do well with therapy. However, this was not the case for therapy today. PT decided to try to see if Shayleigh would be able to walk on treadmill. He didn't put her in a harness, but instead kinda held her up. She was able to take a few steps by herself with both of her feet! I was SOOOOO excited! They were even able to move up how fast the treadmill was going!! took a few steps by herself with both feet. By the afternoon Shayleigh is not fussy and acts like she feels absolutely fine. The pedi sends neuropsych by for a visit and for me to ask more questions. Although, I am asking the same ones to physical medicine and they are able to answer them all. Neuropsych doesn't normally see kids until they are 3 and up and really I have no idea why the pedi sent her by, but we asked her the same questions we asked Physical Medicine. Neuropsych tells us that they normally see the quickest and most progression in the first 3 months after surgery with progression slacking off and ultimately winding down 2 years after surgery. I speak to her about my concern with Shayleighs regression in speech. She isn't making noises like she was and she won't let me brush her teeth again. She says that we will give it a few days and see how things progress. She says she will stop by next week and we can talk and go from there. Daddy comes back into town for the weekend and sends mommy to Ronald McDonald house for her full nights rest.
January 19- Shayleigh has therapy at 0900 this morning so I make sure that we are back to the hospital by 0830 to help Daddy get her ready. We arrive and she is already dressed and ready. (good job daddy!!) We get in our wheelchair and wait for our first therapy which is OT. Our normal therapists are off on weekends so we normally have prn people or other therapists who work with her. Unfortunately 0900 comes and goes. They are normally about 5-10 minutes later than the time they give me anyway, so I don't think anything about it. We just stroll Shayleigh down the hallway to keep her busy while we wait. 0915 rolls around. They are never this late. I ask the nurse what the deal is. She calls and says "they don't have her on the schedule for today. They say she isn't making any progress so they are going to give her a day off." First of all, what?!?!?!? If she isn't making any progress we should be pushing her harder NOT giving her days off! Plus, she walked on the treadmill the day before!! And pt & ot have both told me she is making good progress. I am beside myself. I start crying. Speech comes by and it is our normal therapist who told me the day before "I will see yall tomorrow." And when I said "I thought you didn't work weekends." She says "I am tomorrow for Shayleigh." Anyway, I ask her and she says she isn't making any progress in speech and apparently not at all so she needs a day off. I am so upset. Of course, about this time we receive our first visitors from home. I decide to run down to the gym to get Shayleighs stander that we had accidentally left down there the day before. I am so upset when I get down there, but of course just by "chance" (God, again?!) the student that has been working with her for PT is there making up a few sick days from the week before. I stalk her and wait by the window. When she comes around I ask her about the no progress business. She is just as flabergasted as I am and says she is making progress and we are very pleased. She then tells me that she thinks scheduling was messed up. Really all I cared about hearing was that she was making progress. Even though, they have been telling me she has, when they all the sudden "take it back" I just needed a little encouragement again. The nurse sends a message to the director of therapy who apologizes profusely and says she is sorry for the mix up. I am still upset that someone, somewhere mentioned that she is making no progress. I am also upset that speech decided she needed a day off. She is here for the sole purpose of rehab and I don't think that she should take any extra days off! Not making progress is a reason NOT to take a day off! I am anxious to talk to her regular PT & OT and I am also hoping the director of therapy makes an appearance and has an explanation. We do our own version of PT & OT minus the treadmill.
January 20- Shayleigh enjoys playing with her cousin Victoria. They play with rocks and playdoh. We do our own PT & OT with her. Plus, with all the excitement from visitors we figure she is probably worn out! Nick finds out before he is about to leave to go home that his boss is giving him Monday off. Shayleigh and I are excited that Daddy will be here an extra day! And I am especially excited since I am anxious about how Monday will turn out. We also talk to the dr and the nurse supervisor about a new speech therapist. We are worried that she is giving up on our girl and we can't have that!!
January 15- I have officially been kicked out of the bed and my pillow has been swiped by a red headed monster! Shayleigh is super sleepy today. She doesn't want to do much of anything and it is slightly depressing for mommy. According to the physical medicine drs who use bromocriptine and have seen cerebellar mutism before bromocriptine is supposed to make the children wake up and become more active. Not really what I wanted to hear, but they don't seem to be too concerned with her sleepiness. They attribute it to catching up on rest since she hasn't had very restful sleep since surgery. Of course, I am still worried, but what else do Mom's do best besides worry?!?!
January 16- Shayleigh remains sleepy and is slightly irritable when she is awake. Again, I voiced my concerns to the physical medicine doctors, but they don't seem concerned. They think her sleep/wake cycle is off and that she is catching up from many nights of restless sleep. Shayleigh seems content in therapy, but doesn't really do anything new or exciting. Although content is much better than what we were dealing with!
January 17- After spending 2 days in a super funky mood, today I have finally decided not to be upset with all this sleeping and not to be discouraged. It is so hard to be here 24-7 and watch my baby struggle everyday. Especially for me. I am not a positive person. I am greatful for my Mom who is able to see the little progress she does do. If I were here all by myself it would not be good at all. We try a different stander today and Shayleigh does amazing tolerating it! She probably stands for a good 10 minutes and plays with her playdoh on the tray that comes in the front of her stander. PT asks me if I want to take it back to the room and work with her with it! Of course I said yes!! Shayeligh does well with OT. OT is really good at challenging her to do different things. I find out today from the speech therapist that speech is normally the last thing to come back after brain issues. Slightly discouraging news, but praying/hoping/believing it WILL come back!!
