Monday, January 31, 2011 11:11 PM, CST

Elizabeth continues to be stable and has been making more baby noises lately. It sounds like she is trying to babble or coo. It catches us off guard casue she does it so randomly and its usually pretty loud, but SO cute. No major changes, still working on decreasing sedation and increasing her feedings. And waiting for lungs :)
 
  My main purpose in posting tonight is to ask for prayers and good thoughts for my family in West Virginia. My cousin's 1 year old son, Zayden suffered a head injury and is critical condition. They had to do surgery to remove part of his skull and are waiting for the swelling to go down. I know all of your thoughts and prayers have gotten us to where we are, and I hope that those same prayers and thoughts will help him recover quickly! Thank You!

Saturday, January 29, 2011 2:50 AM, CST

No major changes. The infection she had seems to have gotten under control, the cultures showed again MRSA (she has had this show up numerous times since September). Her oxygen is still at 45% and the went down a little on one of the vent settings. They also went down by 1 on her Fentanyl drip since over the past 2 days she has not required any extra sedation!! That in itself is awesome, going from days of needing 20+ extra doses to none is amazing. So they will wean down very slowly on the sedation to point that she is comfortable and still stable. She is stil having alot of trouble with her feedings, everytime they try to increase them her belly gets huge and they have to go back down on the amount. She has been moving around alot but still not opening her eyes. We are hoping that as the sedation meds are decreased she will be more awake and open her eyes.
I cant believe that January is almost over!  This time last on the 29th I was having my gallbladder removed, and Matt was being trained on oxygen and the "leaving NICU" plans. Crazy how much has happened in a year. Matt and I have learned so much about being parents and caring for our precious little figher. We are so lucky to be have been chosen as her parents, it has been and continues to be a difficult journey but we are lucky to be here.
  Just wanted to ask for thoughts and prayers for all the kids back home and here that are sick. I have been reading on Facebook SO many kids that are sick having breathing problems, FLU, RSV and all kinds of other things. Maybe thats normal and I just never really paid attention to that kinda stuff until now. But I know how stressful it is and hope for a quick recovery for all of them!! Make sure you are washing/sanitizing everything and keep those germs from spreading :)

Wednesday, January 26, 2011 11:21 PM, CST

Still stable, they attempted to wean down the oxygen again... to 45%, which is the amount of oxygen she was at home on, but her vent settings are still extremely high. She did well with that most of the day, but this evening her saturation started dropping some so she is back up to 55%~good try, she just doesnt want it that low. Other than that she is doing well, her sedation seems to be good, she has required less and less extra doses to keep her calm/stable. So that is a good sign.  I feel so anxious, I want so badly for her to get lungs while she is in a stable place. I know that will help her with being able to tolerate surgery and hopefully make recovery easier on her. I dont know if I can take her getting back to the place she was before we got to Texas, the minute to minute worry of wheter or not her saturation was going to drop and not be able to recover.
But I am grateful for where we are, and I cherish each minute even though she is not very responsive, she is here and doing "ok" and we just need to keep her this way until its her turn.  I have no control over what is going to happen, so stressing and freaking out about it won't make it happen any faster or make it any eaiser no matter how things go.
  Please keep the family of baby Roman in your thoughts/prayers, he became an angel earlier this week. I never met his family but my Mom meet his Mom during our stay at the Ronald Mcdonald House in Nashville.

