WBC 2.5
Platelets 287
Hemoglobin 11.0
ANC 1100
Weight 25 lbs 40zs
Height 31 inches
This is just a really quick update because Dani is awake. When she lays down I will post more.
As you can see her counts are a little lower than last week. She still is acting fine and the rash is pretty much gone. Her Phospherus (sp?) level has been a little high at least the last two weeks and the nurse was going to let Yvonne know. I am not sure what that means and will let you know when I find out.
I received an email from Tom that the Dart Tournament went wonderfully. He sent pictures also. Thanks to everyone that came and participated and especially to Tom for putting the event together.
Monday, January 29, 2007
Thursday, January 25, 2007
Day +77
Dani's rash is almost gone .... Thank you all for your prayers!!!! She just learned today how to get on to her toy zebra (Video below). That is an awesome accomplishment because of her being diagnosed with Hip Dysplasia. She is also learning Lion and how to roar. It is so fun to see. I will add more in a bit but Grandma wants to see the video so here it is.
http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view¤t=Pictures12606003.flv
http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view¤t=Pictures12606003.flv
Monday, January 22, 2007
Day +74 The numbers are in
WBC 2.8 (Yeah!!!)
Hemoglobin 11.0
Platelets 267
ANC 1288 (We will take it)
Weight 25 lbs 6 ozs
Well it was a much better day at clinic. First off we only where there for maybe an hour and a half. What a difference that was. It was wonderful!!!! The doctor looked at her rash and just said that she could have it for as long as a month. We just do not want it to get worse and we want her internal counts to stay positive (they are watching gut, liver, and kidneys). I did not get those today but she said she would call if there was something up and I could get a copy next week.
There is going to be a Dart Tournament this Saturday and I hopefully will be able to post the flyer soon. It is being held for Dani by a Friend of a Friend. He runs this every year and picked Dani for this years event. He just gave me the information today so sorry for the late notice. Sounds like a lot of fun. Below is just the text from the flyer.
4TH ANNUAL TOYBOX CHARITY DART TOURNAMENT
Saturday January 27th, 2007
A Darts for Kids Charity Event
PRIZES
Raffles
50/50
Tom’s Toybox
*Food*
Parker BTG Challenge
S C H E DUL E D EV E N T S
$ 10 EN TR Y
Time Event
12:00 PM BLIND DRA W -CHICA GO
2:00 PM O P E N SI NG LE S-B A SE BA L L
4:00 PM DRA W TRIPLES-SPE C IAL X’ S
7: 00 PM OPE N DOUBLE S -501
9:30 PM BLIND DRA W -FLA T EARTH
100% PAYBACK ON ALL EVENTS
SCREAMER’S
6109 Gravois Ave St. Louis, MO
(314) 353-2020
For additional Information Contact: Tom Antoni
Cell: 314-565-4746
E-mail: antonit@netzero.com
Saturday, January 20, 2007
Day +72
WBC 2.4
ANC 1245
Sorry this is late but it has been a little busy here. Dani is maintaining on the rash. It is not getting worse or better. Obviously her numbers were a little better on Friday. She is still acting fine. She just this week started saying Mama, Night Night, and trying Puppy. She gets the Pu out and acts like she knows there is more to it. No luck on fingers foods though. She stubbornly sticks to 2nd stage baby food.
Jason and I got a night out last night thanks to my niece Trish. We met up with another couple and had a wonderful time!!! It was nice to have some adult conversation and let loose.
My niece Erin's bridal shower was today and it was fun. Jason was home with the kids and survived well. We are waiting to see what the weather is going to bring tonight. I hope you all have a wonderful weekend. Dani goes back to clinic Monday and we are hoping for higher numbers again.
ANC 1245
Sorry this is late but it has been a little busy here. Dani is maintaining on the rash. It is not getting worse or better. Obviously her numbers were a little better on Friday. She is still acting fine. She just this week started saying Mama, Night Night, and trying Puppy. She gets the Pu out and acts like she knows there is more to it. No luck on fingers foods though. She stubbornly sticks to 2nd stage baby food.
Jason and I got a night out last night thanks to my niece Trish. We met up with another couple and had a wonderful time!!! It was nice to have some adult conversation and let loose.
