Tuesday, November 30, 2010 5:16 PM, CST

Elizabeth is 11 months old today!!!!
I have spent the day being so thankful for the progress Elizabeth has made overnight and today. The past five days we have had alot of emotions, going from one exteme to the other. We are so lucky to have a little girl who is fighting so hard to stay here with us! We love her so much and can not wait for her wake up and smile at us again!
 
We want to express how grateful we are for our parents, who have been here with us throughout the past five days. They have felt not only the pain and sadness of being concerned for Elizabeth. But I have seen how sad they have been for us. Since Elizabeth was born I have quickly learned how hard it is to see your child suffer and think I better understand how they feel seeing Matt and I struggle. And I hope that they ALL know how much we love them and how grateful we are that Elizabeth has such loving and caring grandparents.
I also want to share our gratitude for those who continue to support us. Many of my fellow co workers have been and continue to donate their personal time to me so that we dont have to stress over financial concerns. Matt's work has been very generous with allowing him to work from the hospital when he can. Numerous family members, friends and strangers have sent gift cards, packages, and most of all thoughts and prayers to us as well. There is no way for us to repay everyone for their generosity and support. But we hope that we can one day help others the same way all of you have helped us! We will always remind Elizabeth of those who have supported us and allowed us to be able to stay with her and ensure she gets the best possible care. 
We still have a long way to go, and we do not know where Elizabeth's journey will take us, but we are grateful for her and the chance to help make her life the best possible.

Tuesday, November 30, 2010 11:38 AM, CST

Elizabeth had a GREAT night. Her oxygen index did seem to float around alot from 13 to 21. But the good news is she did not have any episodes of desaturation. They have been able to wean down her oxygen requirement from 100% to 85% and wean down some of the vent settings.  Granted she is still getting ALOT of support but at least now with lower setting if she gets worse they have some room to go up, where as before she was at the max support they could provide. They also had to adjust all of her sedation/paralyzing meds. Her doses were increased on everything yesterday/last night. She has gotten so used to all of it. She started moving last night...EVEN with the parlayzing medication...so that was a definite sign that it needed to be increased.
She started getting the new antibiotic recommended by infectious disease last night, as well as some topical antibiotic drops that ENT recommended be put into her trach. So all of these things combined with the upped sedation and new trach are hopefully working towards her getting better soon.

Sunday, November 28, 2010 8:46 PM, CST

Things got pretty scary and then a little better! Throughout the day Elizabeth continued to have "bad" numbers. Her oxgyen index was staying 25-27 and then she got to 34. Elizabeth seems to be getting really used to alot of the sedation medications, and her heart rate keet going up which was making her upset and causing her oxygen saturation to drop. Then the Dr decided that she needed to have her trach changed because she was again losing alot of air around it.  Plus it would give her the custom length trach that she needs. They were worried that taking her off the ventilator and changing her trach would cause her to have major issues, so they had alot of nurses, doctors, ECMO team and the crash cart by our room. SO as we have been suggesting and questioning they changed her sedation up a little and added a different medication, they gave it to her before they did the trach and she did AWESOME!!! Her saturation was in the upper 90s throughout the whole procedure and she has remained good since. Her saturation has been at 100 since then and not floating around, and her heart rate is staying down. Her most recent oxygen index was 14!!! So that is the best news all day! Granted we have only had "success" for a few hours but staying off ECMO is a huge accomplishment right now since she was so close. We are hoping she will have a good night and continue  to well. We also hope that the new antibiotic, the new trach, and the new sedation med will help put her on the right track and they can start to wean down her ventilator settings!!
We are very grateful for our ENT Dr who was not on call, but took time from his off day to come in and change Elizabeth's trach out. We trust him alot and are very thankful for him!

Sunday, November 28, 2010 1:09 PM, CST

They changed one of the anitibiotics again today. The growth from her trach is resistant to many types, so they are hoping that the new one will help her some. Her numbers have again been all over the place, her oxygen index is still ranging from 22-30 and they are again reinterating that ECMO will be needed if she gets above 30 more than a few hours. They have typed her blood and have reserved all the blood products she will need for the procedure if she ends up at that point today.
I dont know what to do anymore, we have pushed and pushed for what we think needs to be done, and they seem to be listening more and more, but at the same time I think that they are just at a loss and are willing to try anything to help her.  Still hoping we can avoid ECMO,  but not sure how the day is going to go.

