Maddie's weekend has not been good by any means.
Since thursday she has probably slept a total of 6 hours. Last night was the worst night she's had thus far and several new developments have taken place. She now has a double ear infection, an x-ray has revealed that she may be developing pneumonia and several other cultures are still pending to determine a few other possibilities. Her heart rate was around 200-220 beats per minute throughout the evening, accompanied by a 102-103 fever as well. She had an IV line put back in so they could administer the neccessary antibiotics and her other meds are now being given via the IV again also. They put her back on the high flow canula and have a team of the necessary medical professionals on standby right now in case they need to reintibate her (breathing tube). They have also added valume and a muscle relaxer to the mix as she has become very aggitated as well as very tight. For some reason none of this is helping her sleep nor is it helping her breathe easier. We are stumped!
She is fighting so bravely for so long and no words could convey how proud we are of her and how much it breaks our hearts to see her in this condition. We pray to God that he just give her a break here, she deserves it. We are going to keep this short because it has been a very long and emotional evening. We just wanted to make sure everyone knew where she was at. Please continue to pray for our Maddie.
Ann,Rick and Maddie
Sunday, March 29, 2009
Friday, March 27, 2009
Since the last time we posted there have been several developments;some good, and some not so good.
The not so good: Maddie's cat scan results revealed damage to her brain as a result of lack of blood and therefore oxygen during the period she was in arrest. The damage is not centralized, but rather spread throughout. So far we can not tell what the ramifications of all that means and will most likely not be able to tell untill she is completely off the meds and we can see how she has been affected. The doctors say she could get better or she could get worse;only time will tell.
The Good: The doctors just finished rounds and are hopeful that we might (and I emphasize might) be able to get her home as early as next friday. Her old feed tube is back in so the intestinal feeds are on the shelf. Her central line (IV) has been removed so all of her meds are being administered through her feed tube. They would like to get her up to 6 feeds of 150 ml over a 24 hour period before they will let her go. We do not think that is possible (it would put her at 900 ml/day), it took us 2 years to get her to 750. We are waiting for one of the doctors to return so we can express that to them. WE JUST WANT TO GET HER HOME. We have been here 48 days and if it goes much longer we will have common law marriges wtih some of the doctors here and I'm gonna have to start asking for child support !!!(still have our sense of humor).
Right now we are waiting for a brain trauma rehab doctor to come and talk to us and hopefully give us a better understanding of what areas of her brain are damaged and what those areas functions are. We have been told that nobody will be able to give us an accurate diagnosis of what limitations she may or may not have, we will just have to wait and see what she can and can't do. This is obviously very frustrating for all of us and we will have to refocus our game plan that we discussed here in earlier posts given the current set of circumstances. We are trying our best to remain positive and strong for Maddie right now as well as into the forseeable future because that's what she needs.
Your continued support and prayers are greatly needed and very much appreciated.
Ann, Rick and Maddie
The not so good: Maddie's cat scan results revealed damage to her brain as a result of lack of blood and therefore oxygen during the period she was in arrest. The damage is not centralized, but rather spread throughout. So far we can not tell what the ramifications of all that means and will most likely not be able to tell untill she is completely off the meds and we can see how she has been affected. The doctors say she could get better or she could get worse;only time will tell.
The Good: The doctors just finished rounds and are hopeful that we might (and I emphasize might) be able to get her home as early as next friday. Her old feed tube is back in so the intestinal feeds are on the shelf. Her central line (IV) has been removed so all of her meds are being administered through her feed tube. They would like to get her up to 6 feeds of 150 ml over a 24 hour period before they will let her go. We do not think that is possible (it would put her at 900 ml/day), it took us 2 years to get her to 750. We are waiting for one of the doctors to return so we can express that to them. WE JUST WANT TO GET HER HOME. We have been here 48 days and if it goes much longer we will have common law marriges wtih some of the doctors here and I'm gonna have to start asking for child support !!!(still have our sense of humor).
