Monday 2-19-18
This weekend I really started realizing and somewhat processing just how close we came to losing our precious baby boy. That the Docs don't really even understand how he is still here. Oh, I just, I just, oh, I just don't know.......... I can't even imagine, I just can't! I need him, we need him! Oh Jesus, Thank you! Thank you God for baby boy! Thank you. Words just fall so short. I just don't even know what I'm typing bc the words just don't express enough. My heart is just so full of so much. So here we are, in a place we never thought we would be, learning things we never expected to need know, leaning on others in ways we always thought we could handle ourselves bc life has hit and hit us hard! But we still have him, whatever the future holds, he is still with us! As we wake this am, my miracle wants his windows open to let the sun in. He also wanted to know where his daddy is this am. This boy has sure become extra attached to his daddy. He has started taking his meds by mouth which is another huge step towards getting his feeding tube out! Glenn put some new glass protectors on my phone and iPad bc the others had cracked. We use the tempered glass protectors so when he pulled the old one of my iPad it was like this big piece bc the glue was still holding it together. So I started cracking it more and Glenn got onto to me so I continued cracking it over the trash and Glenn kept giving me a hard time for being so destructive and I was like well, its trash anyways and Kayson was just laughing at us, he thought it was so funny. :) Then we took him out to the playground and he crawled to the tunnel and climbed (with his daddy supporting him) up the ladder and slid down the slide. He was still wobbly at times but he was doing it and enjoyed the playground. When we got here and they gave us the tour and showed us the playground, I thought well we may not get to use that, he can't even walk again yet. Well, not even a week later and he's out here playing! I was so wrong! PTL! :) Then childlife found him and they made slime and then worked on his abc's. He's getting a few confused. Then she put his slime in a baggie to bring back to his room and later I whispered to Glenn "How long do we have to keep this?!?" and Kayson answered, "forever"! There is absolutely nothing wrong with the boys hearing! LOL
Sunday, February 25, 2018
Friday, February 23, 2018
Kayson Strong as an Eagle Day 29 and 30
Saturday 2-17-18 and Sunday 2-18-18
Our babies are here! We love them all so much and miss them to pieces! We took them to the Perot museum today. That is a neat place. My fav part was all the gems and minerals. So pretty! Wow, God! His work is so amazing! His hidden treasures bc you have to search and mine to find them. Papaw stayed with Kayson. He stood at the sink and washed his hands with Papaw and they played outside, Kayson hadn't been outside to play since before his stroke! I don't even know if he remembers the snow that week before that he got to play in. Then watching the kids all together, I love seeing them interact and care for one another. They love each other so much. We had hugs from Kayson and a dancing session complete with a small robot that was bought at the Perot gift shop. Kayson even handled the controls some. Then we all went to see the playroom and Kayson wanted to give Kalani a ride so she sat with him and he held her tight on the way to the playroom. Then on Sunday am Papaw stayed with him again and got him a honeybun out of the vending machine while we took the other kiddos to IHOP for breakfast. Then we came back and we all went to the cafeteria and played Apples to Apples Junior. It was so nice to play a game all together again. Well, except Kalani, she just ran around and went from lap to lap and played with toys we brought down for her and then fell asleep in Papaw's lap. :) Then it was time for them all to go home. We get so sad to see them leave. We were so tired too that we went back to Kayson's room and all took a nap! I stayed the night with him, at bedtime he needed the blinds closed. The apartments across the street stay somewhat lit up and the open blinds cast shadows on the wall at night and he says thats creepy.
Our babies are here! We love them all so much and miss them to pieces! We took them to the Perot museum today. That is a neat place. My fav part was all the gems and minerals. So pretty! Wow, God! His work is so amazing! His hidden treasures bc you have to search and mine to find them. Papaw stayed with Kayson. He stood at the sink and washed his hands with Papaw and they played outside, Kayson hadn't been outside to play since before his stroke! I don't even know if he remembers the snow that week before that he got to play in. Then watching the kids all together, I love seeing them interact and care for one another. They love each other so much. We had hugs from Kayson and a dancing session complete with a small robot that was bought at the Perot gift shop. Kayson even handled the controls some. Then we all went to see the playroom and Kayson wanted to give Kalani a ride so she sat with him and he held her tight on the way to the playroom. Then on Sunday am Papaw stayed with him again and got him a honeybun out of the vending machine while we took the other kiddos to IHOP for breakfast. Then we came back and we all went to the cafeteria and played Apples to Apples Junior. It was so nice to play a game all together again. Well, except Kalani, she just ran around and went from lap to lap and played with toys we brought down for her and then fell asleep in Papaw's lap. :) Then it was time for them all to go home. We get so sad to see them leave. We were so tired too that we went back to Kayson's room and all took a nap! I stayed the night with him, at bedtime he needed the blinds closed. The apartments across the street stay somewhat lit up and the open blinds cast shadows on the wall at night and he says thats creepy.
Tuesday, February 20, 2018
Kayson Strong was an Eagle Days 26 - 28
Wednesday 2-14-18
MOVING DAY!!!!!!!!! I rode with him to OCH (Our Children's House) in the ambulance. He remembers this ride and it was my first time riding in an ambulance. Marmie stayed with him his first night here so Mama and Daddy could go out for Valentine's. That was so fun, we went to Dave and Busters and I had never been before.
Thursday 2-15-18
Busy day with lots of therapy assessments and chaplain visit who gave him a prayed over stuffed sheep. so cute and soft. He wrote his name! We got a tour of the new facility, cool playground! He is out of his restraints and doing great! They came by and gave him a heart pillow that he loves. He also cried when Glenn left for the night, tears and everything! Broke my heart! He wanted a happy meal for dinner. We went to the playroom and he played with duplo legos and a huge connect four with his daddy. Watched some olympics before bed.
Friday 2-16-18
fed himself his yogurt. Loves his new light up batman tennis shoes, stomping! Got pull-ups for him to wear instead of diapers since he's going in the potty more and more. He got to swing in PT and kicked a ball and he's walking more and more. He started moving his wheelchair on his own, he liked that. gives him a sense of control I think. This was a hard a day and I felt like crying most of it. I got mad at the speech lady's attitude and her rules and she had his food come already cut for dinner and another lady told Bridge that "seven year olds DON'T have strokes!" when we were trying to get an appt taken care of. Bridge made her look at the page and everyone else in the office was crying or close to it. The lady never apologized. some people. BUT the nurses really like my detailed charting for Kayson bc we have to write down all his ins and outs and I'm pretty detailed. They want to use my notes to show other parents what they need! lol, that made me feel good. So thats a good note to end this post. :)
MOVING DAY!!!!!!!!! I rode with him to OCH (Our Children's House) in the ambulance. He remembers this ride and it was my first time riding in an ambulance. Marmie stayed with him his first night here so Mama and Daddy could go out for Valentine's. That was so fun, we went to Dave and Busters and I had never been before.
