Mommy Of Two: Danielle’s Medical Fund
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On Christmas morning, my 20 year old niece, Danielle, was admitted to the Toledo hospital because she had Influenza A (which turned out to be Influenza B).
A series of massive and catastrophic events, including almost dying, a collapsed lung, almost amputating a leg and many other serious surgeries occurred. She’s had a few blood transfusions and may require a lung transplant. They had to manually breath for her (hand bag her) to keep her alive.
{Besides the above intro, all posts are from Danielle’s mother, Robin Pearson, unless noted.}
She was life flighted to Cleveland Clinic over the weekend. She is now in a medically induced coma at Cleveland Clinic Hospital. And she will be there for the next 4-6 months. (Detailed information is below this brief intro).
Danielle is married to her loving husband, Chris and they have 2 young girls, Leyah (2 yrs old) and Claire (4months old). Chris, my sister and brother-in-law (Robin and Greg, aka Danielle’s parents) will be living in Cleveland as much as possible during this time.
The Pearson Family need our financial and spiritual help. Some of us have estimated that, over the next 6 months, we need to raise $50,000 for Team Pearson.
This amount could change as Danielle’s situation could change too. Every penny raised will go directly to Team Pearson for all of their expenses related to Danielle’s recovery.
Thank you for your financial donation! Your prayers are more than appreciated.
Please read Robin’s daily and detailed Facebook updates, in chronological order, from Danielle’s first day of admission at Toledo Hospital.
Other updates will be posted after the intro.
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Update December 26th, 2019: From Robin:
Soon afterward admitting to Toledo hospital, her asthma was triggered and her health severely declined, including getting pneumonia.
She was placed in critical care and then ICU. She started with the flu, then had a couple of asthma attacks that her medicine did not help with.
She was sedated, intubated, pic line ran, given medicine to paralyze her... as she tried to pull out the lines even while sedated... then she had an arterial line ran. She steadily has gotten worse. She swelled up. She was taken off the vent bc she was too stressed and they had to bag her by hand.
Her right lung collapsed.
They put a tube in her chest and re-flated it. She had to be placed on a lung bypass machine. They wanted to send her to U of M or Cleveland.
U of M didn’t have a bed.
Cleveland clinic was worried she would not survive the flight there being bagged by hand.
Toledo hosptial has the machine but from what I understand, not the staff for it.
A special surgeon is meeting Danielle at Toledo hospital and will get her hooked up and take care of her until she is stable to be transported to Clevland clinic.
She was going to be life flighted to Toledo but one of the machines she is on can't be in the helicopter due to its weight.
The next day.
Danielle was not stable enough to survive the flight to Cleveland Clinic so the the call was made to have her placed on the lung bypass at Toledo Hosptial.
Danielle was transfered to Toledo Hospital about 11 last night and went right into the OR. She did ok with surgery and is now hooked to the lung bypass machine.
Toledo Hospital does not care for people on the lung bypass long term.
They just get a patient stable and move them to either U of M or Cleveland Clinic. We knew last night there was no room in Michigan and she would be going to Cleveland once stable.
As of this morning her BP and oxygen were better than yesterday. She is being weened off one of the BP meds and one of the heart meds.
She developed some air in her abdominal cavity and there was some talk earlier about doing a surgery to remove it but they decided it was not as bad as they first thought.
As with everything that may change. There was a mistake and the orders to send Danielle to Cleveland this morning accidentally were cancelled when she was transfered to Toledo.
The call has been made but she won't be going to Cleveland Clinic until it is confirmed she has a bed.
I was told it will be sometime today but they're not sure when. They're are also unsure if she will be life flighted or ambulances there.
The machines she is connected to are very heavy and only a certain life flight helicopter is big enough to care the weight.
Or maybe only one of them has the machine in it that she requires? I am a little confused on that part but as long as she is on a machine and gets were she needs to go safely I am happy for that.
It looks beautiful outside today.
I am hopeful she gets to fly to Cleveland.
She can mark helicopter ride off her bucket list...even though she won't remember it since she is sedated , it still counts.
Thank you for all your prayers and reaching out to our family and asking about bringing meals and helping with Danielle's and Chris's girls. It means a lot to all of us.
Trust me..we will need some help❤
Danielle is stable for now but is no where in the clear.
I have been told many times this is touch and go and how extremely sick she is by the medical teams at both St. Luke's and Toledo Hospital.
Please continue to pray for complete healing for Danielle. ❤❤❤❤❤❤❤
The next update on Friday Night December 27th:
Danielle took a ride to Cleveland clinic in the Life Flight helicopter.
Good news first...
Her fever is normal- it had been 103 and uncontrollable all day yesterday.
She was weaned of one BP medication and one heart medication. ❤
I may have mentioned that already in the previous post but I need to remind myself of the good. Her heart is strong❤ Her oxygen level and blood pressure increased.❤
Prayer warriors....this is where my baby is needing some high intense prayers.
The bad news....
Danielle is now in emergency surgery. Will be a 4 to 6 hour procedure.
The lung bypass machine is placed in her left leg.
There are two tubes. One in a vein and one in the artery.
Remember ...this machine kept my girl alive. She would be dead without it.
There was a complication with the tube in the artery. We will know more after surgery but Danielle either got a blood clot or the tube was pinched. She had very limited blood flow to her leg for over 18 hours.
They are doing what they can to save her leg.
The next 48 hours will critical.
They will have to remove her leg if it doesn't respond to the surgery they are doing right now.
