Sarah sent this update about Mila:
Mila's having a rough go of it!!! She vomits at least 1 feeding a day, especially if she is upset. She gets 6 feeds a day of 140 mls ( but we put waaaaay more than that in the bag because we have to prime the line with formula, kwim? ). She's getting 840 calories a day, because her weight for height ratio was somewhere around -50 %. That was very scary to hear, and I've been working super hard to get every single calorie possible into her. She's gained an entire KILO ( 2.2 lbs! ) since getting the ng tube! Can you believe it? I run her feeds over an hour, at 8am, 11am, 2pm, 5pm, 8pm and 11pm. Six hours of being strapped down. She hates it. I don't blame her!
Mila takes Captopril for her heart, Lasix to make her pee, and Priolosec ( Losec ) and Zantac for the reflux caused by the NG tube holding the LES open. She gets 3 meds in the morning, one in the afternoon, and four at night. Her blood pressure is often 115 / 55 instead of 85 / 45 which is what they'd REALLY like to see. Unfortunetly, the Captopril for her heart is soooo thick and nasty she won't drink it ( 8mls ) and it won't go easily through the tube! I can't tell you how many times I've pushed a little too hard and SQUIRT! The NG and the syringe pop off and captopril stickiness is everywhere!!!! UGH!
Thank GOD, Canadian Health Coverage pays for her formula, cause there is NO WAY we could afford it at $289 a case for five cases a month! NO WAY at ALL. They also pay for the duoderm, tegaderm, tendergrips, the ng tubes, and the syringes! And a loaner pump, and an IV pole... and all the bags!
My house is a wreck, I have quite literally Mount Washmore waiting for me, my parents are here everyday, my inlaws are here everyday, and Mila can't leave the house for fear of germs! Bacteria and viruses can lodge in the scar tissue in her heart and cause her heart to fail again. Aghhh its so hard to believe that all of these problems were heart failure. HEART FAILURE. In a ONE YEAR OLD. And she was HAVING HEART ATTACKS!!
Obviously Mila and her family need our prayers daily! Thanks.
Saturday, February 23, 2008
Wednesday, February 20, 2008
Mila
Mila has been readmitted to the hospital. Obviously fever after heart surgery is never good so they are keeping her there so that they can keep a close eye on her. Please keep the family in your prayers!
Tuesday, February 19, 2008
Pray for Kristen!
Please pray for Kristen Hicks. She is very sick with a flu virus that has attacked her lungs. Her DR has her on antibiotics, steriods and medicines to open her airway. This is the last ditch effort to keep her out of the hospital. Please pray that she does not have to be put in the hospital and that the medicines will help her to feel better quickly!!
Monday, February 18, 2008
Mila...
Sarah gave this update on Mila last night:
Mila is home and doing fantastic. She's on an NG feeding tube for a bit, as her weight dropped from 8.3 kilos on the hospital scale to just 7.5 kilos! I'm so proud of her for coming through this like a champ. I'm just amazed.. What a miracle she is!!Of course, everything is not peaches n cream. She's still not sleeping, though we aren't feeding her from 11pm to 7am at all any more. She gets 6 feedings each of 140 mls - close to 30 ounces per day. What she doesn't bottle, I measure out of unthickened formula and put down the tube. If she drinks 4 out of the 5 oz, I just syringe in the last oz. If she leaves more, I put it in the feeding pump. I can't tell you how grateful I am to have that feeding tube & pump now.Mila has been switched to 30 calorie formula called Peptamen Jr. Its $289 bucks a case, and we will go through 5 cases a month!!!! Thankfully, since she is now at least partially tube fed, the government of Alberta / Canada will pay for all but $75 of it! They also provide us with syringes, tape, duoderm, the feeding pump, pump bags, the whole 9 yards for nothing! We also have four prescriptions going. She gets Captopril three times a day - it lowers her blood pressure and helps her heart heal. She gets Lasix twice a day to make her pee more, which takes the strain off her lungs and heart. She also gets Zantac twice a day, and Losec at night. The NG tube holds the LES open, which means that she does now, in fact, have reflux!
