I'm pretty sure I could scream right now (if I wasn't afraid of waking Makenzie up from her nap). I am so irritated. Let me rewind a little bit . . .
Remember those "red eyes" Alexis has had this week? First I was thinking it was a sinus infection because of the way Lex was feeling, then I thought they were allergies. I have had allergies my whole life and my little sister has them very badly. So allergies aren't something new to me. Well, they have only gotten worse.
Yesterday Alexis had to come home from school again because of her eyes. When I picked her up she kept saying she just wanted to get to the car as quick as possible so she could shut her eyes. Again they were red and swollen. She would constantly blink just to avoid the light. When we got home I kept asking her a hundred questions trying to figure out what exactly this was. Before school (and for the past 2 days) I gave her allergy medicine and put allergy drops in her eyes. They did nothing. Alexis says her eyes aren't itchy, they actually hurt. Under her eyes, above her eyes (as far up as her eyebrows) and her eye lids hurt when you touch them. The eyes themselves are completely red and swollen.
At softball last night I was telling a friend of ours about Lex's eyes. She said her husband dealt with that same kind of thing for years. So I talked to him about it. He has iritis which is a painful inflammation of the iris of the eye. When I explained some of Alexis' symptoms to him he said that was exactly how he felt. As soon as I got home I researched iritis. Interestingly enough, there is a connection between iritis and lyme disease & rheumatoid arthritis. The amount of people with chronic lyme disease who end up with eye problems is outrageous. I knew I couldn't put this off any longer in case it was something more serious like that.
This morning Alexis' eyes looked and felt the same. She could barely open them. There was no way I could expect her to go to school. I called the doctor as soon as they opened and got an appointment for an hour later. When we got there the doctor asked Alexis how she felt. She explained it the best she could. Afterwards the doctor asked me if I noticed any yucky stuff in her eye - that would go along with pink eye. I haven't noticed it at all. That's also something I am very familiar with so I knew from the start this was just different. The doctor spent 2 seconds looking in her eyes. He said "Well, her eyes are bloodshot but since there isn't any yucky gunk in them then it is just allergies". Why though? Why is it just allergies? Because her eyes are red? Nothing else points to allergies. I started to get really irritated. I reminded him I've been giving her allergy medicine and that I've been putting allergy drops in her eyes and it has made no difference. I reminded him that she has lyme disease and questioned if it could be something more related to the lyme. He said no and that he was sure it's allergies. He gave us different eye drops to try and that's it.
I'm just not buying it. I really really don't think it is allergies. I feel so helpless. I am going to try these eye drops for a couple days and see if it makes a difference. If it doesn't I'm just going to take Alexis right to an opthamologist. I don't want to wait too long in case it is something more.
Alexis has to read a book and do a book report on it. How in the world is she supposed to read an entire book when she can't stop blinking. I'm not even exaggerating - she doesn't stop blinking. If any of you see her you will notice it right away. She hasn't been able to read much this week. Yesterday she was stressed out because some of her friends in her class already finished the book. She can barely read a page. Last night my mom came over to read with Lex and my mom ended up having to read to her. I know that's not good for Alexis but we have no other option right now. Alexis has a hard enough time when it comes to reading and comprehending things right now. This just adds one more challenge to the list for her.
This just makes me really frustrated. I wish Alexis was seeing a Lyme Disease Specialist at times like this because they would be more familiar with the connection between lyme disease and the effects it can have on the eye. It makes me crazy that all the doctors aren't on the same page when it comes to lyme disease. Why can't they be? Why can't they just figure this disease out, change the regulations that go along with it and get all these doctors up to speed.
On another note - if I am being too dramatic and it is just allergies doing this to my little girl then I will be very happy. I would much rather Alexis have allergies than find out that the lyme disease has done something else to her. I am so sick of different things happening to her.
If it's not one thing, it's another.
Thursday, May 24, 2012
Tuesday, May 22, 2012
A few steps forwards . . .
Although Alexis isn't feeling 100% yet, she is feeling much better. Yesterday morning she was feeling great and excited to go back to school for the first time since the PICC line was in. I wrapped her arm with gauze to protect it from getting dirty and getting infected.
About half way through the school day, the nurse called me. Alexis was feeling horrible. This time it was her head. She said her head hurt so much that the nurse had to turn off all the lights for her in the nurse's office. She laid there with her eyes shut until I got there. When I first saw Lex I thought she might have a sinus infection or something. Her eyes looked red and around them was all puffy and swollen. I asked Alexis if her face was sore or if it hurt when I touched it - she said "no". She kept saying her head was just killing her, worse than ever before.
When we got home Alexis laid right down on the couch. She asked me to make it as dark as I could in the living room. Luckily, it was a dark and gloomy day so it wasn't too hard to keep it dark for her. I asked her if she wanted me to turn the tv on for her but she said she couldn't watch it anyway because it would just hurt more.
I gave her some motrin and I had her drink lots of water. She spent the rest of the afternoon on the couch but with time she was feeling better. She was supposed to have a softball game but it got canceled because of the rain. It's weird how her games always get canceled on days that she is feeling really awful. Lucky for her though - she got to take it easy the rest of the night.