The worst news....
Danielle also had lack of oxygen to her brain. They do not know for how long or the extent of the damage. That is something that they will check more in a week.
She will be kept on the vent and on the paralitic medication for the next week.
That is my understanding at this time.
I will update later tonight after she is out of surgery.
Anyone who has reached out to us offering meals and to watch Biggs and Bitty, we will definitely be taking you up on your offers. When we get a better idea of Danielle's recovery and a schedule, we will be reaching out. God bless you all for all your prayers and positive thoughts.
This mama is truly thankful for them all
Friday Night Update:
Danielle has had a long surgery to remove, replace and adjust various tubes and lines. Her heart was having some distress but seemed to be stable after her leg part of the surgery was mostly complete. The next 48 hours are the deciding factor on on her leg. If restoring the blood flow brings things back to normal, she is golden.
If things did not work restoring the blood flow, she will have surgery to remove her leg. There were no blood clots to her leg. This is a complication of having these tubes placed to put a patient on the lung bypass.
I was not aware of that until I was just explained it by the surgeon who moved things around. As I had said before, without this machine, Danielle would be dead.
Whatever the outcome of her leg will be, it is in God's hands.
A new line was placed in her neck, I forget the name but I believe it's for the lung bypass. It is one of the things they moved around. We were told that Danielle will be sedated and on the paralitic for a minimum of 10 days.
Please continue to pray for her. Things will be touch and go for a while. There is still the concern of lack of oxygen to her brain. I have not discussed this with the doctors since the initial team meeting we had when we first got here. I assume it will 10 days or more before we know anything as she must be on this bypass.
She is now stable as they can get her and I am very thankful for that. We are waiting to go see her before we go back to the hotel.
Saturday December 28 Update:
Sorry it is long. Last night Greg and I saw her once she was all situated from surgery. The large tube in her leg that caused the issues with circulation was placed in her neck. It is large and scary looking to me but works very well with the new placement. I am thankful for that.
The nurse was not very encouraging about her leg.
It was nothing that he said but how I read his body language when I asked about it. He also said she is as sick as a person can be. The machine...this lung bypass has a name. I may be screwing up the spelling as they nick named it ECMO? Stands for extra circulation muscular oxygenation...or something very similar. It was late so forgive my memory here.
What it does is oxygenate Danielle's blood so her lungs can rest and heal. It also helps keep her blood pressure up. This helps the heart as well. For a while her heart rate was 165 and her blood pressure was 71/50. By a while I mean hours. ECMO has settings. 10 is worse case scenario. 1 is the best. Danielle was 8 at 1am.
Danielle is having a hard time releasing carbon dioxide when she exhales and so they are helping her do that. She is on a machine and they keep track of how much help they give her. There is a monitor and they watch one particular number for this process. If you are at 100 that is bad. You or I would register about 22 being a healthy person. That is a good number.
She is 70.
The goal is to get her in the 30s as that is what they consider good for someone sick as she is.
Update from this morning...
First....all these prayers you are all saying for my baby are working. Please keep them coming. My girl would not be here without them. I sincerely mean that. God is so good.
That ECMO machine was set to 7. This is great news. Remember, the lower this number the better.
They are going to reduce/ween her from some medications and see how she responds. Todays goal is to get that ECMO set to 6. I have no information on the carbon dioxide#. I asked about Danielle's leg last. When we had that very first team meeting with her doctors , they were worried about her leg.
They brought up amputation pretty much right away.
I said something along the lines of ...I don't care about her leg, we can get her a fake one. I just need her to be here. They went on to describe the process of trying to save her leg. That it would swell very badly once blood flow was restored and the swelling is relieved by making incisions all over her leg and exposing the muscle and packing the wounds. The swelling could cause even more stress and make things worse.
I said....if things go well and you can save her leg, you will need to sew those incisions so there is hardly any scars because Danielle loves her short skirts and high heels. She will be mad about big scars They said they would know in 48 hours if they had to remove her leg.
I am counting today as day one.
Monday is the day we know 100% if her leg is healing. This morning the skin color on her leg was good. It is warm to the touch and has good pulses❤ Things look good so far but until Monday when I get an official word from the doctor I am not going to assume she is out of the woods.
My girl is a fighter.
That I know for sure. Maybe it is a good thing that she watched all those Power Puff Girl cartoons as a little girl. She used used to beat everyone up. I had to forbid her to watch them. She would run at Greg and yell ...POWER PUFF GIRLS ...and punch him in the balls. Alivia is pretty much a miracle baby with all the damage Danielle did to poor Greg
Please keep all your prayers comingthey are keeping my baby alive and improving. This picture is Danielle's daughters. Leyah is 2 ( I call her Biggs ) and Claire is 4 months (I call her Bitty). Danielle bought the girls these matching outfits for Christmas. Jessica dressed them in them yesterday. I said to Leyah...Oh my gosh!
You guys look like twinkies. She ran off and says...I know!
Hopefully we will bring Danielle home sooner then later so she can dress her babies in these outfits herself
Update Saturday Night:
Good news first...
Danielle's leg seems to be holding steady. Her nurse tonight just changed the dressing and she still has a pulse there. Finding a pulse in the top of her foot and the side of her foot means that the blood is flowing to that area. No pulse = No blood flow = No Leg I asked about how they close the incisions that were made to relieve the pressure. They will either be sutured or a wound vac is used.
They turned off the sedation today to see how Danielle responded. She moved her arms and legs and started to gag on the tubes in her throat. This did stress her some and her heart rate spiked so they put her back to sleep. This is a good sign.