January 18- Shayleigh woke up fussy this morning. I am afraid she might be coming down with a cold, although how she got that I have NO idea. I always worry when she wakes up fussy that she will spend the entire day fussy and not do well with therapy. However, this was not the case for therapy today. PT decided to try to see if Shayleigh would be able to walk on treadmill. He didn't put her in a harness, but instead kinda held her up. She was able to take a few steps by herself with both of her feet! I was SOOOOO excited! They were even able to move up how fast the treadmill was going!! took a few steps by herself with both feet. By the afternoon Shayleigh is not fussy and acts like she feels absolutely fine. The pedi sends neuropsych by for a visit and for me to ask more questions. Although, I am asking the same ones to physical medicine and they are able to answer them all. Neuropsych doesn't normally see kids until they are 3 and up and really I have no idea why the pedi sent her by, but we asked her the same questions we asked Physical Medicine. Neuropsych tells us that they normally see the quickest and most progression in the first 3 months after surgery with progression slacking off and ultimately winding down 2 years after surgery. I speak to her about my concern with Shayleighs regression in speech. She isn't making noises like she was and she won't let me brush her teeth again. She says that we will give it a few days and see how things progress. She says she will stop by next week and we can talk and go from there. Daddy comes back into town for the weekend and sends mommy to Ronald McDonald house for her full nights rest.
January 19- Shayleigh has therapy at 0900 this morning so I make sure that we are back to the hospital by 0830 to help Daddy get her ready. We arrive and she is already dressed and ready. (good job daddy!!) We get in our wheelchair and wait for our first therapy which is OT. Our normal therapists are off on weekends so we normally have prn people or other therapists who work with her. Unfortunately 0900 comes and goes. They are normally about 5-10 minutes later than the time they give me anyway, so I don't think anything about it. We just stroll Shayleigh down the hallway to keep her busy while we wait. 0915 rolls around. They are never this late. I ask the nurse what the deal is. She calls and says "they don't have her on the schedule for today. They say she isn't making any progress so they are going to give her a day off." First of all, what?!?!?!? If she isn't making any progress we should be pushing her harder NOT giving her days off! Plus, she walked on the treadmill the day before!! And pt & ot have both told me she is making good progress. I am beside myself. I start crying. Speech comes by and it is our normal therapist who told me the day before "I will see yall tomorrow." And when I said "I thought you didn't work weekends." She says "I am tomorrow for Shayleigh." Anyway, I ask her and she says she isn't making any progress in speech and apparently not at all so she needs a day off. I am so upset. Of course, about this time we receive our first visitors from home. I decide to run down to the gym to get Shayleighs stander that we had accidentally left down there the day before. I am so upset when I get down there, but of course just by "chance" (God, again?!) the student that has been working with her for PT is there making up a few sick days from the week before. I stalk her and wait by the window. When she comes around I ask her about the no progress business. She is just as flabergasted as I am and says she is making progress and we are very pleased. She then tells me that she thinks scheduling was messed up. Really all I cared about hearing was that she was making progress. Even though, they have been telling me she has, when they all the sudden "take it back" I just needed a little encouragement again. The nurse sends a message to the director of therapy who apologizes profusely and says she is sorry for the mix up. I am still upset that someone, somewhere mentioned that she is making no progress. I am also upset that speech decided she needed a day off. She is here for the sole purpose of rehab and I don't think that she should take any extra days off! Not making progress is a reason NOT to take a day off! I am anxious to talk to her regular PT & OT and I am also hoping the director of therapy makes an appearance and has an explanation. We do our own version of PT & OT minus the treadmill.
January 20- Shayleigh enjoys playing with her cousin Victoria. They play with rocks and playdoh. We do our own PT & OT with her. Plus, with all the excitement from visitors we figure she is probably worn out! Nick finds out before he is about to leave to go home that his boss is giving him Monday off. Shayleigh and I are excited that Daddy will be here an extra day! And I am especially excited since I am anxious about how Monday will turn out. We also talk to the dr and the nurse supervisor about a new speech therapist. We are worried that she is giving up on our girl and we can't have that!!
Monday, January 21, 2013
Rehab 2
January 9- Today, we started on a new medicine called bromocriptine. Research suggests it can be used to speed up the recovery process in children with cerbellar mutism. We are very hopeful as we start this new medication, but as with this whole process it has no guarantee on whether it will work or not. We are however, incredibly hopeful! Shayleigh is able to play with playdoh with her left hand and move it around on bedside table. We are concerned about her vision though. She plays with her playdoh but stares straight ahead and won't hardly look down at her hands while she is playing with it. We voiced our concerns to the pedi and the physical medicine dr and they have put in for a vision consult. Unfortunately, the vision clinic is only once a week on Wednesdays and she won't be available until next Wednesday. Shayleigh is also able to lay on her stomach. She is making progress, it just isn't as quickly as we would like.