Thursday 2-15-18
Busy day with lots of therapy assessments and chaplain visit who gave him a prayed over stuffed sheep. so cute and soft. He wrote his name! We got a tour of the new facility, cool playground! He is out of his restraints and doing great! They came by and gave him a heart pillow that he loves. He also cried when Glenn left for the night, tears and everything! Broke my heart! He wanted a happy meal for dinner. We went to the playroom and he played with duplo legos and a huge connect four with his daddy. Watched some olympics before bed.
Friday 2-16-18
fed himself his yogurt. Loves his new light up batman tennis shoes, stomping! Got pull-ups for him to wear instead of diapers since he's going in the potty more and more. He got to swing in PT and kicked a ball and he's walking more and more. He started moving his wheelchair on his own, he liked that. gives him a sense of control I think. This was a hard a day and I felt like crying most of it. I got mad at the speech lady's attitude and her rules and she had his food come already cut for dinner and another lady told Bridge that "seven year olds DON'T have strokes!" when we were trying to get an appt taken care of. Bridge made her look at the page and everyone else in the office was crying or close to it. The lady never apologized. some people. BUT the nurses really like my detailed charting for Kayson bc we have to write down all his ins and outs and I'm pretty detailed. They want to use my notes to show other parents what they need! lol, that made me feel good. So thats a good note to end this post. :)
Kayson Strong as an Eagle Day 25
Tuesday 2-13-18
Today he ate crackers and drank from a straw for speech! Its so exciting to see him eating! Luna the therapy dog came to visit again. She is so pretty. We talked to her handler and learned she was a rescue dog. Kayson also told his daddy to go away. lol I was sitting with him and let his right hand be free and he used to to take the restraint off his left! Such a smart boy! He also chewed up his aspirin for the nurse. Another step to remove that pesky tube! He ate a bit of pizza and tortilla with butter for lunch. Also he was getting super fidgety and we were trying to get him to communicate what he needed to us and we figured out he had to teeter, he did not want to go in his diaper so his daddy carried him to the potty and steadied him and he went in the potty!!! He also started things for fun. again, BOYS! LOL! We also had a visitor from church come and take us out for a bit while Marmie stayed with Kayson. It was nice to get to go to a new place for lunch and we found an antique store. I love walking through those and thinking what the stories of each item might be. I've also decided that I am going to start a button collection. I kept seeing all these buttons for sale there and it kinda made me a bit sad bc I love buttons (I don't know why) and I used to have a pretty cool although small collection and the kids (those precious little people God entrusted to my care) lost them all years ago. So I decided something this day! (This is not where we all say uh oh). At the church youth garage sale in the fall a very large (biggest one I've ever seen) mason jar was donated and I fell absolutely in love with it and bought it! This is going to be my super button jar! I am going to collect buttons starting as soon as I get some, lol and my grandchildren will have a button jar to enjoy when they come to grandma's (Lollie's) house. I got so excited at my decision in the store and Glenn was just laughing at me! He was like you're so silly and I was all like so I don't care! I'm going to have a button jar and this makes me happy so there! LOL Can you imagine, all those shapes and sizes and colors, my brain just goes into this sensory happy place, lol, I just want to run my hands through all my imaginary (for now) buttons! I know, I'm weird. Think of all the coolness I can do with the buttons and my future grandkids, sorting and counting and learning colors. :-D
Today he ate crackers and drank from a straw for speech! Its so exciting to see him eating! Luna the therapy dog came to visit again. She is so pretty. We talked to her handler and learned she was a rescue dog. Kayson also told his daddy to go away. lol I was sitting with him and let his right hand be free and he used to to take the restraint off his left! Such a smart boy! He also chewed up his aspirin for the nurse. Another step to remove that pesky tube! He ate a bit of pizza and tortilla with butter for lunch. Also he was getting super fidgety and we were trying to get him to communicate what he needed to us and we figured out he had to teeter, he did not want to go in his diaper so his daddy carried him to the potty and steadied him and he went in the potty!!! He also started things for fun. again, BOYS! LOL! We also had a visitor from church come and take us out for a bit while Marmie stayed with Kayson. It was nice to get to go to a new place for lunch and we found an antique store. I love walking through those and thinking what the stories of each item might be. I've also decided that I am going to start a button collection. I kept seeing all these buttons for sale there and it kinda made me a bit sad bc I love buttons (I don't know why) and I used to have a pretty cool although small collection and the kids (those precious little people God entrusted to my care) lost them all years ago. So I decided something this day! (This is not where we all say uh oh). At the church youth garage sale in the fall a very large (biggest one I've ever seen) mason jar was donated and I fell absolutely in love with it and bought it! This is going to be my super button jar! I am going to collect buttons starting as soon as I get some, lol and my grandchildren will have a button jar to enjoy when they come to grandma's (Lollie's) house. I got so excited at my decision in the store and Glenn was just laughing at me! He was like you're so silly and I was all like so I don't care! I'm going to have a button jar and this makes me happy so there! LOL Can you imagine, all those shapes and sizes and colors, my brain just goes into this sensory happy place, lol, I just want to run my hands through all my imaginary (for now) buttons! I know, I'm weird. Think of all the coolness I can do with the buttons and my future grandkids, sorting and counting and learning colors. :-D
Kayson Strong as an Eagle Day 24
Monday 2-12-18
He looks so cute in his new Chewy PJs from the Disney Store. Everyone likes them. lol. Speech fed him some pudding!!! Woohoo!! They put him on a soft diet. One step closer to real food and no tube! He told the floor doc Good Morning! It is so super exciting to hear him talking more and more everyday! His daddy stayed with him overnight and I drove myself to RMH. I haven't drove anywhere these last three weeks and I hate dallas traffic and parking garages! not just driving in the garages but just being in them. They are so creepy! So I get to the hospital and can't find a spot to park! I drove around for about 25 min before I called Glenn to come rescue me. He gets down there and still can't find a spot either, we ended up just using valet bc we were anxious to get back up to baby boy and not leave him alone too long. I get upstairs and he won't talk to me, I think he was mad at me for leaving. Glenn said he did ask for me once through the night. Then they say that bc his left eye was droopy this am they want to do an MRI just to check. so we have more waiting. This is such a roller coaster and the waiting is so hard but we were glad when he came back that he did not need any sedation. Later that evening we found out that the MRI was good so that was a huge relief. He also got to have music therapy, that is so neat! and he sang Jingle bells, batman smells for them! LOL, BOYS!!! He told me he was hungry so we ordered him some smashed bananas, he didn't like them. Then he fell sleep. We were kinda getting cabin fever so Glenn went down to the gift shop and bought two decks of cards and we played golf till he woke up from his nap. We tied! We sure love to play games.