Saturday, November 27, 2010 2:59 PM, CST

I was right about the long night! Elizabeth had a few times of desaturations and got as low as 77. Her blood gases were all over the places and we had to get very mad to get all the Drs in here to discuss a plan. She has been paralyzed and sedated throughout all of this. But they decided to change her fentanyl drip to morphine,since she has been on it for so long maybe she was used to it and needed a change in meds to ensure it was working. They decided to do blood gases every hour overnight and changed it to every 2 hours this morning to monitor her oxygen/CO2/Oxygen index number.
Just so everyone understands what the critiera for her going on ECMO is, they are monitoring her numbers but the main one they are looking at is the oxygen index.  A number of 30 or higher in 2 consecutive gases would be the point that they put Elizabeth on. She spent the majority of last night anywhere from 20-29 and at one point was at 44. Today she has been in the 20s and on her last one was at 13. We REALLLY hope she can keep good numbers and avoid ECMO since it will significantly decrease her chances of coming out of this.
They have stopped feeding her and she will again get TPN fluids/nutrition via IV. She is still on 3 antibiotics and 1 antifungal medication. Plus the morphine, versed, and the paralying medication. She is still getting her home medications: steroids, sildenafil (for her pulmonary hypertension), lasix (dieuretic), vitamins and prevacid/pepcid to protect her stomach from the steroids. 
The Dr just came in and talked to us, it is very scary when he tells us they are doing everything they can. And she is probably the sickest kid in this hospital right now.  That does NOT make me feel any better about the way things are going. I wish we could do more and make things better.

Friday, November 26, 2010 8:14 PM, CST

Elizabeth's day started out decent, they weaned her vent/oxygen down and she was still having good numbers on her blood gases. Then about an hour ago her oxygen saturation started trending down and her heart rate up. And her blood gas was not as good as it as been. They gave more meds and turned her vent/oxygen back up. She was given some meds to help open her vasuclar system up and help with blood/oxygen flow. She is also going to get another blood transfusioin, her blood was a little low and they want to be sure she has enough to ensure it it flowing and providing oxygen to all of her organs. So its another wait and see night.
The most frustrating part is not knowing, I mean we know she is sick but we dont know if any of the stuff they are doing is actually helping her. She is so up and down and cant level out for more than a few hours.
I just want her to be better!!! I miss seeing her smile and being awake and playing.

Thursday, November 25, 2010 8:21 PM, CST

Elizabeth is maintaing her saturation and keeping "decent" blood gases to avoid ECMO right now!!! She is still on 100% oxygen but the Drs are ok with that for now. The plan is to leave her where is is on the vent/O2 settings and see how the night goes.

Thursday, November 25, 2010 5:01 PM, CST

The day has not gotten any better. Elizabeth is still not doing well. Her saturation keeps flucutating. She has been paralzyed and heavily sedated since last night. This morning we met with the PICU Dr and Pulmonlogy and it was decided that Elizabeth is a candidate for ECMO, if she continues to get worse and her blood gases do not improve she will be put on it. The doctors explained all of this to us and told us it was our choice and wanted us to make a decision today in case it becomes emergent that she needs it.  Extracorporeal Membrane Oxygenation (ECMO) is a method of long-term lung and/or heart support in infants, children and adults with severe pulmonary and/or cardiac failure. At this point they are not sure what is going on, we know she has an infection and pneuomia but they are saying she should have been improving by now. So its all an unknown right now. ECMO has alot of risks involved with it and and we were told she has about a 50-60% survivial rate on it. The procedure to start ECMO is very risky and then trying to get her off ECMO is also going to be challenging. ECMO is a last resort and basically our last option to help Elizabeth.  We do not want her to go on ECMO, we both fear that she may not be able to handle it but at this point we have to prepared.  We are still VERY HOPEFUL that she will not have to go on this. But we are prepared and have signed consent if it comes to it.  We have also started discussing lung transplant evaluation for her. But she will have to be well and can not be on ECMO to even be evaluated so that will be much further down the line as a possible treatment. We are also still waiting on her custom trach to get here, hopefully tomorrow. We really hope that it will make some sort of difference as well in providing her with better ventilation.
As of a few minutes ago, her most recent blood gas is unchanged so we are still hopeful she can turn around and improve. PLEASE keep her in your thoughts and prayers. It is going to be a long night, we will post as we know.
We are thankful today on Elizabeth's first Thanksgiving that we were chosen to be her parents. And we are thankful for her strength and courage. She is so amazing and deserving of a long and happy life. We continue to fight for her and hope that we make the best choices. We are also thankful for the doctors, nurses, and other caregivers who have provided her with the best possible care, I know I get frustrated alot with them, but without them she would not have made it as far as she has! We are also thankful for the support that each of you provide for us and for Elizabeth.