Dr S did say if Alexis' headaches didn't get any better that she would have to go see Dr T again - he is her neurologist. They will come up with a plan on getting those headaches better. I'm going to give it a little more time to get better since she just finished her medicine. If she keeps getting migraines like that though I will make an appointment with Dr T soon.
Today has been much better. Alexis has felt pretty good all day. Scottie and I got to go to Lex's school to have lunch with her. She didn't know Scottie was coming too so it was a nice surprise. We had a good time. I was glad I got to see Alexis half way through her day because I got to make sure she was feeling okay. She made it through the school day today and felt good all evening too. Unfortunately, it's still raining so tonight's softball game got canceled too. Alexis went with Scottie to watch him play in his softball game. I stayed home with our little girls so Scottie and Lex could have some Daddy - Daughter time. They had a blast.
When they got home tonight Alexis' eyes were really red and swollen again. Now I'm thinking it might even be allergies. Alexis hasn't ever had them but I've had them since I was about her age. Just adds to the list of things my girl has to deal with. I gave her some children's allegra allergy medicine and put some drops in her eyes to relieve the itchiness. Hopefully it doesn't get any worse than it was tonight.
Usually this rainy weather flares up Alexis' arthritis pains. The past two days it hasn't though. That could be a good sign. Now that I think about it - Alexis was having the joint pain just about every day before she started the IV antibiotics. It is no where near that often now. So although she has been dealing with a lot of other symptoms and problems - this could mean she is really recovering from the Lyme Disease. Please continue to pray for my girl!
About half way through the school day, the nurse called me. Alexis was feeling horrible. This time it was her head. She said her head hurt so much that the nurse had to turn off all the lights for her in the nurse's office. She laid there with her eyes shut until I got there. When I first saw Lex I thought she might have a sinus infection or something. Her eyes looked red and around them was all puffy and swollen. I asked Alexis if her face was sore or if it hurt when I touched it - she said "no". She kept saying her head was just killing her, worse than ever before.
When we got home Alexis laid right down on the couch. She asked me to make it as dark as I could in the living room. Luckily, it was a dark and gloomy day so it wasn't too hard to keep it dark for her. I asked her if she wanted me to turn the tv on for her but she said she couldn't watch it anyway because it would just hurt more.
I gave her some motrin and I had her drink lots of water. She spent the rest of the afternoon on the couch but with time she was feeling better. She was supposed to have a softball game but it got canceled because of the rain. It's weird how her games always get canceled on days that she is feeling really awful. Lucky for her though - she got to take it easy the rest of the night.
Dr S did say if Alexis' headaches didn't get any better that she would have to go see Dr T again - he is her neurologist. They will come up with a plan on getting those headaches better. I'm going to give it a little more time to get better since she just finished her medicine. If she keeps getting migraines like that though I will make an appointment with Dr T soon.
Today has been much better. Alexis has felt pretty good all day. Scottie and I got to go to Lex's school to have lunch with her. She didn't know Scottie was coming too so it was a nice surprise. We had a good time. I was glad I got to see Alexis half way through her day because I got to make sure she was feeling okay. She made it through the school day today and felt good all evening too. Unfortunately, it's still raining so tonight's softball game got canceled too. Alexis went with Scottie to watch him play in his softball game. I stayed home with our little girls so Scottie and Lex could have some Daddy - Daughter time. They had a blast.
When they got home tonight Alexis' eyes were really red and swollen again. Now I'm thinking it might even be allergies. Alexis hasn't ever had them but I've had them since I was about her age. Just adds to the list of things my girl has to deal with. I gave her some children's allegra allergy medicine and put some drops in her eyes to relieve the itchiness. Hopefully it doesn't get any worse than it was tonight.
Usually this rainy weather flares up Alexis' arthritis pains. The past two days it hasn't though. That could be a good sign. Now that I think about it - Alexis was having the joint pain just about every day before she started the IV antibiotics. It is no where near that often now. So although she has been dealing with a lot of other symptoms and problems - this could mean she is really recovering from the Lyme Disease. Please continue to pray for my girl!
Sunday, May 20, 2012
The Last Out
Before bed last night I put cream on Alexis' arm and wrapped it up in gauze pads. When we took it off this morning Lex's arm looked much better than it did yesterday. It was definitely starting to heal. I can't wait until Alexis doesn't have to worry about that arm at all anymore. We left it open all day to air out but before Lex's game tonight I put neosporin on it and wrapped it back up. She didn't like the way the hydro-cortisone made it feel last night. The neosporin seemed to work much better.
Alexis couldn't wait for this game tonight. It was the first game she would play since the PICC line has been taken out. It was really her first time playing in a while because of how crumby she's felt the past couple weeks. She was so excited that she put her uniform on 2 hours before we had to leave! As the game started, Alexis was still feeling good. It was such a sigh of relief. I just wanted her to be able to make it through this game and have fun doing it.
Alexis got up to bat for the first time. She looked so confident standing at that plate. I was so nervous for her but she didn't have a worry in the world. After a couple pitches, Alexis hit the ball. It was such an amazing hit. I couldn't be more proud of my little girl. You wouldn't have been able to tell she barely played at all the past 4 weeks. It was such a great way for her to get back into the game.