My niece Erin's bridal shower was today and it was fun. Jason was home with the kids and survived well. We are waiting to see what the weather is going to bring tonight. I hope you all have a wonderful weekend. Dani goes back to clinic Monday and we are hoping for higher numbers again.
Wednesday, January 17, 2007
Day +69 Frustration
WBC 2.2
Hemoglobin 10.8
Platelets 236
ANC 858
Weight 25 lbs 3 ozs
Today was a day I will gladly put behind me. I will start from the beginning and include every moment so sorry but it is going to be long.
I was very much hoping that we would have the results back from her enzyme test by today so we did not have to spend 6 1/2 hours at clinic. We got there right at 8:40 am. My niece watched the boys for me before school and they only had a 1/2 day so she stayed for them to walk home ... Thank You Trish!!!!!
When we arrived I knew it was going to be an off day because we did not have our regular nurse Cheryl. We normally get out at 2:00 but we did not end up leaving today until 3:15. The nurse practioner came in and said her enzyme level on her blood test came back as normal level. WONDERFUL NEWS!!!! So I said we did not have to do her enzyme treatment today? She said she still wanted to do it because her urine test has not come back yet. Her level was at 77. To begin with it was 0. But Yvonne could not tell me what normal level was so I called Jason to try to google it. He could not find anything and ended up calling the genectist (sp?). They said they are happy with kids with Hurler's having a level of 17 so for her to be at 77 was awesome.
I was not happy with having to sit there for that amount of time if she had a normal level of Enzymes but I did it anyway.
They also said that her rash could be Graph Vs Host Disease. They volleyed back and forth all day with it could be GVHD or it could be viral. So we still do not know. They went ahead and prescribed steriod cream for her and she already has had one rubbing down with it.
The next hit was her WBC and ANC levels. They were REALLY low. Jason was very concerned about going until Monday without rechecking it so the home nurse is suppose to be coming Friday. All her internal levels for her liver, kidney, and such are fine. They all reassured us this was normal for it to go down this low because of her being weaned off the steriods and with the rash. They also said it might not start going up again for a month because her body will take awhile to fight off whatever she has.
Jason and I just have an uneasy feeling about this whole thing and there was a lot of changed story between Saturday and Wednesday. Please keep good thoughts for Dani and that she is just going over a bump in the road.
Hemoglobin 10.8
Platelets 236
ANC 858
Weight 25 lbs 3 ozs
Today was a day I will gladly put behind me. I will start from the beginning and include every moment so sorry but it is going to be long.
I was very much hoping that we would have the results back from her enzyme test by today so we did not have to spend 6 1/2 hours at clinic. We got there right at 8:40 am. My niece watched the boys for me before school and they only had a 1/2 day so she stayed for them to walk home ... Thank You Trish!!!!!
When we arrived I knew it was going to be an off day because we did not have our regular nurse Cheryl. We normally get out at 2:00 but we did not end up leaving today until 3:15. The nurse practioner came in and said her enzyme level on her blood test came back as normal level. WONDERFUL NEWS!!!! So I said we did not have to do her enzyme treatment today? She said she still wanted to do it because her urine test has not come back yet. Her level was at 77. To begin with it was 0. But Yvonne could not tell me what normal level was so I called Jason to try to google it. He could not find anything and ended up calling the genectist (sp?). They said they are happy with kids with Hurler's having a level of 17 so for her to be at 77 was awesome.
I was not happy with having to sit there for that amount of time if she had a normal level of Enzymes but I did it anyway.
They also said that her rash could be Graph Vs Host Disease. They volleyed back and forth all day with it could be GVHD or it could be viral. So we still do not know. They went ahead and prescribed steriod cream for her and she already has had one rubbing down with it.
The next hit was her WBC and ANC levels. They were REALLY low. Jason was very concerned about going until Monday without rechecking it so the home nurse is suppose to be coming Friday. All her internal levels for her liver, kidney, and such are fine. They all reassured us this was normal for it to go down this low because of her being weaned off the steriods and with the rash. They also said it might not start going up again for a month because her body will take awhile to fight off whatever she has.
Jason and I just have an uneasy feeling about this whole thing and there was a lot of changed story between Saturday and Wednesday. Please keep good thoughts for Dani and that she is just going over a bump in the road.
