Yesterday was such a great day. I loved seeing Kyara so comfortable and NOT upset. Unfortunately, the baclofen wore off. It is very frustrating to see something work so well, then not be able to give her the same relief the next day. Since yesterday was a trial, we now have to wait for the neurosurgeons t schedule her for the surgery to put in the pump. It is looking like it won't be until NEXT WEEK! Oh, come on! She NEEDS the pump and the medication... NOW!!!
Today was a very difficult day, especially after comparing it to yesterday. Kyara has cried and moaned all day. She is not arching off the bed, but she is not comfortable either. I took her outside for a while after therapy, and she was not happy there, either. BOO :( I am hoping she is going to rest tonight, though. She needs it.
So now for the good: She is working hard in therapy. She is still not holding her head up much (I have seen her do it better in the past), but she IS helping more with rolling over. This is exciting news, I pray she gets it down. She has difficulty moving her whole body over because she is still very weak. But, Monica, the PT, is really encouraging. She said Kyara is doing all the right movements to roll over. She is only helping with shift the weight. She only helps when she feels Kyara trying. I worked with her a little this afternoon in her bed, and I was shocked by how much of the rolling she really did. Especially once she got started. She bends her knees, hips, and torso to roll. She also turns her head and shifts her shoulders to roll. This is all GREAT stuff! Kyara also focused on some pictures I brought in today. I held a picture of her and Skylar up, and she shifted her gaze as I moved it from one side to the other. She is still a little delayed on shifting her gaze, but she is finding the picture after about 3 seconds. That is something she wasn't doing consistently a week before. She did it 4/4 tries with me today! I also held up a picture of Kassey in my left hand and the picture of Skylar and Kyara in my right hand. I told her to look at the picture of Kassey. I purposely put this picture to Kyara's right side because she tends to be left dominate. She looked at both pictures, then settled her eyes on KASSEY! YES!!
In other news, Kassey has a nasty runny nose, with green slime pouring out of it. Poor baby is having a hard time sleeping - can't suck on her paci and breathe at the same time! I took her to the doctor today and they said it was just a cold. While we were there, we did her 12 month checkup (we were only 3 months late!) Kassey ended up with a cold and 3 shots. That was not her idea of a good time. I think she would prefer to leave the doctors' visits to Kyara!
Skylar is doing well. She is growing like a weed. School, karate, and soccer are keeping her busy.
I am suppose to talk with the neurosurgeon tomorrow, so I am anxious to hear when we will do this Baclofen pump. God has control of it. It will happen at the perfect time. I hope it is soon, I would like Kyara to have relief. After the pump is in, I am told it can take up to 2 weeks for them to get the dosing right, so it is not immediate relief for her. Again, I pray the surgery is soon.
Kyara Dzenis
Tuesday, April 28, 2009
Monday, April 27, 2009
Baclofen Trial
So today Kyara had the baclofen trial. She was scheduled to go down to interventional radiology at 9:00am. Well, at 9:20 we were still in the room waiting for her turn. Welcome to hospital timing. I understand, though, it is more important to take care of kids who are not stable than to do a baclofen trial. So, we waited. No big deal. Once we were finally down, they informed me that I could wait back in her room. I was not allowed to stay with her. A little nerve racking, but ok.
I went back upstairs and I was met by my cousin, his wife and daughter, and my aunt. What a nice surprise, except they were there because Maggie needed testing on her hearing. Turns out she needs hearing aids. That stinks. We had a nice visit and Kyara returned before they left.
The therapist, Priscilla, who was helping with the trial had come in before Kyara's procedure to get a baseline on her stiffness. She could not even bend Kyara's knees. She came back once Kyara was back and said she would be testing Kyara at 1 hour, 2 hours, and 4 hours after the procedure. She said not to expect much at the 1 and 2 hour mark, but we should see results by the 4th hour.
At the 1 hour mark, Priscilla came back and started moving Kyara's legs and ankles around some. She said there was already some improvement. By the 2 hour mark, Kyara was obviously better. And by the 4 hour mark she was great. She was able to sit in her wheelchair with out "bucking"out of it. She did not moan, groan, arch, or cry all morning and most of the afternoon. She was obviously more comfortable. YEAH!!
THE BACLOFEN TRIAL WAS A SUCCESS!!
Now the question is...what next. The trial dose wears off after about 8 hours, so Kyara will be back to how she was yesterday. The rehab doctor is consulting with neurosurgery to have Kyara scheduled to have the baclofen pump placed. This will be a surgery, but a good one. It will give Kyara so much relief. I want them to do it YESTERDAY!!!
During PT today, Kyara gave me a small grin. She smiled! Oh, be still my heart! I was totally thrilled. I was talking to her about how she had a picnic in Skylar's bed before we went to Michigan. She had been eating shredded cheese and she was on the top bunk. there were so many stuffed animals, I didn't even see Kyara at first. While I was telling her about this, she smiled at me. It wasn't a huge Kyara smile that shows her dimples, but it was definitely a grin.
Thank you God for the wonderful steps today. There is so much for us to be thankful for. Kyara is also working on operating push switches to turn a computer on and off. She worked hard on this on Sunday. She used her foot to step on the switch to play music.
I am thrilled with the progress Kyara has made in the one week we have been on the rehab floor at Scottish Rite. Her belly is doing great, she is getting closer to full feeds and off the IV nutrition. She needs her feeds to be at 70ml/hr and she is at 50 ml/hr. She is going up by 5 ml/day, so we are getting there. She should be at full feeds in about 4 days.
I know I am rambling tonight, but I feel like a I have hope again. Just when things feel like they are at their toughest, God smiles on us and shows us new ways that Kyara is improving. She still has a LONG way to go, but as long as we continue to move forward, what more can we ask for?
I went back upstairs and I was met by my cousin, his wife and daughter, and my aunt. What a nice surprise, except they were there because Maggie needed testing on her hearing. Turns out she needs hearing aids. That stinks. We had a nice visit and Kyara returned before they left.
The therapist, Priscilla, who was helping with the trial had come in before Kyara's procedure to get a baseline on her stiffness. She could not even bend Kyara's knees. She came back once Kyara was back and said she would be testing Kyara at 1 hour, 2 hours, and 4 hours after the procedure. She said not to expect much at the 1 and 2 hour mark, but we should see results by the 4th hour.
At the 1 hour mark, Priscilla came back and started moving Kyara's legs and ankles around some. She said there was already some improvement. By the 2 hour mark, Kyara was obviously better. And by the 4 hour mark she was great. She was able to sit in her wheelchair with out "bucking"out of it. She did not moan, groan, arch, or cry all morning and most of the afternoon. She was obviously more comfortable. YEAH!!
THE BACLOFEN TRIAL WAS A SUCCESS!!
Now the question is...what next. The trial dose wears off after about 8 hours, so Kyara will be back to how she was yesterday. The rehab doctor is consulting with neurosurgery to have Kyara scheduled to have the baclofen pump placed. This will be a surgery, but a good one. It will give Kyara so much relief. I want them to do it YESTERDAY!!!
During PT today, Kyara gave me a small grin. She smiled! Oh, be still my heart! I was totally thrilled. I was talking to her about how she had a picnic in Skylar's bed before we went to Michigan. She had been eating shredded cheese and she was on the top bunk. there were so many stuffed animals, I didn't even see Kyara at first. While I was telling her about this, she smiled at me. It wasn't a huge Kyara smile that shows her dimples, but it was definitely a grin.
Thank you God for the wonderful steps today. There is so much for us to be thankful for. Kyara is also working on operating push switches to turn a computer on and off. She worked hard on this on Sunday. She used her foot to step on the switch to play music.
I am thrilled with the progress Kyara has made in the one week we have been on the rehab floor at Scottish Rite. Her belly is doing great, she is getting closer to full feeds and off the IV nutrition. She needs her feeds to be at 70ml/hr and she is at 50 ml/hr. She is going up by 5 ml/day, so we are getting there. She should be at full feeds in about 4 days.
I know I am rambling tonight, but I feel like a I have hope again. Just when things feel like they are at their toughest, God smiles on us and shows us new ways that Kyara is improving. She still has a LONG way to go, but as long as we continue to move forward, what more can we ask for?
Saturday, April 25, 2009
Are You Looking At ME???
I uploaded some pictures. Some are from the transfer to Atlanta on April 13th (sorry, they are a little late) and there is one of Skylar and Kyara outside this afternoon.
I really think that Kyara is starting to see us better. This afternoon, we were outside by a koi pond. I bent down to Kyara's right side (which she has a preference to her left and alot of times her eyes will roll up) and said, "Kyara, look at Mommy." She looked directly AT me!!! Down and to the right. She looked directly at my face and held it there for a number of seconds. Last night she also gave the respiratory therapist a hard time when he was trying to give her the flovent inhaler medication. They have the inhaler attached to a tube and mask that fits over her mouth and nose. When he put the mask on her face she started to shake her head side to side like she was saying "NO."
