Just wanted to give the blogospher an update that WE ARE HOME!
I'll write more later, but wanted you to know we are back and all the five Weigner princesses are under one roof. So though we are home, life is probably even more busy, but anything to have the best recuperation possible for Bekah.
Here she can get a good night sleep. She is able to be outside for some fresh air whenever she wants to be. (in the hospital she was not allowed under any circumstances to leave her room.). She is able to do an inhaled antibiotic which she wasn't allowed to do in the hospital. Sounds a little strange right. Well the infection control of the hospital doesn't like aerosolized mixutres due to resistance with bugs in general, and that can cause more super bugs in the hospital and with cancer patients and those fighting other intense diseases that is the last thing they need. So I understand it from their perspective, but am thankful here she is able to give a fight from all angles against her bacteria. The antibiotics going right into her blood to knock out the life line of the bacteria, or at least weaken it, and than topically with her breathing it in, to immobolize it's strength even more.
Maybe I can have April give a physicians description sometime for all the scientific heads out there.
So Bekah's schedule now consists of getting three different antibiotics during the day. Two of them she does three times a day, and the other one she gets a large dose once a day. Four times a day she also needs to do a nebulizer with several different therapies that are aerosolized, followed by different types of physical therapy to help knock out, shake out, vibrate her lungs. Since the bacteria is getting weakened, Bekah needs to take advantage of really doing whatever she can to get it out of her body. This isn't an easy thing, since she has thicker mucous and the bacteria isn't excited about leaving...this is a lot of work for Bekah. For instance I do Physical PT on her which means that I cup my hands and basically pound on the girl. I do several different areas covereing different lobes of her lungs, and after each lobe, she needs to take a deep breath and than I do a vibrating motion to help loosen the mucous even more. Another type of therapy she has that she does on her own is the vest. This is like an inflateable life jacket. She puts it on, it fills with air, and than it shakes her and vibrates her at different levels. Again, after each time she has to do focused deep breath coughs called 'huffing' (don't worry it isn't the glue type), both help her cough up the mucous. The final form of Physical therapy is called an Acapella, and she breathes in and out of this device. This device essentially seems to vibrate the air internally hoping to loosen some mucous and she needs to cough it up. You can tell why it is so important now for CF people to have really solid nutrition and be physically active as much as possible, because you can imagine the energy this takes. Take into consideration the fact that when most people are in the hospital they feel really horrible and don't want to cough it up. So we are so thankful Bekah is so strong and feeling well that she can really have the energy to come at this full force for the length of time she is on the IV antibiotics.
So when I'm not on top of Bekah chasing her with Saline and antibiotic bottles, than I'm chasing her with nutrition shakes, eating options, yogurt with lots of probiotics...and when she isn't doing that, she's doing a nebulizer followed by physical therapy. When I think of all that is being asked of her, and to know she is only 15 I am astounded at what an incredible girl of strength she is. Mentally and physically.
I'm going to get a picture up of the medication bulbs we use that have her medication in them. For those that are really interested, maybe we can even get a video up, to scare all of you as I hold really big needles! :) Ha Ha Ha( evil laughter inputed here!) Hopefully I won't drop one of these on my foot because it would REALLY HURT! No I don't inject anything into Bekah with these needles, but it is for mixing one of her antibiotics. It needs to be mixed right before it gets run into her system, so Mark and I get to be MAD SCIENTISTS, and mix up this particular medicine. Seriously, MARK LOVES this part. He gets a crazy grin on his face while he's doing it. The CHOP home nurse got a kick out of it last night when she was here.
I have to say again how thankful I am for my husband. The nurse said how rare it is for husband to be as involved as Mark is. No doubt most people would think how can one person take care of five kids, homeschooling them on top, and all this medical schedule for Bekah. The truth is ONE PERSON CANNOT do it! We do this as a team, and I was reminded from the nurses comments yesterday what a treasure he is. I think she was even nervous at first about how I would function as I handled the middle of the night meds with Bekah and keep up with everything. I looked at Mark and reminded the nurse... when I get cranky....he takes over! :) He always asks which time period he would like me to take, and most of the times the really LATE ones I'll do, because I'm a night owl...the early morning ones he gets....because he is an early bird. So who knew that 17 years ago when we met at college, and God was drawing us together with all our differences, that they would perfectly complement each other for things like this.
Well of course in Karen fashion this ended up being longer than a quick update! Ha Ha. I'll get up some pictures of the mad scientist/pharmacist for all of you and maybe picture of our bedroom that has now turned into a pharmacy complete with medical waste! ha ha. No worries, this stuff is NOTHING compared to Hanna's diapers! Just LOTS of alcohol wipes and empty syringes. :)
I know some of you have had problems commenting on this blog. I have done everything possible to change the settings, yet it still most people comment. So if you want to send a comment, to Bekah, the other girls, the mad scientist or say hi to any of the animals....just email us at mweigner@comcast.net
Thanks for those that have written to say you are praying.
We thank God for each one of you. Off to the next thing in Bekah's schedule. Wrapping her up in Saran Wrap after I have Lysoled her! Ha Ha!
Love to all.....
Karen
I'll write more later, but wanted you to know we are back and all the five Weigner princesses are under one roof. So though we are home, life is probably even more busy, but anything to have the best recuperation possible for Bekah.