Wednesday, November 24, 2010 11:35 PM, CST

Not a good start to Elizabeth's first Thanksgiving. She started having problems earlier keeping her oxgyen saturation up her numbers dipped down into the 70s and they decided to start the nitric oxide again. She was put back on higher ventilator settings and a rate, where the vent helps her breath. She was on 100% oxygen when all of this happened and finally recovered after a few hours and was able to wean down to 75%. They did some blood work and found her hemoglobin level was down so she was given a blood transfusion to help with that. Then about an hour or so ago she started dropping again on 100% oyxgen, THANKFULLY we have a great nurse tonight who was proactive and as soon as she saw her dipping into the low 90s high 80s she got the Dr. So they decided to put her back on the high sedation meds fentanyl and versed drips and will possibly be paralyzing her again if she doesnt respond quickly to that. They have also decided to put the arterial line back into monitor her blood pressure and to get more accurate blood gases from.

Tuesday, November 23, 2010 10:45 PM, CST

Not much change in Elizabeth's status today. They attempted to put her old trach back in (the longer one she was on at home VS. the cuffed one Erlanger used to help ventilate her better) and did a scope to ensure it was what she needed to bypass the compression in her trachea. Her saturations dropped and she was having difficulty so they took it out and put the cuffed one back in. So in order to have a cuff to keep a seal around her trachea and to have a trach long enough to bypass the artery compressing her airway they again had to special order her one. The "hope" is that is will be here tomorrow but the reality is that with a holiday and the last minute ordering it wont be here until Friday/Monday. So until then  I dont think we will see much progress with her, I think she really needs this new trach to ensure her airway is as open as possible for the ventilator/oxygen to do its job. She has been exteremly sleepy and when she is awake she doesnt seem like her happy, playful self. That worries us alot but we know part of it is that she is sick, and part of it is that she cant move alot with the current trach she has, it doesnt allow alot of movement of her neck and makes it almost impossible to sit up. Everytime we try to let her sit her neck is so big it disconnects her ventilator.
Today was a pretty rough day emotionally for Matt and I, we had some issues with the nurses caring for Elizabeth and had to basically get very upset and ultimatley make the nurse mad at us. We then had the pulmonoloist an PICU Dr come in and we were able to talk to them and hopefully resolve some of the concerns we had regarding the lack of care she was being given today. This situation is so stressful and I HATE feeling like we are being ignored when we have concerns and problems with care or staff. I also HATE having to be rude to someone to make them listen to me, but that seems to be the only way to get things done here lately. But I had a bad feeling about this day when I woke up so I kinda knew we were not going to get along with the nurse today.  Hoping tomorrow is a better day, and that Elizabeth gets back to her happy smiling self soon!

Monday, November 22, 2010 9:26 PM, CST

Elizabeth is still doing better than when we first got here, but seems to be up and down alot. Her oxygen requirement has been anywhere from 55% to 100% over the past couple of days. Her lungs showed in xray yesterday some actelastisis (collapesed areas), but that is expected with her not being able to move around alot. So they started the hyperinflation therapy again, where they use the bag to inflate her lungs to try and get the air sacs to open back up. Once she is moving around more that should clear up on its own. They started giving her ativan/methadone today to wean from the fentanyl and versed medications.
We think that part of the issue with her oxgen requirement being so up and down is that she needs her custom length trach back in, we have voiced that concern all weekend and today the ENT Dr agreed. But he was unavailable today to come by to make the change, so hoping he will be here first thing in the morning and we will notice a big change once that happens.
Surgery came by today and wanted to do an upper GI on her to check to see if she is refluxing and if the nissen is loosened up. But to do that test she has to be taken down stairs to radiology. We made it down the hallway today and her saturations dropped into the 80s. The Dr stopped in the hallway and she was given 2 doses of Ativan to help calm her down but it didnt work. So we turned around and came back to her room. She had to be paralyzed and sedated for a little while to give her time to recover. The test will be rescheduled once she is a little more stable. We are hoping once she gets her custom trach back in that we can transition back to her home ventilator and that will make her a little more comfortable, she will be able to sit up more and the tubing is arranged better to allow her to move her arms more.