For those of you that know Kyara, you know that she had a mind of her own. She was known to play "possom" with doctors and therapists. Lately, it seems that she is doing that again. She will "sleep" sometimes in therapy and amazing enough, as soon as I put her back in her wheelchair to leave, her eyes pop open and she is awake. Kyara...you silly girl, the therapist are there to help you! Please don't play games now! Another thing she did this afternoon in therapy - When the therapist asked her to squeeze her finger, Kyara OPENED her hand. Now that could be interpreted in several different ways. 1- It was a coincidence that her hand moved at all. 2- She was trying to squeeze, but hasn't figured out how to make her hand do what she wants. 3- She didn't WANT to squeeze the therapists finger and so she opened her hand instead. Had this happened 3 months ago, I would say without a doubt that it was option number 3. Especially since the therapist on the weekend is not the same therapist she has been working with all week. Also, last night, Gunars said Kyara made a face that was "SO KYARA." He was explaining to my dad about the arm splint and when to put it on, and Kyara made a face that showed that she was not happy with the arm splint. From what Gunars told me, it was a face that Kyara has made many times before her injury. To us, this would mean that she heard Gunars talking to my dad, she understood what he was talking about, and she did not like it. I like to believe that she has the cognitive ability to have understood everything. I pray this is the case.
I am still having a hard time coping with Kyara's injury. I am learning each day to be thankful and celebrate the little things she does. When I think about how she was before the arrest, my heart breaks. That Kyara is not my reality anymore. I don't know what the future holds, but I do know that God is taking each step with us. I believe He is showing Himself each day in Kyara's recovery. Somedays we just have to look extra close. Please continue to pray for Kyara's recovery. I know He is listening.
Friday, April 24, 2009
Good Moves and a Little Scary
First for the good stuff. Kyara slept much better last night than she has in quite some time. She slept from midnight until 2am, then she was awake until 3am (when I realized she had a poopy diaper), and then slept from 3am until 8am! The speech therapist, Lindsay, had to come in to wake us both up! I then took a shower while Lindsay worked with Kyara in her room. She said Kyara consistently looked in the direction of noise around the room. Yeah! Lindsay said she wasn't sure that Kyara was seeing her, but she definitely looked in her direction when she would call her. There is a delay of about 3 seconds after we make a noise or call her name and when she starts to gaze shift. This is not unusual with brain injuries, and I am thrilled that she is responding to the noise.
So that was one good thing that happened today. Another good thing was that Kyara is beginning to help with rolling over. Yesterday the PT, Monica, had to help support Kyara's hips and shoulders when she would roll Kyara onto her side. Kyara would make minimal effort in helping, just a slight bend in her knees. But today, Kyara was really helping much more. She would roll her shoulders and move her head in the direction of the roll. Monica did not have to support Kyara's shoulders at all today. In the later sessions, Kyara also began to bend her legs much more and bend her trunk to help her roll. She would then keep herself on her side. At one point, she started to roll back on her back, but then pulled herself back onto her side more! Wow! Praise GOD!
I believe Kyara is focusing better at times. Yesterday she seemed to be looking at us more and REALLY seeing us. I hope this is the case. I didn't get the same sense today, but then again, she was working on rolling...so she was tuckered out by the end of the day!
The scary news... Kyara's blood work shows that her hemoglobin level is down to 7.9. Normal is 12. This is scary because the hemoglobin is what carries oxygen in the blood. If hers is low, then she has to work harder to get all the oxygen she needs. Right now her oxygen saturation levels are still very high, and her heart rate is ok, so she seems ok. But the more I think about it, the less secure I feel. I am going to talk to the doctors again in the morning. Her heart rate has been higher since we have been here in Atlanta than it was in Michigan, so I wonder if her heart is having to work harder because of this low level. One way to correct it is to do a blood transfusion. Kyara has had them before. If it will help, then I am all for it. But, I think the real question should be "why is the level low?" She is not bleeding. Her labs look good, otherwise, so why is the hemoglobin low. The doctor said her level has been low since she got to Atlanta, but I don't know what it was in Michigan. If any of my friends there at Motts can find out, please post so that I will know. I would greatly appreciate it!!!
Finally, people have been asking how they can help. Well, I have a specific prayer request for Kyara. On Monday, we are scheduled for the Baclofen trial. This is the drug that will go into her spinal fluid to help reduce her muscle tone. I am praying the trial goes well, and this drug relieves Kyara's discomfort. If the trial goes well, we will be scheduled for surgery later in the week to place a pump in her abdomen and a catheter in her upper back. Please pray for the success of this trial and procedure.
So that was one good thing that happened today. Another good thing was that Kyara is beginning to help with rolling over. Yesterday the PT, Monica, had to help support Kyara's hips and shoulders when she would roll Kyara onto her side. Kyara would make minimal effort in helping, just a slight bend in her knees. But today, Kyara was really helping much more. She would roll her shoulders and move her head in the direction of the roll. Monica did not have to support Kyara's shoulders at all today. In the later sessions, Kyara also began to bend her legs much more and bend her trunk to help her roll. She would then keep herself on her side. At one point, she started to roll back on her back, but then pulled herself back onto her side more! Wow! Praise GOD!
I believe Kyara is focusing better at times. Yesterday she seemed to be looking at us more and REALLY seeing us. I hope this is the case. I didn't get the same sense today, but then again, she was working on rolling...so she was tuckered out by the end of the day!
The scary news... Kyara's blood work shows that her hemoglobin level is down to 7.9. Normal is 12. This is scary because the hemoglobin is what carries oxygen in the blood. If hers is low, then she has to work harder to get all the oxygen she needs. Right now her oxygen saturation levels are still very high, and her heart rate is ok, so she seems ok. But the more I think about it, the less secure I feel. I am going to talk to the doctors again in the morning. Her heart rate has been higher since we have been here in Atlanta than it was in Michigan, so I wonder if her heart is having to work harder because of this low level. One way to correct it is to do a blood transfusion. Kyara has had them before. If it will help, then I am all for it. But, I think the real question should be "why is the level low?" She is not bleeding. Her labs look good, otherwise, so why is the hemoglobin low. The doctor said her level has been low since she got to Atlanta, but I don't know what it was in Michigan. If any of my friends there at Motts can find out, please post so that I will know. I would greatly appreciate it!!!
Finally, people have been asking how they can help. Well, I have a specific prayer request for Kyara. On Monday, we are scheduled for the Baclofen trial. This is the drug that will go into her spinal fluid to help reduce her muscle tone. I am praying the trial goes well, and this drug relieves Kyara's discomfort. If the trial goes well, we will be scheduled for surgery later in the week to place a pump in her abdomen and a catheter in her upper back. Please pray for the success of this trial and procedure.
Wednesday, April 22, 2009
3 Months In...
Yesterday was the official 3 month mark. Hard day, hard night. Kyara did not sleep well last night and had a very busy day in therapy yesterday and today. I am sad to see that we have made it to 3 months and have not made as much progress as I would like to have seen. I keep telling myself that she has setbacks, with the colon and the dystonia (muscle stiffness/spasms). I am not sure what to think at this point.
Today has been difficult for a number of reasons. Kyara has been arching and fussing most of the day, her stomach looks to me to be more distended than it was this weekend, so I wonder if we are headed back into having more colon issues. Maybe the iliostomy is the right descision. Take the colon out of the game and see where she is, but then, is it what she really needs? We are still planning to do the Baclofen trial on Monday, and maybe that will be the best thing. If the medications is what is causing Kyara's issues, she won't have to be on as many with the Baclofen pump. I am praying that this is the course that Kyara will take. I pray the Baclofen will make huge improvements in her muscle tone and discomfort and that her colon will settle back down.
I know Kyara is in there. Today, when the OT was showing me some stretches for Kyara, she did one arm and had me do the other. She wanted to make sure I knew how to do the stretches. Well, when she would stretch Kyara, Kyara would fuss and complain. When I would stretch the other arm, I got a better stretch sometimes, and she did not fuss at all. There are brief seconds that Kyara will look at me a really focus on my face. The speech therapist mentioned that she sees Kyara doing this, too, and that she has had other kids who don't recognize their parents. I pray that the brief moments will begin to lengthen and Kyara will know how very much we love her.
Today I met with a support group in the CIRU (Comprehensive Inpatient Rehab Unit) at Scottish Rite. It was nice to meet some other parents and know who their child was and just give each other some support. They were all so uplifting and positive. I was a crying mess. Well, I suppose that is the idea of the support group. When one is down, the others are there to help them. One thing that really struck me is how faithful everyone there is. Of course, it is easier to stay faithful when you are seeing your child heal, but to hear the praise of God was comforting. It reminded me of the church sermon I heard this week (I finally went to church this Sunday.) The sermon was about the evening of Easter, and how the disciples were hiding out behind closed doors. Jesus appears to them as says "Peace be with you," Even when I am struggling with my faith, with wondering if God is listening to my prayers, and questioning why Kyara's miracle hasn't happened yet, Jesus still loves me. He is here, he wants me to have peace and know that He is taking care of everything. I have to trust in that.
By the way, I don't have a computer at the hospital, so I will not be able to post as often as I have been. I am staying there everyother night, so when I am home, I will post. I wish I could do it more often, I find it to be a therapeutic release, but...I will post when I can.
Today has been difficult for a number of reasons. Kyara has been arching and fussing most of the day, her stomach looks to me to be more distended than it was this weekend, so I wonder if we are headed back into having more colon issues. Maybe the iliostomy is the right descision. Take the colon out of the game and see where she is, but then, is it what she really needs? We are still planning to do the Baclofen trial on Monday, and maybe that will be the best thing. If the medications is what is causing Kyara's issues, she won't have to be on as many with the Baclofen pump. I am praying that this is the course that Kyara will take. I pray the Baclofen will make huge improvements in her muscle tone and discomfort and that her colon will settle back down.