Right now we are waiting for a brain trauma rehab doctor to come and talk to us and hopefully give us a better understanding of what areas of her brain are damaged and what those areas functions are. We have been told that nobody will be able to give us an accurate diagnosis of what limitations she may or may not have, we will just have to wait and see what she can and can't do. This is obviously very frustrating for all of us and we will have to refocus our game plan that we discussed here in earlier posts given the current set of circumstances. We are trying our best to remain positive and strong for Maddie right now as well as into the forseeable future because that's what she needs.
Your continued support and prayers are greatly needed and very much appreciated.
Ann, Rick and Maddie
Sunday, March 22, 2009
Well here we go again. It's 6:30, Sunday evening and Maddie's feeds have been dropped down to 28ml/hour and is sitting at the same levels on her meds as she was when we posted on Friday.
For some reason it would appear that she just can't tolerate the feeds. We don't know if it's the rate at which they are being delivered or the fact that the feed just runs continuously and her body has been so used to rest. Remember prior to this visit she would rest 4 hours between each feed throughout the day and rest all throughout the night.
She began showing signs of discomfort on Saturday morning and progressively became worse upto and including now. She is miserable, easily aggitated and next to impossible to console. There have been some questions raised about maybe she is just sick of being in the hospital and needs to go home. As her parents we have seen Maddie mad and showing attitude and we wish that were the case here. She is in some kind of discomfort and we need to figure out what the source of that discomfort is. She actually gets worse when we hold her.There has also been the question of why not just feed her the way we were prior to the hospitalization and we have raised that question ourselves; however when a team of medical doctors including lung specialists and ICU specialists stand at your child's bedside and tell you that based on the condition she was in upon arrival that they fear if she refluxes or vomits it could enter her lungs and we could lose her, well it's quite simply a no brainer. A 1% chance of somthing of that magnitude happening is not a chance we are willing to take. We have seen her vomit just from trying to make a bowel movement.
So early this week is not looking as good as it was on Friday. Maddie will be having a cat scan in the morning to check for any kind of abnormality in her head that could have been caused from the time that she was in arrest. We are praying that is negative. After that, we're not sure there are any more tests that can be done.
Sorry for the bad news, please keep the prayers coming.
Thanks and God Bless
Ann, Rick and Maddie Moo
For some reason it would appear that she just can't tolerate the feeds. We don't know if it's the rate at which they are being delivered or the fact that the feed just runs continuously and her body has been so used to rest. Remember prior to this visit she would rest 4 hours between each feed throughout the day and rest all throughout the night.
She began showing signs of discomfort on Saturday morning and progressively became worse upto and including now. She is miserable, easily aggitated and next to impossible to console. There have been some questions raised about maybe she is just sick of being in the hospital and needs to go home. As her parents we have seen Maddie mad and showing attitude and we wish that were the case here. She is in some kind of discomfort and we need to figure out what the source of that discomfort is. She actually gets worse when we hold her.There has also been the question of why not just feed her the way we were prior to the hospitalization and we have raised that question ourselves; however when a team of medical doctors including lung specialists and ICU specialists stand at your child's bedside and tell you that based on the condition she was in upon arrival that they fear if she refluxes or vomits it could enter her lungs and we could lose her, well it's quite simply a no brainer. A 1% chance of somthing of that magnitude happening is not a chance we are willing to take. We have seen her vomit just from trying to make a bowel movement.
So early this week is not looking as good as it was on Friday. Maddie will be having a cat scan in the morning to check for any kind of abnormality in her head that could have been caused from the time that she was in arrest. We are praying that is negative. After that, we're not sure there are any more tests that can be done.
Sorry for the bad news, please keep the prayers coming.
Thanks and God Bless
Ann, Rick and Maddie Moo
Friday, March 20, 2009
Can you say Roller Coaster!Don't get too excited but the words "take her home" were just spoken amongst Maddie's plethera of doctors.
We are cautiously (and I cannot stress enough, causiously) optimistic that she could potentially come home early next week.
What needs to happen:
She is currently at 35ml/hour on her feeds. She needs to be at a minimum of 32ml/hour in order to not dehydrate. So the plan is to see if they can steadily increase her feeds and have her tolerate the increases. They don't want her riding the dehydration line. As far as the meds for withdrawal;we can administer those at home through her feed tube, provided they can ween her down to an acceptable level over the next few days (she currently has them delivered via iv).