January 10- Shayleigh is very tired today. She doesn't want to do much of anything but sleep, but when she is up she is more alert and content. No "miracle" has happened with her second dosage of bromo, but we still continue to wait and hope and pray. We had a family dinner this evening and we all went (my parents, me and Shayleigh). They had fajitas & I also found some grapes. We parked Shayleigh at the table and it was pitiful the way she watched me as I ate the grapes. She wants to eat so bad. We have decided that we won't be eating in front of her anymore. Or taking her anywhere with us while we eat. We are hoping that she will be able to start eating soon. Shayleigh is more vocal today than she has been in the past. Normally, she has just been crying, but today she was making other sounds which was encouraging.
January 11 - My dad came in from Lake Charles and was playing with Shayleigh today doing a little silly thing he did when we were kids and she smiled and laughed/giggled!! It was the most amazing thing to hear and see!! The best part was that her giggle/laugh sounded just like it used to! It was music to this mommy's ears for sure!! Later on in the afternoon I was snuggling with her and "getting her neck" and she laughed and giggled for me too! She only does it if we try to make her laugh, but hey, it's a sound worth working for! We sent the video of the first laugh to daddy and it made him so happy! He is so ready to get down here and love on his girl! Shayleigh is doing much better using her right hand. It is still weaker than her left, but she has been trying to use it more. Daddy arrived and came bearing gifts mommy told him we needed from home. Most important gift was Shayleigh's hair bows!! She has never been without bows for this long and since our hair was long enough to fix I put the hair bands up and I didn't have time to look for them before we headed over here for rehab. The nurses and pretty much everyone who pass by my room and see the bows are stunned. They all stop and ask if any are for sale! lol. Of course, Shayleigh says no, they are all hers & that it is very important for a little girl to be properly accesorized! (ok, maybe mommy says that, but I'm only saying what I know she's thinking.).
January 12- Shayleigh touched her nose today. Just randomly. She also swiped at her face and rubbed her eyes. Sounds like something simple, but oh so encouraging to see! She is interested in finding things. She also put her hand in her mouth and was messing with her tongue. I think she is trying to tell her tongue to wake up!! Shayleigh sat straight up in bed last night and scared the mess out of me. lol. It was good to see, but it was just super surprising. She also scared the tech who was in the room. We will take every little bit of progress we can! (just maybe not in the middle of the night. lol jk)
January 13- Today is our day off from therapy. Although we normally do some type of therapy ourselves in her room. Today we played with playdoh. She loves it! We have finally found something that she still enjoys playing with. She was able to squeeze playdoh with her right hand! A huge improvement from not being able to do anything with her right hand! She is also able to transfer playdoh from her right hand to her left hand. She hasn't been doing that. Last night she scared me again. She was restless turning from side to side. I normally give her a few minutes to see if she will fall right back asleep, but she didn't so I got up from the couch I have next to the bed and her tongue is sticking out of her mouth and her eyes are wide open. Talk about scare me to death. My first thought was that she was having a seizure, but it was so quick and she rolled right back over and fell right back asleep that I knew it wasn't a seizure. The nurse came in and we started goin through her medication list to see if any of the side effects could/would cause that. We also called the pedi that was on that night. He didn't seem too concerned, but said that if it happened again to call and he would come and check her out. Needless to say I didn't sleep much at all for fear of missing something. Fortunately, the rest of the night was uneventful. Shayleigh has also found her belly button. And if you ask her she will find it for you.
January 10- Shayleigh is very tired today. She doesn't want to do much of anything but sleep, but when she is up she is more alert and content. No "miracle" has happened with her second dosage of bromo, but we still continue to wait and hope and pray. We had a family dinner this evening and we all went (my parents, me and Shayleigh). They had fajitas & I also found some grapes. We parked Shayleigh at the table and it was pitiful the way she watched me as I ate the grapes. She wants to eat so bad. We have decided that we won't be eating in front of her anymore. Or taking her anywhere with us while we eat. We are hoping that she will be able to start eating soon. Shayleigh is more vocal today than she has been in the past. Normally, she has just been crying, but today she was making other sounds which was encouraging.
January 11 - My dad came in from Lake Charles and was playing with Shayleigh today doing a little silly thing he did when we were kids and she smiled and laughed/giggled!! It was the most amazing thing to hear and see!! The best part was that her giggle/laugh sounded just like it used to! It was music to this mommy's ears for sure!! Later on in the afternoon I was snuggling with her and "getting her neck" and she laughed and giggled for me too! She only does it if we try to make her laugh, but hey, it's a sound worth working for! We sent the video of the first laugh to daddy and it made him so happy! He is so ready to get down here and love on his girl! Shayleigh is doing much better using her right hand. It is still weaker than her left, but she has been trying to use it more. Daddy arrived and came bearing gifts mommy told him we needed from home. Most important gift was Shayleigh's hair bows!! She has never been without bows for this long and since our hair was long enough to fix I put the hair bands up and I didn't have time to look for them before we headed over here for rehab. The nurses and pretty much everyone who pass by my room and see the bows are stunned. They all stop and ask if any are for sale! lol. Of course, Shayleigh says no, they are all hers & that it is very important for a little girl to be properly accesorized! (ok, maybe mommy says that, but I'm only saying what I know she's thinking.).