I know Kyara is in there. Today, when the OT was showing me some stretches for Kyara, she did one arm and had me do the other. She wanted to make sure I knew how to do the stretches. Well, when she would stretch Kyara, Kyara would fuss and complain. When I would stretch the other arm, I got a better stretch sometimes, and she did not fuss at all. There are brief seconds that Kyara will look at me a really focus on my face. The speech therapist mentioned that she sees Kyara doing this, too, and that she has had other kids who don't recognize their parents. I pray that the brief moments will begin to lengthen and Kyara will know how very much we love her.
Today I met with a support group in the CIRU (Comprehensive Inpatient Rehab Unit) at Scottish Rite. It was nice to meet some other parents and know who their child was and just give each other some support. They were all so uplifting and positive. I was a crying mess. Well, I suppose that is the idea of the support group. When one is down, the others are there to help them. One thing that really struck me is how faithful everyone there is. Of course, it is easier to stay faithful when you are seeing your child heal, but to hear the praise of God was comforting. It reminded me of the church sermon I heard this week (I finally went to church this Sunday.) The sermon was about the evening of Easter, and how the disciples were hiding out behind closed doors. Jesus appears to them as says "Peace be with you," Even when I am struggling with my faith, with wondering if God is listening to my prayers, and questioning why Kyara's miracle hasn't happened yet, Jesus still loves me. He is here, he wants me to have peace and know that He is taking care of everything. I have to trust in that.
By the way, I don't have a computer at the hospital, so I will not be able to post as often as I have been. I am staying there everyother night, so when I am home, I will post. I wish I could do it more often, I find it to be a therapeutic release, but...I will post when I can.
Monday, April 20, 2009
First Day of Therapies
I spent the night with Kyara last night. After a weekend of sleeping at home, it was difficult to go back. She was storming most of the night and I was very frustrated with it. I tried everything I could think of to calm her: relaxing music, position changes, pressure points, decreasing stimulation, etc., but nothing would work. Finally, around 5:30 am, she fell asleep. What a night. She then slept until 10:30 when our new PT came to work with her. Oops. I let her oversleep! Ha!
Kyara had a very busy day. She had 2 sessions of PT, 1 session of OT, and 1 session of speech. Then the speech therapist and the OT did another evaluation of her to score her for insurance purposes. This will be a score that they use when they talk to insurance about her progress and her need to stay in therapy. During PT today, Kyara held her head up by herself for a minute or two. She also worked on rolling over, with help, but still. The PT was impressed with Kyara moving her right knee into flexion a little to help her roll. Of course, Kyara need a lot of help, but ...baby steps.
I talked to the Rehab doctor today about a new approach to Kyara's muscle tone and spasms. The Rehab doctors believe Kyara needs a Baclofen pump. This is a pump that is imbedded in her stomach and has a cathater that would be inserted in her spinal cord. It would give her continous medication into her spinal fluid. This is suppose to be more effective than any oral or IV medication we can give her. They are discussing doing a "trial" next Monday by doing a lumbar puncture and administering a hefty dose of the drug. If it helps, they will do the surgery to place the pump soon after. I am a little nervous, but from what I hear, this can be life altering for the people it works for, so I pray it works for Kyara.
After I therapies, I went home for the night. Dad came up to stay with Kyara until Bunny comes after sorority. Kyara was pretty upset when I left, so that made me feel very sad again. But, Dad called about 8:30 tonight and said Kyara was awake and calm!!! Her heart rate was down in the 110s-120s! What a difference! I pray it stays this way and she has a good night sleep.
Kyara had a very busy day. She had 2 sessions of PT, 1 session of OT, and 1 session of speech. Then the speech therapist and the OT did another evaluation of her to score her for insurance purposes. This will be a score that they use when they talk to insurance about her progress and her need to stay in therapy. During PT today, Kyara held her head up by herself for a minute or two. She also worked on rolling over, with help, but still. The PT was impressed with Kyara moving her right knee into flexion a little to help her roll. Of course, Kyara need a lot of help, but ...baby steps.
I talked to the Rehab doctor today about a new approach to Kyara's muscle tone and spasms. The Rehab doctors believe Kyara needs a Baclofen pump. This is a pump that is imbedded in her stomach and has a cathater that would be inserted in her spinal cord. It would give her continous medication into her spinal fluid. This is suppose to be more effective than any oral or IV medication we can give her. They are discussing doing a "trial" next Monday by doing a lumbar puncture and administering a hefty dose of the drug. If it helps, they will do the surgery to place the pump soon after. I am a little nervous, but from what I hear, this can be life altering for the people it works for, so I pray it works for Kyara.
After I therapies, I went home for the night. Dad came up to stay with Kyara until Bunny comes after sorority. Kyara was pretty upset when I left, so that made me feel very sad again. But, Dad called about 8:30 tonight and said Kyara was awake and calm!!! Her heart rate was down in the 110s-120s! What a difference! I pray it stays this way and she has a good night sleep.
Saturday, April 18, 2009
First Full Day on Rehab Floor
Today was a BEAUTIFUL day in Atlanta! This morning we had a yummy breakfast (thanks Luz Estela for cooking pancakes!) and headed out to Skylar's soccer game. I have missed watching her play so much. Just to be a part of her life again is wonderful. She played well, and scored a goal (just for you, BJ!) I am very proud of her. She has been so tough through this time. I know that this must be taking a toll on her and she is not showing us. I am worried about her and I want her to know how much we love her.
After the soccer game, we piled in the car and headed up to Scottish Rite to see Kyara and to relieve my dad (he spent the night last night). Kyara had an ok night, but is still did not sleep. Dad said she seemed more comfortable, but her heart rate is still much higher than I am used to seeing it. This morning she was back to having a very high heart rate at times, and she goes through tense phases that come like waves. The nurse has asked us how long one of her storms lasts...it is more like how long is she relaxed? When she is "storming" it can last for days. But now that we are on the rehab floor, I am hoping we will learn some new techniques to help calm these storms and help her relax.
The GI doctor on call from Dr. Meyer's office came in to see Kyara this afternoon. He didn't have much to say, except that we are waiting for the probiotics to come in. The kind Dr. Meyers wrote for is not stocked at the hospital, so I guess they had to go out somewhere to get it. The doc said sometimes they will run over to Northside Hospital to get meds that are not stock. For those of you who are not familiar with the area, Northside is the regular (not children's) hospital that is across the street from Scottish Rite. Anyway, the probiotics came about an hour later, so Kyara is now officially on them. I pray they help!
We also met one of the recreational therapists today. She went over alot of the ins and outs of the rehab floor and asked questions about what kind of things Kyara likes. Did she play with Barbies? NO. Does she like computer? YES! She wants to narrow down the toys Kyara liked to play with so that they can incorporate them into her therapy. Because Kyara was admitted late last night, she was not on the schedule for therapy evaluations today. But, we have the schedule for tomorrow and she is going to be busy! From 8:30-2:30ish she has evaluations with OT, PT, Speech, and Music Therapy. She has an hour break in the middle for rest.
I am ready for them to get started on Kyara. I am ready for her storming to get under control. For her to be awake and comfortable. It is so difficult to see her storm. I am wanting to put this is God's Hands...but how? How do I let go and just say...Here.? I want to. I know that He is the only one with the power to heal. I am finding that I am having a very hard time dealing with Kyara's injury. At first it was...ok, give it some time and she will get better. Then it was, her colon is causing her pain and that's why she is not doing better. Now I am not sure what to think. It has been almost 3 months since her cardiac arrest and I am scared. One day at a time, that is what I keep being told...easier said than done. It is very painful to watch her and not know how to help. It is excruciating to be with her...and to be away from her. Those who think I have been strong...I am not strong. I am barely holding on at times. I try my best to keep it together for the sake of my family. I am trying to think positive thoughts, but the fear keeps finding its way in. I wish I could only write happy things in the posts, but I want to be honest with myself... I write the posts in a matter of fact way most of the time because by not putting too much emotion in it, I can stay solid. As soon as feelings are involved, I break down. I am a fixer. If you have a cut, I want to put a bandaid on it. And this is something I cannot fix. If anyone has a good suggestion for a psychologist in the south metro or Atlanta area, please share their name and number.
I believe that God will help Kyara. I still believe God has a plan. I wish He would listen to mine, though. Why doesn't He ask my opinion? I know His plan is a perfect plan, but I am not understanding it. I pray we are going to get some results with the new rehab schedule and therapists. Please keep praying for Kyara. She is an amazing girl and we have to find a way in so that we can reach her.
After the soccer game, we piled in the car and headed up to Scottish Rite to see Kyara and to relieve my dad (he spent the night last night). Kyara had an ok night, but is still did not sleep. Dad said she seemed more comfortable, but her heart rate is still much higher than I am used to seeing it. This morning she was back to having a very high heart rate at times, and she goes through tense phases that come like waves. The nurse has asked us how long one of her storms lasts...it is more like how long is she relaxed? When she is "storming" it can last for days. But now that we are on the rehab floor, I am hoping we will learn some new techniques to help calm these storms and help her relax.