Saturday, November 20, 2010 6:28 PM, CST

Lots of progress today, Elizabeth was weaned OFF of nitric at 5am this morning and has done very well. They have decreased her sedation and she is waking up more often. They removed the catheter she had hope to take out the artial line sometime tonight. And the best news~~~ She is back on CPAP/Pressure Support mode on the ventilator (what she was at home on). Which means she is doing the work of breathing herself but the ventilator is provding her with some support for breathing, but definatley a good sign. Her oxygen requirement is down to 55% (she was home on 45% before she got sick) so she is going in the right direction for sure! They started feeding her more throug the NJ tube they placed down her nose, and we hope to have GI come and go over her feeding issues early next week. She is still very sick but has made rapid progress, so we are hopeful she will be better and home soon.

Friday, November 19, 2010 1:41 PM, CST

The Infectious Disease Team came by again today and they think that Elizabeth has Pneuomia and that is what has caused all of her distress. Which we have been told from the beginning that if she ever got sick it would be very hard on her, but  we never imagined it would be this bad. So the upside is that she is responding to the treatment-anitibiotics. They plan to watch and make sure nothing grows from her blood cultures since she could still have an infection there but they are planning to switch her antibiotics tomorrow. They said it would take about 10-14 days to treat if nothing else grows from her cultures and she continues to respond to the medications.
Her oxygen is back up to 60% put her nitric is down to 4ppm and her ventilator setting have been adjusted and turned down some, so that is all headed in the right direction.
The echo done on her heart here shows NO CHANGES since her last one in September, which is good. At least we know her heart has not  gotten worse. But it hasnt gotten better either.
Neurology also came by today and they want to start treating Elizabeth with anti-seizure medication. They still are not sure that she has had any seizures but are concerned that her condition may cause them and right now that would be very bad for her. So she will start the medication and be reevaluated once she has recovered from her respirotry issues. We are still waiting on the results from the EEG on her brain.
An NJ tube was placed today(tube from her nose into her intestines) so they can start feeding her again. They plan to use it and her Gtube in her stomach but this way it will be likely for her to aspirate and reflux. Her stomach issues will be evaluated more but she has to start being fed first to get her stomach to "wake up" since she hasnt eaten in a few days. Right now they are having problems making sure the tube is placed correctly so we will see how that goes, it may be later today before she starts getting fed.
Its so crazy to think how she goes from one extreme to another. She was doing so well and then got so sick and now has started recovering pretty quickly. We are thankful for the quick recovery but really concerned about how quickly her status can change!! We do have good news about our home nursing, we are approved for 24 hr care (apparently our home health company billed incorrectly in the first place and we never actually lost coverage!!-needless to say we are looking into new a company). So we should have that all lined up before we get outta here this time.

As the holidays are approaching I would like to encourage everyone who reads our posts, to think about donating time, food, or money to your local Ronald Mcdonald House or local Children's Hospital. I know lots of families including ours that have had to use the house or room  for lodging/snacks/just a place to get away from the hospital room.