Not the heart rate of course but her moving The ECMO is now at 6.5❤ That number I mentioned before that measures how much help she needs to breathe was 70 last night. Tonight it is 40 She has a feeding tube and they plan to start her on nutricianal feeding in the next day or two.
Danielle had joked with me about needing to lose weight and doing liquid diets a while ago. I will have to tell her this was kind of an extreme way to do that diet when she wakes up The bad news... Danielle had air trapped in the left side of her chest so a tube was placed to relieve the pressure. She has one already on the right side from when her lung collapsed on the day after Christmas.
Danielle's oxygen levels dropped steadily through the day. This means she has some blood loss some place. She was given a unit of blood . She went from 88 % to 98% They decided to do a CT Scan of her head, chest, abdominal cavity and her pelvis. They want to check for internal bleeding. This is a common thing for people in her condition.
There is a lot of swelling and that causes other damage sometimes. A special team had to be called to help with this scan as she is connected to a lot of stuff. All of it had to go with her to get the scan.
We are still waiting on the results. The repeat xray today showed no change from yesterday to her lungs. They are checking the areas that had the collapse and damage from the extra air. I was hoping that it would show improvement but it did not get worse so I am happy for that.
Her kidneys took a hit from the damage to the leg.
The lack of blood flow caused damage to the muscle tissue and that created toxins that went to the kidneys. They are pushing IV fluids to help flush the kidneys of these toxins. The CT scan was one with contrast. As her kidneys were a concern they couldn't do an IV contrast. IV contrast has been known to damage kidneys.
Their other option was to feed her an oral liquid contrast. She seemed to do ok with that.
Danielle needs prayers for healing to her lungs and to her kidneys now❤ If you're feeling good and not sick, please consider donating blood. The Red Cross is in need of blood all the time but the holidays tend to bring the donations to a trickle. I donated the Saturday before Christmas or I would go myself.
Ps..I will make my posts public so you may share them. The more people praying for Danielle the better❤
Sunday December 29th, 2019
Good news first....
Danielle's leg is continuing the trend of being stable. The CT Scan of her head and belly are good. Danielle has now been given her first nutrition since being here. The doctors were concerned about some possible issues in her belly so were waiting to do feeds until they had better results. I asked what she would get to eat. I told them that Danielle really liked ramon noodles.
The nurse said the little noodles are hard to get down the feeding tubes as you have to do one at a time so she's on a liquid diet. I got to comb out her hair and put it in 4 braids for her. I used to put her hair in braids every night when she was little ❤ because it tangles so easy. She had nothing but knots and all I had was a cheap comb. It's a good thing that she is sedated because she would have been whining and carrying on about me pulling her hair.
Tomorrow I am buying a good brush and detangling spray.
They bring Danielle out of sedation everyday to check her responses.
She gets all agitated with the throat tubes..she gags a little ... and does move her arms ,legs and head I am hopeful that the brain damage the doctors were concerned about are not going to be as bad as I thought they could be. The bad news... Danielle has had some set backs.
I am told one step forward and 2 steps back. If you have been following her story and praying for Danielle you know how true this is. Danielle has MRSA. Cultures were confirmed on the 27th but we did not find out until today. All her antibiotics were switched to fight this. Infectious disease doctors were in. Danielle has influenza B.
She started with influenza A. I am not sure if she had A, it cleared up and then she caught B, or if she had B this whole time. She is continuing to be given Tamaflu. She now has thick secretions in her lungs. They were able to suction some out but not all. New medicine is being used to help this.
Danielle had to have another unit of blood. Her oxygen levels were low again. That ECMO machine I talked about that oxygenates her blood is now set at 9. She started at 8, improved and was 6.5 and had to be put to 9. The machine only goes to 10. This is a bad thing. Danielle has 1 surgery for sure later this week.
This will be a tube that is surgically placed in the front of her neck. It will replace the tubing that is in her mouth and down her throat. This is actually good and bad. Bad as it is surgery but good because when they bring her out of sedation she won't be as uncomfortable as there will be no tubes in her throat to gag on. A possible 2nd surgery.
This one will be decided on by her team. Right now she is on a 2 tube system for ECMO. One tube is in her leg to remove her blood. It goes into the ECMO machine where it is infused with lots of oxygen.
The second tube then carries the blood back into her body and that tube is in her neck. They are thinking to put her on a single cannula (tube) system. It would be put under her collar bone on the left side. I am assuming this is a more efficient delivery system but I do not know for sure. The doctor let us know Danielle will be on this machine for a very long time.
He let us know he has a patient for that's on day 41. I took that to mean she will be one hers for weeks as well. The doctor said her lungs are very damaged. From the flu, the asthma attacks, pneumonia and the pressure damage from the breathing machine. This will take a long time to heal. Please focus the majority of your prayers specifically on her lungs healing and the eradication of the MRSA.
Thank you to everyone who has and continues to pray for Danielle. When I read posts that say you're praying , I respond with a heart so you know I read what you wrote, then I say a prayer for you God is good.
Monday December 30th Update:
Good news first...
Danielle had a good night last night. She seemed rested. ECMO is set to 8❤ She was at 9 last night. She did not need any blood transfusions. Initially a nurse had told me that the blood transfusions may be needed because of internal bleeding but in Danielle's case it isn't. When Danielle's blood is cleaned and oxygenated in the ECMO machine the blood is broken down at a higher rate then if the body was doing the work.