The GI doctor on call from Dr. Meyer's office came in to see Kyara this afternoon. He didn't have much to say, except that we are waiting for the probiotics to come in. The kind Dr. Meyers wrote for is not stocked at the hospital, so I guess they had to go out somewhere to get it. The doc said sometimes they will run over to Northside Hospital to get meds that are not stock. For those of you who are not familiar with the area, Northside is the regular (not children's) hospital that is across the street from Scottish Rite. Anyway, the probiotics came about an hour later, so Kyara is now officially on them. I pray they help!
We also met one of the recreational therapists today. She went over alot of the ins and outs of the rehab floor and asked questions about what kind of things Kyara likes. Did she play with Barbies? NO. Does she like computer? YES! She wants to narrow down the toys Kyara liked to play with so that they can incorporate them into her therapy. Because Kyara was admitted late last night, she was not on the schedule for therapy evaluations today. But, we have the schedule for tomorrow and she is going to be busy! From 8:30-2:30ish she has evaluations with OT, PT, Speech, and Music Therapy. She has an hour break in the middle for rest.
I am ready for them to get started on Kyara. I am ready for her storming to get under control. For her to be awake and comfortable. It is so difficult to see her storm. I am wanting to put this is God's Hands...but how? How do I let go and just say...Here.? I want to. I know that He is the only one with the power to heal. I am finding that I am having a very hard time dealing with Kyara's injury. At first it was...ok, give it some time and she will get better. Then it was, her colon is causing her pain and that's why she is not doing better. Now I am not sure what to think. It has been almost 3 months since her cardiac arrest and I am scared. One day at a time, that is what I keep being told...easier said than done. It is very painful to watch her and not know how to help. It is excruciating to be with her...and to be away from her. Those who think I have been strong...I am not strong. I am barely holding on at times. I try my best to keep it together for the sake of my family. I am trying to think positive thoughts, but the fear keeps finding its way in. I wish I could only write happy things in the posts, but I want to be honest with myself... I write the posts in a matter of fact way most of the time because by not putting too much emotion in it, I can stay solid. As soon as feelings are involved, I break down. I am a fixer. If you have a cut, I want to put a bandaid on it. And this is something I cannot fix. If anyone has a good suggestion for a psychologist in the south metro or Atlanta area, please share their name and number.
I believe that God will help Kyara. I still believe God has a plan. I wish He would listen to mine, though. Why doesn't He ask my opinion? I know His plan is a perfect plan, but I am not understanding it. I pray we are going to get some results with the new rehab schedule and therapists. Please keep praying for Kyara. She is an amazing girl and we have to find a way in so that we can reach her.
Friday, April 17, 2009
Rehab: Here We Come
Today Kyara has been doing much better. Her storming seems to have subsided and she is more relaxed. Her heart rate is still up in the 130s, which is higher than it has been recently, but MUCH better than the 180s-190s we were seeing for the past few days. Her belly is also much better. It is almost flat, it is not nearly as distended and it is soft again. Yeah. I wish we knew what happened, and how it was resolved, however...Kyara is a mystery. The doctors are not sure what is driving the colon issues. This is frustrating. All I can think of is that God heard our prayers and has given her some relief. There is no medical explaination for her improvement today. The medications from the rehab doctor seem to be helping, but even he said, if she is storming, there is not a whole lot he can do to stop it. So, it still seems the colon in the culprit. Get the colon under control and the storming seems to be under control.
So today we had a team/parent meeting with Dr. Meyers (GI), Dr. Solas (rehab), Dr. Bleacher (surgeon) and Dr. Davy (ICU doc). We went over the plan for Kyara... we are going to restart feeds in her j-tube tonight, and try giving her probiotics. Probiotics are the "good bacteria" that are in digestive tract. Since she has been on some major hitting antibiotics, the docs are wondering if it has disturbed not only the bad bacteria, but also the good bacteria. To an antibiotic, bacteria is bacteria. If these things don't work, then we will be considering doing a diverting ostomy. This will take the ileum (between small intestines and colon) and bring it to the outside of her body. She would then have a bag attached to "collect" stool and allow gas to escape. This is a surgery that would be reversible, but would give her colon a chance to fully heal with nothing going in it. Scary, but if that is what it takes to make her better and have a good chance at rehab, then I am all for it. I can deal with poop bags alot better than storming and her being so uncomfortable for days at a time. We will see. Hopefully, the colon is now feeling better after the flight and will begin to heal better. I hope the probiotics do the trick and we don't have to worry about an ostomy, but only time will tell.
Kyara was deemed stable enough to move to the rehab floor tonight! Thank you God! I am ready for them to start working on her. Dr. Meyers, Dr. Sholas, and our nurse today all said they saw Kyara looking around, seeming to take in her environment. She is shifting her gaze to noise. I believe Kyara is in there, and the nurse said after working with her for 8 hours today, she felt she was in there, too. This is the first time anyone has gotten to see this side of Kyara since she has been in Atlanta. And she does even a little better than this, when she is feeling good. I think they have something to work with, so I have high hopes for getting Kyara in the rehab here. I also want only positive people working with Kyara. If you don't think Kyara is going to get any better, then I don't want you working with her. I am well aware of Kyara's injury and how significant it is...but some people still recover. I am not going to give up. Gunars was telling me about an article he read where they are removing an entire hemisphere from people's heads to treat epilepsy, and these people recover! So although Kyara injury is global (all parts of her brain) I still have to believe in her.
Finally, I want to say Thank You to my mother's sorority for putting together a fundraiser for Kyara tonight. I was so touch and I had a very hard time expressing my emotions properly. For that I am so sorry. Words can not express the gratitude we have for the help you have given us. I was blown away by the love and support of so many people. I could not help but to burst into tears walking in the door tonight. Please excuse my behavior, I know I was a bit stand-offish, but I was trying hard not to burst into tears the whole night. I was just overwhelmed, thankful, humbled, amazed, and felt total love. Thank you so very very much.
God has done 3 great things for us today. He has helped Kyara become more comfortable, He has gotten Kyara to the Rehab floor and hopefully she will begin therapy tomorrow, and He has brought many wonderful people together. We are very blessed.
So today we had a team/parent meeting with Dr. Meyers (GI), Dr. Solas (rehab), Dr. Bleacher (surgeon) and Dr. Davy (ICU doc). We went over the plan for Kyara... we are going to restart feeds in her j-tube tonight, and try giving her probiotics. Probiotics are the "good bacteria" that are in digestive tract. Since she has been on some major hitting antibiotics, the docs are wondering if it has disturbed not only the bad bacteria, but also the good bacteria. To an antibiotic, bacteria is bacteria. If these things don't work, then we will be considering doing a diverting ostomy. This will take the ileum (between small intestines and colon) and bring it to the outside of her body. She would then have a bag attached to "collect" stool and allow gas to escape. This is a surgery that would be reversible, but would give her colon a chance to fully heal with nothing going in it. Scary, but if that is what it takes to make her better and have a good chance at rehab, then I am all for it. I can deal with poop bags alot better than storming and her being so uncomfortable for days at a time. We will see. Hopefully, the colon is now feeling better after the flight and will begin to heal better. I hope the probiotics do the trick and we don't have to worry about an ostomy, but only time will tell.
Kyara was deemed stable enough to move to the rehab floor tonight! Thank you God! I am ready for them to start working on her. Dr. Meyers, Dr. Sholas, and our nurse today all said they saw Kyara looking around, seeming to take in her environment. She is shifting her gaze to noise. I believe Kyara is in there, and the nurse said after working with her for 8 hours today, she felt she was in there, too. This is the first time anyone has gotten to see this side of Kyara since she has been in Atlanta. And she does even a little better than this, when she is feeling good. I think they have something to work with, so I have high hopes for getting Kyara in the rehab here. I also want only positive people working with Kyara. If you don't think Kyara is going to get any better, then I don't want you working with her. I am well aware of Kyara's injury and how significant it is...but some people still recover. I am not going to give up. Gunars was telling me about an article he read where they are removing an entire hemisphere from people's heads to treat epilepsy, and these people recover! So although Kyara injury is global (all parts of her brain) I still have to believe in her.
Finally, I want to say Thank You to my mother's sorority for putting together a fundraiser for Kyara tonight. I was so touch and I had a very hard time expressing my emotions properly. For that I am so sorry. Words can not express the gratitude we have for the help you have given us. I was blown away by the love and support of so many people. I could not help but to burst into tears walking in the door tonight. Please excuse my behavior, I know I was a bit stand-offish, but I was trying hard not to burst into tears the whole night. I was just overwhelmed, thankful, humbled, amazed, and felt total love. Thank you so very very much.
God has done 3 great things for us today. He has helped Kyara become more comfortable, He has gotten Kyara to the Rehab floor and hopefully she will begin therapy tomorrow, and He has brought many wonderful people together. We are very blessed.
Thursday, April 16, 2009
Storms and Still in ICU
Kyara is still storming. Her belly is also still very distended. I don't know if it is the chicken or the egg. Does she storm because her belly hurt, or is her belly getting distended because she is storming? Does her colon not work because of neurologic issues? I am getting very frustrated. In the meantime, the rehab doctor in Atlanta has changed almost all of Kyara's meds. I am not so sure about any of this. She is very upset, with a heart rate in the 180-190s most of the time. She is breathing about 80 times a minute, most of the day. How long can she keep this up??