Friday, November 19, 2010 1:41 PM, CST

The Infectious Disease Team came by again today and they think that Elizabeth has Pneuomia and that is what has caused all of her distress. Which we have been told from the beginning that if she ever got sick it would be very hard on her, but  we never imagined it would be this bad. So the upside is that she is responding to the treatment-anitibiotics. They plan to watch and make sure nothing grows from her blood cultures since she could still have an infection there but they are planning to switch her antibiotics tomorrow. They said it would take about 10-14 days to treat if nothing else grows from her cultures and she continues to respond to the medications.
Her oxygen is back up to 60% put her nitric is down to 4ppm and her ventilator setting have been adjusted and turned down some, so that is all headed in the right direction.
The echo done on her heart here shows NO CHANGES since her last one in September, which is good. At least we know her heart has not  gotten worse. But it hasnt gotten better either.
Neurology also came by today and they want to start treating Elizabeth with anti-seizure medication. They still are not sure that she has had any seizures but are concerned that her condition may cause them and right now that would be very bad for her. So she will start the medication and be reevaluated once she has recovered from her respirotry issues. We are still waiting on the results from the EEG on her brain.
An NJ tube was placed today(tube from her nose into her intestines) so they can start feeding her again. They plan to use it and her Gtube in her stomach but this way it will be likely for her to aspirate and reflux. Her stomach issues will be evaluated more but she has to start being fed first to get her stomach to "wake up" since she hasnt eaten in a few days. Right now they are having problems making sure the tube is placed correctly so we will see how that goes, it may be later today before she starts getting fed.
Its so crazy to think how she goes from one extreme to another. She was doing so well and then got so sick and now has started recovering pretty quickly. We are thankful for the quick recovery but really concerned about how quickly her status can change!! We do have good news about our home nursing, we are approved for 24 hr care (apparently our home health company billed incorrectly in the first place and we never actually lost coverage!!-needless to say we are looking into new a company). So we should have that all lined up before we get outta here this time.

As the holidays are approaching I would like to encourage everyone who reads our posts, to think about donating time, food, or money to your local Ronald Mcdonald House or local Children's Hospital. I know lots of families including ours that have had to use the house or room  for lodging/snacks/just a place to get away from the hospital room. 

Friday, November 19, 2010 8:07 AM, CST

Elizabeth had a good night and continues to do well today. They stopped paralyzing her around 10pm last night, she is still heavily sedated but can move around and has sucking on her pacifier :)
Her oxygen requirement has went down and shes on 55% oxygen now (she went home from here on 45% in October, so thats is a step in the right direction). But that can flucuate, so UI dont want to get my hopes up just yet. She is breathing above the ventilator which is also a good sign. She is still on the nitric and they have attempted to wean it a few times but she seems to like it too much. So they will continue to try to get her off of it, but from past experience we know it takes her a while to give it up. She is still very sick and not out of the woods but things are looking much much better than they have been. From what the Dr has said he really thinks it was infection and getting that under control with some anitibiotics has been the best thing for her.

Thursday, November 18, 2010 6:29 PM, CST

She has remained stable since this morning! She is still sedated/paralyzed and the ventilator is doing all the work for her right now. ENT came by and put a scope down her trach just to make sure it was adequate and they think it is for now. They will wait a few days and most likely try a larger trach to try and fill up the large air leak, but want to let her remain stable for a few days before making any large changes. The upside to this is they were also able to make sure there was no granualation tissue or damage from suctioning to her airway, and it appears that her airway "looks good".  They continued weaning her nitric oxide down she is now on 10 (started at 40 in Chatt) and her O2 had to go up a little but is at 70% so even though she is still requiring alot of support she has made some improvements since last night/this morning.  Hoping that tonight goes well and that the antibiotics are playing a big part in helping her improve!