Alexis felt good throughout the rest of the game and her arm didn't bother her at all. I was so relieved. It was great to see her play, but even better to see her play an entire game. I was so proud of her. Unfortunately, the ending to this game wasn't the greatest for Alexis. Her team was losing 1-0. There were 2 outs and the bases were loaded. Alexis was up at bat. There were a couple ways this could go - but she struck out. She was so upset. I knew how disappointed she was going to be. No girl wants to make that last out for their team - but it happens to them all. Her teammates were even reminding her of times it happened to them. Alexis felt like she ruined it for her team though. I know she didn't ruin it and I kept telling her that. She didn't want to hear it. I also kept reminding her about that amazing hit she had but she was stuck on beating herself up.
When we got home all she wanted to do was go to sleep. When I unwrapped her arm I noticed it was still looking much better. I'm so glad it getting better so quickly. I think I'm going to wrap it up tomorrow for school just to protect it from getting dirty and all but she shouldn't have to do this for too much longer. Within minutes of laying down Alexis passed out. Although she thought the game was the worst thing in the world, I am still so excited and proud of her. So much good came out of that game. I'm pretty sure she will realize it tomorrow when she isn't so focused on being that last out. Plus, she has a game tomorrow and a couple more this week alone so she will be able to make up for it! =)
Alexis couldn't wait for this game tonight. It was the first game she would play since the PICC line has been taken out. It was really her first time playing in a while because of how crumby she's felt the past couple weeks. She was so excited that she put her uniform on 2 hours before we had to leave! As the game started, Alexis was still feeling good. It was such a sigh of relief. I just wanted her to be able to make it through this game and have fun doing it.
Alexis got up to bat for the first time. She looked so confident standing at that plate. I was so nervous for her but she didn't have a worry in the world. After a couple pitches, Alexis hit the ball. It was such an amazing hit. I couldn't be more proud of my little girl. You wouldn't have been able to tell she barely played at all the past 4 weeks. It was such a great way for her to get back into the game.
Alexis felt good throughout the rest of the game and her arm didn't bother her at all. I was so relieved. It was great to see her play, but even better to see her play an entire game. I was so proud of her. Unfortunately, the ending to this game wasn't the greatest for Alexis. Her team was losing 1-0. There were 2 outs and the bases were loaded. Alexis was up at bat. There were a couple ways this could go - but she struck out. She was so upset. I knew how disappointed she was going to be. No girl wants to make that last out for their team - but it happens to them all. Her teammates were even reminding her of times it happened to them. Alexis felt like she ruined it for her team though. I know she didn't ruin it and I kept telling her that. She didn't want to hear it. I also kept reminding her about that amazing hit she had but she was stuck on beating herself up.
When we got home all she wanted to do was go to sleep. When I unwrapped her arm I noticed it was still looking much better. I'm so glad it getting better so quickly. I think I'm going to wrap it up tomorrow for school just to protect it from getting dirty and all but she shouldn't have to do this for too much longer. Within minutes of laying down Alexis passed out. Although she thought the game was the worst thing in the world, I am still so excited and proud of her. So much good came out of that game. I'm pretty sure she will realize it tomorrow when she isn't so focused on being that last out. Plus, she has a game tomorrow and a couple more this week alone so she will be able to make up for it! =)
Saturday, May 19, 2012
And the PICC is out!
Today was the day - Alexis got her PICC line taken out!
Lex woke up feeling okay but was very nervous. Luckily, Scottie didn't have work this morning so he was home and my mom was able to come over for Alexis. I needed them here for her because I knew there was a pretty good chance that I would feel nauseous or light-headed. For some reason it happened every time Alexis got her dressing changed. I think I just get myself all worked up because I can't stand to see her in pain like that.
When the nurse got here Alexis got herself really worked up. She was crying and saying she didn't even want the nurse to take the dressing off. I don't blame her - she still has that rash and the blisters so she knew taking the dressing off was going to irritate it even more. Lex also said she didn't want the PICC line taken out. She was so scared. She thought it was going to hurt. She wouldn't even let the nurse go near her arm. She kept saying "I want to just keep it in forever". My mom had to hold Alexis and her arm so the nurse could get to it. At this point we really just wanted it over with. Alexis lost it when the dressing was coming off but within seconds of the dressing being off, the PICC line was out. Lex had no idea it was even out yet. We told her it was over with so she could calm down and she said "ohh, really?". That made me feel a little better because I knew that she was crying because she was scared and not because she was in pain.
Once it was out the nurse cleaned it up a lot and covered the actual site where the line went into Lex's arm. The rest of her arm looked pretty yucky still. Luckily, the rash and blisters didn't get worse than it was on Thursday night. I am so glad she can leave it open now so it can really start to heal.
Although the whole thing was pretty traumatizing to Alexis, it was nothing a big bowl of ice cream couldn't fix! This afternoon Lex's friend came over and then we all went to watch the older girl's softball game. Lex was running around and playing like any other kid. She was feeling okay and her arm wasn't bothering her too much. A couple times I caught her trying to scratch it so I knew it was a little itchy still.
When we got home I cleaned it up really well with alcohol swabs. Then I put hydro-cortisone cream on it to help with the itching. When she was ready to go to sleep I covered it with gauze pads to protect it for the night. Within a couple days her arm should be completely back to normal.
