Post CT Update:

So we just got the report from Dr. Ram about Mallory. Mallory"s Chest CT did show that Mallory has bilateral partial lung collapses. This will be fixed by placing chest tubes on both sides. We were informed that normally when a lung will collapse it will happen on the sides. Of course, with Mallory being so unique, hers have collapsed in the center portion of either side near her heart. As I write this they are placing her chest tubes, and they should show improvement for her within 24 hours, and stay in place for 7-10 days. The CT of Mallory"s head showed NO brain bleed or swelling. To quote Dr. Ram, "Nothing catastrophic has occured in Mallory"s brain. That is good because I was very concerned about that." They are still concerned about Mallory"s pupil reaction and will be placing what they call a "bolt" into the right side of her head. This is a tube that will monitor Mallory"s intercranial pressure and give them more insight into what is going on with her. We are relieved of this news but are still concerned ourselves. We have heard, only through the grapevine, that Mallory"s trach was touched while she was in CT and she grimaced and attemped to open her eyes. (which is a good sign if its true) We also would like to ask that everyone only believe information that are here on updates or that which has been told directly by immediate family. (This is only because we have heard of some incorrect information and we just want to make sure that everyone gets the correct information)

On another note, one of our family friends David Putnam occompanied Mike to go with Mallory do the CT scan. While there a code was called in the CT room. It was due to David collapsing. (Actually right near Mike so he could catch him) Luckily we were in a great hospital and care was available immediatly. David is now in the ER and will be moved to a room for observation and check for signs of a heart attack. So as everyone prays for Mallory we ask that you pray for David"s health, and his wife Rhonda who is so supportive of our family. We will also continue to update everyone on David"s status.

Thanks to everyone who has spent time with us at the hospital and for everyone"s continued prayers

The Smiths

12:00 Quick Update: The ICU doctor just came out and told us that the radiologist reviewed her chest X-Ray  look like she had a pneumothorax (collapsed lung). Dr. Ram did not see this but to make sure they have ordered a CT scan of her chest to look for a possible pneumothorax and/or a blood clot. While she is having the chest scan they are going to scan her head to look for possible bleeding. If the CT scan shows a pneumothorax then a surgeon will have to insert a chest tube to repair the collapsed lung. We are praying that all the results come back negative.

Today we were first in the rounds (we do not like that!!!!!). Mallory had an up and down night, the cocktail sedation that Dr. Ram  had Mallory on has allowed him to achieve a ventilator setting that he felt would be the best for her. However, the vent settings got changed early this morning, Dr. Ram didn’t seem too happy about this and changed them back to where he had them.  Mallory’s blood did become a little more acidic over night so full dialysis has been restarted (they were just pulling fluids off). The blood gases that had been up and down are now stable (guess the breathing treatment was the culprit). Mallory’s chest X-Ray showed improvements this was due to a combination of the new ventilator settings and the removal of fluids. About 6 am they noticed that Mallory pupils had become fixed and non-responsive, Dr. Ram was called and they stopped all the sedation. Upon examination this morning her pupils were responsive, “Sluggish” was the term use but we will take that. So the plan for today is to keep the sedation off (for now), have as little stimulation as possible and Dr. Ram will make ventilator settings if needed. Thanks again for the checking in and the multitude of prayers.

The Smith’s

Mallory has remained stable which is a good thing, she did try to wake up this morning and quickly became agitated so it was back to the sedation.  So everyone knows what we mean by agitated, Mallory has not been able to communicate with us so the only measurements that we can use are her heart rate and her blood pressure that raised up to a point that it is not safe for her. Dr. Ram got back today and has been working to try and get the ventilator set where he would prefer. He has stopped the breathing treatments even though it is helping this could be the reason her pre and post (breathing treatments) blood gas levels show such a massive difference. He has also changed her sedation to put her into a deep sleep (but not paralyzed) to get her breathing in sync with the ventilator. Dr. Ram also wants Mallory to have minimal stimulation, meaning he does not want us to talk to Mallory and allow her to rest. The nurses have been instructed also to not stimulate her, which will be very hard considering all the meds she is on! Even though Mallory did not wake up today we still feel we have been blessed with a miracle. The miracle of Mallory being with us despite all she has endured over the past 4 years!!! Thanks again for all the prayers and Merry Christmas!