Sunday, January 14, 2007
Day +66
Well to top off yesterday's activities we lost power at 10:00 pm. It was quite nuts around here. Gabe was trying so hard to help out and doing what he could to help and it was much appreciated. We ended up starting up the generator and getting the heater going in the living room and Dani's room. It actually could of been a lot worse but it was a long night.
The boys fell asleep on the couch and the electric came back on at 1:40am. So I carried them to bed and what a feat that was. Jason was getting the generator turned off and things organized. Of course Dani decides to wake up at 4:00 am so I got up with her and tried to get her comfortable.
Now we are bracing for another round tonight and I am soooo hoping we stay online. My mom and niece's family are still out and at my sister's in O'Fallon. I am sooo getting to hate the word Ameren (Our Electric Company). I hope all make it through the weekend warm.
Dani is doing well. She showed a little sign of itching this morning so we gave her Benadryl and that seem to help. Her appetite and disposition have been fine.
Jason went out to buy more provisions for the evening and we hopefully will not have to use them. I am going to cancel the cardiologist appt tomorrow because of the viral infection and we are both disappointed with that. We want to see how her heart is doing. I will let you know what I reschedule it for.
The boys fell asleep on the couch and the electric came back on at 1:40am. So I carried them to bed and what a feat that was. Jason was getting the generator turned off and things organized. Of course Dani decides to wake up at 4:00 am so I got up with her and tried to get her comfortable.
Now we are bracing for another round tonight and I am soooo hoping we stay online. My mom and niece's family are still out and at my sister's in O'Fallon. I am sooo getting to hate the word Ameren (Our Electric Company). I hope all make it through the weekend warm.
Dani is doing well. She showed a little sign of itching this morning so we gave her Benadryl and that seem to help. Her appetite and disposition have been fine.
Jason went out to buy more provisions for the evening and we hopefully will not have to use them. I am going to cancel the cardiologist appt tomorrow because of the viral infection and we are both disappointed with that. We want to see how her heart is doing. I will let you know what I reschedule it for.
Saturday, January 13, 2007
Day +65
Well we have been watching a small rash on Dani's face since Thursday. It was noticeable on one side of her cheek yesterday. Last night Jason noticed it was on both sides. I called Amy (Our Coordinator) and she said keep an eye on it and if it gets worse call the hospital.
This morning it was on her legs and arms so we called and went into the hospital. We were there for three hours. Jason won a PSP game from work yesterday and that came in very handy with keeping the boys entertained. Which Gabe is proudly displaying in the picture.
They are thinking right now she has fifth disease. It will not be confirmed until they get labs back. This is a common childhood viral infection but of course with her immune system it's not the best news. Although we were scared of Graph vs Host Disease so at least it is not that. There is nothing we can do but keep an eye on her and luckily she is acting fine. I talked to Amy and she did not seem concerned so that was nice to hear. She said Dani is far enough along in the process that she should be able to handle it.
The problem will be that it will take awhile to get out of her system and her counts will be low. Today her WBC was 2.7 and her ANC was 1700. We are to call if she gets worse otherwise.
This morning it was on her legs and arms so we called and went into the hospital. We were there for three hours. Jason won a PSP game from work yesterday and that came in very handy with keeping the boys entertained. Which Gabe is proudly displaying in the picture.
They are thinking right now she has fifth disease. It will not be confirmed until they get labs back. This is a common childhood viral infection but of course with her immune system it's not the best news. Although we were scared of Graph vs Host Disease so at least it is not that. There is nothing we can do but keep an eye on her and luckily she is acting fine. I talked to Amy and she did not seem concerned so that was nice to hear. She said Dani is far enough along in the process that she should be able to handle it.
The problem will be that it will take awhile to get out of her system and her counts will be low. Today her WBC was 2.7 and her ANC was 1700. We are to call if she gets worse otherwise.
Thursday, January 11, 2007
Day +63
Hi All,
All is fine here but I wanted to send out a prayer for Cadence. She is further along then Dani in the process and having complications.
Dani has learned the art of yelling ... or so she thinks and is trying to make good use of it. She still is not walking but can make it anywhere so the baby gates have been up for a month or so now. She will even coast down the hall just using the walls. She also is now fasinated with closing her bedroom door. She is still not saying anything more than dada and baba but she is starting to have a full conversation using baby babble. All sorts of different sounds are coming out of her mouth which is good to hear.