He looks so cute in his new Chewy PJs from the Disney Store. Everyone likes them. lol. Speech fed him some pudding!!! Woohoo!! They put him on a soft diet. One step closer to real food and no tube! He told the floor doc Good Morning! It is so super exciting to hear him talking more and more everyday! His daddy stayed with him overnight and I drove myself to RMH. I haven't drove anywhere these last three weeks and I hate dallas traffic and parking garages! not just driving in the garages but just being in them. They are so creepy! So I get to the hospital and can't find a spot to park! I drove around for about 25 min before I called Glenn to come rescue me. He gets down there and still can't find a spot either, we ended up just using valet bc we were anxious to get back up to baby boy and not leave him alone too long. I get upstairs and he won't talk to me, I think he was mad at me for leaving. Glenn said he did ask for me once through the night. Then they say that bc his left eye was droopy this am they want to do an MRI just to check. so we have more waiting. This is such a roller coaster and the waiting is so hard but we were glad when he came back that he did not need any sedation. Later that evening we found out that the MRI was good so that was a huge relief. He also got to have music therapy, that is so neat! and he sang Jingle bells, batman smells for them! LOL, BOYS!!! He told me he was hungry so we ordered him some smashed bananas, he didn't like them. Then he fell sleep. We were kinda getting cabin fever so Glenn went down to the gift shop and bought two decks of cards and we played golf till he woke up from his nap. We tied! We sure love to play games.
Kayson Strong as an Eagle Day 23
Just laying here with my boy, feeling him breath. Concentrating on the rhythm of his breaths and feeling so grateful for this chance! Later as I'm sitting working on thank yous (I think) for the ICU nurses, I hear something outside the window and look out and it is sleeting and if you look real closely you can see tiny snow flurries. Glenn hooked our computer up to the TV and we got to watch some of our church service. That was neat. I miss everyone so so very much! We have such an amazing Jesus family! They have come alongside us and loved us so very completely. Everyone needs such a a wonderful Jesus family! Marmie came and visited and washed his haired brushed his teeth and brought him new clothes and I clipped his nails and he was all fresh and clean. :) When the head neuro doc came in to see how he was doing, Kayson told him to go away! The doc was soooo excited!! He did tell us that Kayson will be on aspirin long term if not for the rest of his life. He also has this chew stick thing from speech therapy to help him work on those muscles so I wanted to show his Marmie how he could chew. So I stuck it in ice bc they said the cold helps wake the mouth up and the stick is hollow, well when I let him chew, I heard a crunch! He got a piece of ice that got caught in the chew stick thing! He liked that! :) and he crunched and swallowed it! Victory! Then we had our first fun trip out of the room. We went down to see the trains. He seemed to like that! He also has been saying more and more. Said I love you! started laughing and sticking out his tongue! being silly again! Answered Whats your fav color? "blue" said kiss to me for a kiss without being prompted! Kirsten came to see him for just a little bit since she didn't get to come yesterday. Papaw brought her and she brought her art pieces so we got to see them! I am so proud of the beautiful young lady she is becoming. It is so exciting to watch her grow! Kayson also slept well through the night.
Sunday, February 18, 2018
Kayson Strong as an Eagle Day 22
Saturday 2-10-18
My daddy came and picked those of us there up at RMH, I'm so not used to everyone being so spread out! We like to keep everyone close! Then we drove through Mcdonalds for breakfast and took it up to the hospital, we can all eat together in the room now that we are out of ICU. Last night when the kids got there, Kayson and Kalani were seeing each other for the first time in three weeks bc she couldn't be on the ICU floor, she was so happy to see him and it sure sounded like she said, "Hi, Kayson"! Daddy stayed with Kayson while we took the other kids to rainforest cafe for lunch. We were NOT prepared for the cold!!! We were sent a prayer shawl and were super glad for it bc it covered Kalani on the way onto the mall! Sooooo COLD! There was an hour wait for the table so we walked the mall a bit. Bought Kalani some pants so her legs would be covered bc she only had bloomers and then she leaked all over those right as we got our table and had to be put in PJs that we found in her bag! Then she wasn't eating anything, just throwing it all on the floor, even the tomato! Till I gave her a piece of my hamburger and she took off the bread and chowed down on the meat! We let them choose something from the gift shop, Keegan was so excited to get a build a bear! I didn't know they had those in the Rainforest Cafe gift shop but they did. Also found a rubber snake for Kayson that I thought would be perfect to keep his hand occupied. He didn't put it down for like a whole day! Then we walked some more of the mall after. Found a sale at the Disney Store. Saw these guys selling these things called dragon balls that were candy froze with liquid nitrogen and would make you blow smoke. That just doesn't seem safe to me. We got dippin dots! When we were leaving it was starting to drizzle and if you looked real real close you could barely see little itty bitty snow flurries! Then it was time for my daddy and babies to head home. It is so hard to say goodbye. Kayson gave us a thumbs up though. I didn't realize just how long it takes for the brain to really wake up. Oh and he spoke to us! The Doc was saying not to expect it yet but he did! He said Mama and Dada and yes and no! Oh it was soooooooo special to hear his voice! Everything has been so iffy and so scary! But he's here and alive and knows us! He knows us!!!!!!!!
My daddy came and picked those of us there up at RMH, I'm so not used to everyone being so spread out! We like to keep everyone close! Then we drove through Mcdonalds for breakfast and took it up to the hospital, we can all eat together in the room now that we are out of ICU. Last night when the kids got there, Kayson and Kalani were seeing each other for the first time in three weeks bc she couldn't be on the ICU floor, she was so happy to see him and it sure sounded like she said, "Hi, Kayson"! Daddy stayed with Kayson while we took the other kids to rainforest cafe for lunch. We were NOT prepared for the cold!!! We were sent a prayer shawl and were super glad for it bc it covered Kalani on the way onto the mall! Sooooo COLD! There was an hour wait for the table so we walked the mall a bit. Bought Kalani some pants so her legs would be covered bc she only had bloomers and then she leaked all over those right as we got our table and had to be put in PJs that we found in her bag! Then she wasn't eating anything, just throwing it all on the floor, even the tomato! Till I gave her a piece of my hamburger and she took off the bread and chowed down on the meat! We let them choose something from the gift shop, Keegan was so excited to get a build a bear! I didn't know they had those in the Rainforest Cafe gift shop but they did. Also found a rubber snake for Kayson that I thought would be perfect to keep his hand occupied. He didn't put it down for like a whole day! Then we walked some more of the mall after. Found a sale at the Disney Store. Saw these guys selling these things called dragon balls that were candy froze with liquid nitrogen and would make you blow smoke. That just doesn't seem safe to me. We got dippin dots! When we were leaving it was starting to drizzle and if you looked real real close you could barely see little itty bitty snow flurries! Then it was time for my daddy and babies to head home. It is so hard to say goodbye. Kayson gave us a thumbs up though. I didn't realize just how long it takes for the brain to really wake up. Oh and he spoke to us! The Doc was saying not to expect it yet but he did! He said Mama and Dada and yes and no! Oh it was soooooooo special to hear his voice! Everything has been so iffy and so scary! But he's here and alive and knows us! He knows us!!!!!!!!