Then add in all blood draws she has every day.
She just can't make blood as fast as she needs to. I feel better knowing this need for blood is normal I asked about the reason for changing her ECMO from 2 tubes to 1. When a patient is on the 2 tube system they must stay sedated. The tubes are in movable areas. Danielle's are in her left leg and right side of her neck. The ECMO cleans and oxygenates 5 liters of blood in 1 minute.
Pretty much the entire blood supply Danielle has. If she was awake and moved too much and one tube was pulled out she would bleed out in a minute. Placing the single tube in her chest allows them to mobilize her chest and prevent an accidental disconnection. They can bring her out of sedation and wake her up. She could sit up. She could talk to us.
They have had patients able to walk around connected to their ECMO machines❤ What a joy it will be to hear my baby girl talk to me. I am prepared to listen to a whole lot of complaining about how many times she had her blood taken and what the heck happened to her hair! ( Don't tell her but the nurses were cutting out snarles with scissors before I got in there the other day and got her combed out and braided )
Can you say rats nest Having one area with a tube in her body instead of 2 cuts the infection risk by 50%. Danielle will have that tubing that is fed down her throat placed in the front of her neck some time this week. This will allow her to talk to us when she is awake. The doctors say her heart and kidneys remain in good shape❤
They will start the process today of removing all the extra fluids they pumped her with to stabilize her. She is pretty puffy and that is normal at this point. Danielle's leg continues to be stable with good pulses, temperatures and color. There is some damage to her leg that will present itself as she heals but that is not a major concern as far as I know.
Now the bad news... you knew it was coming.
I told you yesterday how Danielle has MRSA. Most everyone knows that's bad. I love my essential oils and I asked the doctor working last night if I find out which ones worked on MRSA would I be able to apply the oils to Danielle's skin. He told me no.
This morning we learned the MRSA is in her lungs.
This time I asked another doctor about using essential oils known to kill MRSA. This doctor said he was ok with using them. (Yes I am like a little kid. Mom said no so I asked dad and got a yes) Obviously essential oils do not replace anything they are doing for her. Rachel K Primeau is getting all the research on the success of using essential oils to kill MRSA so I can bring to the doctors here to share.
I plan to start Thursday with the oils as I need to go home and get them. If you've not been following Danielle's story from the beginning you need to know this little bit of information I am sharing with you to keep you on the same page as everyone else.
When Danielle was placed on the ECMO at Toledo hospital she was supposed to come here to Cleveland afterward for her long term care. There was some confusions and crossed wires and they canceled her bed here. When she was stable to move, U of M and Cleveland were not available to her as they had no room.
They wanted to send her to another facility. I was not happy. I was mad and not a happy mama that the best hosptial in the world wasnt the place my baby was going.
That reminds me I should probably call and apologize to that one nurse.
Finally I said ok. We can send her to this other hosptial. I don't want here to wait much longer. No lie. Within a couple minutes this same nurse calls me back and says Cleveland just called and they have a spot for her. Do you want her to go there still?
Of course I said yes. Cleveland clinic has the best of the best here. That is very important because of the bad news I have to share next. God knew she needed to be here at Cleveland. I knew this information late last night, shared with our family and now with you. The flu, combined with asthma attacks, pressure wounds from the ventilation machine and the MRSA have damaged Danielle's lungs severely.
We have major concern because with this much damage, scar tissue forms and the lungs can not work with scar tissue. Which means she won't be able to breath well at all. If at all. A double lung transplant is a very, very high probability for Danielle. I do not know when they decide a transplant is her best option.
When we know, I will let you all know. They say she is young so maybe she will heal well but they do not know for sure. You may be feeling very sad for Danielle right now. Please don't be. If ever a person needed to be at the right place at the right time...it is her. They do double lung transplants here at Cleveland Clinic❤
Learning about organ transplantation is a scary thing if you are new to it. Fortunately for Danielle, her family members are pros and are quit familiar with one kind of transplant. ❤ God gave our family some struggles in the past which have educated and strengthened our family for this day.
My brother needed a kidney in 2011...and since I used to beat him up all the time when we were kids and he owed me a hospital trip...I gave him my left kidney Any questions Danielle may have about anti-rejection meds and side affects she can call her Uncle Paul!
We are planning a 4-6 month minimum stay with the wonderful doctors and staff here at The Cleveland Clinic. As long as Danielle is on the ECMO she will be in ICU and not able to see her babies.
I have been playing videos of her daughters so Danielle can at least hear them since she is still sedated. She can watch them when she's awake Please continue to pray for her lungs to heal completely and also that no transplant will be needed. Please pray for Chris, Danielle's husband.
This has hit him so hard. I am worried for him. Please pray for Leyah and Claire. Mommy not being home is very hard on them. Especially 2 years old Leyah. She keeps asking.."Where's Mommy?" Please pray for Jessica, Alivia and Jon. Danielle's sisters and brother in law. They are home taking care of the girls and all 4 dogs.
They all became sort of instant parents to 2 kids. Please pray for Greg. Danielle is his Princess. She's daddy's girl. They're very close. He is having a hard time seeing his baby girl like this. Please say a prayer for my and Greg's parents. They are and will be watching the girls when Jessica, Jon And Alivia can't.
Please pray for Kalie. Danielle's best friend. These 2 have been best friends since they were 2 and a half and met in Ms. Beulah 's class at day care. As always, thank you for all your continued prayers and good vibes sent Danielle's way. They're working. She is getting more stable and we have good news every day.