She is doing better with keeping her glasses on but it is still a bit of a struggle. She definitely knows right and wrong with what she is suppose to touch or not touch. She also loves to dance.
We started her on some table food and she is doing well with them. Carrots, Vienna Sausages, Spaghetti, Strawberry Yogurt, and some others. She is not into picking them up and putting them in her mouth by herself but if we give them to her she chews and swallows without gagging anymore. Her appetite is still way down from where it was but she is eating enough not to worry about it.
I am hoping the bad weather this weekend will not keep us from the doctor Monday morning because I really want to see how her heart is doing. I think I have said this before but I am printing all of her blog out for her baby book so that is why I am putting so much detail into it.
We also want to thank everyone that has contributed to Dani's Medical Fund. We have had quite a few in the last month and we can not tell you how much we appreciate it. We have a long road ahead of us and with myself being on nonpaid leave it has helped alot.
Monday, January 08, 2007
Day +60
WBC 3.6
Hemoglobin 11.0
Platelets 243
ANC 3024
Weight 25 lbs
Height 31"
Head Circumference 17.75"
All is well. Hopefully today was Dani's last Enzyme Replacement Therapy. We will see if we get the results back before next Wednesday. She is doing wonderfully and we are looking foward to her heart appt next Monday and her 100 day test the second week in February. I do not want to jinx anything but I am hoping to be back to work by the last of February.
The boys are back home!!! We are complete with chaos now and love every minute of it. If you are wondering, PJ is doing really well. He has been through a lot in a short amount of time and has some adjustments to make so please keep both him and Dani in your prayers!!!!
Hemoglobin 11.0
Platelets 243
ANC 3024
Weight 25 lbs
Height 31"
Head Circumference 17.75"
All is well. Hopefully today was Dani's last Enzyme Replacement Therapy. We will see if we get the results back before next Wednesday. She is doing wonderfully and we are looking foward to her heart appt next Monday and her 100 day test the second week in February. I do not want to jinx anything but I am hoping to be back to work by the last of February.
The boys are back home!!! We are complete with chaos now and love every minute of it. If you are wondering, PJ is doing really well. He has been through a lot in a short amount of time and has some adjustments to make so please keep both him and Dani in your prayers!!!!
Friday, January 05, 2007
Day +57
Ok Boys and Girls,
This is a benefit that goes right to finding a cure for MPS. It will be held on February 25th in Collinsville and it is a Bowl-A-Thon. We hope to see you there. The information is at http://www.bowl4kraig.com/ .
All is fine with Dani and she is so close to walking it is scary. Look down below I added cute pics today of her to the previous entry.
This is a benefit that goes right to finding a cure for MPS. It will be held on February 25th in Collinsville and it is a Bowl-A-Thon. We hope to see you there. The information is at http://www.bowl4kraig.com/ .
All is fine with Dani and she is so close to walking it is scary. Look down below I added cute pics today of her to the previous entry.
Wednesday, January 03, 2007
Day +55 Drum Roll Please
Miss Dani is 100% Engrafted
I was so excited yesterday I forgot to update her numbers ... here they are
WBC 3.6 (They said these will continue to decrease as she is weaning off of the steriods. Once that is done they will start going up again)
Hemoglobin 11.1
Platelets 254
ANC 2196
Weight 24 lbs 14 ozs
They gave us the results today from the biposy and Dani has 100% of her donor's cells. That is wonderful!!! I was not expecting that at this point. They took samples today to find out if she needs to continue her enzyme therapy. We will know in two weeks and she will be getting an echo on her heart on Jan 15th. So more results to come. You can definitely tell a difference in her appetite as we wean her off of the steriods. She is not eating nearly as much as she was. She is also getting better with table food.
It has been pretty calm "knock on wood" this week. The boys went to their Dad's until next Monday when school starts.
I was so excited yesterday I forgot to update her numbers ... here they are
WBC 3.6 (They said these will continue to decrease as she is weaning off of the steriods. Once that is done they will start going up again)
Hemoglobin 11.1
Platelets 254
ANC 2196
Weight 24 lbs 14 ozs
They gave us the results today from the biposy and Dani has 100% of her donor's cells. That is wonderful!!! I was not expecting that at this point. They took samples today to find out if she needs to continue her enzyme therapy. We will know in two weeks and she will be getting an echo on her heart on Jan 15th. So more results to come. You can definitely tell a difference in her appetite as we wean her off of the steriods. She is not eating nearly as much as she was. She is also getting better with table food.