Kayson Strong as an Eagle Day 21
Friday 2-9-18
This child was up at 2 am watching guardians, AGAIN! lol
The pediatrician on the floor thinks his fits were withdrawals from the methadone. They are weaning it very slowly trying to prevent withdrawals. She could go back up on the dose but that would slow the wean that already takes a few weeks.
Massage therapy came in today, he really liked that! Fell asleep for her. How many therapies does this hospital have??? LOL It is so amazing all the things they do to make it a happy place.
He started laughing, oh what a precious sound! His daddy was tickling him! :) He also winked at us with both eyes (one at a time).
We got awesome shirts printed for our family outings with an eagle on them, kinda feels like we can take a bit of Kayson with us now.
He took a few supported steps for PT. They had to hold him up but he initiated the steps. He is supporting his trunk better though and moving his left arm a lot more.
Hid daddy covered him in all of his stuffed friends, turned on Disney music and he slept that way for a nap. His nurse laughed so hard when she walked in.
Papaw and the other kids (minus Kirsten who has an art competition) arrived. Keegan wanted to stay the night at the hospital with Kayson and daddy and the nurse said that would be ok! He was sooooooo excited.
I had Kalani, Chris and Cayden at RMH with me. Cayden flooded the toilet in our room and we had to clean that up! *eye roll* seriously?!? *sigh*
LOVE MY FAMILY!
This child was up at 2 am watching guardians, AGAIN! lol
The pediatrician on the floor thinks his fits were withdrawals from the methadone. They are weaning it very slowly trying to prevent withdrawals. She could go back up on the dose but that would slow the wean that already takes a few weeks.
Massage therapy came in today, he really liked that! Fell asleep for her. How many therapies does this hospital have??? LOL It is so amazing all the things they do to make it a happy place.
He started laughing, oh what a precious sound! His daddy was tickling him! :) He also winked at us with both eyes (one at a time).
We got awesome shirts printed for our family outings with an eagle on them, kinda feels like we can take a bit of Kayson with us now.
He took a few supported steps for PT. They had to hold him up but he initiated the steps. He is supporting his trunk better though and moving his left arm a lot more.
Hid daddy covered him in all of his stuffed friends, turned on Disney music and he slept that way for a nap. His nurse laughed so hard when she walked in.
Papaw and the other kids (minus Kirsten who has an art competition) arrived. Keegan wanted to stay the night at the hospital with Kayson and daddy and the nurse said that would be ok! He was sooooooo excited.
I had Kalani, Chris and Cayden at RMH with me. Cayden flooded the toilet in our room and we had to clean that up! *eye roll* seriously?!? *sigh*
LOVE MY FAMILY!
Monday, February 12, 2018
Kayson strong as an Eagle Days 19 and 20
Wednesday 2-7-18 and Thursday 2-8-18
He started moving his left arm!!!! Reached up slowly to scratch his face! Music therapy came again, he really seems to enjoy that! PT took him to the gym, they sat him (supported) in front of a big mirror and he wrote scribbles on it with a dry erase marker. They stood him up fully supporting him for a brief time. He's so worn out after PT. Marmie stayed the night with him so we could get some sleep and some laundry done. The night nurse washed his hair and massaged his head. He stuck his tongue at the doc. We also got him an iPad to help with hand-eye coordination and hopefully communication. He chewed on a chew stick on both sides for his speech therapist. He also threw a huge fit for like 30-40 min. nothing was calming him and he was kicking and fussing. I had to step out and cry. Then I couldn't stop. Its so hard. He did finally calm and slept that night but I stayed with him and didn't get sleep. My brain wouldn't quiet, so I prayed.
He started moving his left arm!!!! Reached up slowly to scratch his face! Music therapy came again, he really seems to enjoy that! PT took him to the gym, they sat him (supported) in front of a big mirror and he wrote scribbles on it with a dry erase marker. They stood him up fully supporting him for a brief time. He's so worn out after PT. Marmie stayed the night with him so we could get some sleep and some laundry done. The night nurse washed his hair and massaged his head. He stuck his tongue at the doc. We also got him an iPad to help with hand-eye coordination and hopefully communication. He chewed on a chew stick on both sides for his speech therapist. He also threw a huge fit for like 30-40 min. nothing was calming him and he was kicking and fussing. I had to step out and cry. Then I couldn't stop. Its so hard. He did finally calm and slept that night but I stayed with him and didn't get sleep. My brain wouldn't quiet, so I prayed.
Friday, February 9, 2018
Kayson Strong as an Eagle Day 18
Tuesday 2-6-18
This am Kayson smiled at the head of neuro surgery. We are so super extra beyond excited about his smiling!!!!!!!!!!! Can you tell??? LOL He kicked at a ball for PT. Then Luna, the therapy dog, came to visit! She got to lay in bed with him and he actually petted her! Then the boy pulled his feeding tube out AGAIN during his speech therapy! Oh, this boy and his tube! When the head neuro doc came in to check on him, the doc told my mom that he has never seen someone that has lost so much cerebellum and that Kayson's recovery is miraculous. These are some of the best neuro and neuro surgery teams in the US for pediatrics and they get patients from all over the country so it is saying a lot that they've never seen anyone quite like my boy before! *mindblown* It is hard to comprehend! The looks on peoples faces when we tell them our 7 yr old had a stroke! Its so crazy and we are living it and its been over two weeks and it still seems so surreal. My boy! My precious baby, that was walking and talking and perfectly healthy and happy and sooooooo sunshiny can't even hardly communicate with us right now. Don't get me wrong, I know he has a long ways to go and should fully recover these things, although there are moments I get so scared, and I am so completely grateful that he still has his life and that he has been blessed with the chance to regain all these things but it is hard. I miss him running up to me and saying, "Mama, hug!" out of the blue. I miss seeing him hug baby girl! One of my biggest joys of having a little little in the house has always been watching the older ones interact with them and form special bonds. Oh, Jesus, why my boy? Why my precious Kayson? What did I do wrong? WHY?????? Disclaimer: These are raw questions, they do not haunt me but they are thoughts every so often, I know I serve an almighty, all-knowing, powerful, mighty God and I do not mean any disrespect to Him but I believe He can handle my pain and my rawness. I have to believe He can handle my questions (no, I do not expect answers, nor do I believe this was a result of anyone's wrongdoing, save maybe Adam and Eve's, lol) bc if He couldn't handle my questions, how am I supposed to believe He can handle my boy's injury??? and I DO believe! If I had no belief I would have no hope and I could not live in that place!