This morning Sarah very quickly let us know that they had to take Mila to the ER for a high fever. Obviously infection after this kind of surgery is a big deal. Please pray for Mila and her family right now!
Mila is home and doing fantastic. She's on an NG feeding tube for a bit, as her weight dropped from 8.3 kilos on the hospital scale to just 7.5 kilos! I'm so proud of her for coming through this like a champ. I'm just amazed.. What a miracle she is!!Of course, everything is not peaches n cream. She's still not sleeping, though we aren't feeding her from 11pm to 7am at all any more. She gets 6 feedings each of 140 mls - close to 30 ounces per day. What she doesn't bottle, I measure out of unthickened formula and put down the tube. If she drinks 4 out of the 5 oz, I just syringe in the last oz. If she leaves more, I put it in the feeding pump. I can't tell you how grateful I am to have that feeding tube & pump now.Mila has been switched to 30 calorie formula called Peptamen Jr. Its $289 bucks a case, and we will go through 5 cases a month!!!! Thankfully, since she is now at least partially tube fed, the government of Alberta / Canada will pay for all but $75 of it! They also provide us with syringes, tape, duoderm, the feeding pump, pump bags, the whole 9 yards for nothing! We also have four prescriptions going. She gets Captopril three times a day - it lowers her blood pressure and helps her heart heal. She gets Lasix twice a day to make her pee more, which takes the strain off her lungs and heart. She also gets Zantac twice a day, and Losec at night. The NG tube holds the LES open, which means that she does now, in fact, have reflux!
This morning Sarah very quickly let us know that they had to take Mila to the ER for a high fever. Obviously infection after this kind of surgery is a big deal. Please pray for Mila and her family right now!
Thursday, February 14, 2008
Riley
Please remember Rhonda's daughter Riley:
Riley is having her second set of tubes put in and her adenoids taken out on Friday, March 7 at Cook Children's.
Thanks
Riley is having her second set of tubes put in and her adenoids taken out on Friday, March 7 at Cook Children's.
Thanks
Sunday, February 10, 2008
Updates and PAGER babies!!
Update on Mila's heart surgery:
Mila's surgery went well and she is in the PICU. There was more damage / scar tissue then was anticipated but she seems to be OK. Her recovery may take several years in terms of recovering all of her heart function. Thank you all for the prayers. Sarah
Update on Mandy:
Mandy still has the trach for oxygen only, she has not had any new bleeding, not swollen from malnutrition anymore, she still has a feeding tube but is doing a "liquid diet" and so far so good. Yesterday she sat up in the recliner for the first time in a long time though she is not able to walk around yet. She was even able to visit with her oldest son whom she hadn't seen since Christmas.
Colton's is having a fundraiser on Monday in Harrison. The proceeds from the food purchased go to the local PTA but the money collected in the tip jars will be donated to Mandy's family. Please attend if at all possible. There is also going to be a fundraiser for the family at Grubs Springs Baptist on March 1st. I am not 100% on the times so I will get back to you on that. If any of you have more info then that let me know.
The PAGER babies:
This is a list of some of the babies whose parents I have met working through PAGER. These kids are dealing with various issues related to GERD, food allergies, enzyme deficiencies and other GI issues. Some are having problems eating or gaining weight while others are frequently sick and in lots of pain. Needless to say, all of these kids needs our prayers as do their parents. Especially remember these mommies, who take on the brunt of the load, when dealing with a chronically ill child. The names of the moms who specifically asked for prayers are also in parenthesis. Here are the sweetie pies:
Mila's surgery went well and she is in the PICU. There was more damage / scar tissue then was anticipated but she seems to be OK. Her recovery may take several years in terms of recovering all of her heart function. Thank you all for the prayers. Sarah
Update on Mandy:
Mandy still has the trach for oxygen only, she has not had any new bleeding, not swollen from malnutrition anymore, she still has a feeding tube but is doing a "liquid diet" and so far so good. Yesterday she sat up in the recliner for the first time in a long time though she is not able to walk around yet. She was even able to visit with her oldest son whom she hadn't seen since Christmas.