The Smiths

Well just a few more hours and it will be Christmas, this is a great day to celebrate!!  My heart is heavy right now, Mallory is still critically ill and has no idea she has missed 16 days of what is going on in this world and that it is Christmas.  We need a miracle!!!  Every bit of good news is just a small piece of a miracle in the making, I just know it!!  The picc line has been removed and the central line has been placed in her chest.  She is resting comfortably and has remained stable throughout the day.  That is really all there is to report tonight, tomorrow is a new day and we look forward to some good news.  Please keep the prayers going for Mallory, specifically we need her lungs to continue to get well and for her to be able to come off the ventilator.  Thanks to everyone that visited today.

Mallory started waking up this morning, she became very agitated so they had to sedate her again. The good news is she was awake longer than any other time since she has been in ICU. It is very easy to tell the dialysis is doing the job, the swelling in Mallory’s hands have gone down a lot. Her labs were stable again which is awesome. The infectious disease Dr.’s were concerned because Mallory has been running a low grade fever. They feel the root cause is an infection at her PICC line so they are putting in a new central line in her chest. Mallory’s chest X-Ray’s are looking better and her lungs have continued to sound better. Not too much else has changed so we will see what tomorrow brings. We would like to thank all of ours and Mallory’s friends that have come to visit today. Special thanks to Brock and Danielle for a great lunch (thanks guys!). We would like to take this opportunity to wish everyone a very Merry Christmas! And I think everyone knows what our Christmas wish is!  Tomorrow is day #17 in the ICU…hmm!?

Merry Christmas,

The Smiths

Not much different from out earlier post. They started the dialysis back but this time it is to remove just excess fluid from Mallory. The Dr.’s told us this evening that Mallory is + 13 Liters of fluids since she has been in the hospital (almost 3 ½ gallons!). They are planning to take off 1.5 liters a day until she is balanced out. Mallory did open her eyes this afternoon and shook her head at Lisa (awe). The sedation start wearing off some this afternoon and Mallory she was getting a little agitated. We were able to talk to her and re-assure her and this did help. We setup her ipod so she could listen to some music (seems to be helping). We would like to thank Lori and Rebecca for great lunch, we would also like to thank Rochelle and Mathew for the wonderful dinner! Thanks guys all the food was delicious. We would also like to thanks all our friends for work and church that came to visit today! It’s great to see someone not wearing hospital scrubs!  And last but not least we want to sincerely thank all of the prayer warrior’s, we know without a doubt that this is the reason Mallory is still with us today!

The Smith’s

So, our extraordinary progress was somewhat deceiving. Mallory’s blood gas test did not match the oxygen sensor on her finger (blood gas test showed a lower oxygen %). They changed the sensor and moved to a different finger and her oxygen % was lower. This was somewhat deflating news however we can find positives in a sea of negativity. Mallory’s condition did not digress (as it had some day’s) and her lungs are sounding better (positive). They have stopped the constant dialysis and will change her to the regular 4 hour dialysis starting today. In Mallory’s current condition staying at least stable is a step in the right direction.

The Smith"s

Mallory"s calcium is still normal, good news. All the test are back that were done to try to figure out what caused the increase in the calcium level and ALL are normal. So, the theory is that the prednisone weaning probably caused the increase in her calcium. Her liver numbers are still stable (slightly high) but stable. The sedation weaning/changing is still happening so we are praying this will work for Mallory. Mike did tell the doctors that if she gets aggitated again instead of just sedating her heavily that we would like to try to talk to her and calm her down, so praying this works also. She does have a few blisters that have developed so I have asked them to check these out and treat/watch them. Mallory is still VERY swollen so they increased her dailysis settings to try to pull off more fluids, apparently this is a slow process. Her ventilator settings are stable so there is talk of trying to turn them down a bit. Thanks for all the kind notes and all the prayers and please keep them going. The Smiths