Monday, January 24, 2011 8:14 PM, CST

Apparently one of the nurses from the weekend felt strongly that Matt and I were close to our "breaking point" and requested that the Transplant Team arrange a meeting with us. So today we had a meeting with the team, our nurse, the ICU Dr, and the ICU Dr that is now Elizabeth's primary. It was a good opportunity to discuss everything and ensure everyone was on the same page as far as her care. And allowed us to vent some of our frustrations and concerns. Even though we had pretty much resolved our concerns by getting a primary Dr and nurse schedule, I think it helped that Transplant Team is aware of the issues we were having. We are now going to have weekly meetings to be sure that everyone is on the same page.
Elizabeth had a pretty stable day, her oxygen was turned down from 55 to 50% and her saturations are still 95-100. So the infection doesnt seem to be really bad or affecting her respirtory system. But so far the only culture that has grown anything is from her trach. It is still growing so it hasnt been determined what exactly the infection is yet. But due to her history of different stuff, she was started on IV antibiotics that has helped in the past. She had a few fevers this morning but has been ok this afternoon/evening. Dr Mallory with transplant, said he does not feel that this would affect transplant at this time. He says based on how she is doing he doesnt think the infection is too concerning. He does want her to get a 2nd FLU shot once this infection is cleared up. And she is due again for her RSV vaccination on Feb 5th. Poor kid still has to deal with the "regular kid" stuff on top of all the "sick kid" stuff. She got her 12 month vaccinations last week ~ NO FUN!! But we need to try and get her as much immunity as possible prior to transplant, because after she will basically have none.
Also during physical therapy they have started trying to let her sit in a reclined chair, so that she isnt laying down flat all the time. We are still apprehensive about it since she has to be moved so much and her vent setting being so high. But transplant team recommended it so we are gonig with it for now. She is still so drugged she doesnt open her eyes or anything, so its basically us putting her in a chair and her just sleeping there for 20 mins.
Anyway~ Still waiting for lungs and trying to stay sane.. Thats about it.

Monday, January 24, 2011 10:15 AM, CST

Another infection for sure. The trach culture is again growing bacteria. Her CRP level (the number that shows infection if elevated above 1) went for .05 to 15 and her WBC count is higher.  Could this kid PLEASE get a break! She had random fevers all weekend. She was started on antibiotics today so hopefully it was caught early this time and can be taken care of quickly. We are not sure where this puts her as far as transplant, they could decide to make her inactive due to the infection until it clears up. Thankfully she still seems stable as far as breathing goes, hopefully she remains that way.

Sunday, January 23, 2011 12:27 AM, CST

The newest issue is Elizabeth has had a slight fever all day. So we dont know whats going on with her, if its another infection or what. They did blood, trach, and urine cultures again. So we will wait to see what/if the cultures grow anything. Her oxygen requirement/saturation has remained stable, so that is a good sign. Hopefully the fever isn't anything major. The new plan to change her sedation meds every day seems to be working well, and the Dr who assigned herself as the primary has done an awesome job of ensuring that the other Doctors dont make changes to her plan :)  So basically, she is still stable, no more crying spells but she also has not had as many awake spells.
Also tonight, I woke up from a nap to see yet another "new to Elizabeth" nurse. I was a little annoyed and went out and asked to speak to the charge nurse. I explained that we were concerned about the nightly change in nurses and would really like to have some kind of consistancy in scheduling. She seemed very apologetic and even moved the nurses around tonight so that Elizabeth had a nurse who has cared for her numerous times. She asked us to list the nurses who have cared for her the most, and we were comfortable with. So that they can be added to a list as her primary nurses. I was very pleased with the way it was handled.

Friday, January 21, 2011 5:32 PM, CST

We learned earlier today that Elizabeth got an offer for lungs around midnight last night. The Transplant team worked for 12 hours with the Donor's hospital to try and ensure the lungs were in the best shape for Elizabeth. Unfortunately they were not able to adjust the vent settings to get good enough results to feel confident in transplant. We now know that Elizabeth is at the top of the list, based on the information that is given when an offer is made. We are not totally disappointed since Elizabeth is in a stable place right now, I would rather they hold out to as close to perfect lungs as possible.
Knowing she got an offer, makes the reality of the loss of another family even more obvious. We are sad for the family that has lost their precious baby. Please keep the family that lost their child in your prayers and thoughts. We do not know if any other information on the child or if other organs were able to be transplanted. But we hope the family finds comfort in knowing they made a choice that could change so many lives by donating.