Thursday, November 18, 2010 12:29 PM, CST

Elizabeth again had issues when the flight team tried to move her to the strecher for transport last night and it took about an hour to get her stable, after having to paralyze her. The flight went well, her saturations stayed at 98-100 percent the whole time, THANKFULLY. Elizabeth and I got here around 130 am this morning and Matt got here at little after that since he drove up for Chattanooga. It was again a very rough night, as soon as we got to her room and they started moving her and trying to get her set up in the room her saturation dropped. Her legs/feet were starting to turn blue. I dont think the Dr/nurses here really realized how bad she was until we got here. It took a long time for her to recover from that episode but they were finally able to get all the blood work they wanted to send to check for infections or anything else. She had another major episode this morning around 4am, I woke up to see about 10 people in our room and they were bagging Elizabeth to help her breath. They had tried to do a catheter to get a urine sample and it upset her too much and her satruation dropped really low again. Throughout all of this they have been trying to keep her just sedated, but because she has been sedated so much in the past her body burns through the drugs. They had to increase the sedation alot and are now keeping her paralyzed all the time to make sure she is resting. Thankfully the Pulmonology Fellow here at Vanderbilt that has been with us since our first stay was on call, and came in when we got here. She stayed all morning in PICU and was here to ensure that the PICU Dr understood what Elizabeth needed and helped provide her with the most support possible. She was the one who took over bagging her breaths just to ensure it was done correctly! (We would LOVE for her to work in Chattanooga w/Dr Ledbetter after her fellowship!!!)
During the day yesterday and again last night Elizabeth had a couple of times where she started shaking, not sure if it was like a seizure or if it was something else. But we know that seizures are possible with her neuornal migration disorder. So neurology was consulted today and they are now putting an EEG on her to monitor her brain and check to see if she is having seizures or any abnormal brain patterns. They are putting it on now and it will stay on for 24 hours.
Some of the blood work came back last night and it showed her white blood cells were really elevated, so they have started 3 broad spectrum antibiotics to try an treat any infection she has. They are waiting for cultures and other testing to show what specficis infections she may have. Which we know for TC Thompson she has an infection from her trach and still has MRSA. They are concerned also about her liver it seems to be a bit enlarged which can be a sign of heart failure.
   The PLAN for now is to keep her very sedated/paralyzed and just chilled out so that she will remain stable. Since they adjusted her sedation medication she has done well and they have been able to wean her oxygen requirement from 100% down to 60% and hope to be able to wean the nitric oxide down more today. They plan to try to get her a bigger trach to get rid of the air leak that she has around it now, even with the cuffed trach they put in yesterday she still has a huge leak and it allows too much of the pressure to leak out instead of going into her lungs. Continue to treat her with antibiotics until a specific infection is determined but at this point treating any/all infections will benefit her. Infectious diease control has been by to try and determine if they can narrow down any infections she may have, but need all her cultures/blood back first. Cardiology will be coming by to do another echo on her heart to check her pulmonary hypertension and decide if something more needs to be done to treat it. Gastrology will also be by to check her digestive system, and decide if her feeding tube needs to be changed from a g tube to a gj tube (where the food goes into her intestines instead of her stomach). And surgery will be consulted to check why she has been able to throw up around the nissen she has on her stomach which is supposed to prevent her from throwing up/aspirating. She will not be fed until all of these things are checked, so she is getting TPN fluids to provide her nutrition.
     I want to thank EVERYONE for your continued thoughts, prayers, and words of support and encouragement for Elizabeth, Matt and I. Right now we have no idea what the future holds for Elizabeth and it is the scariest feeling ever, I hate that I can't help or take her place.
We also wanted to share how grateful we are for all of the PICU staff and Dr Ledbetter at Erlanger who did everything possible to help her and keep her stable so that we could get her to Vanderbilt. They were beyond awesome to Elizabeth and us, everytime we have been there. We are hopeful that things remain stable today and her condition improves more. We were told the next 48 hours are critical and that as always Elizabeth is going to teach us and the Doctors what she wants/needs. I hope she knows how loved she is and continues to stay strong. I will update as I get time and as things changes, its been a very rough few days and we are just trying to stay sane right now.