Good evening everyone, sorry for the late post but it was late before the Dr.’s made rounds tonight. We would first like to thank Brock and Danielle for bringing us such wonderful dinner thank you so much!! Lisa has taken the task of making most all the updates for Team Mal but she occasionally let me (Mike) make a few. Today they started turning off the meds that have Mallory’s body paralyzed, this is done to try and wake her up some. Well in normal Mallory fashion she started breathing over the ventilator in no time, her heart rate and respiration both increased so they had to start the meds back to calm her down. The Dr.’s said she was somewhat stable, no fever, liver and kidney numbers were ok. Her chest  X-Ray was the same as yesterday but the Dr. did say that the x-ray is not always a good indicator of how the pneumonia is doing, The oxygen she is requiring has decreased so that indicates she is getting a little better. They are increasing the dialysis to remove more fluid to help her lungs. One of the Dr.’s did express concern with Mallory’s mental status, meaning that she gets agitated when she starts to wake up.  The behavior she exhibits is counterproductive to her lungs, so they are changing sedatives to try and help with that. Ok so there is info about Mallory’s 13^th day in ICU now for a parent moment.  Right now I am sitting outside Mallory’s room looking at her through the window in her door. There is not much available space in her room because of all the machines that are keeping her alive so I sit outside watching a machine provide her every breath of life. As a parent I never thought that my scariest moment in my life could be a power outage, but for now it is. I thank GOD for the people who made these machines and the people that operate them!  Lisa and I both have prayed countless times that either of us could take her place in that bed but as Mallory has told us, GOD has a reason it is her. As a dad I am suppose to fix things and make it all better, but I can’t and it is literally breaking my heart to see my little girl lying there fighting so hard. Mallory has always had me wrapped around her little finger and she has always known that. All she had to do was to look at me with those beautiful brown eyes and it was over for me, she won!  So I am pleading with everyone who reads this to pray to our LORD in HEAVEN to heal Mallory’s sick body so everyone else can see those beautiful brown eyes again.

Mike

aka: Mallory"s Dad

The Dr.’s have yet to make rounds, it"s been a busy day for them in ICU today. The good thing is the Mallory’s has remained stable all day. As soon as they give us some information we will let you know.

Lisa

Sorry for delay in the post but the Dr.’s did not round with us until late today (good thing cause this is the only thing we do not like being first at). Mallory has remained stable all day and her labs have continued to improve. There will be no major changes with anything tonight, they will be starting the TPN feeds (to give her some very needed nutrition). They are also going to start back the tube feeds but at a very slow rate (assuming she can tolerate them). Mallory has not had a fever in the past 24 hours and her chest X-ray is showing improvement. We always look for good news (in the sea of not so good news that we have received lately) in the Dr.’s reports, Mallory’s liver number have continued to trend downwards with her bilirubin now at 3! This is amazing to us since the only anti-rejection medication Mallory is on is steroids. We know that sometimes good news comes down on the wings of angels,  well in this case our good news came down on the wings of “Air Tran”. Angela’s sister Emily flew here from Missouri  to help us with Mallory for a few days and since she got here we have had nothing but good news so we’re not saying that Emily can’t ever go home but she just might like Georgia for a while (Thanks Emily!). Many of Mallory’s friends and CHOA acquaintances (you know you are) came to visit Mallory today, Mallory was not able to say hello but she knew you were here to wish her well (thank you). We would also like to thank Maw Maw and Robert for a wonderful dinner! Thanks for all the notes, prayers and phone calls they are comforting for all of us.

The Smith’s

The Evening Update: Mallory’s acidic blood levels have continued to rise despite all the work that the ICU Dr.’s have tried. So the ICU Dr. installed a port in her neck (YIKES!) to start CVVH dialysis (when she had this done at CHOA she was awake but not this time). They did an X-ray for placement and the dialysis group is already in her room setting up the machine. Of course this is very very scary but we know that this will help Mallory get healthier much quicker. All the nurses have taken wonderful care of Mallory and we are grateful for ALL of them (THANK YOU!).  Mallory is still critically ill but with our faith and prayers (along with yours) Mallory will have unbelievable stories to tell as a testament of her faith.

The Smith"s

Here is our mid day report, the Dr.’s now have the ventilator where they want and Mallory’s body is working well with the new settings (Mallory’s body kept fighting the ventilator and breathing harder that it wanted her to). This afternoon they will determine where they will put the next port (or ports). They will add either one or two 3 port PIC C line for use. They will use one port for the TPN feeding for now and there is now a very strong possibility that they will also start CVVH (kidney dialysis). CVVH does differ from regular dialysis, CVVH is constant dialysis so there will be yet another machine next to her bed constantly filtering her blood (Mallory had this once before after her second transplant).  All of this is very unsettling (to say the least), Mallory’s kidneys are still functioning but new as well as they need to be (all the drugs) so the dialysis would be assist her kidneys. They have not confirmed that she will need dialysis but again the odds are very strong she will need it. One of the Dr.’s did say that she is headed in a familiar direction (with the current repository treatment) and it is a good direction. With everything that went on last night we forgot to thank our great friends Greg and Dana for bringing a wonderful dinner down last night.
Thanks to everyone again for the continuing prayers!