This am Kayson smiled at the head of neuro surgery. We are so super extra beyond excited about his smiling!!!!!!!!!!! Can you tell??? LOL He kicked at a ball for PT. Then Luna, the therapy dog, came to visit! She got to lay in bed with him and he actually petted her! Then the boy pulled his feeding tube out AGAIN during his speech therapy! Oh, this boy and his tube! When the head neuro doc came in to check on him, the doc told my mom that he has never seen someone that has lost so much cerebellum and that Kayson's recovery is miraculous. These are some of the best neuro and neuro surgery teams in the US for pediatrics and they get patients from all over the country so it is saying a lot that they've never seen anyone quite like my boy before! *mindblown* It is hard to comprehend! The looks on peoples faces when we tell them our 7 yr old had a stroke! Its so crazy and we are living it and its been over two weeks and it still seems so surreal. My boy! My precious baby, that was walking and talking and perfectly healthy and happy and sooooooo sunshiny can't even hardly communicate with us right now. Don't get me wrong, I know he has a long ways to go and should fully recover these things, although there are moments I get so scared, and I am so completely grateful that he still has his life and that he has been blessed with the chance to regain all these things but it is hard. I miss him running up to me and saying, "Mama, hug!" out of the blue. I miss seeing him hug baby girl! One of my biggest joys of having a little little in the house has always been watching the older ones interact with them and form special bonds. Oh, Jesus, why my boy? Why my precious Kayson? What did I do wrong? WHY?????? Disclaimer: These are raw questions, they do not haunt me but they are thoughts every so often, I know I serve an almighty, all-knowing, powerful, mighty God and I do not mean any disrespect to Him but I believe He can handle my pain and my rawness. I have to believe He can handle my questions (no, I do not expect answers, nor do I believe this was a result of anyone's wrongdoing, save maybe Adam and Eve's, lol) bc if He couldn't handle my questions, how am I supposed to believe He can handle my boy's injury??? and I DO believe! If I had no belief I would have no hope and I could not live in that place!
Kayson Strong as an Eagle Day 17
Monday 2-5-18
When we arrived at the hospital this am, baby boy was watching Guardians of the Galaxy 2 and he was glued to it! We don't let the kids watch PG-13 till they are 13 but his nurse didn't realize it was and thought he would like it and it was on the hospital playlist so she turned it on for him. She felt bad and apologized more than once. We just laughed it off, its not too bad of a PG-13 anyway and it entertained him and some rules just don't apply in these situations. We felt bad that she felt bad, lol. They said he had another good night and slept. PT and OT came and they even stood him up (fully supported) for a few seconds. He put some rings on a post using his right hand. Speech came in and had a spoon getting cold in ice and got him to swallow once and he even held the spoon in his right hand and put it up to his mouth. He also tried to high five one of the neuro surgery docs but couldn't get his hand all the way up bc of the restraints he has to wear bc he's pulling his feeding tube out. The head neuro doc came by and said his recovery is miraculous! He also said it could take 1-3 months for Kayson's speech to return. The doc also asked how my crochet was coming along! So sweet of him to even think of it! The whole neuro team was in there and one of the other docs pointed out Kayson's flexibility bc his knee was resting on his chest. He's always been pretty flexible. He also started trying to wipe his own mouth, we have to watch him close bc he has figured out how to wiggle down to the restrained hand and try to reach that tube! OOoooo Also Music therapy came by for the first time. That was soooooooooo neat!!!! He help the mallet and played the little xylophone and pounded on the bongos and then dropped the mallet to pound the drums with his hand. It was so cool to see him so engaged! She was so sweet too! Then I needed a small break so I walked to the waiting room to eat a snacking I got so frustrated bc while I was in there trying to breath a bit, in walks this mom with a guy friend and they have two big suitcases and a motorized child's chair and they take up quite a bit of space and she's loud and then her friend goes and gets more stuff! Another wagon full. They had sooooo much stuff. They kinda walked in like they owned the whole place and no one else mattered. Then she gets on the phone and starts YELLING at whoever is on the other end. I was so stressed by the time I finished my snack. I started having panic attacks. It was crazy! I was so happy that when I got back to the room, they told us to get ready to move out of ICU! They came pretty quickly and moved us to a regular room. After we got there, he smiled at us for the time since his stroke! Melted my heart! I almost cried and of course I videoed it! He also waved at the doc on the floor! I stayed the night with him that night bc he was super restless and took forever to get to sleep but once he got to sleep, he slept through the night. If these posts start seeming more detailed, I started writing notes down. Maybe my brain is starting to work some again too, lol.
When we arrived at the hospital this am, baby boy was watching Guardians of the Galaxy 2 and he was glued to it! We don't let the kids watch PG-13 till they are 13 but his nurse didn't realize it was and thought he would like it and it was on the hospital playlist so she turned it on for him. She felt bad and apologized more than once. We just laughed it off, its not too bad of a PG-13 anyway and it entertained him and some rules just don't apply in these situations. We felt bad that she felt bad, lol. They said he had another good night and slept. PT and OT came and they even stood him up (fully supported) for a few seconds. He put some rings on a post using his right hand. Speech came in and had a spoon getting cold in ice and got him to swallow once and he even held the spoon in his right hand and put it up to his mouth. He also tried to high five one of the neuro surgery docs but couldn't get his hand all the way up bc of the restraints he has to wear bc he's pulling his feeding tube out. The head neuro doc came by and said his recovery is miraculous! He also said it could take 1-3 months for Kayson's speech to return. The doc also asked how my crochet was coming along! So sweet of him to even think of it! The whole neuro team was in there and one of the other docs pointed out Kayson's flexibility bc his knee was resting on his chest. He's always been pretty flexible. He also started trying to wipe his own mouth, we have to watch him close bc he has figured out how to wiggle down to the restrained hand and try to reach that tube! OOoooo Also Music therapy came by for the first time. That was soooooooooo neat!!!! He help the mallet and played the little xylophone and pounded on the bongos and then dropped the mallet to pound the drums with his hand. It was so cool to see him so engaged! She was so sweet too! Then I needed a small break so I walked to the waiting room to eat a snacking I got so frustrated bc while I was in there trying to breath a bit, in walks this mom with a guy friend and they have two big suitcases and a motorized child's chair and they take up quite a bit of space and she's loud and then her friend goes and gets more stuff! Another wagon full. They had sooooo much stuff. They kinda walked in like they owned the whole place and no one else mattered. Then she gets on the phone and starts YELLING at whoever is on the other end. I was so stressed by the time I finished my snack. I started having panic attacks. It was crazy! I was so happy that when I got back to the room, they told us to get ready to move out of ICU! They came pretty quickly and moved us to a regular room. After we got there, he smiled at us for the time since his stroke! Melted my heart! I almost cried and of course I videoed it! He also waved at the doc on the floor! I stayed the night with him that night bc he was super restless and took forever to get to sleep but once he got to sleep, he slept through the night. If these posts start seeming more detailed, I started writing notes down. Maybe my brain is starting to work some again too, lol.