I think I had unrealistic expectations coming home. Intellectually, I knew this was not a miracle cure. It wasn't like we were going to cross the border and suddenly she would be better, but at the same time, I am disappointed that she is cured. Crazy, I know...
I am trying to be as openminded about all the new medications and the process the rehab doctor is going through, but I must say I am having a hard time. When the doctor told me that he was going to give Kyara valium instead of the zanaflex I strongly told him that valium did not work well for Kyara in Michigan and that the zanaflex seemed to be the only med that really calmed her (in his defense, the zanaflex was not working now either). He told me to trust him. And if it doesn't work then I could tell him "I told you so" in the morning. Guess what. It didn't not work. In fact it did not phase her. Might as well given her a sugar pill. The doctor on call even added a second dose, and that didn't help either. "I told you so."
So, at this point, Dr. Meyers, our GI doctor believes the colon is irritating her and causing the storming to be worse. The Rehab doctor thinks everything in neurological and wants to treat that, and the ICU doctor is guess neuro, but not really sure. I am inclined to go with Dr. Meyers. I think that there are 2 issues, the gut and the brain. You have to fix the gut before we can work on the brain. Otherwise she is just going to storm and not get anywhere.
I am very frustrated, angry, sad, discouraged, etc right now. This homecoming (besides being with my family more) has been not what I had hoped for. I miss the nurses and some of the fellows from Michigan. They worked hard for Kyara.
What does God have in mind here? I am trying to trust, it is getting very difficult. He is good and I am thankful for so many things in my life, I wonder when Kyara's time will come, though.
I think I had unrealistic expectations coming home. Intellectually, I knew this was not a miracle cure. It wasn't like we were going to cross the border and suddenly she would be better, but at the same time, I am disappointed that she is cured. Crazy, I know...
I am trying to be as openminded about all the new medications and the process the rehab doctor is going through, but I must say I am having a hard time. When the doctor told me that he was going to give Kyara valium instead of the zanaflex I strongly told him that valium did not work well for Kyara in Michigan and that the zanaflex seemed to be the only med that really calmed her (in his defense, the zanaflex was not working now either). He told me to trust him. And if it doesn't work then I could tell him "I told you so" in the morning. Guess what. It didn't not work. In fact it did not phase her. Might as well given her a sugar pill. The doctor on call even added a second dose, and that didn't help either. "I told you so."
So, at this point, Dr. Meyers, our GI doctor believes the colon is irritating her and causing the storming to be worse. The Rehab doctor thinks everything in neurological and wants to treat that, and the ICU doctor is guess neuro, but not really sure. I am inclined to go with Dr. Meyers. I think that there are 2 issues, the gut and the brain. You have to fix the gut before we can work on the brain. Otherwise she is just going to storm and not get anywhere.
I am very frustrated, angry, sad, discouraged, etc right now. This homecoming (besides being with my family more) has been not what I had hoped for. I miss the nurses and some of the fellows from Michigan. They worked hard for Kyara.
What does God have in mind here? I am trying to trust, it is getting very difficult. He is good and I am thankful for so many things in my life, I wonder when Kyara's time will come, though.
Tuesday, April 14, 2009
I'm at Home-Home
I spent the night with Kyara last night, and it was rough. She is storming pretty continiously and stormed most of the day today. Her belly is quite distended still and her white blood count is up again. Maybe she is getting another infection??
I met with the Rehab doctor for Scottish Rite today, and he made me feel...good. I hope this will correlate to making Kyara feel good and start recovering better! She is still in the ICU at Scottish Rite, but will be changing to the rehab floor sometime soon. I will post a room when we are settled.
I have had an emotional homecoming. Walking in the door was surreal. I looked around, and its my house, but different. Kyara's picture is everywhere, things that remind me of her underfoot, in closets, in the girls' room, just everywhere. I don't know how Gunars has been so strong all this time being here. I am finding it VERY difficult. I have just bawled more than once tonight. Skylar, Gunars, Kassey, and I ate dinner tonight together for the first time in...I don't know how long, and it was nice, but someone was missing. I couldn't help but look over to her seat again and again to see her. I know she will be with us soon...I'm just having a hard time coping.
Thank you for all the prayers and welcome home messages. We have greatly appreciated them. I am looking forward to sleeping in MY bed tonight.
I met with the Rehab doctor for Scottish Rite today, and he made me feel...good. I hope this will correlate to making Kyara feel good and start recovering better! She is still in the ICU at Scottish Rite, but will be changing to the rehab floor sometime soon. I will post a room when we are settled.
I have had an emotional homecoming. Walking in the door was surreal. I looked around, and its my house, but different. Kyara's picture is everywhere, things that remind me of her underfoot, in closets, in the girls' room, just everywhere. I don't know how Gunars has been so strong all this time being here. I am finding it VERY difficult. I have just bawled more than once tonight. Skylar, Gunars, Kassey, and I ate dinner tonight together for the first time in...I don't know how long, and it was nice, but someone was missing. I couldn't help but look over to her seat again and again to see her. I know she will be with us soon...I'm just having a hard time coping.
Thank you for all the prayers and welcome home messages. We have greatly appreciated them. I am looking forward to sleeping in MY bed tonight.
Monday, April 13, 2009
Back in Georgia!
Kyara had her first Lear Jet experience! We were picked up at 11:45am. Too bad she didn't enjoy it. She stormed the whole way and was very uncomfortable, but we made it. We were met a Hartsfield Jackson International Airport by a fancy dancy Children's Healthcare of Atlanta Ambulance. It was one strictly for Children's Healthcare of Atlanta (CHOA), aka Scottish Rite. We got into the PICU at 4pm and it has been very busy ever since. Kyara has been storming all day and is still unhappy. Last night it's as if she knew that she was going on a airplane and did not like it. Starting last night she has been unhappy.
We understand that she will remain in the PICU for several days. There are no kids allowed. Skylar was not allowed to see Kyara. Gunars and Luz Estela also came and they stayed with Kyara while I ate dinner with Skylar. After the Doctors have a better feel for Kyara, she will be transfered to the Rehab floor.
Bunny, Pop and Kassey are still driving somewhere in Kentucky. They plan to drive all the way to Georgia.
We understand that she will remain in the PICU for several days. There are no kids allowed. Skylar was not allowed to see Kyara. Gunars and Luz Estela also came and they stayed with Kyara while I ate dinner with Skylar. After the Doctors have a better feel for Kyara, she will be transfered to the Rehab floor.
Bunny, Pop and Kassey are still driving somewhere in Kentucky. They plan to drive all the way to Georgia.
Still a "GO"
The plane is on its way and I am sick to my stomach with nerves. We are sceduled to leave between 11:30 and 12pm. I am praying for a safe trip for Kyara and for my mom, dad, and Kassey. They will be driving once we are gone.
Sunday, April 12, 2009
Happy Easter, Please Send Prayers!
First off, Happy Easter! It is a beautiful time of the year and a time of great miracles. I pray they are passed on to Kyara.
She has had an uneventful day until tonight. At about 6:00 pm she began pooping. She ended up letting go of about 300 mls of poop. That is quite a lot! After that she has been more cranky, her heart rate has gone up some and her temperature has increased a little. I pray this is NOT a new trend and that she is just reacting to the shift in fluids. We are scheduled to leave tomorrow morning, and I pray this all evens out so that plan stays in place.
She has had an uneventful day until tonight. At about 6:00 pm she began pooping. She ended up letting go of about 300 mls of poop. That is quite a lot! After that she has been more cranky, her heart rate has gone up some and her temperature has increased a little. I pray this is NOT a new trend and that she is just reacting to the shift in fluids. We are scheduled to leave tomorrow morning, and I pray this all evens out so that plan stays in place.
Saturday, April 11, 2009
Colon Study Done
The colon study was uneventful, well, sort of. The study itself was good. It showed that Kyara does not have an obstruction. She appears to have quite a bit of mucousy poo, which they believe she is having a hard time evacuating. They believe this could be due to the medications she is on, which is slowing down her gut function. So in essence, Kyara is constipated. I said the study was sort of uneventful, because she was given lasix about an hour before going down, so... she created quite a fountain! Lasix helps your kidneys produce more urine, and as we found out...it works! Kyara peed close to a liter of fluid in about 1 1/2 hours. We had to really watch her blood pressure and make sure it didn't go too low during this time, but all was good.
Other than the study, Kyara had a very quiet day. She slept from about 6:30 this morning until 6:30 tonight. I think she has her days and nights mixed up right now. Pop has stayed with her the last few nights and said she was up quite a bit last night. I am afraid she will be up again tonight, after all of the sleep she got today! Her muscle tone is looking much better. Her arms are not pulled up under her chin anymore, so that is good. You can tell how comfortable she is by the position of her arms. When she is upset or uncomfortable, she brings them up tight to her chest right under her chin, when relaxed, they rest on her hips. She is not able to straighten her arms out all the way, though, so that is something I am working on. Kyara's swelling has also decreased some. She is still swollen some, but she is starting to look like herself again. Her belly is also still distended and a little hard, but again, better than yesterday. She is softer than she was and not as distended.
I am hoping we can find a combination of medications that doesn't make her too sleepy during the day, but keep her comfortable. The meds need to not have a negative effect on her gut. We are leaving everything as it is until we get to Atlanta, though. We don't want to rock the boat when we are this close to leaving. Not only that, but the PM& R doctors seemed to have disappeared. After I refused to let them in on Thursday, they have not shown up again. I guess it doesn't matter much, we weren't planning to change any medications anyway.