Friday, January 21, 2011 12:05 AM, CST

The decision was made to adjust her sedation meds again, we will see how that works out for her. They increased them a little and have decided to rotate her as needed meds between 3 different, that way she doesnt get used to the same one all the time.  We also have asked that one Dr be assigned as primary so that as the Drs rotate, her care doesnt have to get changed with every new person who has a new idea. Its good to have new "eyes and ideas" but at the same time, we need a plan. Right now surviving is the main goal until transplant, and if they keep messing with things they could cause her to have a major set back. We just need to be sure all the changes that are made are necessary and the best option, not just being done because they feel the need to do something. Sometimes nothing is best thing to do, and in the case of her ventilator and oxgen settings, thats is definately the case. And its looking more and more like that is the case for her sedation. Find a stable point and let it be. And as of today, they have decided that listening to us regarding her feeding schedule is the best option, so they will slowly increase her feedings instead of pushing her. I wish they would have just called Vanderbilt, they could have told them the same thing we have been telling them this whole time. I think the ICU, transplant, and pulmonology team gets our frustration after today and are trying to ensure that everyone is on the same page.
She was calm and awake alot today and didnt have a crying/sleepless spell until tonight around 8pm. Not sure whats going on with that, but she eventually calmed down, after getting a dose of ALL meds available including tylenol. Hopefully it will get better as her medication schedule gets worked out, and she gets used to being awake. We are trying to work on getting a normal awake/sleep schedule for her. Keeping lights on, noises and stimulation during the day and calm, quiet at night.
Elizabeth got her 12 month vaccinations today. She did not get 2 of the normal 12 month shots since they are live. She cant get them because of the possiblitiy of getting an offer within the next 30 days (hopefully sooner than later). Her immune system will be suppressed and she would not be able to fight the live vaccinations. She did well with the shots, they gave her a dose of ketamine before and she slept through them. She has been more awake and opening her eyes alot. Physical therapy stops by almost everyday and trys to work with her to make sure she is moving as much as possible. And occupational therapy has also started doing oral therapy with her, where they make sure she is still trying to use her mouth, and face muscles. That way she will hopefully one day be able to get on track with eating normally. She still hasnt really taken her pacifier but we work with her alot on that.
   Other than that just continuing to wait.

Thursday, January 20, 2011 2:28 AM, CST

So the awake periods I wrote about last night, have now turned into periods of crying and sleeplessness. Earlier today Elizabeth started crying, out of no where, for no apparent reason. And Elizaebth is not a baby who crys for no reason. She is usually really great and only cries when something is wrong.  So we are not sure if she is hurting, uncomfortable, or just exhausted. She does it randomly and then stops. They have weaned down some of the sedation over the past few days, and she has been having the feeding issues, on top of obvious teething and now a major diaper rash, and of course the massive amount of pressure the vent is putting into her lungs. I mean she has tons of reasons to be uncomfortable, so I guess I shouldn't be surprised but it still doesnt make it fair for her to be so miserable.  She is still on  a fentanyl drip, pentabarb scheduled every 3 hours and as needed doses, clondadine patch, metadone and ativan. So I dont see how she could possibly be hurting with all those drugs, but at the same time I dont see how she is awake either on all those drugs. Its stressing me out! They keep telling me that she will be uncomfortable as they wean down sedation, but there is a difference between uncomfortable and miserable. She looks pitiful, and doesn't seem to be resting at all. She doesn't have a true sleep schedule and seems to have to have medication to get to sleep. She fights sleeping and when she does sleep its not even an hour before she is awake again. She keeps rubbing her eyes like she is tired and yawning alot. We are concerned that she may be having some withdrawl symptoms from where they have weaned down some of the sedation already.  I don't claim to know the answer to fix the issue, but there has to be a better approach then what is happening right now. Guess we will discuss it in the morning during rounds when the doctors who can make decisions are on, the people on tonight seem a little lost. And for some reason we keep getting random nurses at night... I HATE not having a consistant rotation of nurses who can get to know Elizabeth and her needs. I understand staffing and all that jazz, but when multiple nurses that have taken care of her before are working it makes sense to me to assign them to a kid they already have cared for, especially a kid who is here long term. Its just been the past 4 or 5 nights that this has happened but it drives me crazy. I always worry when someone "new to Elizabeth" is on. She is a special case and it just makes me more confident in their ability when they have cared for her multiple times. Sorry for the ranting, but thats our life these days :)