Kayson Strong as an Eagle Day 16
Sunday 2-4-18
Kayson was awake when we arrived at the hospital. We were talking to him and he shook his head yes! That was so exciting! His nurse said he had a good night and he gave the neuro team two fingers on command. We started helping more with his care, I changed a diaper and Glenn replaced a lead on his chest for the monitors. They restarted feeds and are still monitoring his sodiums. When we got back from lunch his suction tube had been taken out. Speech and OT came worked with him. He reached for a ball and they had him in a supported sitting position. He is still not moving that left hand but he did squeeze my hand with the right. I showed him a TMNT toy someone brought him and asked if he wanted his daddy to open it so he could old the turtle and he shook his head yes! He's been pulling at the leads on his chest, touching his neck brace (he's been told he can't pull it but he can feel it), rubbing his mouth, pointed (or tried, hand eye coordination is off a bit) at one of his carebear games on my iPad. He also pulled out his feeding tube and threw a fit when they put it back in.
Kayson was awake when we arrived at the hospital. We were talking to him and he shook his head yes! That was so exciting! His nurse said he had a good night and he gave the neuro team two fingers on command. We started helping more with his care, I changed a diaper and Glenn replaced a lead on his chest for the monitors. They restarted feeds and are still monitoring his sodiums. When we got back from lunch his suction tube had been taken out. Speech and OT came worked with him. He reached for a ball and they had him in a supported sitting position. He is still not moving that left hand but he did squeeze my hand with the right. I showed him a TMNT toy someone brought him and asked if he wanted his daddy to open it so he could old the turtle and he shook his head yes! He's been pulling at the leads on his chest, touching his neck brace (he's been told he can't pull it but he can feel it), rubbing his mouth, pointed (or tried, hand eye coordination is off a bit) at one of his carebear games on my iPad. He also pulled out his feeding tube and threw a fit when they put it back in.
Sunday, February 4, 2018
Kayson Strong as an Eagle Day 15
Saturday 2-3-18
We met with daddy and kids for breakfast at the hospital. Then headed to the playroom bc Kalani can't see Kayson yet, babies aren't allowed on ICU floors and only four can be in his room at once. Then we came up to say hello to him in shifts. He seemed to recognize and acknowledge his siblings. He was much calmer! That was so great to see. Kalani really loves that playroom! Then Papaw stayed to sit with Kayson and we took the other kids to Dallas Zoo. That was really neat, we all love Zoos! It was hard not having Kayson with us, there was a hole in our family but it was so great to enjoy the others and love on them! It was good to get out of the four walls of his hospital room. It was a chilly day but the zoo was still packed! We rented a stroller for baby girl and then realized we didn't have a blanket for her, so one of our first stops ended up being the gift shop for a blanket and we thought oh no they don't have any and then I found three! She got a penguin blanket and someone must have bought the giraffe blanket sometime throughout the day bc when we went back before leaving it was gone. lol. Daddy would text with updates about Kayson. That was nice. When we went to have lunch, Glenn managed to snag an inside table so we got to warm up a bit. We took the kids on the monorail, that was actually really cool, when I managed to breath! Someone, anyone could've warned me about the height!!!! Kirsten looked it up, I have Acrophobia. lol. Most of it was just fine, we got to see the animals pretty close and go under a waterfall and see pretty scenery but there was a few places that the cars swayed forward ever so slightly and you could look straight down and Kirsten had to remind me to breath bc I seriously forgot too, lol and Chris was holding my hand! love my babies! Then it was almost closing time so we ended our trip with a carousel ride, baby girl's first! and a visit to the gift shop to let them pick a souvenir. I always enjoy seeing what they pick, gives me a glimpse into who they are. Kirsten picked a Texas bag that was sewed in India, Chris a glow in the dark glass penguin, Cayden a smashed penny book and then we had to stop at the smashed penny machine, Keegan got a small bongo drum from indonesia, hand carved and we got Kayson a lego book to put in his toy box thats waiting for him in Star (the Jeep) to get a normal room, Kalani already had her blanket, lol. It was a great day and we were soooooooo super exhausted, I think thats the best nights sleep I've had since we got here! We learned that Kayson's nurse now has two patients, that cool bc it means he's not so critical. When we got back to the hospital he had on a new neck collar. It's a more permanent one and yellow, kind looks like a transformer/bumblebee neck. Everyone told Kayson bye and they love him and then they headed home. We waited for shift change and then headed back to RMH. When we called to check in on him before going to bed, he was sleeping and that relieved us.
We met with daddy and kids for breakfast at the hospital. Then headed to the playroom bc Kalani can't see Kayson yet, babies aren't allowed on ICU floors and only four can be in his room at once. Then we came up to say hello to him in shifts. He seemed to recognize and acknowledge his siblings. He was much calmer! That was so great to see. Kalani really loves that playroom! Then Papaw stayed to sit with Kayson and we took the other kids to Dallas Zoo. That was really neat, we all love Zoos! It was hard not having Kayson with us, there was a hole in our family but it was so great to enjoy the others and love on them! It was good to get out of the four walls of his hospital room. It was a chilly day but the zoo was still packed! We rented a stroller for baby girl and then realized we didn't have a blanket for her, so one of our first stops ended up being the gift shop for a blanket and we thought oh no they don't have any and then I found three! She got a penguin blanket and someone must have bought the giraffe blanket sometime throughout the day bc when we went back before leaving it was gone. lol. Daddy would text with updates about Kayson. That was nice. When we went to have lunch, Glenn managed to snag an inside table so we got to warm up a bit. We took the kids on the monorail, that was actually really cool, when I managed to breath! Someone, anyone could've warned me about the height!!!! Kirsten looked it up, I have Acrophobia. lol. Most of it was just fine, we got to see the animals pretty close and go under a waterfall and see pretty scenery but there was a few places that the cars swayed forward ever so slightly and you could look straight down and Kirsten had to remind me to breath bc I seriously forgot too, lol and Chris was holding my hand! love my babies! Then it was almost closing time so we ended our trip with a carousel ride, baby girl's first! and a visit to the gift shop to let them pick a souvenir. I always enjoy seeing what they pick, gives me a glimpse into who they are. Kirsten picked a Texas bag that was sewed in India, Chris a glow in the dark glass penguin, Cayden a smashed penny book and then we had to stop at the smashed penny machine, Keegan got a small bongo drum from indonesia, hand carved and we got Kayson a lego book to put in his toy box thats waiting for him in Star (the Jeep) to get a normal room, Kalani already had her blanket, lol. It was a great day and we were soooooooo super exhausted, I think thats the best nights sleep I've had since we got here! We learned that Kayson's nurse now has two patients, that cool bc it means he's not so critical. When we got back to the hospital he had on a new neck collar. It's a more permanent one and yellow, kind looks like a transformer/bumblebee neck. Everyone told Kayson bye and they love him and then they headed home. We waited for shift change and then headed back to RMH. When we called to check in on him before going to bed, he was sleeping and that relieved us.