January 12- Shayleigh touched her nose today. Just randomly. She also swiped at her face and rubbed her eyes. Sounds like something simple, but oh so encouraging to see! She is interested in finding things. She also put her hand in her mouth and was messing with her tongue. I think she is trying to tell her tongue to wake up!! Shayleigh sat straight up in bed last night and scared the mess out of me. lol. It was good to see, but it was just super surprising. She also scared the tech who was in the room. We will take every little bit of progress we can! (just maybe not in the middle of the night. lol jk)
January 13- Today is our day off from therapy. Although we normally do some type of therapy ourselves in her room. Today we played with playdoh. She loves it! We have finally found something that she still enjoys playing with. She was able to squeeze playdoh with her right hand! A huge improvement from not being able to do anything with her right hand! She is also able to transfer playdoh from her right hand to her left hand. She hasn't been doing that. Last night she scared me again. She was restless turning from side to side. I normally give her a few minutes to see if she will fall right back asleep, but she didn't so I got up from the couch I have next to the bed and her tongue is sticking out of her mouth and her eyes are wide open. Talk about scare me to death. My first thought was that she was having a seizure, but it was so quick and she rolled right back over and fell right back asleep that I knew it wasn't a seizure. The nurse came in and we started goin through her medication list to see if any of the side effects could/would cause that. We also called the pedi that was on that night. He didn't seem too concerned, but said that if it happened again to call and he would come and check her out. Needless to say I didn't sleep much at all for fear of missing something. Fortunately, the rest of the night was uneventful. Shayleigh has also found her belly button. And if you ask her she will find it for you.
Saturday, January 12, 2013
Rehab
January 4 - It takes me until 0200 this morning to finish getting things ready for our transfer to Our Children's House at Baylor. I lay down for a few hours, but have to get up around 0600 to get things ready for Balentine to come pick us up. We give Shayleigh some Ativan to help her rest for the ambulace ride. We end up with 2 great girls transferring us! They let Nick ride with us in the front seat. Our entourage follows us (we have 3 cars). And we go in style in the new Mercedes. Shayleigh starts off on the stretcher by herself with me sitting on the side by her, but right before we stop for bathroom breaks, sugar checks, and breakfast (for me) she gets a little fussy. I end up on the stretcher with her for the remaining 1 1/2 hour ride. We both doze off. We get here and it is surreal. I don't really know how else to explain it. We get to our room and meet our nurse (who is fabulous). Our room is directly across from the nurses station which is good and bad. All the doctors come in and they are fabulous! They listen to us and act like they have nothing better to do than be with us. It makes us feel really good about choosing this facility. Pt & Ot make an appearance & work with her a little & nutrition also comes by. It is overwhelming in a good way. Tons of people in and out most the day. We get our schedule for therapy for Saturday. Sunday is the only day of rest therapy wise. It is a busy day, but a good day. Shayleigh spends most of her day sleeping. We feel very confident in our team and our decision with this facility. At the end of the day, Nick has to leave because only one parent can stay the night. I cry. Give me a break, I'm pregnant! lol
January 5- Shayleigh spends her first night in a crib by herself since surgery. I have been scrunching up at the end of the bed because she has all the lines and wires & I didn't want her to pull anything out. So, when she moved mommy was all over it rearranging lines and wires. Needless to say, I haven't had much rest between her moving around and people coming in and out. But, I don't care. Her first night here and her first night by herself and what does she do??! She pulls her TPT tube out. lol. So we have to worry about getting that back in before her next dose of medication later this afternoon. The doctors come around again and we ask a few more questions. Shayleigh is quietly alert. She goes down for her Pt and OT and does relatively well. I tell PT that we are having trouble with her wanting to lay on her back for diaper changes. She normally sleeps curled up on her left side and wants to do that ALL the time. The PT gives us a wedge to help us with positioning. After we get back to the room with the wedge and try to change her diaper she has no problem rolling onto her back. We don't even need the wedge at all! She also takes a few bites of strawberry yogurt, some orange juice and some ice cream off a flat spoon for speech therapy. She doesn't cry when they bring the food to her mouth and opens her mouth for them. Which is a huge feat for her!! Speech tells us not to try to feed her on our own. We are finally able to talk to a speech therapist and get an ok t o brush her teeth. I know it really is the least of our concerns, but to mommy it is a super big deal! She actually allows me to brush her teeth with a little sponge on a stick without crying. Honestly, I think she enjoyed it! Nick informs me that he is staying with her tonight so I can go back to Ronald McDonald house and get some rest. He pulls the "I won't get to see her until next Friday" card.lol I don't mind him staying because he does need time with her plus I feel that she is much more stable. So, after making him promise he will sleep with her and make sure she doesn't pull her tube out and that he will call me for any questions or concerns I head to the RMDH for my first full nights uninterrupted sleep since 12/21.
January 6- I set my alarm (after Nick isntructed me not too) for 0745. Dress and am ready for breakfast by 0800. We are heading back to OCH by 0830. Of course, nothing happened during the night and she did fabulous. Her nurse during the night apparently checked on her every 1-2 hours to make sure she didn't pull her tube out. Nick looks no worse for the wear. Today is our rest day from therapy. We work with her a little on a few minor things that we were shown the day before. She has a really great day and is quiet and alert. It makes mommy and daddy very happy!