God is good❤
A series of massive and catastrophic events, including almost dying, a collapsed lung, almost amputating a leg and many other serious surgeries occurred. She’s had a few blood transfusions and may require a lung transplant. They had to manually breath for her (hand bag her) to keep her alive.
{Besides the above intro, all posts are from Danielle’s mother, Robin Pearson, unless noted.}
She was life flighted to Cleveland Clinic over the weekend. She is now in a medically induced coma at Cleveland Clinic Hospital. And she will be there for the next 4-6 months. (Detailed information is below this brief intro).
Danielle is married to her loving husband, Chris and they have 2 young girls, Leyah (2 yrs old) and Claire (4months old). Chris, my sister and brother-in-law (Robin and Greg, aka Danielle’s parents) will be living in Cleveland as much as possible during this time.
The Pearson Family need our financial and spiritual help. Some of us have estimated that, over the next 6 months, we need to raise $50,000 for Team Pearson.
This amount could change as Danielle’s situation could change too. Every penny raised will go directly to Team Pearson for all of their expenses related to Danielle’s recovery.
Thank you for your financial donation! Your prayers are more than appreciated.
Please read Robin’s daily and detailed Facebook updates, in chronological order, from Danielle’s first day of admission at Toledo Hospital.
Other updates will be posted after the intro.
—————————————————————
Update December 26th, 2019: From Robin:
Soon afterward admitting to Toledo hospital, her asthma was triggered and her health severely declined, including getting pneumonia.
She was placed in critical care and then ICU. She started with the flu, then had a couple of asthma attacks that her medicine did not help with.
She was sedated, intubated, pic line ran, given medicine to paralyze her... as she tried to pull out the lines even while sedated... then she had an arterial line ran. She steadily has gotten worse. She swelled up. She was taken off the vent bc she was too stressed and they had to bag her by hand.
Her right lung collapsed.
They put a tube in her chest and re-flated it. She had to be placed on a lung bypass machine. They wanted to send her to U of M or Cleveland.
U of M didn’t have a bed.
Cleveland clinic was worried she would not survive the flight there being bagged by hand.
Toledo hosptial has the machine but from what I understand, not the staff for it.
A special surgeon is meeting Danielle at Toledo hospital and will get her hooked up and take care of her until she is stable to be transported to Clevland clinic.
She was going to be life flighted to Toledo but one of the machines she is on can't be in the helicopter due to its weight.
The next day.
Danielle was not stable enough to survive the flight to Cleveland Clinic so the the call was made to have her placed on the lung bypass at Toledo Hosptial.
Danielle was transfered to Toledo Hospital about 11 last night and went right into the OR. She did ok with surgery and is now hooked to the lung bypass machine.
Toledo Hospital does not care for people on the lung bypass long term.
They just get a patient stable and move them to either U of M or Cleveland Clinic. We knew last night there was no room in Michigan and she would be going to Cleveland once stable.
As of this morning her BP and oxygen were better than yesterday. She is being weened off one of the BP meds and one of the heart meds.
She developed some air in her abdominal cavity and there was some talk earlier about doing a surgery to remove it but they decided it was not as bad as they first thought.
As with everything that may change. There was a mistake and the orders to send Danielle to Cleveland this morning accidentally were cancelled when she was transfered to Toledo.
The call has been made but she won't be going to Cleveland Clinic until it is confirmed she has a bed.
I was told it will be sometime today but they're not sure when. They're are also unsure if she will be life flighted or ambulances there.
The machines she is connected to are very heavy and only a certain life flight helicopter is big enough to care the weight.
Or maybe only one of them has the machine in it that she requires? I am a little confused on that part but as long as she is on a machine and gets were she needs to go safely I am happy for that.
It looks beautiful outside today.
I am hopeful she gets to fly to Cleveland.
She can mark helicopter ride off her bucket list...even though she won't remember it since she is sedated , it still counts.
Thank you for all your prayers and reaching out to our family and asking about bringing meals and helping with Danielle's and Chris's girls. It means a lot to all of us.
Trust me..we will need some help❤
Danielle is stable for now but is no where in the clear.
I have been told many times this is touch and go and how extremely sick she is by the medical teams at both St. Luke's and Toledo Hospital.
Please continue to pray for complete healing for Danielle. ❤❤❤❤❤❤❤
The next update on Friday Night December 27th:
Danielle took a ride to Cleveland clinic in the Life Flight helicopter.
Good news first...
Her fever is normal- it had been 103 and uncontrollable all day yesterday.
She was weaned of one BP medication and one heart medication. ❤
I may have mentioned that already in the previous post but I need to remind myself of the good. Her heart is strong❤ Her oxygen level and blood pressure increased.❤
Prayer warriors....this is where my baby is needing some high intense prayers.
The bad news....
Danielle is now in emergency surgery. Will be a 4 to 6 hour procedure.
The lung bypass machine is placed in her left leg.
There are two tubes. One in a vein and one in the artery.
Remember ...this machine kept my girl alive. She would be dead without it.
There was a complication with the tube in the artery. We will know more after surgery but Danielle either got a blood clot or the tube was pinched. She had very limited blood flow to her leg for over 18 hours.
They are doing what they can to save her leg.
The next 48 hours will critical.
They will have to remove her leg if it doesn't respond to the surgery they are doing right now.
The worst news....
Danielle also had lack of oxygen to her brain. They do not know for how long or the extent of the damage. That is something that they will check more in a week.