It has been pretty calm "knock on wood" this week. The boys went to their Dad's until next Monday when school starts.
Thursday, December 28, 2006
Day +48
Please say a special prayer for Kallie. She also has Hurler's and is +132 days post transplant. She is having issues with her heart. Stop and leave a comment if you would like.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=kalliegirl
Also I forgot to mention but Ethan taught Dani a wonderful trick. How to blow really juicy raspberries. The nurses were cracking up yesterday.
Happy New Year to All and I am hoping we and everyone else find some peace and happiness this year with lots of good days!!!!
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=kalliegirl
Also I forgot to mention but Ethan taught Dani a wonderful trick. How to blow really juicy raspberries. The nurses were cracking up yesterday.
Happy New Year to All and I am hoping we and everyone else find some peace and happiness this year with lots of good days!!!!
Wednesday, December 27, 2006
Day +47
WBC 4.9
Hemoglobin 11.1
Platelets 315
ANC 2842
Weight - 24lbs 13 ozs (Wowser!!!)
Hello All!!!
Clinic today was fine. I was a little concerned about her WBC count going down but Yvonne said she is very happy with Dani's progress. She also said she was sure Dani was going to be in this weekend after her Central Line Disaster but Miss Dani beat the odds again. There really is not too much new to report. The repair to her line worked wonderfully today. We got to visit with quite a few of our regular transplant nurses (Sue, Michelle, and Mary). The only one we missed was Tina and she was our night nurse so if things go well and she keeps her schedule we will not see her (but we miss you!!!!).
Our next clinic visit is next Wednesday. I am hoping for results from her Bone Marrow Biopsy then also. Oh and she will be taken down to steriods once a day tomorrow and once every two days next week. I am hoping this will put an end to her weight gain because I am really getting concerned with her weight gain, her heart meds, and the hospital not increasing them. Our normal cardiologist increased her meds with her weight but since she is gaining because of the steriods they do not want to increase them.
Worrying about stuff is just natural for my side of the family and as soon as I post this I know both Grandmas will call me because I told them all is fine. Dani's blood pressure seemed to be up today. The machine did not like her at all and Cheryl (our reg nurse) had to take her blood pressure manually a few times to prove it was ok. I would just like her to either lose the weight she has gained or for them to increase her meds so that her heart is not strained in anyway. I really am probably being a worry wart but her heart has been my main concern through all of this and I really do not like pushing it.
Hemoglobin 11.1
Platelets 315
ANC 2842
Weight - 24lbs 13 ozs (Wowser!!!)
Hello All!!!
Clinic today was fine. I was a little concerned about her WBC count going down but Yvonne said she is very happy with Dani's progress. She also said she was sure Dani was going to be in this weekend after her Central Line Disaster but Miss Dani beat the odds again. There really is not too much new to report. The repair to her line worked wonderfully today. We got to visit with quite a few of our regular transplant nurses (Sue, Michelle, and Mary). The only one we missed was Tina and she was our night nurse so if things go well and she keeps her schedule we will not see her (but we miss you!!!!).
Our next clinic visit is next Wednesday. I am hoping for results from her Bone Marrow Biopsy then also. Oh and she will be taken down to steriods once a day tomorrow and once every two days next week. I am hoping this will put an end to her weight gain because I am really getting concerned with her weight gain, her heart meds, and the hospital not increasing them. Our normal cardiologist increased her meds with her weight but since she is gaining because of the steriods they do not want to increase them.
Worrying about stuff is just natural for my side of the family and as soon as I post this I know both Grandmas will call me because I told them all is fine. Dani's blood pressure seemed to be up today. The machine did not like her at all and Cheryl (our reg nurse) had to take her blood pressure manually a few times to prove it was ok. I would just like her to either lose the weight she has gained or for them to increase her meds so that her heart is not strained in anyway. I really am probably being a worry wart but her heart has been my main concern through all of this and I really do not like pushing it.
Monday, December 25, 2006
Day +45 Merry Christmas!!!
I just wanted to say a special thanks to Suzanne and Rick Barge and their Bowling League for the wonderful gifts they sent for Christmas. We loved all of them!!!! I tried to do a traditional Christmas eve and morning. We of course stayed home because Dani is still in solitary confinement.