January 7- First full day of therapy. PT is scheduled for 0830 this morning. Shayleigh spends most of the morning prior to PT crying. She spends the whole 30 minute session with PT crying. Crying real tears! It is terrible and so mommy spends the rest of the day down in the dumps & crying. This is where my mom comes in and really becomes even more of a blessing. She watched Shayleigh so I could leave and get something to eat and to go to the store down the road and calm down. It is so discouraging to watch your child who is so smart and so advanced cry when someone is trying to "play" with her. Speech therapy comes and she does relatively well. She is able to eat a few bites of strawberry yogurt. OT is the saving grace of the day! He comes around 2:00 pm to bring her to the gym. My mom has bascially told me that I was to stay in the room and take a nap because that is what was causing me to break down. While they were working with OT, mom got to talking to the therapist and he had some encouraging words to say. I know this sounds silly, but I really do need encouragement too. I encourage Shayleigh and I try my best to stay positive and keep a good attitude for her, but nothing in life prepares you for this. As a mom, it is terribly hard to watch this and not break down every once in a while. Of course, baby brother doesn't really help the situation with all the hormones he's bringing in the picture. So, anyway, the therapist gives me a pep talk and I realize that it isn't the end of the world and it IS the first day of therapy. I think I have this expectation that we are here now, I fought so hard to get her here and I just expect her to be showing tons of improvement right away. I am slowly learning patience. Of course, we have the mutism that is causing most of our problems. Have I mentioned how very thankful I am that my mom is here?!?! She is willing and ready to step in when I need a mental break and she is also much more positive and sees the small changes that I miss. I keep waiting for something huge and she is constantly pointing out the small accomplishments and changes that happen each day. If it weren't for her...it would be bad. I would have such a hard time seeing the good. Shayleigh has a better afternoon and we discuss moving PT back later in the afternoon to help her perform better.
January 8- Shayleigh wakes up at 0100 this morning tossing, turning and crying. It is too early to give her more Benadryl (we have been taking it every night to help her sleep for a few hours), Ativan has been discontinued and the only thing we have to work with is Motrin or Tylenol. She sleeps pretty good after Motrin, but she is still slightly restless. We get her up for 0800 because we are supposed to have PT at 0830. We get her in her wheelchair (she was fitted for this sweet ride on the first day she got here) and we take off down the hall. She loves going for rides. We find out that PT has been moved to that afternoon. She seems to enjoy riding so we keep walking up and down the hallways and then we go to the library to read a book. She starts getting fussy around 10 ish so we head back to the room and I rock her. We lay her down for a little nap in the bed and we let her rest until around 1250. She is supposed to be dressed, in her chair and ready for the therapist at the time scheduled for therapy. We start the afternoon off with speech therapy at 1:00. She does ok. She seems to get frustrated and spends some of therapy crying. The therapist only stays with her and works with her for about 15-20 minutes. I have my first care meeting where everyone on the team comes together and we discuss plans for Shayleigh and plans for discharge. They set her discharge date at January 31. I really kinda freaked out. I was super surprised that they set it for so soon when she really had not had much therapy or progress.
January 5- Shayleigh spends her first night in a crib by herself since surgery. I have been scrunching up at the end of the bed because she has all the lines and wires & I didn't want her to pull anything out. So, when she moved mommy was all over it rearranging lines and wires. Needless to say, I haven't had much rest between her moving around and people coming in and out. But, I don't care. Her first night here and her first night by herself and what does she do??! She pulls her TPT tube out. lol. So we have to worry about getting that back in before her next dose of medication later this afternoon. The doctors come around again and we ask a few more questions. Shayleigh is quietly alert. She goes down for her Pt and OT and does relatively well. I tell PT that we are having trouble with her wanting to lay on her back for diaper changes. She normally sleeps curled up on her left side and wants to do that ALL the time. The PT gives us a wedge to help us with positioning. After we get back to the room with the wedge and try to change her diaper she has no problem rolling onto her back. We don't even need the wedge at all! She also takes a few bites of strawberry yogurt, some orange juice and some ice cream off a flat spoon for speech therapy. She doesn't cry when they bring the food to her mouth and opens her mouth for them. Which is a huge feat for her!! Speech tells us not to try to feed her on our own. We are finally able to talk to a speech therapist and get an ok t o brush her teeth. I know it really is the least of our concerns, but to mommy it is a super big deal! She actually allows me to brush her teeth with a little sponge on a stick without crying. Honestly, I think she enjoyed it! Nick informs me that he is staying with her tonight so I can go back to Ronald McDonald house and get some rest. He pulls the "I won't get to see her until next Friday" card.lol I don't mind him staying because he does need time with her plus I feel that she is much more stable. So, after making him promise he will sleep with her and make sure she doesn't pull her tube out and that he will call me for any questions or concerns I head to the RMDH for my first full nights uninterrupted sleep since 12/21.
January 6- I set my alarm (after Nick isntructed me not too) for 0745. Dress and am ready for breakfast by 0800. We are heading back to OCH by 0830. Of course, nothing happened during the night and she did fabulous. Her nurse during the night apparently checked on her every 1-2 hours to make sure she didn't pull her tube out. Nick looks no worse for the wear. Today is our rest day from therapy. We work with her a little on a few minor things that we were shown the day before. She has a really great day and is quiet and alert. It makes mommy and daddy very happy!