The Smiths

Wanted to give everyone a quick update, they completed the process last night of paralyzing and sedating Mallory to assist in controlling her breathing that will help lowering the acidic levels in her blood. One group for Dr.’s has come by but we will wait until the others Dr.’s see Mallory before we post any misleading diagnosis (hum…). We continue to ask for prayers for Mallory and we would ask that you pray for the Dr.’s and wonderful nurses that are taking care of her!

The Smith’s

See update below for how Mallory is doing today. I just thought I would share this:

Here is a link to send an email...

http://www.priceline.com/customerservice/email/Corp/emailanswer.asp?category=0&question=0&pagetitle=Send+us+your+feedback

Here is a copy of the email my wonderful friend Dana sent:

The nurses came in this morning and told us that they have identified the second bug. The name is Klebsiella pneumoniae Carbapenemase (KPC)-Producing Organisms. It is a bug that persons receiving long courses of broad spectrum antibiotics or with prolonged ICU stays are susceptible to.  You can Google it so don’t be shocked when you read about it and/or the treatment. Wow Mallory has had both! They actually started treating her for this yesterday so she will receive her second dose today. Now before we can go in the room we have to put on a New protective gown, wash our hands thoroughly and put on gloves. This is all to limit spreading the bug any further.  Many people (including us) would say that Mallory just can’t catch a break but we are confident that things will turn around for Mallory and she will show everyone how strong her faith is and tuff she truly is.

The Smiths

Mallory has been resting well most all day, they removed all the electrodes and completed their 24 hour study (checking for any signs of a seizure) and everything looks normal! They performed the trach procedure today, we have been told she will be much more comfortable. It is still hard as parents to see your child being assisted with each and every breath that they take. This afternoon the infectious disease Dr. told us they have been able to identified one of the “Bugs” from the bronchial scope. It is actually a mold spore called Pneumocystis pneumonia. The treatment has already started, the meds have some side effect so they will be watching her closely. There is still one more “bug” to diagnose and we are confident they will find out what it is. Thanks to all nurses for CHOA that came over to see Mallory, as Ms Dell (receptionist in 5E ICU) told one of the nurses “We are going to have to start charging you guys for coming over” (Thanks Ms. Dell). We would also like thank all our friends at First Citizens Bank for their generosity, times like these truly brings out the “BEST” in people!

The Smiths

Mallory had a decent night, her blood pressure dropped so they gave her a medicine and stabilized it. Because she cannot tolerate the feeds into her stomach they removed her feeding tube and replaced it with one that goes past her stomach. For the most part her labs are stable, some are up some are down. One of her blood cultures (from 2 days ago) grew a gram negative rod, medications had already been started to cover this yesterday. Dr. Ram said he believes the pneumonia in her left lung was probably caused by the length of time on the ventilator. So the plan today is to proceed with the trach and keep Mallory stable then play the wait and watch game. Mallory is still critically ill and needs our prayers.  We have learned (being in ICU for a week) that when they do rounds they start with the most critical patients then proceed to the least. Usually the Dr.’s  make rounds in Mallory’s room sometime after 1 pm. Today the Dr.’s came by at 8:30 she was the first patient seen .

The Smiths

Sorry for the late update but it’s been one of those days, nothing like a 12 am update anyway.  Mallory is still sedated and has yet to show any indications of waking up. They completed all the test from earlier today, The CT scan showed that everything in Mallory’s abdomen area was fine (no pockets of fluid). The scan of her chest revealed that there is now fluid in her left lung. Dr Ram performed a bronchial scope on her left lung a got a sample for testing. So our current diagnosis is pneumonia in the left lung also. This means Mallory has DOUBLE pneumonia! Pneumonia for anyone is tuff, but double pneumonia in a transplant patient that is immune-suppressed and is recovering from pancreatitis, well I think everyone can guess how rough it is on Mallory.  
Dr. Ram told us this evening that Mallory may get worse before she get better (healed!). With the latest diagnosis they are scheduling the trach for tomorrow instead of Friday. It will be the best for her recovery (not sure how she will feel about it when she wakes up). I don’t think any of us have slept much in the past week (except Mallory). Since we know Mallory is a strong young woman  we keep either a family member or friend in the room most all of the time (Joe you know which one you are!) just in case she were to wake up she would be comforted to know one of us was there.  Last night I demanded that Lisa sleep all night long and let me help take care of Mallory  (ok I asked her real nice and she said it was OK). We are splitting up the duties tonight so Lisa’s kicked back in the “comfortable” chair/bed/ torcher rack outside Mallory’s room.
I would like to thank everyone that can down to see Mallory today (her friends, our friends, teachers (from her old high school) and our pastor).  I know she can feel you near comforting her in this her time of need. I am compelled to thank our great friends Rhonda, David, Dana and Greg who dropped everything they were doing at work and rushed to the hospital during a time of crisis. We just hope there is some way we can return the favor.  Thanks for checking in and we will keep everyone up to date on Mallory’s road to recovery.