Colton's is having a fundraiser on Monday in Harrison. The proceeds from the food purchased go to the local PTA but the money collected in the tip jars will be donated to Mandy's family. Please attend if at all possible. There is also going to be a fundraiser for the family at Grubs Springs Baptist on March 1st. I am not 100% on the times so I will get back to you on that. If any of you have more info then that let me know.
The PAGER babies:
This is a list of some of the babies whose parents I have met working through PAGER. These kids are dealing with various issues related to GERD, food allergies, enzyme deficiencies and other GI issues. Some are having problems eating or gaining weight while others are frequently sick and in lots of pain. Needless to say, all of these kids needs our prayers as do their parents. Especially remember these mommies, who take on the brunt of the load, when dealing with a chronically ill child. The names of the moms who specifically asked for prayers are also in parenthesis. Here are the sweetie pies:
Aubrey
Cole
Connor
Ella
Emily
Halley
Isabella
Jessica
Kennedy (Christy)
Maggie
Mila (mentioned above)
Nate
Sebi (Deanne)
Nolan
Quinn
Check out my blog if you want to see a digital scrapbook page I did about Ella. The background has a list of all of the different symptoms that these kids can have to deal with. It is very humbling. http://www.rackleyfive.blogspot.com/
Thank you all for being such praying people. I love you!
Friday, February 8, 2008
Updates....
Please pray for Ethan, he is scheduled for a bone marrow asperate today. He is needing to take steriods to help with his breathing but it can interfere with the tranplant if there are any leukemia cells remaining. Please pray for no leukemia and for complete healing for this sweetie pie! Becky mentioned that they have been at St Judes for a year now! Pray God will give this family the strength they need to deal with all of these challenges.
Daniel Powers had surgery on Tuesday for injuries to his back sustained during the car accident. Please pray for him as he heals.
Mila was unable to have her heart surgery as scheduled because the surgon was summonded to a urgent case (which he then spent 10 hours working on) and did not want to attempt Mila's complicated surgery while he was tired. I know they were diappointed because waiting has been hard... Please continue to remember Mila and her family in your prayers.
I will check for any updates on Mandy tonight but from what I understand she is doing much better.
Keep remembering all the kids I am working with right now who are suffering from GI problems. We have some very sick babies and some very frazzled parents in need of prayer. I am going to ask if they mind listing first names of their babies before posting them. :)
Daniel Powers had surgery on Tuesday for injuries to his back sustained during the car accident. Please pray for him as he heals.
Mila was unable to have her heart surgery as scheduled because the surgon was summonded to a urgent case (which he then spent 10 hours working on) and did not want to attempt Mila's complicated surgery while he was tired. I know they were diappointed because waiting has been hard... Please continue to remember Mila and her family in your prayers.
I will check for any updates on Mandy tonight but from what I understand she is doing much better.
Keep remembering all the kids I am working with right now who are suffering from GI problems. We have some very sick babies and some very frazzled parents in need of prayer. I am going to ask if they mind listing first names of their babies before posting them. :)
Tuesday, February 5, 2008
Mila's surgery
This is what Sarah (mila's mom) just let us know:
Mila's open heart surgery is scheduled for tomorrow ( Wednesday, Feb 06 ) at 11:30am ( around there, at least ). Please send us your fondest wishes for a speedy recovery. If you send wishes by email, we will read them out loud to Mila while she is recovering in the ICU, and then post them on her wall to brighten up her room.
If you are a local and you'd like to come and visit, Mila is at the Stollery. You can call me directly at 780-504-7969 for her room number. We'd love visitors, but please, no flowers or balloons. ( hospital rules )" Stollery's offers a free service for friends & family wanting to send email well wishes to patients. The website is at:
http://www.capitalhealth.ca/HospitalsandHealthFacilities/Hospitals/StolleryChildrensHospital/SendingPatientsGreetings/HospitalMessenger.htm.