Jason picked up the boys from their Dad's Saturday morning and we enjoyed a full day. Baking Ham and Cookies and watching Christmas shows on TV. They received probably more than they should of both Saturday and Sunday from Santa. They pictures above are of course just some of the moments from the two days. We get the boys back tomorrow to enjoy their toys some more.
Dani will go to clinic on Wednesday and I will update again then to let you know what we learn. She is still doing well and we have no complaints here. She will be walking soon and I am sure the talking will catch up after that. I hope everyone enjoyed their holiday weekend.
Pie Eye we love you and keep up the wonderful job you are doing!!!! Merry Christmas to all of our family we were unable to see and we hope you had a wonderful time!!!! We will make it up next Christmas we promise.
Well Blogger is not liking pictures this evening so I will try to upload them tomorrow.
Jason picked up the boys from their Dad's Saturday morning and we enjoyed a full day. Baking Ham and Cookies and watching Christmas shows on TV. They received probably more than they should of both Saturday and Sunday from Santa. They pictures above are of course just some of the moments from the two days. We get the boys back tomorrow to enjoy their toys some more.
Dani will go to clinic on Wednesday and I will update again then to let you know what we learn. She is still doing well and we have no complaints here. She will be walking soon and I am sure the talking will catch up after that. I hope everyone enjoyed their holiday weekend.
Pie Eye we love you and keep up the wonderful job you are doing!!!! Merry Christmas to all of our family we were unable to see and we hope you had a wonderful time!!!! We will make it up next Christmas we promise.
Well Blogger is not liking pictures this evening so I will try to upload them tomorrow.
Thursday, December 21, 2006
Day +42
Just some cute pictures. Dani is doing well and her line seems like it is doing fine. Gabe had his X-Mas concert Monday night and it was wonderful. The boys last day of school is today and they are having their X-Mas parties so were very excited to get to school. Gotta love it. I took these pictures this morning and Dani has her pink nursing scrubs on. The back says "Nurse In Training". Too cute!!!
Tuesday, December 19, 2006
Day +40
Well obviously things have not gone smoothly or I would not be posting. I am going to give the full story and personally feel lots of blame on myself for the incident.
I know the majority already know this and now you all will find out how anal I am about getting things done and the price Miss Dani had to pay which will NOT happen again. Yesterday was a full day of activities again with Clinic all day for Dani and then Gabe had a X-Mas concert that we went to last night. Grandma Boni watched Dani and Ethan for us.
This morning I got up a little later (around 6:30) and got all of Dani's meds ready and then took a shower. I then woke her up and gave her her bottle and all her meds and started her Cyclosprine on her pump. Ethan had just woke up and I did not make it clear but assumed he would keep an eye on her for me. I wanted to run downstairs and start a load of laundry and clean the cat litter because we have had a few accidents with a sick cat lately and I was trying to curve that..... all my excuses on why this happened.
ANYWAY .... when I was coming back upstairs I heard Dani whimpering and she was starting to get really mad. I walked into the living room and saw that her pump was hooked on one of the legs of the chair and the tubing was taunt. Just as I was reaching down to get it to give her some slack she just got mad and yanked her chest and shoulders. The next thing I know and I am sure I yelled "No Dani" pretty loud I see her double lumen on the floor and her still standing.
I yelled quickly for Jason and told him to call 911 because I was sure she had pulled her central line completely out. The cental line enters through her chest and internally ends up in her heart to distribute medicine and draw blood. I laid her down and put pressure on her chest to stop the bleed and Gabe grabbed me a towel.
Jason and I were both in shock at this point and obviously thinking the worst. The boys still do not totally comprehend the extent of what Dani is going through (which is not a bad thing) and was complaining because I was making them do things .... (imagine that).
I kept looking down at her stomach and chest and there was blood but not what I was expecting. When I saw it was not that bad I lifted her up and started figuring out what I would need to take with us in the ambulance.
A officer got there first and was asking questions and said the ambulance was behind him. When the peramedics got there they seem pretty calm with the whole situation which helped me to stay calm. They went and got her carseat out of the van and Dani and I were on our way.