January 7- First full day of therapy. PT is scheduled for 0830 this morning. Shayleigh spends most of the morning prior to PT crying. She spends the whole 30 minute session with PT crying. Crying real tears! It is terrible and so mommy spends the rest of the day down in the dumps & crying. This is where my mom comes in and really becomes even more of a blessing. She watched Shayleigh so I could leave and get something to eat and to go to the store down the road and calm down. It is so discouraging to watch your child who is so smart and so advanced cry when someone is trying to "play" with her. Speech therapy comes and she does relatively well. She is able to eat a few bites of strawberry yogurt. OT is the saving grace of the day! He comes around 2:00 pm to bring her to the gym. My mom has bascially told me that I was to stay in the room and take a nap because that is what was causing me to break down. While they were working with OT, mom got to talking to the therapist and he had some encouraging words to say. I know this sounds silly, but I really do need encouragement too. I encourage Shayleigh and I try my best to stay positive and keep a good attitude for her, but nothing in life prepares you for this. As a mom, it is terribly hard to watch this and not break down every once in a while. Of course, baby brother doesn't really help the situation with all the hormones he's bringing in the picture. So, anyway, the therapist gives me a pep talk and I realize that it isn't the end of the world and it IS the first day of therapy. I think I have this expectation that we are here now, I fought so hard to get her here and I just expect her to be showing tons of improvement right away. I am slowly learning patience. Of course, we have the mutism that is causing most of our problems. Have I mentioned how very thankful I am that my mom is here?!?! She is willing and ready to step in when I need a mental break and she is also much more positive and sees the small changes that I miss. I keep waiting for something huge and she is constantly pointing out the small accomplishments and changes that happen each day. If it weren't for her...it would be bad. I would have such a hard time seeing the good. Shayleigh has a better afternoon and we discuss moving PT back later in the afternoon to help her perform better.
January 8- Shayleigh wakes up at 0100 this morning tossing, turning and crying. It is too early to give her more Benadryl (we have been taking it every night to help her sleep for a few hours), Ativan has been discontinued and the only thing we have to work with is Motrin or Tylenol. She sleeps pretty good after Motrin, but she is still slightly restless. We get her up for 0800 because we are supposed to have PT at 0830. We get her in her wheelchair (she was fitted for this sweet ride on the first day she got here) and we take off down the hall. She loves going for rides. We find out that PT has been moved to that afternoon. She seems to enjoy riding so we keep walking up and down the hallways and then we go to the library to read a book. She starts getting fussy around 10 ish so we head back to the room and I rock her. We lay her down for a little nap in the bed and we let her rest until around 1250. She is supposed to be dressed, in her chair and ready for the therapist at the time scheduled for therapy. We start the afternoon off with speech therapy at 1:00. She does ok. She seems to get frustrated and spends some of therapy crying. The therapist only stays with her and works with her for about 15-20 minutes. I have my first care meeting where everyone on the team comes together and we discuss plans for Shayleigh and plans for discharge. They set her discharge date at January 31. I really kinda freaked out. I was super surprised that they set it for so soon when she really had not had much therapy or progress.
Tuesday, January 8, 2013
Our emotional roller coaster 2
December 28- She has her TPT tube and is getting continuous feeds for 24 hours to help her with her nutrition. She seems to be tolerating it well. We are slowly increasing the feedings until we reach our target feed rate. We are hoping with some nutrition we will begin to see a little change in her. She still sleeps a lot. She still isn't talking and really isn't interested in anything. Pt came and showed us some things to do with her. Unfortunately she will be off for the holidays and won't be back to visit until next Wednesday. Which is very disheartening. It's hard being the parent and the therapist. She is able to shake her head yes and no when asked questions. It is hard to get an answer though because she remains irritable. They think it is due to the Decadron and the cerebellar mutism. Poor baby.
December 29- Everything remains the same. The nutrition doesn't seem to help the way we had hoped. We just keep watching and waiting. We start worrying about her not having a good BM.
December 30 - The pediatrician wants to do yet another CT scan just to rule stuff out. Shayleigh is given 1 mg Ativan before procedure and 12.5 of Benadryl. She refuses to stay still for the scan. The nurse ends up giving her another 1 mg of Ativan and they have to use a whole roll of tape to tape her head down. LOL. My little girl is a fighter. I was kinda worried because that is A LOT of medicine,but the nurse and the resident went down with her and were ready with an ambu bag if needed. The CT comes back and shows she has even less swelling, although swelling still remains in her right and left cerebellum. So that is good news for us!
December 31- New Year's Eve. The hospital basically shuts down except for nurses and doctors. Nick and I are frustrated that no one is working with our girl. We get her up and ride her down the hallwall in a wheelchair and try to get her sitting up and interested in anything. Not even play-doh merits a reaction. And she LOVES play-doh. It is harder and harder to remain encouraged. We have changed her feeds from regular pedialyte to pedialyte with fiber. She is also taking colace and miralax. She hasn't had a good BM. She is able to hold her head up a little more today that she has been. The doctors all remain positive and have nothing negative to say. We continue to wait.