Staff receive the messages and print them off, seal them in an envelope and deliver the messages to the patient (the same as a card). Sarah would not need to check messages herself.
Mila's open heart surgery is scheduled for tomorrow ( Wednesday, Feb 06 ) at 11:30am ( around there, at least ). Please send us your fondest wishes for a speedy recovery. If you send wishes by email, we will read them out loud to Mila while she is recovering in the ICU, and then post them on her wall to brighten up her room.
If you are a local and you'd like to come and visit, Mila is at the Stollery. You can call me directly at 780-504-7969 for her room number. We'd love visitors, but please, no flowers or balloons. ( hospital rules )" Stollery's offers a free service for friends & family wanting to send email well wishes to patients. The website is at:
http://www.capitalhealth.ca/HospitalsandHealthFacilities/Hospitals/StolleryChildrensHospital/SendingPatientsGreetings/HospitalMessenger.htm.
Staff receive the messages and print them off, seal them in an envelope and deliver the messages to the patient (the same as a card). Sarah would not need to check messages herself.
Sunday, February 3, 2008
Add a few....
Matthew Butterfield is doing well in his fight against bladder cancer... This was posted by the family on Matthew's CarePage:
We saw Dr. Brock on Wednesday and he was very pleased with Matthew's ability to empty his bladder. We won't see him again until after the next images(CT & MRI). These images will create our new baseline due to surgeries to watch for shrinkage, stability and NO growth. Those are scheduled for Feb. 21. I also learned that we have an apt. with a GI doc on March 10. Dr. Brock described the GI doc's manner and it sounded like he was describing himself. I even told him so. He said we were seeing the one he would want us to see. I asked what I should tell the GI doc. He replied, "Just tell him radiation." The spells continue but they are less frequent most days. Some are more severe than others. Praying he will eventually be able to take care of business without so much pain. We saw Dr. Collier Thursday morning for counts and a check-up. As long as Matthew has a port we will visit the clinic monthly to have it flushed. Dr. Collier said that we could schedule the removal of the port after these next GOOD scans.
Please continue to pray for Matthew to be healed and get back to the business of being a little boy again!
Mila tested negative for the flu this morning so they are moving her surgury up to sometime this week (It would have been postponed if she was positive for the flu again). She is on a portable heart monitor and Sarah says they are bored with the hospital but at least now they are able to take Mila to the play room. Pray the surgery will be quick and smooth and that Mila will recover well. She is such a fighter!!
Our girls are all sick (just an upper respiratory virus) but Ella's tummy is better so PRAISE GOD because she has been miserable!!
Continue to pray for everyone mentioned below. LOVE and HUGS!
We saw Dr. Brock on Wednesday and he was very pleased with Matthew's ability to empty his bladder. We won't see him again until after the next images(CT & MRI). These images will create our new baseline due to surgeries to watch for shrinkage, stability and NO growth. Those are scheduled for Feb. 21. I also learned that we have an apt. with a GI doc on March 10. Dr. Brock described the GI doc's manner and it sounded like he was describing himself. I even told him so. He said we were seeing the one he would want us to see. I asked what I should tell the GI doc. He replied, "Just tell him radiation." The spells continue but they are less frequent most days. Some are more severe than others. Praying he will eventually be able to take care of business without so much pain. We saw Dr. Collier Thursday morning for counts and a check-up. As long as Matthew has a port we will visit the clinic monthly to have it flushed. Dr. Collier said that we could schedule the removal of the port after these next GOOD scans.
Please continue to pray for Matthew to be healed and get back to the business of being a little boy again!
Mila tested negative for the flu this morning so they are moving her surgury up to sometime this week (It would have been postponed if she was positive for the flu again). She is on a portable heart monitor and Sarah says they are bored with the hospital but at least now they are able to take Mila to the play room. Pray the surgery will be quick and smooth and that Mila will recover well. She is such a fighter!!
Our girls are all sick (just an upper respiratory virus) but Ella's tummy is better so PRAISE GOD because she has been miserable!!
Continue to pray for everyone mentioned below. LOVE and HUGS!
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