So keep the prayers coming and your fingers crossed. She has had a pretty solid past couple of days and hopefully she continues that trend over the course of the next 2 or 3. Please keep in mind we were in a similar position at this time last Friday, not with going home but with feeling she had "made the turn" and than the bottom kind of fell out so to speak.
Nice to see her progressing and prayers being anwsered.
God Bless all of you.
Rick Ann & Maddie.
Wednesday, March 18, 2009
NUTRITION & FEEDS
So prior to entering the hospital Maddie had her issues with eating, however we had her maintaining her weight all though we have known we need to get more into her(she just can't tolerate more). A normal day of eating for her would be 3-250ml feeds at a rate of 200 ml/hour. She would get these feeds with a 4 hour break in between. It has taken us 2 years to get her to that kind of volume and that schedule without having her throwup, and as previously mentioned we had her maintaining her weight for about the past 6 months which in our view is major progress. 100% of her feeds have been through a feed tube that was surgically placed directly to her belly when she was just a few weeks old. She basically has a button or port next to her belly button that has a tube going into her belly. We hook a line up to that button and in go her feeds. The problem with pushing more feeds this way is the risk of her refluxing and than aspirating (fluid or vomit in the lungs) which for her could be disasterous. during this stay they have inserted a new feed tube using the same port, however this one goes too her stomach as well as her small intestine. The idea or logic here is to bypass her stomach and feed directly to the small intestine thus eliminating any chance of reflux. This is not going so well foe her. So far they have only been able to get her up to 45 ml/hour but had to stop as she was in some obvious discomfort and couldn't even sleep. They have done what seems like a million tests from x-raying every bone in her body to a GI consultation to an orthopedic consultation to try and figure the source of her discomfort but to no avail. At one point we were actually hoping she had a broken bone or somthing since that can be fixed and we would know what's wrong. The thinking is that her intestine just needs to adjust to the direct feeds and it could take some time. Today she is up to 30 ml/hour, they actually dropped her down from 33ml/hour cause she started to get fussy within minutes of upping the volume.
As far as weening her off of the methadone and atovan (anti-anxiety), they have put that on hold so they can just concentrate on feeds. Fussing from the lack of one of those would just cause confusion when trying to figure out why she's uncomfortable.
GOOD NEWS is she is doing well on the regular nasal canula and is not far off from her O2 settings at home. A very good indication that her lungs have returned to her normal baseline.
On a side note, one of Maddie's Doctors used to live next door to my Gram Lippitt on Duerstein St. His name is Peter, however he went by PJ when we used to swim in Gram's pool together. What a small world. Anyhow, he and all the other Doctors have treated Maddie and us like there own family and have been relentless in trying to figure out what the heck is troubling Maddie. Some prayers for all of them would be greatly appreciated as well.
A thousand thanks again to all for your continued thoughts and prayers. We will keep you posted.
Thank you and God Bless
Ann, Rick & MADDIE
Tuesday, March 17, 2009
Hello to all, unfortunately we have found ourselves in the situation where it is necessary to keep all of you posted on the day to day progress of Maddie. We are sorry if any of you have been left in the dark, however it has been difficult to keep up with the hospital and our own home let alone phone calls and text messages. We will try to keep this updated on a daily basis and are extremely appreciative of all of your thoughts and prayers.
Just to bring all up to speed: Maddie was fighting a pretty nasty head and chest cold the first week of February that wiped out her twin the previous week like no other cold we have ever seen. Maddie seemed to be holding her own as we were able to monitor her through her oxygen saturation levels in her blood and her heart rate via the monitor she is hooked up to 24/7 at home. On Saturday February 7th she took a very sudden turn for the worse and it was obvious that we had no option but to call 911. She was transported to Children's Hospital and arrived in severe respiratory distress with collapses in both lungs. At some point while trying to insert a breathing tube into her she went into cardiac and respiratory arrest but by the grace of God and the hands of so many wonderful doctors here, she was brought back quickly.
From the ER she was admitted to the Pediatric Intensive Care Unit where she remains to date. She spent 13 days on a ventilator basically in a medically induced coma so her lungs could rest. She was diagnosed with septic shock, pneumonia and RSV. In between arriving here and the present she has contracted some other bacterial infections which were caused by the various stages of her treatment.