January 1- Happy New Year. Nick and I have now decided if we knew then what we know now we would have waited for surgery. The plan was to have surgery on the 21 and be out by the 26 or 27. Shayleigh still dosen't say anything. She remains irritable & kinda lethargic. She gets super upset when we even mention food or drink to her. She isn't even interested in suckers. Before surgery she would eat suckers all day if I would let her. Goodness forbid we try to put anything to her lips. Even carmex or "lip stick" as we call it gets her agitated. She starts crying, clenching her lips and throwing her head around. We are ready for therapy services to start tomorrow. She is supposed to have a swallow test done in the morning and that will tell us more about where she is swallowing wise. The neurosurgeon has mentioned getting the ball rolling for inpatient therapy. She told us she will speak with the case manager. She gives us a choice between Baylor in Dallas or Childrens in New Orleans.
January 2 - We turned her feedings off at 0200 this morning so she would be ready to eat something. The neurosurgeon comes around and she gets so agitated her TPT comes out. We don't want to replace it until we get the swallow test and results. We have been told we will do it this am. Finally, at 1:30 p.m. we find out that the swallow test that was scheduled for 0800 this am isn't happening because the pediatric speech therapist (the ONLY one they have) is out of town until tomorrow. Mommy makes a HUGE big stink!! We decide that we will go ahead and put the tube back in and then go from there. We will have to shut the feeding off tomorrow morning around 0300 so she can take the swallow test in the morning. Mommy basically has a melt down and lets everyone know that she isn't happy. I realize people need breaks and holidays are breaks, but I do NOT understand letting your one and only speech therapist leave town with no backup for so long. I mean, at least have someone on call for emergencies. I have decided (with a little nudging) that I will be complaining about this therapy issue to management. She is more alert today, but slightly agitated. Of course, she is probably picking up that from me. We have started making a fuss and pushing to be transferred to inpatient rehab. We have told case management that we want to go to Baylor in Dallas. She has sent the paperwork and informs us that they will discuss it tomorrow and let us know if they accept her or not. Nick's boss has been absolutely amazing,but one of us does need to go back to work, which means he will only be able to visit on weekends. We feel that LSU was the best choice to have the surgery, but we are wasting time here now. We know that she needs aggressive therapy. We feel that each and everyday we spend here at LSU makes it much longer until we can get her back to where she needs to be therapy wise.
January 3- Our swallow test is scheduled for sometime this morning. Since Nick was supposed to go back to work yesterday and ended up waiting basically all day on a swallow test that didn't happen I have decided they better come and do this test early this morning. I told them that if we haven't gone by 10 am then I will really raise a ruckus. LOL. The staff assures me that they totally understand and I think they are just as frustrated as we are. We finally have the swallow test and upper GI around 0900 (a really good thing). We find out she is able to swallow without aspirating, but her tongue isn't working like it should. She can't move it and she isn't able to move stuff to the back of her mouth. The upper GI was fine. We were encouraged. We were super glad we did not go straight to a PEG tube as well. We ended up having to replace her TPT tube again. Nick heads to work for the afternoon, although I don't think he gets a whole lot of work done due to all the phone calls. We find out we are accepted at Baylor with transfer being set up for 0700 that next morning! The case manager told us that she had NEVER had anyone be accepted to Baylor that quickly. She said normally it takes 2-3 days just to hear back from them. By this time, we are really overwhelmed. We then decide we should probably find out if our insurance will cover Dallas. We find out that Baylor isn't in network and that our insurance will only pay 80% until a certain amount and then it will be covered at 100%. But, it also depends on how they bill we may end up going above and beyond that amount. With this new information we ask the case manager to send paperwork to Children's in New Orleans because it is in network. We hear from the case manager that IF we get accepted into Children's it would be late Friday afternoon/evening before we could get down there and we wouldn't get seen by anyone until Monday. So basically, we would be waiting...again. So, with this information we decide Baylor is where we are meant to go. At this point, like most parents (at least I hope most parents are like this) we just want what is best for our baby girl. If that means paying medical bills for the next few years then so be it. My OBGYN calls before we hear back from Baylor and we decide to set my glucose test for the next day at 0845. Once we decide about Baylor however I have to call her back and they fit me in for the glucose test and an appt that afternoon. I get back to the hospital after my appointment and the OBGYNS nurse calls to tell me that I failed my 1 hour glucose test and since I am leaving town in the am they will call out a glucometer for me to check my sugars. I have to check a fasting sugar and 2 hours after breakfast, lunch and dinner. She tells me to call in with my numbers Monday morning and we will go from there. I can't tell you how excited that makes me (heavy sarcasm). So, once Nick gets back to the hospital that night we bathe Shayleigh, shovel some food down and I head to the house to pack. At this point, I haven't been home AT all since 12/21.
December 29- Everything remains the same. The nutrition doesn't seem to help the way we had hoped. We just keep watching and waiting. We start worrying about her not having a good BM.
December 30 - The pediatrician wants to do yet another CT scan just to rule stuff out. Shayleigh is given 1 mg Ativan before procedure and 12.5 of Benadryl. She refuses to stay still for the scan. The nurse ends up giving her another 1 mg of Ativan and they have to use a whole roll of tape to tape her head down. LOL. My little girl is a fighter. I was kinda worried because that is A LOT of medicine,but the nurse and the resident went down with her and were ready with an ambu bag if needed. The CT comes back and shows she has even less swelling, although swelling still remains in her right and left cerebellum. So that is good news for us!