Mike

Today has truly been a day of emotional low’s and high’s. We’re not going to get into the whole story but one of Mallory’s Dr’s spoke with use this morning and scared the begebee’s out of us!
So Mallory is still a mystery, she is still on the ventilator with and increased oxygen %. They have a host of additional test ordered for today. They are going to do a CT scan , a EKG and another MRI (we think they just want more picture of Mallory for themselves). They are giving Mallory 2 more units of blood and keeping the reset of the medications the same. Speaking with Dr. Ram today they will be evaluation Mallory each and every day to hopefully get her off the ventilator. He did say that Friday will be the day they decided whether or not to trach Mallory. Like we said it has been a day of high’s and low’s.

 Thanks to everyone for the prayers for our sweet Mallory.

The Smiths

Sorry so late on the update but we have been staying very close to Mallory all day.  She is stable but could awaken from her slumber at anytime. We want her to remain calm when she wakes up so that’s why someone sits with her constantly. Her blood work has remained fairly stable today so little to no real changes. The infectious disease  Dr did tell us that Mallory has tested positive for the Rhino virus (that’s the common cold virus) and the treatment for that is what she is already on so we are good there, we were also told that her pneumonia is viral. Since Mallory’s kidneys are getting better the endocrinologist are giving her an IV medication to lower the calcium, this had not been prescribed earlier due to Mallory’s poor kidney function.  Mallory has had a host of friends visit her today, we know that hearing her friends talk to her and be by her side is some of the best medicine anyone can have. Thank you all for coming by and visiting with us. We are remaining confident the strength  Mallory has will exceed the obstacles she has and will face.  This is due to her faith in God and the prayers and support from all her friends (and ours also) and family.

The Smith"s

They started the test today to bring Mallory off the ventilator today. So far things have been going well, Mallory is breathing on her own now but she is still asleep.  All of the meds used to keep her knocked out have been stopped but before they can remove the tube from her she will have to be awake and follow commands. Someone is always in the room with Mallory talking with her and encouraging her to wake up.  There has been a steady stream of Dr.’s in and out of her room all day. The liver numbers are stable and her kidney numbers have even gotten better. The pneumonia has gotten better and the calcium levels are down too!  The reason for the high calcium is still kind of a mystery but we are talking about Mallory. There is a theory that this could have been triggered by the reduction of the steroids over the last month so the increase of steroids will hopefully help.  No one is really sure why the calcium is so high so they are watching the numbers closely.  All of the tests have come back negative so they are stopping all the antibiotics.  Mallory continues to amaze us with her strength to never give up courage. Thanks to everyone for all the prayers as we continue our praise of God’s ability to heal Mallory’s body.

Well today has been a mixed bag of good and not so good news. They attempted to remove Mallory from the ventilator today, she was able to breathe well for about 45 minutes before her oxygen levels dropped off so the re-sedated her and they will try tomorrow (pray she can maintain her oxygen levels). They have now said that the fluid in her right lung is definitely pneumonia, the cause is still not clear. Mallory’s labs were stable with her bilirubin of 8.8, her color is a tad better too. They have tested her for RSV (it was negative), H1N1 (results pending). The infectious disease Dr.’s have been called in, they have ordered yet more test and are making recommendations for med changes (antibiotics and anti-fungal). They are using an older technique to try lower her calcium, they are giving her more fluids and then Lasik’s to remove the fluids, then they will repeat the process again. Mallory will be having an MRI today (from her abdomen to the top of her head) to rule out lymphoma. We ask that you please get down on bended knees and pray for good results (good being NEGATIVE!). We will post the results as soon as we have them. The Dr.’s have also spoken with us about Mallory being on the ventilator for extended period of time, if (and I mean if) Mallory continues to require the use of a ventilator to breathe normally the will remove the breathing tube and place a trach  (tube in neck) . This would be needed assuming long term breathing assistance is required.  We are remaining faithful that GOD will answer our prayers, Mallory is a fighter and WILL win yet again.  Thanks for the prayers and notes.  Mike and Lisa