She will be kept on the vent and on the paralitic medication for the next week.
That is my understanding at this time.
I will update later tonight after she is out of surgery.
Anyone who has reached out to us offering meals and to watch Biggs and Bitty, we will definitely be taking you up on your offers. When we get a better idea of Danielle's recovery and a schedule, we will be reaching out. God bless you all for all your prayers and positive thoughts.
This mama is truly thankful for them all
Friday Night Update:
Danielle has had a long surgery to remove, replace and adjust various tubes and lines. Her heart was having some distress but seemed to be stable after her leg part of the surgery was mostly complete. The next 48 hours are the deciding factor on on her leg. If restoring the blood flow brings things back to normal, she is golden.
If things did not work restoring the blood flow, she will have surgery to remove her leg. There were no blood clots to her leg. This is a complication of having these tubes placed to put a patient on the lung bypass.
I was not aware of that until I was just explained it by the surgeon who moved things around. As I had said before, without this machine, Danielle would be dead.
Whatever the outcome of her leg will be, it is in God's hands.
A new line was placed in her neck, I forget the name but I believe it's for the lung bypass. It is one of the things they moved around. We were told that Danielle will be sedated and on the paralitic for a minimum of 10 days.
Please continue to pray for her. Things will be touch and go for a while. There is still the concern of lack of oxygen to her brain. I have not discussed this with the doctors since the initial team meeting we had when we first got here. I assume it will 10 days or more before we know anything as she must be on this bypass.
She is now stable as they can get her and I am very thankful for that. We are waiting to go see her before we go back to the hotel.
Saturday December 28 Update:
Sorry it is long. Last night Greg and I saw her once she was all situated from surgery. The large tube in her leg that caused the issues with circulation was placed in her neck. It is large and scary looking to me but works very well with the new placement. I am thankful for that.
The nurse was not very encouraging about her leg.
It was nothing that he said but how I read his body language when I asked about it. He also said she is as sick as a person can be. The machine...this lung bypass has a name. I may be screwing up the spelling as they nick named it ECMO? Stands for extra circulation muscular oxygenation...or something very similar. It was late so forgive my memory here.
What it does is oxygenate Danielle's blood so her lungs can rest and heal. It also helps keep her blood pressure up. This helps the heart as well. For a while her heart rate was 165 and her blood pressure was 71/50. By a while I mean hours. ECMO has settings. 10 is worse case scenario. 1 is the best. Danielle was 8 at 1am.
Danielle is having a hard time releasing carbon dioxide when she exhales and so they are helping her do that. She is on a machine and they keep track of how much help they give her. There is a monitor and they watch one particular number for this process. If you are at 100 that is bad. You or I would register about 22 being a healthy person. That is a good number.
She is 70.
The goal is to get her in the 30s as that is what they consider good for someone sick as she is.
Update from this morning...
First....all these prayers you are all saying for my baby are working. Please keep them coming. My girl would not be here without them. I sincerely mean that. God is so good.
That ECMO machine was set to 7. This is great news. Remember, the lower this number the better.
They are going to reduce/ween her from some medications and see how she responds. Todays goal is to get that ECMO set to 6. I have no information on the carbon dioxide#. I asked about Danielle's leg last. When we had that very first team meeting with her doctors , they were worried about her leg.
They brought up amputation pretty much right away.
I said something along the lines of ...I don't care about her leg, we can get her a fake one. I just need her to be here. They went on to describe the process of trying to save her leg. That it would swell very badly once blood flow was restored and the swelling is relieved by making incisions all over her leg and exposing the muscle and packing the wounds. The swelling could cause even more stress and make things worse.
I said....if things go well and you can save her leg, you will need to sew those incisions so there is hardly any scars because Danielle loves her short skirts and high heels. She will be mad about big scars They said they would know in 48 hours if they had to remove her leg.
I am counting today as day one.
Monday is the day we know 100% if her leg is healing. This morning the skin color on her leg was good. It is warm to the touch and has good pulses❤ Things look good so far but until Monday when I get an official word from the doctor I am not going to assume she is out of the woods.
My girl is a fighter.
That I know for sure. Maybe it is a good thing that she watched all those Power Puff Girl cartoons as a little girl. She used used to beat everyone up. I had to forbid her to watch them. She would run at Greg and yell ...POWER PUFF GIRLS ...and punch him in the balls. Alivia is pretty much a miracle baby with all the damage Danielle did to poor Greg
Please keep all your prayers comingthey are keeping my baby alive and improving. This picture is Danielle's daughters. Leyah is 2 ( I call her Biggs ) and Claire is 4 months (I call her Bitty). Danielle bought the girls these matching outfits for Christmas. Jessica dressed them in them yesterday. I said to Leyah...Oh my gosh!
You guys look like twinkies. She ran off and says...I know!
Hopefully we will bring Danielle home sooner then later so she can dress her babies in these outfits herself
Update Saturday Night:
Good news first...
Danielle's leg seems to be holding steady. Her nurse tonight just changed the dressing and she still has a pulse there. Finding a pulse in the top of her foot and the side of her foot means that the blood is flowing to that area. No pulse = No blood flow = No Leg I asked about how they close the incisions that were made to relieve the pressure. They will either be sutured or a wound vac is used.
They turned off the sedation today to see how Danielle responded. She moved her arms and legs and started to gag on the tubes in her throat. This did stress her some and her heart rate spiked so they put her back to sleep. This is a good sign.