Tuesday, January 18, 2011 9:07 PM, CST

Elizabeth was much more "awake" today. They decreased some of her sedation and spaced some other meds out so that she has more periods of being awake. She tolerates most of the time, basically her awake time means she is moving her legs and throwing her arms around. Today she had her eyes open more often, by open I mean barely open squinting at us but we will take what we can get. Her nitiric oxidie was stopped on Sunday and she has done well off of it. They were also able to stop the dopamine since her bloodpressue is remaining stable. She is still on the high vent settings and requiring 55% oxygen, but her saturations are staying above 95. So she is doing well considering how sick her lungs are. I know is sounds strange to say that she is making all this progress and it may look like she is "getting better". But the only reason she is not unstable is becasue the ventilator is doing all of the work and basically keeping her lungs open and working right now. She continues to have problems with increasing her feedings to her goal rate, so that is fight everyday. We have to pretty much fight daily with the ICU Dr about not trying to increase it too fast, this is the same issue she had at Vanderbilt. I am trying very hard to remain calm, but I am on the verge of loosing it on the next person I have to argue with about this.
  The surgeon came by today to meet with us, Matt met him when we first got here, but I had never gotten a chance to talk to him. We were able to ask questions about the transplant surgery, and the possibility of the aortapexy. We also discussed the surgeon's concerns. Not sure that I feel any better about the transplant after talking to him, I think I am alot more worried than before. But Matt seems to be more reassured by the conversation.  He said that he is concerned with Elizabeth's size, since her chest is small he thinks she will need lungs from a child that is about 6 months old, and then there is a concern about her healing after surgery since she has been on a ventilator for so long on top of being on chronic steroids. We discussed too many things to write about and too many things that I prefer not to discuss again. Its hard hearing about how things can go wrong. We are at a point where this is our only option so I need to hang on to all the hope I can.
Anyway, other that nothing eventful happening here. We have pretty much taken over doing her trach care, giving baths, changing linens, and diapers. They have discussed trying to let us hold her but neither of are really sure that its a good idea with the high vent settings. We prefer not to "rock the boat". I think the Drs are pushing for it thinking it will make us happy, but we both prefer to not push her too much and if that means not holding her so that she can remain stable we are ok with that. But we will see how the next few days go. As of yesterday we have been here 1 month, some days it doesnt seem that long, and others it seems like we have been here forever.

Saturday, January 15, 2011 10:54 PM, CST

Not much happening here in Texas. Elizabeth remains as stable as she can be all things considered. Hoping to wean totally off nitric oxide tomorrow (Sunday). And just stay the course until we get THE CALL. She has been on the list for a little over a week, and the wait makes it seem like months. I guess before she got on the list we always had something to work towards,getting her oxgyen weaned down, getting the feeding tube, getting the trach, getting transported, getting insurance approvals, things seemed a little more controlable because there were actaual "things" that could be done by the people around us or by us . If that even makes sense. Now none of us have control of anything, its totally up to a higher power, when or even if Elizabeth will get lungs. I try not to think about the IF part, I always worry about her making it through the surgery, and about rejection and infections after transplant. But in all reality there is a chance that lungs won't become available in time. But only time will tell, and Elizabeth is doing ok right now, so I will try not to stress over that until I need too.
Hope everyone is having a great weekend. We wanted to pass on to everyone to keep little Brynlee and her family in your thoughts/prayers. She just got home from Cincinnati Children's after living months there for her bone marrow transplant. Her family is from the Chattanooga area, and we have become internet friends. SO happy and excited for them to be home!