I hope everyone has a Happy Easter tomorrow! I thank God for all of the blessings in our lives. As my mom reminded me tonight at dinner, we have come close to losing Kyara twice. Once with her initial ingestion, and again with the cardiac arrest. She is a tough girl. She takes longer to heal than most, but God has kept her with us. We are a very blessed family!
Other than the study, Kyara had a very quiet day. She slept from about 6:30 this morning until 6:30 tonight. I think she has her days and nights mixed up right now. Pop has stayed with her the last few nights and said she was up quite a bit last night. I am afraid she will be up again tonight, after all of the sleep she got today! Her muscle tone is looking much better. Her arms are not pulled up under her chin anymore, so that is good. You can tell how comfortable she is by the position of her arms. When she is upset or uncomfortable, she brings them up tight to her chest right under her chin, when relaxed, they rest on her hips. She is not able to straighten her arms out all the way, though, so that is something I am working on. Kyara's swelling has also decreased some. She is still swollen some, but she is starting to look like herself again. Her belly is also still distended and a little hard, but again, better than yesterday. She is softer than she was and not as distended.
I am hoping we can find a combination of medications that doesn't make her too sleepy during the day, but keep her comfortable. The meds need to not have a negative effect on her gut. We are leaving everything as it is until we get to Atlanta, though. We don't want to rock the boat when we are this close to leaving. Not only that, but the PM& R doctors seemed to have disappeared. After I refused to let them in on Thursday, they have not shown up again. I guess it doesn't matter much, we weren't planning to change any medications anyway.
I hope everyone has a Happy Easter tomorrow! I thank God for all of the blessings in our lives. As my mom reminded me tonight at dinner, we have come close to losing Kyara twice. Once with her initial ingestion, and again with the cardiac arrest. She is a tough girl. She takes longer to heal than most, but God has kept her with us. We are a very blessed family!
Friday, April 10, 2009
Like a Balloon~
Kyara has had a very quiet day today and a restful night last night, yeah! In fact, today her heart rate never got above 120s and at times when she was sleeping, it would drop into the 70s. Thank God that she was finally getting some good rest. I have noticed that when she is uncomfortable, she keeps her hands and arms bent way up high on her chest, almost under her chin. When she is resting comfortably, her hands drop down by her sides more. She is not able to completly straighten her arms due to muscle contractures, but they are closer to being straight when she is comfortable.
Today Kyara has swelled up like a balloon. The doctors said they gave her extra fluids while she was sick, so that could be what is causing all the swelling. Her poor toes looked like sausages. Her face was extremely puffy, and infact her whole body looked very puffy. The skin on her feet was stretched so taut this morning, I could not pinch up any skin. By tonight, I could almost pinch some skin. She has peed ALOT today, it has just been all or nothing. She went for 4 hours without peeing at all, then within an hour and a half, she peed close to 800mls! That is almost a liter of pee! I think she is moving the fluid out of her tissues and getting rid of it, so I hope by tomorrow more of the swelling will be gone.
Speaking of tomorrow... the doctors are planning on doing a contrast study of her colon tomorrow morning. They want to make sure they are not missing any obstruction or anything before sending her to Atlanta. Dr. Coran said he doesn't think that is the case, but wants to make sure. While we are downstairs for the study, the doctors are also planning to place a larger rectal tube. The one she has keeps getting clogged, so it is not as effective. Also the one she has is very flimsy, and actually has kinked some, so again, not as effective. Hopefully the new one can help release more of the air that seems trapped. Her belly is quite distended and it just looks uncomfortable!
I am sad that we are going to be here over Easter weekend. I never in my wildest dreams thought we would be in Michigan this long. God knows best, I will trust in that.
Today Kyara has swelled up like a balloon. The doctors said they gave her extra fluids while she was sick, so that could be what is causing all the swelling. Her poor toes looked like sausages. Her face was extremely puffy, and infact her whole body looked very puffy. The skin on her feet was stretched so taut this morning, I could not pinch up any skin. By tonight, I could almost pinch some skin. She has peed ALOT today, it has just been all or nothing. She went for 4 hours without peeing at all, then within an hour and a half, she peed close to 800mls! That is almost a liter of pee! I think she is moving the fluid out of her tissues and getting rid of it, so I hope by tomorrow more of the swelling will be gone.
Speaking of tomorrow... the doctors are planning on doing a contrast study of her colon tomorrow morning. They want to make sure they are not missing any obstruction or anything before sending her to Atlanta. Dr. Coran said he doesn't think that is the case, but wants to make sure. While we are downstairs for the study, the doctors are also planning to place a larger rectal tube. The one she has keeps getting clogged, so it is not as effective. Also the one she has is very flimsy, and actually has kinked some, so again, not as effective. Hopefully the new one can help release more of the air that seems trapped. Her belly is quite distended and it just looks uncomfortable!
I am sad that we are going to be here over Easter weekend. I never in my wildest dreams thought we would be in Michigan this long. God knows best, I will trust in that.
Thursday, April 9, 2009
Rectal Tube, Anyone?
Kinda gross, I know, but seems to have helped. Kyara had a good amount of gas trapped in her colon causing her to be distended, so the doctors decided to try to evacuate it with a rectal tube. It was actually quite a production. The doctors got dressed-up in gowns and laid blue pads all over the bed. They cautioned us not to be in direct line of Kyara's hiney because many times this is a...messy procedure. So, in they went, and it was a...deflating experience. It was not messy really, she has not "eaten" in several days. We did get to hear what sounded like a balloon deflating, so at least some of the air was released. They will keep the tube in place for 24-48 hrs to keep her colon deflated.
This must have worked to give Kyara some comfort because she slept great for about 2 hours after placement! She had also slept for about 2 hours before, though, so maybe it was the fact that the infection is getting under control and she is more restful. I had to be a guard dog at her door today because I didn't want anyone coming in and disturbing her while she was sleeping. I refused to let a new PM&R doctor in to evaluate her, which did not make the doctor happy. I told her that I would be happy to talk to her about Kyara, she could come back when Kyara was awake, but she COULD NOT go in and disturb her with an exam. She decided to write in Kyara's medical records that I was going against medical advise. I felt like I was sent to the principal's office or something. Getting written up by the teacher! Well, I was doing what I felt was best for Kyara, so I can live with that. I also sent away the dentist people (Kyara has a tooth that is turning a little gray from where she chomped down on the breathing tube when she was intubated) and the janitor who was trying to clean the other side of the room. Well, when Kyara doesn't sleep for 2-3 days and she is finally sleeping, she needs every minute she can get!
I think God has been listening to the prayers for a quick recovery from the infection. Her white blood cell count is down to 16,000 as of this morning. That is half what it was yesterday! Yeah! Her heart rate has been in the 130s when she is awake and agitated, much better than the 180s-190s. When she's sleeping, her heartrate dropped to the 90s! Her breathing rate has also decreased to the 20s-30s. She seems to be leveling out, so that is fantastic. Please keep the prayers coming. God does amazing things.
Speaking of which, I see the amazing miracles God does on a daily basis. Since we have been here, I have seen babies who are knocking on death's door and by God's hand they are given new life and turn the corner. I met a family whose son had a major spinal cord injury and he is doing remarkably well. Sitting up, able to use a manual chair, etc. God can heal Kyara. I don't know His plan for her, but I have faith that He will do what is best for her and for us. I have a hard time handing this one off to Him, though. I am trying hard to look toward the future, but not know what the future entails is very difficult. I just know that only He has the ability to turn things around. We will get to Atlanta when He determines it is best for us to go. And Kyara will make improvements when He feels the timing is right. I still praying for strength and for Kyara's full recovery.
This must have worked to give Kyara some comfort because she slept great for about 2 hours after placement! She had also slept for about 2 hours before, though, so maybe it was the fact that the infection is getting under control and she is more restful. I had to be a guard dog at her door today because I didn't want anyone coming in and disturbing her while she was sleeping. I refused to let a new PM&R doctor in to evaluate her, which did not make the doctor happy. I told her that I would be happy to talk to her about Kyara, she could come back when Kyara was awake, but she COULD NOT go in and disturb her with an exam. She decided to write in Kyara's medical records that I was going against medical advise. I felt like I was sent to the principal's office or something. Getting written up by the teacher! Well, I was doing what I felt was best for Kyara, so I can live with that. I also sent away the dentist people (Kyara has a tooth that is turning a little gray from where she chomped down on the breathing tube when she was intubated) and the janitor who was trying to clean the other side of the room. Well, when Kyara doesn't sleep for 2-3 days and she is finally sleeping, she needs every minute she can get!
I think God has been listening to the prayers for a quick recovery from the infection. Her white blood cell count is down to 16,000 as of this morning. That is half what it was yesterday! Yeah! Her heart rate has been in the 130s when she is awake and agitated, much better than the 180s-190s. When she's sleeping, her heartrate dropped to the 90s! Her breathing rate has also decreased to the 20s-30s. She seems to be leveling out, so that is fantastic. Please keep the prayers coming. God does amazing things.