Alexis really loved not having to do the IV tonight. Now that she is finished we have to do a lot of waiting. We wait to make sure the side affects from the medication go away. We wait the two weeks to check her white blood cell count again. We wait to see how her lyme disease symptoms respond to the treatment. I am praying this has worked and that she never has to go through anything like this again. It's too much for a little girl to deal with.
I just want to thank everyone who has been there for us all throughout all of this. This would have been so much harder without the support from our family, friends, Lex's teachers and coaches, and from all of you who have taken the time out to pray for Alexis or read this blog. It's overwhelming how many people really care about my little girl. It means more to me than anyone could imagine.
So, THANK YOU ALL!
Now we close this chapter of Alexis' journey and start the next...
Lex woke up feeling okay but was very nervous. Luckily, Scottie didn't have work this morning so he was home and my mom was able to come over for Alexis. I needed them here for her because I knew there was a pretty good chance that I would feel nauseous or light-headed. For some reason it happened every time Alexis got her dressing changed. I think I just get myself all worked up because I can't stand to see her in pain like that.
When the nurse got here Alexis got herself really worked up. She was crying and saying she didn't even want the nurse to take the dressing off. I don't blame her - she still has that rash and the blisters so she knew taking the dressing off was going to irritate it even more. Lex also said she didn't want the PICC line taken out. She was so scared. She thought it was going to hurt. She wouldn't even let the nurse go near her arm. She kept saying "I want to just keep it in forever". My mom had to hold Alexis and her arm so the nurse could get to it. At this point we really just wanted it over with. Alexis lost it when the dressing was coming off but within seconds of the dressing being off, the PICC line was out. Lex had no idea it was even out yet. We told her it was over with so she could calm down and she said "ohh, really?". That made me feel a little better because I knew that she was crying because she was scared and not because she was in pain.
Once it was out the nurse cleaned it up a lot and covered the actual site where the line went into Lex's arm. The rest of her arm looked pretty yucky still. Luckily, the rash and blisters didn't get worse than it was on Thursday night. I am so glad she can leave it open now so it can really start to heal.
Although the whole thing was pretty traumatizing to Alexis, it was nothing a big bowl of ice cream couldn't fix! This afternoon Lex's friend came over and then we all went to watch the older girl's softball game. Lex was running around and playing like any other kid. She was feeling okay and her arm wasn't bothering her too much. A couple times I caught her trying to scratch it so I knew it was a little itchy still.
When we got home I cleaned it up really well with alcohol swabs. Then I put hydro-cortisone cream on it to help with the itching. When she was ready to go to sleep I covered it with gauze pads to protect it for the night. Within a couple days her arm should be completely back to normal.
Alexis really loved not having to do the IV tonight. Now that she is finished we have to do a lot of waiting. We wait to make sure the side affects from the medication go away. We wait the two weeks to check her white blood cell count again. We wait to see how her lyme disease symptoms respond to the treatment. I am praying this has worked and that she never has to go through anything like this again. It's too much for a little girl to deal with.
I just want to thank everyone who has been there for us all throughout all of this. This would have been so much harder without the support from our family, friends, Lex's teachers and coaches, and from all of you who have taken the time out to pray for Alexis or read this blog. It's overwhelming how many people really care about my little girl. It means more to me than anyone could imagine.
So, THANK YOU ALL!
Now we close this chapter of Alexis' journey and start the next...
Friday, May 18, 2012
"All for you, Lexi!"
Today Alexis felt pretty good all morning. She went to school and couldn't wait for us to come see her sing at her Spring Concert.
While Alexis was at school, Dr S called us and said he had Lex's lab results from this week. Her white blood cell count dropped dramatically in just a week. He thinks (and hopes) the antibiotics caused it to happen but there's no way to know right now. He wants to test her again once she has been off the antibiotics for 2 weeks. In the meantime, Dr S told us to be very careful with her because she could be more prone to getting sick right now. So we are keeping an extra close eye on her. He also said that as she comes off of this medication her body is going to go through a lot of changes. This could also make her feel crumby.
This afternoon Scottie, Kaelynn, Makenzie and I headed over to Lex's school for her concert. Alexis looked like she was having so much fun. She smiled at me the entire time. I couldn't wait to hear her solo! Before the song starts the soloists are supposed to walk up on stage by the microphones. A couple songs into it I knew it was Lex's song because I had a copy of the program. There were four girls with solos for this song, so all four girl were supposed to walk up on the stage right before the song starts. I saw the other three girls go up, but Alexis didn't move. I was a little confused. Was she not feeling well? Was she too nervous? Did she ask the music teacher if she could not do it? After a couple minutes of complete silence, her music teacher prompted her to go up on the stage. Alexis forgot. She completely forgot to go up there. Most parents might think to themselves - "Ahh, kids forget everything - it's no big deal". Not my Alexis though. She doesn't forget things like that. She is a cheerleader - a very good cheerleader. She has always been so on top of knowing where she has to be and when. She knows to look out for those certain ques and things like that. It was very out of character for Alexis to just forget to go up on stage. Anyone who really knows Alexis knows what I mean. So while others were watching and not thinking of it - I felt so sad to see that the Lyme Disease has affected her in one more way. The neurological lyme disease has taken over my daughter's life and it's so frustrating. I feel like Alexis is changing into a completely different little girl.