Thursday, January 13, 2011 6:07 PM, CST

Again, nothing really major to tell. Still working on weaning her nitric oxide down and getting her dopamine (controlling her blood pressure) down. Her oxygen saturation has been great, and they have weaned her oxgyen down more to 55%, so that is good news. She is still on the really high vent settings it helps keep her avaialble aveoli popped open so that she can stay oxgenated well, since her main problem is not having enough aveoli. Still on the antibiotics for the UTI. The anitibiotics for the previous infections with the trach have been stopped but she will remain on an every other day dose just to try and prevent any infections from flaring up.
Other than that we wait!! Some people have asked me questions about the transplant as far as how things work, and "the plan". So for those intersted I thought I would give a quick run down of what will happen.
Most people know that for someone to donate organs, they have to be declared brain dead, and then a family member must consent to donating organs. So the donor will be kept on a ventilator until consent is given, and the organs can be removed. Once the consent has been given, a coordinator at the donor hospital will put the donor's height, blood type, age and other inforamtion into the UNOS database. Then it will match them up with people waiting for transplant. Matches will be based on chest size, height, and blood type O for Elizabeth. Elizabeth is listed as accepting offers from 2000 miles away, so her lungs could come from anywhere in the US.  The first person on the list will be made an offer, we do not know where on the list Elizabeth is listed, but from what I have been told she is the only child in her age group/size listed here at Texas and no one is listed at St Louis right now, so her chances of being high on the list are good. In our case, our Transplant Coordinator will be contacted, and they will pass the information of the potential organ on to the surgeons and pulmonoloigst who will determine if the organ seems like a good match and they will also be sure that Elizabeth is in a good place for transplant. If all is looks good they will accept the offer. Then the coordinator will contact Elizaebth's nurse to start getting her prepped for surgery, we will be contacted at that time either by the pager, by phone, or most likely the nurse will tell us since we are always here :) Then one of the surgeons from here will go to the donor hospital (depending on location he will be driven/flown). Once the Surgeon visualizes the lungs and removes them he will determine if they are sill in good shape and working properly. At the same time Elizabeth will be taken to the OR and continue to be prepped for surgery. ~~~IF at any point even once the lungs are brought back here to Texas, it is determined that they functioning of donor lungs have started to decline or they just dont seem to be right anymore the transplant can and will be canceled. So we have to be prepared for these "dry-runs". It will be devastating but at the same time we would much rather know that she is getting good lungs instead of chancing transplant with some that may not be the best. ~~~ So once the lungs are here and Elizabeth is ready the transplant surgery will begin. Time is extremely important during alll of this the lungs have to harvested and transplanted within a certain timeframe usually less than 6 hours. And the surgery itself is lengthy. We have been told that waiting is so difficult and then as soon as she gets an offer, things go so fast that we will be in a bit of shock. After surgery she will be brought back to the PICU to recover, she will have 2 nurses for the first 24 hours to care for her, and then 1 nurse assigned just to her until she is stable. The goal will be to get her off of the ventilator as soon as possible so that she can start using her new lungs, and the hope in our case is that she can get rid of her trach as soon as possble as well. She may come out of surgery without it if all goes well and just have a regular vent tube down her throat.  But we wont know until the surgery.  So that may be too much info for most of you, but I just wanted to be sure everyone had a good idea of what to expect. You can find more info on the UNOS website an Texas Childrens website.
  Tonight I want to ask for prayers and thoughts to all of the families of organ donors. As I sit here waiting for Elizabeth's chance at life, I cant help but feel a little guilty knowing that another parent is being faced with the death of their child. I hope and pray that who ever Elizaebth's donor is, does not suffer, and has experieced love beyond measure in their short life. I hope that the family can find comfort in knowing that their baby will give my baby a chance at life, she will always be loved and cared for by MANY. I also ask that each of you take the time to think about and discuss organ donation with your families and friends, it is not an easy decision but if your wishes are known it will make it easier for them. You can sign your driver's licesne or register online.  You could save up to 8 lives by donating, you could save someone the same way we are hoping someone saves Elizabeth.

Wednesday, January 12, 2011 3:03 PM, CST

Nothing new really going on here. Infection seems under control, nothing grew from trach or blood culutres. So she will finish her meds for the UTI/VRE infection.

Monday, January 10, 2011 12:20 AM, CST

Elizabeth again has an infection, over the past few days she has had a few fevers. She has a urniary tract infection due to having the foley catheter, so they have started antibiotics and removed the catheter. After more cultrues it was found that the type of infection is VRE (vancoymicn resistant) basically is an infection that has some resistance to very potent antibiotics and needs to be specifally treated. The only "good thing" so far is that it DOES NOT affect her being listed, unless things get worse. Just to rule out any other infections, they did more trach and blood cultures. Her trach culture came back clear and still waiting on the blood culture. Her oxgyen needs/saturations have been good, but her blood pressure has still been very low and the medication for it has been increased quite a bit since Friday. So they are keeping an eye on that. She has alot of major blood work in the morning and that will give a better indication how bad the infection may be.
Realizing that even though she is listed, does not make this road easier. She could be taken off the list at any time. Infections can take her off of the list, and become serious very quickly. Please pray for stablility and her continued strength to make it to transplant. She needs to be strong enough to get to transplant, but needs even more strength to make it through transplant and recovery.

Friday, January 7, 2011 7:20 PM, CST

Just a quick update......Elizabeth is Officially LISTED for transplant!!! Also she did well with her GJ tube placement, I will update more later

Thursday, January 6, 2011 11:26 PM, CST

First off let me say that I am absoultely AMAZED at the turnout and funds raised at the spaghetti dinner/silent auction. Those who planned this event did so in 2 weeks, during the holidays~AWESOME!! We are also very thankful for those businesses and individuals who donated food and items for the event. There were SO many people who showed up to give support for our family! We are beyond blessed and grateful. Words are not enough to share our feelings, but we truly hope that everyone knows how much we appreciate them, their time, generosity, prayers and love!