I forgot to mention that Ethan had a doctor's appointment this morning which was one of the reason I was trying to get more done than usual. I called my niece Trish (she was going to watch Dani anyway) and asked her to come over as soon as possible. I then called the Boy's Dad to see if he could handle the appointment for Ethan.
At no point beside when the initial event happened did Dani cry. She was mad about being restrained and scream at the moment of pulling but was laughing soon after, which was amazing. The paramedic was wonderful and sang with me "Itsy Bitsy Spider" to keep Dani entertained while the driver was trying to get around Rush Hour traffic.
We ended up in Emergency where Jason and Grandma Boni arrived and then went to get X-Rays to make sure internally all was well and then up to Hem/Onc to get the line repaired. All ended up fine. The line was fine internally and they repaired it ... which so far so good. I guess the true test will be tonight when we do the next infusion. She missed none of her meds and she is now napping. The issue now will be making sure she does not get an infection from having that line exposed.
I will tell you this. I will be spending the 2 hours twice a day during infusion with her unless she is sleeping. I will not be taking any more chances. I take full responsiblity for the episode and nothing is more important than keeping her safe and sound.
I know the majority already know this and now you all will find out how anal I am about getting things done and the price Miss Dani had to pay which will NOT happen again. Yesterday was a full day of activities again with Clinic all day for Dani and then Gabe had a X-Mas concert that we went to last night. Grandma Boni watched Dani and Ethan for us.
This morning I got up a little later (around 6:30) and got all of Dani's meds ready and then took a shower. I then woke her up and gave her her bottle and all her meds and started her Cyclosprine on her pump. Ethan had just woke up and I did not make it clear but assumed he would keep an eye on her for me. I wanted to run downstairs and start a load of laundry and clean the cat litter because we have had a few accidents with a sick cat lately and I was trying to curve that..... all my excuses on why this happened.
ANYWAY .... when I was coming back upstairs I heard Dani whimpering and she was starting to get really mad. I walked into the living room and saw that her pump was hooked on one of the legs of the chair and the tubing was taunt. Just as I was reaching down to get it to give her some slack she just got mad and yanked her chest and shoulders. The next thing I know and I am sure I yelled "No Dani" pretty loud I see her double lumen on the floor and her still standing.
I yelled quickly for Jason and told him to call 911 because I was sure she had pulled her central line completely out. The cental line enters through her chest and internally ends up in her heart to distribute medicine and draw blood. I laid her down and put pressure on her chest to stop the bleed and Gabe grabbed me a towel.
Jason and I were both in shock at this point and obviously thinking the worst. The boys still do not totally comprehend the extent of what Dani is going through (which is not a bad thing) and was complaining because I was making them do things .... (imagine that).
I kept looking down at her stomach and chest and there was blood but not what I was expecting. When I saw it was not that bad I lifted her up and started figuring out what I would need to take with us in the ambulance.
A officer got there first and was asking questions and said the ambulance was behind him. When the peramedics got there they seem pretty calm with the whole situation which helped me to stay calm. They went and got her carseat out of the van and Dani and I were on our way.
I forgot to mention that Ethan had a doctor's appointment this morning which was one of the reason I was trying to get more done than usual. I called my niece Trish (she was going to watch Dani anyway) and asked her to come over as soon as possible. I then called the Boy's Dad to see if he could handle the appointment for Ethan.
At no point beside when the initial event happened did Dani cry. She was mad about being restrained and scream at the moment of pulling but was laughing soon after, which was amazing. The paramedic was wonderful and sang with me "Itsy Bitsy Spider" to keep Dani entertained while the driver was trying to get around Rush Hour traffic.
We ended up in Emergency where Jason and Grandma Boni arrived and then went to get X-Rays to make sure internally all was well and then up to Hem/Onc to get the line repaired. All ended up fine. The line was fine internally and they repaired it ... which so far so good. I guess the true test will be tonight when we do the next infusion. She missed none of her meds and she is now napping. The issue now will be making sure she does not get an infection from having that line exposed.
I will tell you this. I will be spending the 2 hours twice a day during infusion with her unless she is sleeping. I will not be taking any more chances. I take full responsiblity for the episode and nothing is more important than keeping her safe and sound.