Aside from forgetting to go up on stage, Alexis did an amazing job. The concert was beautiful and a lot of fun. We took Lex out of school after the concert because the day was basically over with anyways. Lex came home and rested before her softball game. She had been looking forward to this game all week. She knew she was having a good week and really felt she would be able to play. When we got to the field I wrapped up Alexis' arm and she started throwing the ball with one of her closest friends and teammate. She was feeling great and so excited to play.
About a half hour before the game was supposed to start Lex came walking over to the side where I was sitting. She had a scared look on her face so I immediately asked her what was wrong. She was holding her chest and saying she couldn't breathe. I told her to stop walking and just sit as I ran over to her. Luckily, this softball team is more of a family. I didn't even hesitate to leave Makenzie and Kaelynn while I ran over to Alexis because I knew the other parents would help me with them - that's exactly what they did.
Alexis was very short of breath and said it hurt when she would breathe in. She doesn't have asthma and this has never happened before. I didn't know what to make of it all and I honestly didn't know what to do. When this started she wasn't running around or doing much of anything. She was standing in a line waiting for her turn to catch the ball. It was so weird that this came out of no where. As we sat there together the pains in her chest would come and go, and out of no where she would become short of breath again. I was getting scared and I only gave it minutes to get better before I was going to take her to the emergency room.
The game was about to start so there was no way Alexis could play. I ended up taking her out of the dugout and bringing her over by me and the other parents to sit and relax. The pains in her chest were lightening up until they finally went away completely. Again, this whole thing probably lasted about 20 minutes but it really did feel like a lifetime. I hate seeing her under any kind of stress. Lex ended up not playing the whole game. Even after she felt better she didn't want to play because she was afraid the pains would come back again. That was perfectly fine with me because I was scared too.
In the beginning of the game and in between each inning the girls all stand together in a circle while Coach Mike talks to them. When he is done the girls always say "One, Two, Three - Angels! Angels! Angels!" During this game, the girls yelled "One, Two, Three - Angels! Angels! Angels! All For You, Lexi!!!". When I heard it the first time I wasn't sure I heard them right. Then when they did it a second time I knew that's what they were saying. It completely melted my heart. Not only do we have such a great support system as a whole, but Alexis has an amazing support system within her own peers. She is one lucky little girl.
Throughout the game and the rest of the night the chest pains never came back. Thank God. I wasn't sure what to think of it. I'm still not sure what to think of it. I will be very happy if that never happens again but I am going to continue to keep an extra close eye on her.
We gave Alexis her very last dose of intravenous Rocephin. When her IV beeped, telling us it was done, Alexis started yelling and cheering! It was over with. After 28 days of sitting there every night for 40 minutes while she received her medicine, it was finally over with. To me the 4 weeks went by really fast but I don't think Alexis would say the same. It was a rough 4 weeks for her but she did it. I couldn't be more proud of her. The way she has handled all of this is simply amazing.
In the morning Alexis' nurse will be coming to our house to take out the PICC line. It can't come soon enough!
While Alexis was at school, Dr S called us and said he had Lex's lab results from this week. Her white blood cell count dropped dramatically in just a week. He thinks (and hopes) the antibiotics caused it to happen but there's no way to know right now. He wants to test her again once she has been off the antibiotics for 2 weeks. In the meantime, Dr S told us to be very careful with her because she could be more prone to getting sick right now. So we are keeping an extra close eye on her. He also said that as she comes off of this medication her body is going to go through a lot of changes. This could also make her feel crumby.
This afternoon Scottie, Kaelynn, Makenzie and I headed over to Lex's school for her concert. Alexis looked like she was having so much fun. She smiled at me the entire time. I couldn't wait to hear her solo! Before the song starts the soloists are supposed to walk up on stage by the microphones. A couple songs into it I knew it was Lex's song because I had a copy of the program. There were four girls with solos for this song, so all four girl were supposed to walk up on the stage right before the song starts. I saw the other three girls go up, but Alexis didn't move. I was a little confused. Was she not feeling well? Was she too nervous? Did she ask the music teacher if she could not do it? After a couple minutes of complete silence, her music teacher prompted her to go up on the stage. Alexis forgot. She completely forgot to go up there. Most parents might think to themselves - "Ahh, kids forget everything - it's no big deal". Not my Alexis though. She doesn't forget things like that. She is a cheerleader - a very good cheerleader. She has always been so on top of knowing where she has to be and when. She knows to look out for those certain ques and things like that. It was very out of character for Alexis to just forget to go up on stage. Anyone who really knows Alexis knows what I mean. So while others were watching and not thinking of it - I felt so sad to see that the Lyme Disease has affected her in one more way. The neurological lyme disease has taken over my daughter's life and it's so frustrating. I feel like Alexis is changing into a completely different little girl.
Aside from forgetting to go up on stage, Alexis did an amazing job. The concert was beautiful and a lot of fun. We took Lex out of school after the concert because the day was basically over with anyways. Lex came home and rested before her softball game. She had been looking forward to this game all week. She knew she was having a good week and really felt she would be able to play. When we got to the field I wrapped up Alexis' arm and she started throwing the ball with one of her closest friends and teammate. She was feeling great and so excited to play.