Kayson Strong as an Eagle Day 14
Friday 2-2-18
When we arrived at the hospital he was watching Guardians of the Galaxy, he had never seen that before and he was glued to that TV, lol. He was moving his legs a lot more! He was also in a breathing trial, the vent was not breathing for him, all his breaths were his own! We were excited about that. The Neuro team came in and said his brain pressures were looking good and he could get the drain out. They did that oh, about mid afternoon. Then in the early evening respiratory came in and said his vent could come out. That was so exciting for us but I think a bit upsetting for him. He got kinda super fussy, was sounding like he was trying to cry and agitated. He had also been having diarrhea all day and was irritated at that, as would I be! Then the other kids got here! This time when they kinda ran to me, I braced my feet a bit apart so I wouldn't get knocked over bc they almost knocked me over the weekend before! lol. Daddy videoed it this time. I love my babies so so so much! Kalani went right to her daddy but wouldn't come to me! She did give me kisses though before the night was over. We let everyone say hi to Kayson but it was very short visits bc he was so upset. He did stop fussing long enough to look at them when they came in though. I think he misses everyone too. Kirsten cried. Then we decided to head out bc he seemed more peaceful left alone and he needed to calm and rest. We got daddy and the two staying with him checked into their hotel and we stayed to have dinner, pizza delivered and watch a movie. Kirsten fell asleep. Kalani was into everything! Pulled the towels off a low shelf and hit her head on the closet door she wouldn't leave alone. Then sleep..............................
When we arrived at the hospital he was watching Guardians of the Galaxy, he had never seen that before and he was glued to that TV, lol. He was moving his legs a lot more! He was also in a breathing trial, the vent was not breathing for him, all his breaths were his own! We were excited about that. The Neuro team came in and said his brain pressures were looking good and he could get the drain out. They did that oh, about mid afternoon. Then in the early evening respiratory came in and said his vent could come out. That was so exciting for us but I think a bit upsetting for him. He got kinda super fussy, was sounding like he was trying to cry and agitated. He had also been having diarrhea all day and was irritated at that, as would I be! Then the other kids got here! This time when they kinda ran to me, I braced my feet a bit apart so I wouldn't get knocked over bc they almost knocked me over the weekend before! lol. Daddy videoed it this time. I love my babies so so so much! Kalani went right to her daddy but wouldn't come to me! She did give me kisses though before the night was over. We let everyone say hi to Kayson but it was very short visits bc he was so upset. He did stop fussing long enough to look at them when they came in though. I think he misses everyone too. Kirsten cried. Then we decided to head out bc he seemed more peaceful left alone and he needed to calm and rest. We got daddy and the two staying with him checked into their hotel and we stayed to have dinner, pizza delivered and watch a movie. Kirsten fell asleep. Kalani was into everything! Pulled the towels off a low shelf and hit her head on the closet door she wouldn't leave alone. Then sleep..............................
Friday, February 2, 2018
Kayson Strong as an Eagle Day 13
Thursday 2-1-18
Wow, Feb already! Today he was sleepier. It was also a long day of waiting for the MRI. They said it would be long one too. After they took him down for it, we went back to RMH for lunch. Its so nice that they provide meals. Its nice that we have been given gift cards to various places and the hospital cafeteria too. We don't have to worry about meals. It really helps! Then we went by Kohls but didn't find anything. We thought that might help pass the time better than worrying at the hospital. We got back just as he was getting done and back to his room. It was so good to see him. I know, we have been through so many MRIs now and they still worry me a bit. I don't know why. The doc came in shortly and told us that there was less swelling (what a relief!) and more spaces around his brain so they clamped his brain drain to see how he holds his pressure on his own. They had discussed the possibility of him needing a shunt and we are so glad that wasn't necessary. At dinner time we decided to head back to RMH for the night. We were hungry and we needed to get some laundry done. After dinner there were some little ponies in the big common room, they were so cute and neat to see. Then we started our laundry and took a movie to one of the family living areas. We had the space to ourselves and got to sit on the comfy couch and relax and I typed my blog posts bc I was soooooo behind. It was so nice and relaxing, if I could just make the guilt for not being at the hospital go away. I knew he was fine, if they needed us, we could be there so quickly and we needed to chill a bit but it is still so hard. It was a good movie though, we really think Kirsten especially will love it. It's called Miss Potter and is about Beatrix Potter's life. After the movie we went down to the family kitchen to get a snack. We sat and visited with some others families and shared stories. It was so nice to act slightly normal again. Then we went back to the room, got ready for bed and called to check in on baby boy. He was doing good. ZZzzzzzzz..............
Wow, Feb already! Today he was sleepier. It was also a long day of waiting for the MRI. They said it would be long one too. After they took him down for it, we went back to RMH for lunch. Its so nice that they provide meals. Its nice that we have been given gift cards to various places and the hospital cafeteria too. We don't have to worry about meals. It really helps! Then we went by Kohls but didn't find anything. We thought that might help pass the time better than worrying at the hospital. We got back just as he was getting done and back to his room. It was so good to see him. I know, we have been through so many MRIs now and they still worry me a bit. I don't know why. The doc came in shortly and told us that there was less swelling (what a relief!) and more spaces around his brain so they clamped his brain drain to see how he holds his pressure on his own. They had discussed the possibility of him needing a shunt and we are so glad that wasn't necessary. At dinner time we decided to head back to RMH for the night. We were hungry and we needed to get some laundry done. After dinner there were some little ponies in the big common room, they were so cute and neat to see. Then we started our laundry and took a movie to one of the family living areas. We had the space to ourselves and got to sit on the comfy couch and relax and I typed my blog posts bc I was soooooo behind. It was so nice and relaxing, if I could just make the guilt for not being at the hospital go away. I knew he was fine, if they needed us, we could be there so quickly and we needed to chill a bit but it is still so hard. It was a good movie though, we really think Kirsten especially will love it. It's called Miss Potter and is about Beatrix Potter's life. After the movie we went down to the family kitchen to get a snack. We sat and visited with some others families and shared stories. It was so nice to act slightly normal again. Then we went back to the room, got ready for bed and called to check in on baby boy. He was doing good. ZZzzzzzzz..............