Here she can get a good night sleep. She is able to be outside for some fresh air whenever she wants to be. (in the hospital she was not allowed under any circumstances to leave her room.). She is able to do an inhaled antibiotic which she wasn't allowed to do in the hospital. Sounds a little strange right. Well the infection control of the hospital doesn't like aerosolized mixutres due to resistance with bugs in general, and that can cause more super bugs in the hospital and with cancer patients and those fighting other intense diseases that is the last thing they need. So I understand it from their perspective, but am thankful here she is able to give a fight from all angles against her bacteria. The antibiotics going right into her blood to knock out the life line of the bacteria, or at least weaken it, and than topically with her breathing it in, to immobolize it's strength even more.
Maybe I can have April give a physicians description sometime for all the scientific heads out there.
So Bekah's schedule now consists of getting three different antibiotics during the day. Two of them she does three times a day, and the other one she gets a large dose once a day. Four times a day she also needs to do a nebulizer with several different therapies that are aerosolized, followed by different types of physical therapy to help knock out, shake out, vibrate her lungs. Since the bacteria is getting weakened, Bekah needs to take advantage of really doing whatever she can to get it out of her body. This isn't an easy thing, since she has thicker mucous and the bacteria isn't excited about leaving...this is a lot of work for Bekah. For instance I do Physical PT on her which means that I cup my hands and basically pound on the girl. I do several different areas covereing different lobes of her lungs, and after each lobe, she needs to take a deep breath and than I do a vibrating motion to help loosen the mucous even more. Another type of therapy she has that she does on her own is the vest. This is like an inflateable life jacket. She puts it on, it fills with air, and than it shakes her and vibrates her at different levels. Again, after each time she has to do focused deep breath coughs called 'huffing' (don't worry it isn't the glue type), both help her cough up the mucous. The final form of Physical therapy is called an Acapella, and she breathes in and out of this device. This device essentially seems to vibrate the air internally hoping to loosen some mucous and she needs to cough it up. You can tell why it is so important now for CF people to have really solid nutrition and be physically active as much as possible, because you can imagine the energy this takes. Take into consideration the fact that when most people are in the hospital they feel really horrible and don't want to cough it up. So we are so thankful Bekah is so strong and feeling well that she can really have the energy to come at this full force for the length of time she is on the IV antibiotics.
So when I'm not on top of Bekah chasing her with Saline and antibiotic bottles, than I'm chasing her with nutrition shakes, eating options, yogurt with lots of probiotics...and when she isn't doing that, she's doing a nebulizer followed by physical therapy. When I think of all that is being asked of her, and to know she is only 15 I am astounded at what an incredible girl of strength she is. Mentally and physically.
I'm going to get a picture up of the medication bulbs we use that have her medication in them. For those that are really interested, maybe we can even get a video up, to scare all of you as I hold really big needles! :) Ha Ha Ha( evil laughter inputed here!) Hopefully I won't drop one of these on my foot because it would REALLY HURT! No I don't inject anything into Bekah with these needles, but it is for mixing one of her antibiotics. It needs to be mixed right before it gets run into her system, so Mark and I get to be MAD SCIENTISTS, and mix up this particular medicine. Seriously, MARK LOVES this part. He gets a crazy grin on his face while he's doing it. The CHOP home nurse got a kick out of it last night when she was here.
I have to say again how thankful I am for my husband. The nurse said how rare it is for husband to be as involved as Mark is. No doubt most people would think how can one person take care of five kids, homeschooling them on top, and all this medical schedule for Bekah. The truth is ONE PERSON CANNOT do it! We do this as a team, and I was reminded from the nurses comments yesterday what a treasure he is. I think she was even nervous at first about how I would function as I handled the middle of the night meds with Bekah and keep up with everything. I looked at Mark and reminded the nurse... when I get cranky....he takes over! :) He always asks which time period he would like me to take, and most of the times the really LATE ones I'll do, because I'm a night owl...the early morning ones he gets....because he is an early bird. So who knew that 17 years ago when we met at college, and God was drawing us together with all our differences, that they would perfectly complement each other for things like this.
Well of course in Karen fashion this ended up being longer than a quick update! Ha Ha. I'll get up some pictures of the mad scientist/pharmacist for all of you and maybe picture of our bedroom that has now turned into a pharmacy complete with medical waste! ha ha. No worries, this stuff is NOTHING compared to Hanna's diapers! Just LOTS of alcohol wipes and empty syringes. :)
I know some of you have had problems commenting on this blog. I have done everything possible to change the settings, yet it still most people comment. So if you want to send a comment, to Bekah, the other girls, the mad scientist or say hi to any of the animals....just email us at mweigner@comcast.net
Thanks for those that have written to say you are praying.
We thank God for each one of you. Off to the next thing in Bekah's schedule. Wrapping her up in Saran Wrap after I have Lysoled her! Ha Ha!
Love to all.....
Karen
1 comment:
Praying for your daughter to feel stronger and better each day. For her mother and father's strength for all the demands that come with care taking and CF. And that she will see what great role models you are, and want to take the best care of herself as she gets older. I am so glad you are all back home, and Bekah can get all the meds she needs, with all the fresh air she wants. Much love to you all!
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