About a half hour before the game was supposed to start Lex came walking over to the side where I was sitting. She had a scared look on her face so I immediately asked her what was wrong. She was holding her chest and saying she couldn't breathe. I told her to stop walking and just sit as I ran over to her. Luckily, this softball team is more of a family. I didn't even hesitate to leave Makenzie and Kaelynn while I ran over to Alexis because I knew the other parents would help me with them - that's exactly what they did.
Alexis was very short of breath and said it hurt when she would breathe in. She doesn't have asthma and this has never happened before. I didn't know what to make of it all and I honestly didn't know what to do. When this started she wasn't running around or doing much of anything. She was standing in a line waiting for her turn to catch the ball. It was so weird that this came out of no where. As we sat there together the pains in her chest would come and go, and out of no where she would become short of breath again. I was getting scared and I only gave it minutes to get better before I was going to take her to the emergency room.
The game was about to start so there was no way Alexis could play. I ended up taking her out of the dugout and bringing her over by me and the other parents to sit and relax. The pains in her chest were lightening up until they finally went away completely. Again, this whole thing probably lasted about 20 minutes but it really did feel like a lifetime. I hate seeing her under any kind of stress. Lex ended up not playing the whole game. Even after she felt better she didn't want to play because she was afraid the pains would come back again. That was perfectly fine with me because I was scared too.
In the beginning of the game and in between each inning the girls all stand together in a circle while Coach Mike talks to them. When he is done the girls always say "One, Two, Three - Angels! Angels! Angels!" During this game, the girls yelled "One, Two, Three - Angels! Angels! Angels! All For You, Lexi!!!". When I heard it the first time I wasn't sure I heard them right. Then when they did it a second time I knew that's what they were saying. It completely melted my heart. Not only do we have such a great support system as a whole, but Alexis has an amazing support system within her own peers. She is one lucky little girl.
Throughout the game and the rest of the night the chest pains never came back. Thank God. I wasn't sure what to think of it. I'm still not sure what to think of it. I will be very happy if that never happens again but I am going to continue to keep an extra close eye on her.
We gave Alexis her very last dose of intravenous Rocephin. When her IV beeped, telling us it was done, Alexis started yelling and cheering! It was over with. After 28 days of sitting there every night for 40 minutes while she received her medicine, it was finally over with. To me the 4 weeks went by really fast but I don't think Alexis would say the same. It was a rough 4 weeks for her but she did it. I couldn't be more proud of her. The way she has handled all of this is simply amazing.
In the morning Alexis' nurse will be coming to our house to take out the PICC line. It can't come soon enough!
Thursday, May 17, 2012
Reaction
Alexis has made it through 3 full school days in a row. Not only has she made it through the school days, but she is feeling so much better than she was last week. She still gets the stomach pains, but they come and go again (as opposed to just staying all day and night). She finally finished making up the testing that she missed last week and all the rest of the work that she missed. She also got to play at softball practice tonight. Towards the end she started getting some stomach pains but after resting for a few minutes she was right back out there finishing up practice. I am so proud of her. Nothing is going to stop this little girl. =)
Unfortunately, it's not all good news tonight. Remember those bumps on Lex's arm by the PICC line cover? Well, they got worse. Tonight when I took her cover off to start her IV, I noticed that there were bumps under the PICC line's dressing. In the bottom corner there was a little area that wasn't sticking anymore so I lifted it up a tiny bit and I saw that they were blisters under there. They were really red, big (bigger than the 'little bumps' that I noticed Tuesday night) and I just didn't like the way they look. Immediately I called my mom - like I do any time I question anything in life. She said she would come over and look at it. At the same time she called my aunt who is a nurse. She was going to head over too since she has more experience and knowledge in this than my mom and me. They felt it was some kind of reaction but they weren't sure if it would be best to keep the dressing on or change it. So we tried to call Alexis' nurse. I wasn't able to get in touch with her so I talked to the nurse who was on-call tonight. She said it was hard to say what we should do without seeing Lex's arm so she wanted to come out to our house.
When the nurse got here she felt it was a reaction to the dressing that was just put on. Lex's arm was a little swollen, red, very itchy with the bumps and blisters on it. The nurse decided to take this dressing off and put on a different kind of dressing. Alexis hates having the dressings taken off to begin with - having a bunch of blisters under the "taped-on dressing" made it a hundred times worse. The tape ripped open the blisters. When it all was taken off I could see her whole arm. It looked awful - so much worse than I originally thought. Although Alexis was in a lot of pain from having the dressing changed, I was glad I didn't put this off until tomorrow because I can't imagine how many more blisters there would have been under there. Once it all was off the nurse cleaned the area really well and then put a new dressing on it. Although this one is different, it's still on all those blisters. So when Alexis has to get this taken off on Saturday it's going to do the same thing. I wish she could just leave it open and let it air out.
Tomorrow (Friday) night I will be giving Alexis her last dose of Rocephin through the PICC line. Her nurse is scheduled to come Saturday morning to have the line taken out. The nurse tonight told me if this reaction gets any worse tomorrow to call the doctor and see if we can have the PICC line taken out tomorrow instead of on Saturday. Either way it's so close. I can't wait for this all to be over with. This is too much for any 9 year old to be going through.