    And now to recap our Day in Houston!! Elizabeth still had LOTS of trouble with her sedation today. They have changed some of the dosing times up a bit to see if they can control it more. Time will tell.
    This morning she had blood in her urine. They thought at first maybe kidney stones, or some infection or muscle breakdown of her kidneys. They did a lot of urine tests and an ultrasound of her kidneys. All was good with the tests/images, so they are thinking it may have been some trauma from the foley catheter and will just monitor it for now.
    Yesterday the transplant team decided to try pulling the NJ tube that was down her nose. (It was very irritating to her, and the surgeons wanted to out prior to transplant.)  And attempt to use her Gtube(the one in her belly) for feedings. She started throwing up about 30 minutes after~ SO NOT GOOD!! The fear with her throwing up or refluxing is that she will aspirate into her lungs. She has already had the surgery for the nissen fundoplication to block the stop of her stomach to prevent reflux, but it isnt working properly. So chances are it has loosened up. So now the BRILLANT plan (sarcasm here) is to take her downstairs tomorrow and have a GJ tube placed (the tract in her belly will have 2 tubes one goes in her stomach the other goes into her intestines). She will then be able to use the tube in her belly to be fed straight into her intestines, an after transplant maybe look at redoing the nissen. SO the downfall of "taking her downstairs' is she is on such high setting on the vent, and requires so much sedation that there is a high chance she will not do well with being moved. Basically they have to bag her the entire time she is transported down the hall, elevator, and possibly throughout the procedure (which takes about 30 mins). I voiced my concerns numerous times today to every doctor I saw, but Dr Mallory assures me that it will be ok and must be done. So the plan is to have one of the PICU Drs and Respirtory Therapist who knows her well be with her the entire time, and they will give her anesthia and paralyze her to ensure she does not fight the transport and procedure. This is scheduled for 9AM CST so PLEASE keep her in your thoughts and prayers tomorrow!! This could go really bad, really fast and we are hoping for the best with it.
   During the fundraiser at home, we were skyping in and chatting with family/friends. When it was decided that Elizabeth needed a trach change due to her aircuff leaking. The ENT Dr that came up was extremely rude to our nurse, and then to us. We again offered to change the trach and at first she didnt want to let us. But after we explained we did it last time, and the RT said she was fine with it she agreed. But she would not get out of our way and let us use the system we have when we do trach changes. She was being very picky about things, and we had to tell her either we do it our way or you do it. Needless to say Matt got mad, which is never a good thing, and she finally got out of our way. We got the trach changed out and Elizabeth did really well with it. And I think ENT realized she was a very disliked in our room, and left quickly after :)
     Another thing that has been discussed recently is the inominate artery syndrome. Most of you remember that part of the reasoning for the trach was due to her aorta compressing her airway. A surgery to lift the aoarta off of her airway and suture it to her sternum called an aoratopexy was discussed at Vanderbilt. But it was feared that she was not strong enough to survive due to her lung condition. So now that she will be having major surgery on her lungs, the plan is if needed to do the aoratopexy at the same time as transplant. YEA so that means 2 major things happening at the same time. The Surgeons wont know if she needs this until they are "in" and visualize the compression and then decide if it is bad enough to do the surgery or not. Since this compression issue can get better over time, its possible she may not need this.  But the whole purpose behind this is so she will be able to get rid of the trach!! It seems so unreal to think, once she gets new lungs.....NO oxygen, No Trach, NO Vent...(we will have the feeding tube for a while, but you get my point)

    BUT for new lungs....We need insurance approval. UGH yes, we are still waiting!! Not so patiently I might add :) I have called multiple times everyday this week. Yesterday insurance advised me that her paperwork was NOT marked urgent, so they were not processing it quickly. ~~ But Really....if a 1 year old is being considered for a lung transplant, what part of that is not urgent?? ~~ I had to get our couselor here at the hospital to resend it and mark it urgent. So hopefully we will have an answer soon. After the meeting Wed, the surgeons are on board with listing. At this point all we need is insurance approval and the girl will be listed!!! As long as she remains stable (have to add that disclaimer in)