Where she's at now: While her lungs have recovered from all the above described conditions, it seems every day there is a new obstacle that she is fighting through. She is still being weened off 2 major narcotics that were necessary during the ventilator stages so withdrawal is a daily issue. She goes back and forth between constipation and diarrhea. She has just about completely regressed from the progress we have made with her joint contractures over the past 2 years so minor aches and pains from stiffness and the lack of movement are an additional daily struggle for her.
Her prognosis: This visit in some sick twisted way may have been a blessing in disguise. It has been our goal to get her weight and body thickness to a point where surgery could be performed on her back that would increase her breathing capacity. For the past 6-8 months her lung Doctor has been discussing a breathing machine (V-PAP) we could use for her at night time to eliminate the number of breaths she takes on her own thus reducing the amount of calories she burns. Along with the machine she would need a procedure done in accordance with her current feed tube that would bypass her stomach and feed directly to her small intestine, greatly reducing her chances of aspirating while on the V-PAP at night. Introducing her to both would have required a 2-3 week hospitalization which we were reluctant to do. She has been introduced to both during this visit, but there have just been to many outside contributing factors to tell how she will handle either of them. We just need her to get her back to being Maddie before we will be able to tell. We are hopeful that once back to 100% she will tolerate both and be able to gain the necessary weight to get her to surgery.
It has been made clear to us by the Doctors that her body growing and her lungs not being able to grow in ratio are a concern so we really need her body to accept the V-PAP as well as the new feed tube as we are running out of options. So to answer the question that so many of you have been asking "what can you do, or what do we need";PRAYERS. Pray that her body accepts what they are trying to do for her. That's all we can humbly ask for.
The current focus is on her feeds. For some reason she is not tolerating them and she has the Doctors stumped. They try something different every day in attempt to rule out one thing or another. We are waiting for a GI consultation today to see what kind of input they may have. We're keeping our fingers crossed that they may add some insight to her current feeding issues.
As for the boys, they are doing good. They miss there sister however we're pretty sure they don't mind the extra wii time they are able to extract from there overly strict Grandparents and Aunts (just a joke Grandparents and Aunts, we are not judging).
On that note, how truly blessed are we to have the family that we do. They deserve so much recognition for the support they have given us. In fact, support does not even come close to descibing what they have done and sacrificed for us. We are so thankful for the help from everybody and while it is important for all of you to know and pray for what Maddie is going through, it is equally important for all of you to know and pray for what our day to day support team is going through as well. In a 24 hour period Maddie is only without family for an hour or two at most. Grandma and Grandpa get Nate off to school in the morning and hit the hospital in the afternoon (everyday). Mema is at the hospital every single night after her own work day and some days has gone from the hospital to our house or vice versa. Aunt Carrie's family has grown by at least one (Nathan) as they get him from school after spending mornings and early afternoons with Maddie (everyday). Aunt Carrie and Mema have even stayed overnight at the hospital so that we could have a couple "normal" nights as a family. Aunt Chrissy, with 9 month old twins, has been our daily lunch delivery girl at the hospital (even though I know it kills her to serve me, he he he) and is managing Ann's astronomical text message bill-Thank you. I know it's taboo to only mention a few names, and again all of you have done so much, we just feel that sacrifices of such magnitude ought not go unrecognized and they are critical support and should remain in all of our prayers so that they may remain strong and healthy throughout the duration of this saga. We need them!
I apologize for what surely sounds like a grim post, however it is reality and we just want all of you to be updated so we all know what we're praying for. Thank you again for your love,prayers and support and God's Blessing to you all.
Ann,Rick,Maddie,Nate,Zack,Luke and Louie
Just to bring all up to speed: Maddie was fighting a pretty nasty head and chest cold the first week of February that wiped out her twin the previous week like no other cold we have ever seen. Maddie seemed to be holding her own as we were able to monitor her through her oxygen saturation levels in her blood and her heart rate via the monitor she is hooked up to 24/7 at home. On Saturday February 7th she took a very sudden turn for the worse and it was obvious that we had no option but to call 911. She was transported to Children's Hospital and arrived in severe respiratory distress with collapses in both lungs. At some point while trying to insert a breathing tube into her she went into cardiac and respiratory arrest but by the grace of God and the hands of so many wonderful doctors here, she was brought back quickly.