Alexis always wears a cover over the PICC line. I felt so bad putting anything on it tonight - knowing how itchy and irritated her arm is. Luckily I still had a cover that the hospital gave me when the PICC line was first put in. This one is like netting so it's open and a lot of air can get through. I put that one on her for tonight and I might just let her wear that to school tomorrow too. I feel that it doesn't protect her PICC line as well but it does hold everything in place like it needs to.
Tomorrow Alexis has a concert at her school. She is really looking forward to it - she even has a solo! I am praying she feels well enough to make it through the day again and that her arm isn't bothering her too much. I want her to just be able to enjoy herself like the rest of the kids - without having to worry about all these other extra things.
Things with the PICC line itself have gone so smoothly this whole time - It's just our luck that she would have a bad reaction the last week of her treatment.
Unfortunately, it's not all good news tonight. Remember those bumps on Lex's arm by the PICC line cover? Well, they got worse. Tonight when I took her cover off to start her IV, I noticed that there were bumps under the PICC line's dressing. In the bottom corner there was a little area that wasn't sticking anymore so I lifted it up a tiny bit and I saw that they were blisters under there. They were really red, big (bigger than the 'little bumps' that I noticed Tuesday night) and I just didn't like the way they look. Immediately I called my mom - like I do any time I question anything in life. She said she would come over and look at it. At the same time she called my aunt who is a nurse. She was going to head over too since she has more experience and knowledge in this than my mom and me. They felt it was some kind of reaction but they weren't sure if it would be best to keep the dressing on or change it. So we tried to call Alexis' nurse. I wasn't able to get in touch with her so I talked to the nurse who was on-call tonight. She said it was hard to say what we should do without seeing Lex's arm so she wanted to come out to our house.
When the nurse got here she felt it was a reaction to the dressing that was just put on. Lex's arm was a little swollen, red, very itchy with the bumps and blisters on it. The nurse decided to take this dressing off and put on a different kind of dressing. Alexis hates having the dressings taken off to begin with - having a bunch of blisters under the "taped-on dressing" made it a hundred times worse. The tape ripped open the blisters. When it all was taken off I could see her whole arm. It looked awful - so much worse than I originally thought. Although Alexis was in a lot of pain from having the dressing changed, I was glad I didn't put this off until tomorrow because I can't imagine how many more blisters there would have been under there. Once it all was off the nurse cleaned the area really well and then put a new dressing on it. Although this one is different, it's still on all those blisters. So when Alexis has to get this taken off on Saturday it's going to do the same thing. I wish she could just leave it open and let it air out.
Tomorrow (Friday) night I will be giving Alexis her last dose of Rocephin through the PICC line. Her nurse is scheduled to come Saturday morning to have the line taken out. The nurse tonight told me if this reaction gets any worse tomorrow to call the doctor and see if we can have the PICC line taken out tomorrow instead of on Saturday. Either way it's so close. I can't wait for this all to be over with. This is too much for any 9 year old to be going through.
Alexis always wears a cover over the PICC line. I felt so bad putting anything on it tonight - knowing how itchy and irritated her arm is. Luckily I still had a cover that the hospital gave me when the PICC line was first put in. This one is like netting so it's open and a lot of air can get through. I put that one on her for tonight and I might just let her wear that to school tomorrow too. I feel that it doesn't protect her PICC line as well but it does hold everything in place like it needs to.
Tomorrow Alexis has a concert at her school. She is really looking forward to it - she even has a solo! I am praying she feels well enough to make it through the day again and that her arm isn't bothering her too much. I want her to just be able to enjoy herself like the rest of the kids - without having to worry about all these other extra things.
Things with the PICC line itself have gone so smoothly this whole time - It's just our luck that she would have a bad reaction the last week of her treatment.
Tuesday, May 15, 2012
Finally!
Finally! Alexis had a pretty good day today. It wasn't perfect, but good enough for all of us.
The nurse came this morning, like she has every Tuesday morning since the PICC line was put in. She had to do Lex's blood work and change the dressing on her PICC line. For those who haven't been reading my posts - Alexis doesn't usually do well with this. She gets very nauseous and light-headed. Every Tuesday since the PICC line was put in she had to stay home from school. This morning was different. Before the nurse even got to our house Alexis was feeling dizzy and light-headed. I think she was just getting herself really worked up because she knew what was coming. By the time the nurse got here Lex was back to feeling okay. Alexis sat there so calmly. She barely made a peep when the old dressing was being pulled off of her - one of her least favorite things to sit through. She stayed calm, got every thing done and was wanting to go to school. I felt such a sigh of relief. She is finally getting used to the whole thing and this is the last Tuesday she will have to go through all of that - go figure.