Monday, December 18, 2006
Day +39
WBC - 8.3
Hemoglobin - 11.0
Platelets - 273
ANC - 6474
Weight - 10.93 (24 lbs)
Dani continues to move forward and gain weight. We are now referring to her as our little linebacker. She has some shoulders on her now. She is also starting to grow the hair all over from the Cyclosprine which is normal. That will all fall out (hopefully) once we wean her off of the cyclosprine around the +100 day mark. Yvonne (our nurse practioner) said we might start as early as +80 days but we are in no hurry as long as she stays healthy.
The boys are excited for Christmas and school vacation. I hope you all enjoy your long weekend and holiday. Dani does not go back to clinic again until next Wednesday so hopefully you will not hear from us until then unless of course I have really cute Christmas pictures to share. I took cute pictures today but can not find my cable currently to link my phone to my computer so I might update with those later.
Hemoglobin - 11.0
Platelets - 273
ANC - 6474
Weight - 10.93 (24 lbs)
Dani continues to move forward and gain weight. We are now referring to her as our little linebacker. She has some shoulders on her now. She is also starting to grow the hair all over from the Cyclosprine which is normal. That will all fall out (hopefully) once we wean her off of the cyclosprine around the +100 day mark. Yvonne (our nurse practioner) said we might start as early as +80 days but we are in no hurry as long as she stays healthy.
The boys are excited for Christmas and school vacation. I hope you all enjoy your long weekend and holiday. Dani does not go back to clinic again until next Wednesday so hopefully you will not hear from us until then unless of course I have really cute Christmas pictures to share. I took cute pictures today but can not find my cable currently to link my phone to my computer so I might update with those later.
Sunday, December 17, 2006
Day +38
Makayla passed today at 12:37pm. I actually wrote this on the MPS Forum but felt I needed to share it here also.
Makalya is my first baby that I have known from birth to death .... I believe the same with my husband. I can not imagine what Tisha, Steven, Mimi, and the rest of the family is going through or any of you that have already lost a child. I just put myself in her place and break down every time I do it. I send so many thoughts to them and hope they get through this as well as they can. I am sure the strength is there when the situation arises but I am so far from that point that it hurts so bad to think about it.
I have even taken it out on Jason in a inpersonal way because I do not know how to deal with this. I love every child that I come to know (even via internet) and I know as I deal with the MPS world I will have more of these episodes but I do not want to and get so "angry" that I have too. I know the Holiday's will never be the same and just enjoy the good ones when we can. Hugs to all.
Dani is doing well and actually had Christmas with her Grandma Dunn today as well as the boys. We had a wonderful time and it was a really good day but thoughts of Makayla were always in our heads.
As my oldest nephew always says hug your loved ones!!!!
Makalya is my first baby that I have known from birth to death .... I believe the same with my husband. I can not imagine what Tisha, Steven, Mimi, and the rest of the family is going through or any of you that have already lost a child. I just put myself in her place and break down every time I do it. I send so many thoughts to them and hope they get through this as well as they can. I am sure the strength is there when the situation arises but I am so far from that point that it hurts so bad to think about it.
I have even taken it out on Jason in a inpersonal way because I do not know how to deal with this. I love every child that I come to know (even via internet) and I know as I deal with the MPS world I will have more of these episodes but I do not want to and get so "angry" that I have too. I know the Holiday's will never be the same and just enjoy the good ones when we can. Hugs to all.
Dani is doing well and actually had Christmas with her Grandma Dunn today as well as the boys. We had a wonderful time and it was a really good day but thoughts of Makayla were always in our heads.
As my oldest nephew always says hug your loved ones!!!!
Friday, December 15, 2006
Please Pray for Makalya and Her Family
Makalya is 4 months old and also has Hurler's Syndrome and had her transplant a couple of weeks before Dani. They are really needing prayers and thoughts to help them through the tough decision they have now made. I have been following the family and Hailey and Makalya since I found out about Dani's diagnosis. Please take a moment and visit her site.
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=makaylachavers
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=makaylachavers
Day +36
Dani did great!!!! We were there a total of four hours and she is a trooper. They took her back with her blanky and the nurses said when she woke up she smiled and starting stroking her blanky and all was well. She drank a ton of formula as soon as they let her and we were on our way home. She was not cranky at all before hand even though she had not had a bottle since 5 this morning.
Hope everyone has a wonderful weekend and gets their shopping done. The pictures are of Dani squashing Ethan when he envades her space and her today in one of her birthday outfits.
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