December 31- New Year's Eve. The hospital basically shuts down except for nurses and doctors. Nick and I are frustrated that no one is working with our girl. We get her up and ride her down the hallwall in a wheelchair and try to get her sitting up and interested in anything. Not even play-doh merits a reaction. And she LOVES play-doh. It is harder and harder to remain encouraged. We have changed her feeds from regular pedialyte to pedialyte with fiber. She is also taking colace and miralax. She hasn't had a good BM. She is able to hold her head up a little more today that she has been. The doctors all remain positive and have nothing negative to say. We continue to wait.
January 1- Happy New Year. Nick and I have now decided if we knew then what we know now we would have waited for surgery. The plan was to have surgery on the 21 and be out by the 26 or 27. Shayleigh still dosen't say anything. She remains irritable & kinda lethargic. She gets super upset when we even mention food or drink to her. She isn't even interested in suckers. Before surgery she would eat suckers all day if I would let her. Goodness forbid we try to put anything to her lips. Even carmex or "lip stick" as we call it gets her agitated. She starts crying, clenching her lips and throwing her head around. We are ready for therapy services to start tomorrow. She is supposed to have a swallow test done in the morning and that will tell us more about where she is swallowing wise. The neurosurgeon has mentioned getting the ball rolling for inpatient therapy. She told us she will speak with the case manager. She gives us a choice between Baylor in Dallas or Childrens in New Orleans.
January 2 - We turned her feedings off at 0200 this morning so she would be ready to eat something. The neurosurgeon comes around and she gets so agitated her TPT comes out. We don't want to replace it until we get the swallow test and results. We have been told we will do it this am. Finally, at 1:30 p.m. we find out that the swallow test that was scheduled for 0800 this am isn't happening because the pediatric speech therapist (the ONLY one they have) is out of town until tomorrow. Mommy makes a HUGE big stink!! We decide that we will go ahead and put the tube back in and then go from there. We will have to shut the feeding off tomorrow morning around 0300 so she can take the swallow test in the morning. Mommy basically has a melt down and lets everyone know that she isn't happy. I realize people need breaks and holidays are breaks, but I do NOT understand letting your one and only speech therapist leave town with no backup for so long. I mean, at least have someone on call for emergencies. I have decided (with a little nudging) that I will be complaining about this therapy issue to management. She is more alert today, but slightly agitated. Of course, she is probably picking up that from me. We have started making a fuss and pushing to be transferred to inpatient rehab. We have told case management that we want to go to Baylor in Dallas. She has sent the paperwork and informs us that they will discuss it tomorrow and let us know if they accept her or not. Nick's boss has been absolutely amazing,but one of us does need to go back to work, which means he will only be able to visit on weekends. We feel that LSU was the best choice to have the surgery, but we are wasting time here now. We know that she needs aggressive therapy. We feel that each and everyday we spend here at LSU makes it much longer until we can get her back to where she needs to be therapy wise.
January 3- Our swallow test is scheduled for sometime this morning. Since Nick was supposed to go back to work yesterday and ended up waiting basically all day on a swallow test that didn't happen I have decided they better come and do this test early this morning. I told them that if we haven't gone by 10 am then I will really raise a ruckus. LOL. The staff assures me that they totally understand and I think they are just as frustrated as we are. We finally have the swallow test and upper GI around 0900 (a really good thing). We find out she is able to swallow without aspirating, but her tongue isn't working like it should. She can't move it and she isn't able to move stuff to the back of her mouth. The upper GI was fine. We were encouraged. We were super glad we did not go straight to a PEG tube as well. We ended up having to replace her TPT tube again. Nick heads to work for the afternoon, although I don't think he gets a whole lot of work done due to all the phone calls. We find out we are accepted at Baylor with transfer being set up for 0700 that next morning! The case manager told us that she had NEVER had anyone be accepted to Baylor that quickly. She said normally it takes 2-3 days just to hear back from them. By this time, we are really overwhelmed. We then decide we should probably find out if our insurance will cover Dallas. We find out that Baylor isn't in network and that our insurance will only pay 80% until a certain amount and then it will be covered at 100%. But, it also depends on how they bill we may end up going above and beyond that amount. With this new information we ask the case manager to send paperwork to Children's in New Orleans because it is in network. We hear from the case manager that IF we get accepted into Children's it would be late Friday afternoon/evening before we could get down there and we wouldn't get seen by anyone until Monday. So basically, we would be waiting...again. So, with this information we decide Baylor is where we are meant to go. At this point, like most parents (at least I hope most parents are like this) we just want what is best for our baby girl. If that means paying medical bills for the next few years then so be it. My OBGYN calls before we hear back from Baylor and we decide to set my glucose test for the next day at 0845. Once we decide about Baylor however I have to call her back and they fit me in for the glucose test and an appt that afternoon. I get back to the hospital after my appointment and the OBGYNS nurse calls to tell me that I failed my 1 hour glucose test and since I am leaving town in the am they will call out a glucometer for me to check my sugars. I have to check a fasting sugar and 2 hours after breakfast, lunch and dinner. She tells me to call in with my numbers Monday morning and we will go from there. I can't tell you how excited that makes me (heavy sarcasm). So, once Nick gets back to the hospital that night we bathe Shayleigh, shovel some food down and I head to the house to pack. At this point, I haven't been home AT all since 12/21.
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