Speaking of which, I see the amazing miracles God does on a daily basis. Since we have been here, I have seen babies who are knocking on death's door and by God's hand they are given new life and turn the corner. I met a family whose son had a major spinal cord injury and he is doing remarkably well. Sitting up, able to use a manual chair, etc. God can heal Kyara. I don't know His plan for her, but I have faith that He will do what is best for her and for us. I have a hard time handing this one off to Him, though. I am trying hard to look toward the future, but not know what the future entails is very difficult. I just know that only He has the ability to turn things around. We will get to Atlanta when He determines it is best for us to go. And Kyara will make improvements when He feels the timing is right. I still praying for strength and for Kyara's full recovery.
Wednesday, April 8, 2009
Infection
Well, Kyara has an infection that caused her heart rate and breathing rate to go crazy, so the doctors said it wasn't safe to travel this morning. I am ok with it. I am very disappointed, but my main concern is for Kyara right now. I hate that my family is not closer together, but again, if its not safe for Kyara to travel, then we will wait.
The doctors believe the infection is in her central line. They are treating her with antibiotics and have cultured EVERYTHING, so we are waiting to see what grows. The doctors took xrays this morning of both her chest and abdomen, and her lungs look good (so no pneumonia) and her abdomen didn't show any more pneumatosis than was already present. She has been doing a ton of belly breathing, though, and her poor belly is very distended. They believe that could be from 2 things....first she is gulping lots of air when she breathes, and secondly her gut slows down due to the infection. She has not pooped or peed as much today as usual, so that could be why her tummy is distended.
During the day today, she had a couple of short 30 minute-1 hour naps. While she slept, her heart rate would drop to 120s. This is still considered tachycardic (or a fast heartbeat) but it is much better than the 207 heartrate she had this morning. Tonight when she was awake her heart rate was in the 150s. I hope this is a sign that she is improving. Today her muscle tone made her as stiff as a board. I had a very hard time sitting her up, which I have been doing alot of lately. I pray this will decrease with the infection getting under control.
So plans going forward is for the infection to get under control with antibiotics. For her heart rate and breathing rate to decrease and stay stable, and for her muscle tone to decrease. We are looking at early next week to try again to transport her. Depending on her presentation on Friday of this week, I am going to press to get the transport set up for Monday, and if we have to cancel it, then so be it. I don't want to wait til Monday and her to be fine and then they start arranging the transport. That would put us back at least a couple of more days!
All in God's time. I pray for the strength to stay positive and hopeful while waiting for God's plan to take place. I pray for a quick recovery from the infection so that Kyara can continue to make positive strides.
The doctors believe the infection is in her central line. They are treating her with antibiotics and have cultured EVERYTHING, so we are waiting to see what grows. The doctors took xrays this morning of both her chest and abdomen, and her lungs look good (so no pneumonia) and her abdomen didn't show any more pneumatosis than was already present. She has been doing a ton of belly breathing, though, and her poor belly is very distended. They believe that could be from 2 things....first she is gulping lots of air when she breathes, and secondly her gut slows down due to the infection. She has not pooped or peed as much today as usual, so that could be why her tummy is distended.
During the day today, she had a couple of short 30 minute-1 hour naps. While she slept, her heart rate would drop to 120s. This is still considered tachycardic (or a fast heartbeat) but it is much better than the 207 heartrate she had this morning. Tonight when she was awake her heart rate was in the 150s. I hope this is a sign that she is improving. Today her muscle tone made her as stiff as a board. I had a very hard time sitting her up, which I have been doing alot of lately. I pray this will decrease with the infection getting under control.
So plans going forward is for the infection to get under control with antibiotics. For her heart rate and breathing rate to decrease and stay stable, and for her muscle tone to decrease. We are looking at early next week to try again to transport her. Depending on her presentation on Friday of this week, I am going to press to get the transport set up for Monday, and if we have to cancel it, then so be it. I don't want to wait til Monday and her to be fine and then they start arranging the transport. That would put us back at least a couple of more days!
All in God's time. I pray for the strength to stay positive and hopeful while waiting for God's plan to take place. I pray for a quick recovery from the infection so that Kyara can continue to make positive strides.
Not Going Home.
Did someone say "Bump Ahead?" For the past few days, Kyara has been increasingly agitated, but we thought it may be due to her being more aware. We also thought it could be from the agitation phase of recovery. Last night, however, we learned differently. She has an infection. We are not sure where it is stemming from yet, but she is not stable enough to fly home. With a heart rate in the 180-190s and her breathing rate very high, everyone feels she needs to get this under better control before we try to fly her home.
Yesterday when people at the hospital would ask me, "Aren't you excited about going home?" I would answer, "Not until I am on the plane and in the air." I don't understand why these things keep happening to Kyara. I am very upset not to get home...I wanted to see Skylar and Gunars so bad! I know God has a reason... I just don't understand it. I am praying for a quick recovery from the infection so we can finally get home with our family. Please pray for Kyara and for my strength, I am feeling very low right now and could use the help.
Yesterday when people at the hospital would ask me, "Aren't you excited about going home?" I would answer, "Not until I am on the plane and in the air." I don't understand why these things keep happening to Kyara. I am very upset not to get home...I wanted to see Skylar and Gunars so bad! I know God has a reason... I just don't understand it. I am praying for a quick recovery from the infection so we can finally get home with our family. Please pray for Kyara and for my strength, I am feeling very low right now and could use the help.
Tuesday, April 7, 2009
Date and Time Set
We are scheduled to be picked up from Mott Children's Hospital in Michigan tomorrow between 11-11:30am by ambulance. We will then meet up with a flight crew/nurses from Atlanta at a nearby airport and be headed to Children's Healthcare of Atlanta at Scottish Rite!
Tonight Mom and I will pack up the Ronald McDonald House and get most of it in the car. My dad just flew in and will stay with Kyara tonight, then help mom drive back tomorrow. I pray that everything goes well and we can get out of here tomorrow, and for a safe trip for all of us!
Tonight Mom and I will pack up the Ronald McDonald House and get most of it in the car. My dad just flew in and will stay with Kyara tonight, then help mom drive back tomorrow. I pray that everything goes well and we can get out of here tomorrow, and for a safe trip for all of us!
Monday, April 6, 2009
It's Monday, and Still We're Here
Curtis - A dinosaur puppet just for you!! I took Kassey to a puppet parade on Sunday. It was really neat!
Some pictures of Kassey at dinner. She is comic relief!!! Also picture of Kyara. She is upset, but she is opening her hands! This is against her normal tone. Usually when she gets upset, she clenches her hands, so I see this as a positive thing!
Last night was rough again. Kyara was moved from her private room to a double room at 2:00am! I don't mind that we had to move, they needed the room for a child that has cancer and needed to be by themselves, but I wish it had not come so late in the night. It really disrupted her sleep and I think Kyara had a hard time with the change in environment. She did not sleep much after the move, so I didn't either. Unfortunately, she was groaning and crying, and she woke our new neighbor. Sorry! I know how frustrating it can be for a roommate to wake your child. I hate that we were that roommate.
This morning Kyara was still struggling some. She just seemed very uncomfortable. There were some good points during the day, too. On three different occasions she lifted her head up and held it up for close to a minute. This evening she lifted her head 2 of the 3 times and she looked HAPPY when she did it! Sometimes when she is upset, her tone will get very strong and she will extend which causes her head to raise. This was NOT what was happening! She was doing it because she wanted to. Yes!
We have been accepted at Scottish Rite, we will be on the GI service with Dr. Meyers, and we will be on the rehab floor. Her pneumatosis is stable, thank God! Now we are waiting for transfer information. Wednesday or Thursday is the new hopeful days. Thank you for all of the prayers and warm wishes!
Sunday, April 5, 2009
WINTER Weather Warning!!
Are we not in April? Wasn't the first day of spring in March? Then, why in the world is it suppose to snow 6-10 inches TONIGHT??? It is time for us to GET OUT OF HERE!!
Kyara had a good night again last night and a good day today. She is staying calm more throughout the day, which is a great relief to my heart. I had such a hard time coping with her being uncomfortable. Seeing her day in and day out storming was very hard. Knowing that nothing I did helped her was torture. But she is in a much better place from that stand point. It is my belief that since we have the storming under control, now we need to get to Scottish Rite and rock the rehab!
We will get another xray tomorrow morning to see how the pneumatosis is. I pray it has disappeared or at least stayed stable. I am really anxious to get home. I think that getting Kyara in her normal surroundings will do her alot of good. I am ready to get her outside to get fresh air, and not have her freeze her tail off! I look forward to seeing Skylar and Gunars and sleeping in my own bed again, even if it isn't every night! I want to thank Luz Estela (Gunars' mom) for staying at our house and taking care of everything there for us. I know it has made this easier on Gunars and Skylar. We both have have awesome parents. My dad is going to fly up here to help my mom get Kassey, the car, and all of our stuff home. My mom has been through the ringer here with me and she continues to be very positive. I don't know what I would have done without her here. I certainly would have lost my mind more than once!
God puts us in the right place at the right time for His Will. If we are suppose to get home on Tuesday or Wednesday, we will. Not snow or pneumatosis will stop us if God wants us home!
Kyara had a good night again last night and a good day today. She is staying calm more throughout the day, which is a great relief to my heart. I had such a hard time coping with her being uncomfortable. Seeing her day in and day out storming was very hard. Knowing that nothing I did helped her was torture. But she is in a much better place from that stand point. It is my belief that since we have the storming under control, now we need to get to Scottish Rite and rock the rehab!