Tuesday, January 4, 2011 9:48 PM, CST

Elizabeth had a pretty rough morning. I stayed at the Ronald Mcdonald House last night and around 8 am Matt sent me a text saying she was having problems.  Apparently she woke up and her saturation started to drop, which is kinda normal when she wakes up. But she did not respond to the sedation or 100% oxygen and continued to drop. Her saturation got into the 50s and they had to bag her to get her back up. They turned all of her vent settings/nitric/oxygen back up, to be sure none of that was the issue. And paralyzed her again. After suctioning her trach multiple times she finally chilled out and was able to recover. They allowed her to come out of being paralyzed and were eventually able to wean her oxygen and nitric settings back down, but left the vent settings higher. They think her trach may have just been plugged off, which was blocking her airway. She has been stable to rest of the day, other than the same sedation issues. They have changed her meds up some. They think that the high dose of versed has actually be causing her to have dillusions and could be contributing to her not being able to "chill out" when she is awake. They plan to wean her off of the versed and give other drugs (ketamine, chloral hydrate) and give her pentabarb and ativan more frequently. On top of those drugs she is also on a fentanyl drip and methadone. Needless to say, after her transplant she will be on a some serious medication to prevent her from going through withdrawls from these very strong medications. Another hurdle she will have to over come on top of recovering from a major surgery.
As far as insurance goes...we are still waiting. I spoke to the hospital financial counselor (the guy who is getting the approval) and I spoke to one of our insurance case managers. I was told that her paperwork is being reviewed and we should have an answer soon. Not sure what the problem is, I mean they approved her for a transplant evaluation, common sense if she needs an evaluation there is a good chance she will need the transplant too!! Sometimes I just dont understand the whole insurance process, which I am sure most of you dont either. 
The transplant team is meeting again tomorrow and will discuss Elizabeth again, and the issue surronding the one surgeon who has questioned her neurological development. We were told that this would not hold up her being listed, but hopefully it can be resovled tomorrow. That way once we get insurance approval there will be no reasons to delay listing.
Today's events are just a reminder to us how sick Elizabeth's lungs are. The longer we have to wait the worse she will get. She has such a hard time with any little set back that the sooner we can get her to transplant, the better chance she has of doing well with it.
Hoping for continued stability and for insurance to get it together :)
      Also a big THANK YOU to Shannon and Cindy for going on Channel 12 this morning to share Elizabeth's story and promote the upcoming fundraisers.
For those who did not get to view it:
http://wdef.com/video/01/2011_8

Monday, January 3, 2011 9:16 PM, CST

Elizabeth is still stable, and was able to wean down some on the vent settings. She is now down to 55% oxgyen and maintaing her saturations with that, some of the pressure settings have been turned down. I think I forgot to mention they have also started to wean her off the nitric oxidie very slowly. They are weaning it 1ppm per day, she started at 20 and is down to 14 and doing well with that. Her sedation meds have all been increased, again, since she just cant seem tolerate being very awake. Her CRP level, the inflammation marker in bloodwork was down to 7.8 today, significantly better (down from the highest of 28.8, 1 being an indicator of infection). Her  IGG level (the antibody stuff she got a few weeks ago) started out at like 150s when we left Vanderbilt is now up to 600s. So she is headed in the right direction as far as being stable enough and infection free enough for transplant.
Now the big deal is still getting her on the list!! We are AGAIN dealing with insurance, I spent the whole day trying to talk to a person and left numerous messages with every possible number I have at BCBS transplant dept, and attempted to contact our Counselor here for transplant to be sure they are getting everything done. So I plan to be on the phone again 1st thing in the morning, and then searching for this Counselor guy's office in the morning too, I mean really dont return my call and think I cant find you??!!! ~ Remember I am a cop, and have some amazing abilities to locate people~espeically when they are in the same building :)
Obviously I have been very frustrated today regarding insurance and THEN a bird pooped on me when I went to get dinner........AHHH there's always something ;)

Thanks Again to Shannon who went on Channel 3 this morning to promote the fundraiser and share Elizabeth's story. For those who missed it or are outside the viewing area below is a link to the show:
http://www.wrcbtv.com/Global/category.asp?C=195151