Thursday, February 1, 2018
Kayson Strong as an Eagle Day 12
Wednesday 1-31-18
Today he was more awake. He was focusing his eyes on us, watching TV some. Moving his arms and legs a bit more. It was encouraging to see. They started weaning his vent down and he's breathing over it some. They did notice that the drain in his brain was leaking at his head, they said it can happen when swelling goes down. One of the neuro surgeons came and put a stitch in and it quit leaking. Then she came and talked to us. She stayed and spoke with us and answered my mom and my questions for about 30 min. We did mention the nurse and the doc was not happy and apologized on behalf of the hospital! We found out he had what's called a bow hunter's stroke. It is very rare. We tried to look it up some and couldn't find much about it at all. One sight did say "there are about 60 reported cases in literature." Also he got his catheter out. Oh and his fever has broke! He's getting some formula (pediasure) in a tube to his small intestine. We had a couple come and take us out to dinner. It was nice. We laughed. I don't think I have laughed that hard in weeks.
Today he was more awake. He was focusing his eyes on us, watching TV some. Moving his arms and legs a bit more. It was encouraging to see. They started weaning his vent down and he's breathing over it some. They did notice that the drain in his brain was leaking at his head, they said it can happen when swelling goes down. One of the neuro surgeons came and put a stitch in and it quit leaking. Then she came and talked to us. She stayed and spoke with us and answered my mom and my questions for about 30 min. We did mention the nurse and the doc was not happy and apologized on behalf of the hospital! We found out he had what's called a bow hunter's stroke. It is very rare. We tried to look it up some and couldn't find much about it at all. One sight did say "there are about 60 reported cases in literature." Also he got his catheter out. Oh and his fever has broke! He's getting some formula (pediasure) in a tube to his small intestine. We had a couple come and take us out to dinner. It was nice. We laughed. I don't think I have laughed that hard in weeks.
Kayson Strong as an Eagle Day 11
Tuesday 1-30-18
Oh my brain is sooooo tired. Sometimes I have trouble remembering the days or when what happened. We have started receiving mail at the hospital and RMH. It's so exciting to get and helps brighten our days. We have started a scrapbook and have a binder with an accordion file for all his mail and are hanging some on his whiteboard. I know the day will come will he will want to look through each card and drawing and have them all read to him. He has always loved cards (all my babies have). Tues evening was super hard, and hard to leave him. Everyone at the hospital has been so wonderful and kind and compassionate except the nurse that night. She said some things, I left the hospital almost in tears. I really think she prob thought she was being helpful, she really seemed to like Kayson and her job but I just wish she wouldn't have acted like she knew more than the doctors. I thought about not writing about it and I'm not sure I really want to repeat here what upset us so much, I will say one of the things she said was we couldn't touch him and she made it sound like she thought we needed to go all the way home, 2 hours from my baby! I decided to mention it though bc it is part of the story and to mention what happened next and give glory to God, I have to mention the bad. We've had several people checking on us everyday but that evening after getting back to RMH, I heard from my pastor's wife, our children's director and another close friend all within like an hour. Like God knew I needed that encouragement. It was like God speaking peace. When we called the hospital before bed, she was very thorough about how he was doing.
Oh my brain is sooooo tired. Sometimes I have trouble remembering the days or when what happened. We have started receiving mail at the hospital and RMH. It's so exciting to get and helps brighten our days. We have started a scrapbook and have a binder with an accordion file for all his mail and are hanging some on his whiteboard. I know the day will come will he will want to look through each card and drawing and have them all read to him. He has always loved cards (all my babies have). Tues evening was super hard, and hard to leave him. Everyone at the hospital has been so wonderful and kind and compassionate except the nurse that night. She said some things, I left the hospital almost in tears. I really think she prob thought she was being helpful, she really seemed to like Kayson and her job but I just wish she wouldn't have acted like she knew more than the doctors. I thought about not writing about it and I'm not sure I really want to repeat here what upset us so much, I will say one of the things she said was we couldn't touch him and she made it sound like she thought we needed to go all the way home, 2 hours from my baby! I decided to mention it though bc it is part of the story and to mention what happened next and give glory to God, I have to mention the bad. We've had several people checking on us everyday but that evening after getting back to RMH, I heard from my pastor's wife, our children's director and another close friend all within like an hour. Like God knew I needed that encouragement. It was like God speaking peace. When we called the hospital before bed, she was very thorough about how he was doing.
Kayson Strong as an Eagle Day 10
Monday 1-29-18
Got to the hospital and he was waking up a little more. He would get agitated when he coughed, seemed to hurt. We learned that he had two Pneumonias and was getting two different antibiotics and they started percussion on him (that's where they have this thing that actually looks like a small drum and it vibrates on his chest to loosen the mucus in his lungs) kinda like a massage, it really seemed to calm him. He also had a loose tooth that dental came and pulled. We have saved it so when he's more aware he can have the tooth fairy visit. I actually already bought the prize, a small lego set. Marmie (my mom) arrived today too so we could run some errands and he wouldn't be alone. When we left though Glenn decided I needed to rest more than errands so he left me at RMH and he ran the errands. It was hard to see him getting so agitated and he was throwing up some too. They were changing some meds up, trying to get off some of the stronger ones but needing to do others to minimize withdrawals. Its such a hard place to be and feels so helpless just to have to watch your baby lay there.
Got to the hospital and he was waking up a little more. He would get agitated when he coughed, seemed to hurt. We learned that he had two Pneumonias and was getting two different antibiotics and they started percussion on him (that's where they have this thing that actually looks like a small drum and it vibrates on his chest to loosen the mucus in his lungs) kinda like a massage, it really seemed to calm him. He also had a loose tooth that dental came and pulled. We have saved it so when he's more aware he can have the tooth fairy visit. I actually already bought the prize, a small lego set. Marmie (my mom) arrived today too so we could run some errands and he wouldn't be alone. When we left though Glenn decided I needed to rest more than errands so he left me at RMH and he ran the errands. It was hard to see him getting so agitated and he was throwing up some too. They were changing some meds up, trying to get off some of the stronger ones but needing to do others to minimize withdrawals. Its such a hard place to be and feels so helpless just to have to watch your baby lay there.
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