We will get another xray tomorrow morning to see how the pneumatosis is. I pray it has disappeared or at least stayed stable. I am really anxious to get home. I think that getting Kyara in her normal surroundings will do her alot of good. I am ready to get her outside to get fresh air, and not have her freeze her tail off! I look forward to seeing Skylar and Gunars and sleeping in my own bed again, even if it isn't every night! I want to thank Luz Estela (Gunars' mom) for staying at our house and taking care of everything there for us. I know it has made this easier on Gunars and Skylar. We both have have awesome parents. My dad is going to fly up here to help my mom get Kassey, the car, and all of our stuff home. My mom has been through the ringer here with me and she continues to be very positive. I don't know what I would have done without her here. I certainly would have lost my mind more than once!
God puts us in the right place at the right time for His Will. If we are suppose to get home on Tuesday or Wednesday, we will. Not snow or pneumatosis will stop us if God wants us home!
Saturday, April 4, 2009
New Xray
Kyara had a good night last night. Bunny stayed with her and said she slept like a dream. She only woke up at medication time, and for poops. Yeah!!
This morning Kyara had another xray done on her abdomen to check the progress of the pneumatosis. The doctors said it is unchanged. That means it is not better, but it is not worse, either. They said the pneumatosis is isolated to the upper left part of the colon. Before when she had it, it was everywhere! So far it is better than it was before.
Kyara has been pretty calm today, too. she has been awake, but not fussing too much. I like this much better! Yesterday, the doctors when up on her Clonodine patch from .1 to .2. For all of you math folks - I know I should have units behind the number but I am not sure of the unit. It is just referred to as the number around here! The clonodine patch is supposed to give Kyara a continious dose of medication for her tone and storming. So far, she seems better. The patch stays on for up to 5 days, then we have to put a new one on. I have learned you must wear gloves when applying it, because otherwise you can absorb the medication and it can bottom out your blood pressure. Now we don't want that, do we?
I am still very hopeful that we can get out of her on Tuesday or Wednesday. I have been told I can ride with Kyara, so my dad is going to come up to help Bunny drive home. I pray that the transfer will go smoothly and that Kyara will make more progress at Scottish Rite. I am also anxious to get Kyara home-home. Not just to Atlanta, but to 67 Blossom Ct! I believe that she will make great strides being home in her old surroundings, with her family. In God's perfect time, these things WILL happen.
This morning Kyara had another xray done on her abdomen to check the progress of the pneumatosis. The doctors said it is unchanged. That means it is not better, but it is not worse, either. They said the pneumatosis is isolated to the upper left part of the colon. Before when she had it, it was everywhere! So far it is better than it was before.
Kyara has been pretty calm today, too. she has been awake, but not fussing too much. I like this much better! Yesterday, the doctors when up on her Clonodine patch from .1 to .2. For all of you math folks - I know I should have units behind the number but I am not sure of the unit. It is just referred to as the number around here! The clonodine patch is supposed to give Kyara a continious dose of medication for her tone and storming. So far, she seems better. The patch stays on for up to 5 days, then we have to put a new one on. I have learned you must wear gloves when applying it, because otherwise you can absorb the medication and it can bottom out your blood pressure. Now we don't want that, do we?
I am still very hopeful that we can get out of her on Tuesday or Wednesday. I have been told I can ride with Kyara, so my dad is going to come up to help Bunny drive home. I pray that the transfer will go smoothly and that Kyara will make more progress at Scottish Rite. I am also anxious to get Kyara home-home. Not just to Atlanta, but to 67 Blossom Ct! I believe that she will make great strides being home in her old surroundings, with her family. In God's perfect time, these things WILL happen.
Friday, April 3, 2009
Looking for Strength
This morning has been very difficult for me. Kyara had a decent night last night, she slept 2 out of every 3 hours. So, that was improvement from the night before. Then this morning in rounds, the doctors confirmed a rumor from yesterday's abdominal xray... the pneumatosis is back. She has a little air in her colon wall in her upper left quadrant. They said it is not as bad as before, but don't know if they are catching it early. I am not sure how this is going to affect our trip back home yet. We have a target date of Tuesday or Wednesday of next week, but that depends on how her weekend goes. Please pray for the pneumatosis to clear so that we can get home.
I am posting a couple of pictures. One has the carseat in it. Sadly my battery died before we got Kyara all the way in it, so its not a great shot, but its something. The other is Kassey clowning around. She is so funny!
Thursday, April 2, 2009
Rough Night, Tough Day
Kyara did not sleep at all last night. Not one hour. And today she has been very fussy and has had a hard time getting calm. That's the bad news. That and we had hoped to get home Friday, but that is not going to happen. We are still waiting on Scottish Rite to get all the information they need to get her there. I am very bummed to not get home for the weekend. I really miss Gunars and Skylar.
Good things for today: I got the carseat installed in my car. It is officially ours! Once I did it (Dan was with me) it is really quite simple to install. I think I can remember all the steps! The best thing today was that although Kyara was very agitated, she seemed to be more aware of us, looking more in our direction when we would talk to her. She also opened her fingers some on command! More than once, too!!! Yes!
I am praying for a decent night tonight and for Kyara to continue to make strides towards recovery. Even with her agitation setback today, I feel like she has improved this week more than she has in many previous weeks combined, so I am encouraged by that. Please continue to send prayers for Kyara. We know God is with us everyday! He is getting Kyara ready for the big move and for more recovery.
Good things for today: I got the carseat installed in my car. It is officially ours! Once I did it (Dan was with me) it is really quite simple to install. I think I can remember all the steps! The best thing today was that although Kyara was very agitated, she seemed to be more aware of us, looking more in our direction when we would talk to her. She also opened her fingers some on command! More than once, too!!! Yes!
I am praying for a decent night tonight and for Kyara to continue to make strides towards recovery. Even with her agitation setback today, I feel like she has improved this week more than she has in many previous weeks combined, so I am encouraged by that. Please continue to send prayers for Kyara. We know God is with us everyday! He is getting Kyara ready for the big move and for more recovery.
Wednesday, April 1, 2009
The Car Seat Is Here!
Today I met with Dan and the car seat dealer. We spent a good amount of time going over how to install the seat and then we put Kyara in it and made sure it fit her. This carseat is a monster! It is huge, but it fits Kyara well. She look comfortable in it, and that is the most important thing. The carseat has a head rest that will stop her head from going side to side and a cap that she will wear that velcros to the head rest to stop her head from slumping forward. Otherwise, it really looks like a regular carseat on steriods!
Dan also worked some with Kyara today. He was pleased with her head control. She is working on holding her head up. Today his comment was..."This is the best head control I have seen out of her yet." Now that doesn't mean she is able to hold her head up all the time, but for 15-20 seconds she was holding it up like a champ! We are working on this with Kyara alot. Once she gets head control, we can work on sitting up. One step at a time.
Last night Kyara had the best sleep she has had in a week and half. She slept from 9:30pm-3:00am(woke up because of poop), then got her medicine and slept from 3:30am-6:00am (more poop!), then went back to sleep until 9am! That was close to 11 hours of sleep! YES!! I hope she does the same tonight.
Also, Kyara got her NG tube out today! We may put one back in for her flight home, the doctors want to make sure her stomach stays decompressed, but that is still up in the air. Speaking of coming home...that is also up in the air. We know we have been accepted at Scottish Rite, the people at Michigan have done their part in getting her ready, now we are just waiting for Scottish Rite to finish their paperwork, gathering all the information to make the transition smooth, and to figure out transportation, and at that point we will be getting home. We had a target date of this Friday, that doesn't look like it will happen. It is now looking like early to mid next week. I am bummed to be staying over the weekend. I was dreaming of going to see Skylar play soccer on Saturday, but the time will come.
I thank God for a good day today. I am thankful to have gotten Kyara's carseat and that it all fits her. God has blessed us today with small steps towards Kyara's recovery. Thank you for keeping Kyara in your prayers.
Dan also worked some with Kyara today. He was pleased with her head control. She is working on holding her head up. Today his comment was..."This is the best head control I have seen out of her yet." Now that doesn't mean she is able to hold her head up all the time, but for 15-20 seconds she was holding it up like a champ! We are working on this with Kyara alot. Once she gets head control, we can work on sitting up. One step at a time.
Last night Kyara had the best sleep she has had in a week and half. She slept from 9:30pm-3:00am(woke up because of poop), then got her medicine and slept from 3:30am-6:00am (more poop!), then went back to sleep until 9am! That was close to 11 hours of sleep! YES!! I hope she does the same tonight.
Also, Kyara got her NG tube out today! We may put one back in for her flight home, the doctors want to make sure her stomach stays decompressed, but that is still up in the air. Speaking of coming home...that is also up in the air. We know we have been accepted at Scottish Rite, the people at Michigan have done their part in getting her ready, now we are just waiting for Scottish Rite to finish their paperwork, gathering all the information to make the transition smooth, and to figure out transportation, and at that point we will be getting home. We had a target date of this Friday, that doesn't look like it will happen. It is now looking like early to mid next week. I am bummed to be staying over the weekend. I was dreaming of going to see Skylar play soccer on Saturday, but the time will come.
I thank God for a good day today. I am thankful to have gotten Kyara's carseat and that it all fits her. God has blessed us today with small steps towards Kyara's recovery. Thank you for keeping Kyara in your prayers.
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