I brought Alexis to school this morning. She had to do testing this morning to make up one of the tests she missed last week. Her teacher told me they will work around her schedule and how she is feeling. I'm so glad. Our main goal was for Alexis to make it through testing this morning. I told her I would be home all day with my phone by my side in case she needed to come home. Usually the school calls for me to come get her at about 11:00am - so from 11:00 on I didn't put my phone down. I waited for that phone to ring. Soon it was 1:00pm and the phone still didn't ring. I was shocked, happy and worried all mixed into one. I hate being away from her for so long but I do trust that she will tell her teacher if she does start feeling really crumby. Before I knew it, it was 3:00pm and almost time for me to head over to her school to pick her up. She made it through the day - the entire school day. I'm so happy for her. I know how bad she's been wanting to stay all day. She has been missing out on a lot. When I picked Alexis up this afternoon she looked good and said she felt okay. She said there were a couple times throughout the day when she wasn't feeling too good but it never got bad enough to go to the nurse. She was so excited to make it through the whole day - especially since our goal was for to only stay a couple hours in the morning.
This afternoon my sister and nephew were over hanging out with us. It was so nice seeing Alexis play with her little cousin and little sister like an average kid should. The last couple times my nephew was over Lex was stuck laying on the couch in pain. I was finally able to see her smile and have fun. She needed that. I even let her take a break from her homework to just play because she was feeling so good.
Unfortunately, Alexis' softball practice was canceled tonight because of the rain. Lex said "Ohh man, I was so ready to play today". Hopefully these good days keep coming.
Tonight after her IV was finished I was putting the cover back onto her arm and I noticed there were bumps on her arm near the PICC line dressing. When I looked closer I noticed there are a lot of them, they are red and big. It's definitely a rash and it wasn't there this morning. I looked all over the body to see if they were anywhere else but they weren't. She doesn't have a fever or feel yucky at all. I'm hoping it's just a heat rash or something little. I took pictures of it and I'll check it again in the morning to see if there's any changes. Let's pray it was nothing major and gone by the morning.
Alexis is now sleeping and we can officially say it was a GOOD DAY! I'm so relieved. My mom always calls after work to see how Alexis' day is going. It was so nice to finally be able to say she stayed in school ALL day and has been feeling pretty good all day. Alexis needed this. I needed this. Scottie needed this. My mom needed this. We all were getting a little overwhelmed with the amount of bad days Alexis was having.
The nurse came this morning, like she has every Tuesday morning since the PICC line was put in. She had to do Lex's blood work and change the dressing on her PICC line. For those who haven't been reading my posts - Alexis doesn't usually do well with this. She gets very nauseous and light-headed. Every Tuesday since the PICC line was put in she had to stay home from school. This morning was different. Before the nurse even got to our house Alexis was feeling dizzy and light-headed. I think she was just getting herself really worked up because she knew what was coming. By the time the nurse got here Lex was back to feeling okay. Alexis sat there so calmly. She barely made a peep when the old dressing was being pulled off of her - one of her least favorite things to sit through. She stayed calm, got every thing done and was wanting to go to school. I felt such a sigh of relief. She is finally getting used to the whole thing and this is the last Tuesday she will have to go through all of that - go figure.
I brought Alexis to school this morning. She had to do testing this morning to make up one of the tests she missed last week. Her teacher told me they will work around her schedule and how she is feeling. I'm so glad. Our main goal was for Alexis to make it through testing this morning. I told her I would be home all day with my phone by my side in case she needed to come home. Usually the school calls for me to come get her at about 11:00am - so from 11:00 on I didn't put my phone down. I waited for that phone to ring. Soon it was 1:00pm and the phone still didn't ring. I was shocked, happy and worried all mixed into one. I hate being away from her for so long but I do trust that she will tell her teacher if she does start feeling really crumby. Before I knew it, it was 3:00pm and almost time for me to head over to her school to pick her up. She made it through the day - the entire school day. I'm so happy for her. I know how bad she's been wanting to stay all day. She has been missing out on a lot. When I picked Alexis up this afternoon she looked good and said she felt okay. She said there were a couple times throughout the day when she wasn't feeling too good but it never got bad enough to go to the nurse. She was so excited to make it through the whole day - especially since our goal was for to only stay a couple hours in the morning.
This afternoon my sister and nephew were over hanging out with us. It was so nice seeing Alexis play with her little cousin and little sister like an average kid should. The last couple times my nephew was over Lex was stuck laying on the couch in pain. I was finally able to see her smile and have fun. She needed that. I even let her take a break from her homework to just play because she was feeling so good.
Unfortunately, Alexis' softball practice was canceled tonight because of the rain. Lex said "Ohh man, I was so ready to play today". Hopefully these good days keep coming.
Tonight after her IV was finished I was putting the cover back onto her arm and I noticed there were bumps on her arm near the PICC line dressing. When I looked closer I noticed there are a lot of them, they are red and big. It's definitely a rash and it wasn't there this morning. I looked all over the body to see if they were anywhere else but they weren't. She doesn't have a fever or feel yucky at all. I'm hoping it's just a heat rash or something little. I took pictures of it and I'll check it again in the morning to see if there's any changes. Let's pray it was nothing major and gone by the morning.
Alexis is now sleeping and we can officially say it was a GOOD DAY! I'm so relieved. My mom always calls after work to see how Alexis' day is going. It was so nice to finally be able to say she stayed in school ALL day and has been feeling pretty good all day. Alexis needed this. I needed this. Scottie needed this. My mom needed this. We all were getting a little overwhelmed with the amount of bad days Alexis was having.
Subscribe to:
Posts (Atom)