From the ER she was admitted to the Pediatric Intensive Care Unit where she remains to date. She spent 13 days on a ventilator basically in a medically induced coma so her lungs could rest. She was diagnosed with septic shock, pneumonia and RSV. In between arriving here and the present she has contracted some other bacterial infections which were caused by the various stages of her treatment.
Where she's at now: While her lungs have recovered from all the above described conditions, it seems every day there is a new obstacle that she is fighting through. She is still being weened off 2 major narcotics that were necessary during the ventilator stages so withdrawal is a daily issue. She goes back and forth between constipation and diarrhea. She has just about completely regressed from the progress we have made with her joint contractures over the past 2 years so minor aches and pains from stiffness and the lack of movement are an additional daily struggle for her.
Her prognosis: This visit in some sick twisted way may have been a blessing in disguise. It has been our goal to get her weight and body thickness to a point where surgery could be performed on her back that would increase her breathing capacity. For the past 6-8 months her lung Doctor has been discussing a breathing machine (V-PAP) we could use for her at night time to eliminate the number of breaths she takes on her own thus reducing the amount of calories she burns. Along with the machine she would need a procedure done in accordance with her current feed tube that would bypass her stomach and feed directly to her small intestine, greatly reducing her chances of aspirating while on the V-PAP at night. Introducing her to both would have required a 2-3 week hospitalization which we were reluctant to do. She has been introduced to both during this visit, but there have just been to many outside contributing factors to tell how she will handle either of them. We just need her to get her back to being Maddie before we will be able to tell. We are hopeful that once back to 100% she will tolerate both and be able to gain the necessary weight to get her to surgery.
It has been made clear to us by the Doctors that her body growing and her lungs not being able to grow in ratio are a concern so we really need her body to accept the V-PAP as well as the new feed tube as we are running out of options. So to answer the question that so many of you have been asking "what can you do, or what do we need";PRAYERS. Pray that her body accepts what they are trying to do for her. That's all we can humbly ask for.
The current focus is on her feeds. For some reason she is not tolerating them and she has the Doctors stumped. They try something different every day in attempt to rule out one thing or another. We are waiting for a GI consultation today to see what kind of input they may have. We're keeping our fingers crossed that they may add some insight to her current feeding issues.
As for the boys, they are doing good. They miss there sister however we're pretty sure they don't mind the extra wii time they are able to extract from there overly strict Grandparents and Aunts (just a joke Grandparents and Aunts, we are not judging).
On that note, how truly blessed are we to have the family that we do. They deserve so much recognition for the support they have given us. In fact, support does not even come close to descibing what they have done and sacrificed for us. We are so thankful for the help from everybody and while it is important for all of you to know and pray for what Maddie is going through, it is equally important for all of you to know and pray for what our day to day support team is going through as well. In a 24 hour period Maddie is only without family for an hour or two at most. Grandma and Grandpa get Nate off to school in the morning and hit the hospital in the afternoon (everyday). Mema is at the hospital every single night after her own work day and some days has gone from the hospital to our house or vice versa. Aunt Carrie's family has grown by at least one (Nathan) as they get him from school after spending mornings and early afternoons with Maddie (everyday). Aunt Carrie and Mema have even stayed overnight at the hospital so that we could have a couple "normal" nights as a family. Aunt Chrissy, with 9 month old twins, has been our daily lunch delivery girl at the hospital (even though I know it kills her to serve me, he he he) and is managing Ann's astronomical text message bill-Thank you. I know it's taboo to only mention a few names, and again all of you have done so much, we just feel that sacrifices of such magnitude ought not go unrecognized and they are critical support and should remain in all of our prayers so that they may remain strong and healthy throughout the duration of this saga. We need them!
I apologize for what surely sounds like a grim post, however it is reality and we just want all of you to be updated so we all know what we're praying for. Thank you again for your love,prayers and support and God's Blessing to you all.
Ann,Rick,Maddie,Nate,Zack,Luke and Louie
Subscribe to:
Posts (Atom)