Not the heart rate of course but her moving The ECMO is now at 6.5❤ That number I mentioned before that measures how much help she needs to breathe was 70 last night. Tonight it is 40 She has a feeding tube and they plan to start her on nutricianal feeding in the next day or two.
Danielle had joked with me about needing to lose weight and doing liquid diets a while ago. I will have to tell her this was kind of an extreme way to do that diet when she wakes up The bad news... Danielle had air trapped in the left side of her chest so a tube was placed to relieve the pressure. She has one already on the right side from when her lung collapsed on the day after Christmas.
Danielle's oxygen levels dropped steadily through the day. This means she has some blood loss some place. She was given a unit of blood . She went from 88 % to 98% They decided to do a CT Scan of her head, chest, abdominal cavity and her pelvis. They want to check for internal bleeding. This is a common thing for people in her condition.
There is a lot of swelling and that causes other damage sometimes. A special team had to be called to help with this scan as she is connected to a lot of stuff. All of it had to go with her to get the scan.
We are still waiting on the results. The repeat xray today showed no change from yesterday to her lungs. They are checking the areas that had the collapse and damage from the extra air. I was hoping that it would show improvement but it did not get worse so I am happy for that.
Her kidneys took a hit from the damage to the leg.
The lack of blood flow caused damage to the muscle tissue and that created toxins that went to the kidneys. They are pushing IV fluids to help flush the kidneys of these toxins. The CT scan was one with contrast. As her kidneys were a concern they couldn't do an IV contrast. IV contrast has been known to damage kidneys.
Their other option was to feed her an oral liquid contrast. She seemed to do ok with that.
Danielle needs prayers for healing to her lungs and to her kidneys now❤ If you're feeling good and not sick, please consider donating blood. The Red Cross is in need of blood all the time but the holidays tend to bring the donations to a trickle. I donated the Saturday before Christmas or I would go myself.
Ps..I will make my posts public so you may share them. The more people praying for Danielle the better❤
Sunday December 29th, 2019
Good news first....
Danielle's leg is continuing the trend of being stable. The CT Scan of her head and belly are good. Danielle has now been given her first nutrition since being here. The doctors were concerned about some possible issues in her belly so were waiting to do feeds until they had better results. I asked what she would get to eat. I told them that Danielle really liked ramon noodles.
The nurse said the little noodles are hard to get down the feeding tubes as you have to do one at a time so she's on a liquid diet. I got to comb out her hair and put it in 4 braids for her. I used to put her hair in braids every night when she was little ❤ because it tangles so easy. She had nothing but knots and all I had was a cheap comb. It's a good thing that she is sedated because she would have been whining and carrying on about me pulling her hair.
Tomorrow I am buying a good brush and detangling spray.
They bring Danielle out of sedation everyday to check her responses.
She gets all agitated with the throat tubes..she gags a little ... and does move her arms ,legs and head I am hopeful that the brain damage the doctors were concerned about are not going to be as bad as I thought they could be. The bad news... Danielle has had some set backs.
I am told one step forward and 2 steps back. If you have been following her story and praying for Danielle you know how true this is. Danielle has MRSA. Cultures were confirmed on the 27th but we did not find out until today. All her antibiotics were switched to fight this. Infectious disease doctors were in. Danielle has influenza B.
She started with influenza A. I am not sure if she had A, it cleared up and then she caught B, or if she had B this whole time. She is continuing to be given Tamaflu. She now has thick secretions in her lungs. They were able to suction some out but not all. New medicine is being used to help this.
Danielle had to have another unit of blood. Her oxygen levels were low again. That ECMO machine I talked about that oxygenates her blood is now set at 9. She started at 8, improved and was 6.5 and had to be put to 9. The machine only goes to 10. This is a bad thing. Danielle has 1 surgery for sure later this week.
This will be a tube that is surgically placed in the front of her neck. It will replace the tubing that is in her mouth and down her throat. This is actually good and bad. Bad as it is surgery but good because when they bring her out of sedation she won't be as uncomfortable as there will be no tubes in her throat to gag on. A possible 2nd surgery.
This one will be decided on by her team. Right now she is on a 2 tube system for ECMO. One tube is in her leg to remove her blood. It goes into the ECMO machine where it is infused with lots of oxygen.
The second tube then carries the blood back into her body and that tube is in her neck. They are thinking to put her on a single cannula (tube) system. It would be put under her collar bone on the left side. I am assuming this is a more efficient delivery system but I do not know for sure. The doctor let us know Danielle will be on this machine for a very long time.
He let us know he has a patient for that's on day 41. I took that to mean she will be one hers for weeks as well. The doctor said her lungs are very damaged. From the flu, the asthma attacks, pneumonia and the pressure damage from the breathing machine. This will take a long time to heal. Please focus the majority of your prayers specifically on her lungs healing and the eradication of the MRSA.
Thank you to everyone who has and continues to pray for Danielle. When I read posts that say you're praying , I respond with a heart so you know I read what you wrote, then I say a prayer for you God is good.
Monday December 30th Update:
Good news first...
Danielle had a good night last night. She seemed rested. ECMO is set to 8❤ She was at 9 last night. She did not need any blood transfusions. Initially a nurse had told me that the blood transfusions may be needed because of internal bleeding but in Danielle's case it isn't. When Danielle's blood is cleaned and oxygenated in the ECMO machine the blood is broken down at a higher rate then if the body was doing the work.
Then add in all blood draws she has every day.
She just can't make blood as fast as she needs to. I feel better knowing this need for blood is normal I asked about the reason for changing her ECMO from 2 tubes to 1. When a patient is on the 2 tube system they must stay sedated. The tubes are in movable areas. Danielle's are in her left leg and right side of her neck. The ECMO cleans and oxygenates 5 liters of blood in 1 minute.
Pretty much the entire blood supply Danielle has. If she was awake and moved too much and one tube was pulled out she would bleed out in a minute. Placing the single tube in her chest allows them to mobilize her chest and prevent an accidental disconnection. They can bring her out of sedation and wake her up. She could sit up. She could talk to us.
They have had patients able to walk around connected to their ECMO machines❤ What a joy it will be to hear my baby girl talk to me. I am prepared to listen to a whole lot of complaining about how many times she had her blood taken and what the heck happened to her hair! ( Don't tell her but the nurses were cutting out snarles with scissors before I got in there the other day and got her combed out and braided )
Can you say rats nest Having one area with a tube in her body instead of 2 cuts the infection risk by 50%. Danielle will have that tubing that is fed down her throat placed in the front of her neck some time this week. This will allow her to talk to us when she is awake. The doctors say her heart and kidneys remain in good shape❤
They will start the process today of removing all the extra fluids they pumped her with to stabilize her. She is pretty puffy and that is normal at this point. Danielle's leg continues to be stable with good pulses, temperatures and color. There is some damage to her leg that will present itself as she heals but that is not a major concern as far as I know.
Now the bad news... you knew it was coming.
I told you yesterday how Danielle has MRSA. Most everyone knows that's bad. I love my essential oils and I asked the doctor working last night if I find out which ones worked on MRSA would I be able to apply the oils to Danielle's skin. He told me no.
This morning we learned the MRSA is in her lungs.
This time I asked another doctor about using essential oils known to kill MRSA. This doctor said he was ok with using them. (Yes I am like a little kid. Mom said no so I asked dad and got a yes) Obviously essential oils do not replace anything they are doing for her. Rachel K Primeau is getting all the research on the success of using essential oils to kill MRSA so I can bring to the doctors here to share.
I plan to start Thursday with the oils as I need to go home and get them. If you've not been following Danielle's story from the beginning you need to know this little bit of information I am sharing with you to keep you on the same page as everyone else.
When Danielle was placed on the ECMO at Toledo hospital she was supposed to come here to Cleveland afterward for her long term care. There was some confusions and crossed wires and they canceled her bed here. When she was stable to move, U of M and Cleveland were not available to her as they had no room.
They wanted to send her to another facility. I was not happy. I was mad and not a happy mama that the best hosptial in the world wasnt the place my baby was going.
That reminds me I should probably call and apologize to that one nurse.
Finally I said ok. We can send her to this other hosptial. I don't want here to wait much longer. No lie. Within a couple minutes this same nurse calls me back and says Cleveland just called and they have a spot for her. Do you want her to go there still?
Of course I said yes. Cleveland clinic has the best of the best here. That is very important because of the bad news I have to share next. God knew she needed to be here at Cleveland. I knew this information late last night, shared with our family and now with you. The flu, combined with asthma attacks, pressure wounds from the ventilation machine and the MRSA have damaged Danielle's lungs severely.
We have major concern because with this much damage, scar tissue forms and the lungs can not work with scar tissue. Which means she won't be able to breath well at all. If at all. A double lung transplant is a very, very high probability for Danielle. I do not know when they decide a transplant is her best option.
When we know, I will let you all know. They say she is young so maybe she will heal well but they do not know for sure. You may be feeling very sad for Danielle right now. Please don't be. If ever a person needed to be at the right place at the right time...it is her. They do double lung transplants here at Cleveland Clinic❤
Learning about organ transplantation is a scary thing if you are new to it. Fortunately for Danielle, her family members are pros and are quit familiar with one kind of transplant. ❤ God gave our family some struggles in the past which have educated and strengthened our family for this day.
My brother needed a kidney in 2011...and since I used to beat him up all the time when we were kids and he owed me a hospital trip...I gave him my left kidney Any questions Danielle may have about anti-rejection meds and side affects she can call her Uncle Paul!
We are planning a 4-6 month minimum stay with the wonderful doctors and staff here at The Cleveland Clinic. As long as Danielle is on the ECMO she will be in ICU and not able to see her babies.
I have been playing videos of her daughters so Danielle can at least hear them since she is still sedated. She can watch them when she's awake Please continue to pray for her lungs to heal completely and also that no transplant will be needed. Please pray for Chris, Danielle's husband.
This has hit him so hard. I am worried for him. Please pray for Leyah and Claire. Mommy not being home is very hard on them. Especially 2 years old Leyah. She keeps asking.."Where's Mommy?" Please pray for Jessica, Alivia and Jon. Danielle's sisters and brother in law. They are home taking care of the girls and all 4 dogs.
They all became sort of instant parents to 2 kids. Please pray for Greg. Danielle is his Princess. She's daddy's girl. They're very close. He is having a hard time seeing his baby girl like this. Please say a prayer for my and Greg's parents. They are and will be watching the girls when Jessica, Jon And Alivia can't.
Please pray for Kalie. Danielle's best friend. These 2 have been best friends since they were 2 and a half and met in Ms. Beulah 's class at day care. As always, thank you for all your continued prayers and good vibes sent Danielle's way. They're working. She is getting more stable and we have good news every day.
God is good❤
Organizer
Paul Patrick
Organizer
Whitehouse, OH