Wednesday, November 17, 2010 5:01 PM, EST

Lets just say things went from bad to worse. Elizabeth continued to have bad "spells" of her saturation dropping. Yesterday morning was her worst one this stay. She started gagging, coughing, and trying to throw up. Her saturation dropped down into the 60s and she was VERY blue. She was fighting so hard to breath that she was causing her anxiety which was making her even more upset and uncontrollable. Her heartrate began dropping and they moved the crash cart into her room (we have NEVER seen that happen with her before). I was afraid that we were going to lose her. Her nitric was turned up to 40 ppm and they started IV's to give her fentanyal and versed to sedate her and threw around the idea of paralyzing her as well. She was switched to the hospital ventilator and put on higher setting so that the ventilator could help her breath.
The doctor told me she felt we needed to be transferred to another hospital that offered ECMO (where her blood goes through a machine to be oxgeninated), just in case ELizabeth continued to decline that was the only way she could be helped. TC Thompson does not have ECMO and if she got worse they would not be able to help her. She finally somewhat stabilized yesterday and Vanderbilt was contacted to LifeFlight her back to Nashville. They got here last night to transport and she dropped down into the 40s and was unable to recover, she stayed very unstable for hours and it was determined to risky to transport her, so we stayed at TC Thompson and she was eventaully able to be stabilized.
She had another really bad episode this morning where she again dropped into the 40s and was not recovering. Her trach was changed to a cuffed one to reduced the large leak she had around her trach and that seemed to help. Her trach was also plugged with gunk and that immediatley helped her breathing. They have continued to sedate her and a central line and art line were started today so that she has better access for giving meds and drawing blood. She was transitioned back to her home ventilator but still on higher settings and the ventilator is helping her breath more than it was before. She has done well with it and her nitric has been able to be weaned from 40 to 20.
    We were afraid she would need ECMO and have to be transported on it so a hopsital in Michigan was contacted and they were willing to come and get her, but now that she is somewhat stable, it looks like the best option will be to get her to Vanderbilt tonight and go from there. They have ECMO available and if she ends up needing it we will be at a location to help her.
The thinking it that she may have aspirated during her gagging spell and it caused some type of puneomia, plus the infection she already were just too much for her body to handle right now. Hopefully we will see some improvement within the next few days. She will also be evaluated for her pulmonary hypertension again to see if that is possibly causing this.

I think the past few days have been the worst so far with the fear of losing Elizabeth. She has never had her saturation drop that low so many times and take so long to recover when she is getting the maximum amount of help. Please keep her in your prayers, she continues to fight and we will be here with her the whole way.

Monday, November 15, 2010 4:12 PM, CST

Well, we just thought we were gonna get to go home soon! Elizabeth continued to have issues with her saturation going up and down Fri/Sat night even after her final dose of steroids. So a respirotrty panel and cultures from her trach site were taken on Friday. She had a few episodes of her saturation dropping into the 80s on Sat/Sun and then yesterday she had a really bad episode. She started gagging and crying, we could not get her calmed down and her oxygen saturation dropped into the 70's after being turned up to 15 liters of oxygen and being bagged for a little while she finally recovered a little and was in the 80s. She kept crying and struggling to breath, and was working so hard we were really scared for her.  Her saturation would not come above 83 at all and it was finally decided to try putting her nitric oxide to see if she responded, since she has in the past due to her pulmonary hypertension. She immediatley went up to 100 and was able to wean down some of the oxygen. She was given an additonal large dose of steroids and has remained on 20ppm of nitric all day today. So today they did an echo on her heart to see if it has gotten worse. We also found out that the culture from her trach shows an infection so she has been started on antibiotics. The hope is that the infection is what has caused her decline and her pulmonary hypertension hasn't gotten worse. Our Dr here is in contact with the Drs at Vanderbilt and will determine the next step once the echo results have been read. Please keep her in your thoughts and prayers!!

Thursday, November 11, 2010 10:44 PM, CST

Still in the hospital, but doing ok. She seems to have improved some with the steroid dose. She got her last round of the 3 day dose tonight, so we will see how things go tomorrow and hopefully we will be home within the next few days.

Tuesday, November 9, 2010 8:24 PM, CST

Poor Elizabeth!! Her oxygen saturation continued to decrease and he had to keep turning her level up, she made it to 7 liters and we got very concerned. We called her Dr and we were admitted to PICU. We think her decline is still related to her steroid wean and hopeful that a pulse dose of steroids will get her back on track and this will be a short stay (that would be a first, but Im hopeful!). When we got here tonight they had to do get an arterial blood gas, which is pretty painful, so Elizabeth was NOT happy at all about it, plus the fact it took them 3 sticks to get it didnt help her any. They also had to do a heel stick to get more blood for another test. So during all of that her requirement went up to over 10 liters! We are still waiting for her to "chill out" from being poked and messed with, her saturation is still not where it needs to be and her O2 requirement is still pretty high.
We are thankful though that the PICU staff here at TC Thompson are very famililar with Elizabeth and us, and actually put us in a room inside PICU so that we are able to stay with her (they knew someone always stays). They decided not to start an IV unless she needs it, which is another plus since she doesnt do well with IVs. So they plan to do the pulse dose of steroids tonight, and give them to her through her Gtube. We were told the soonest we would see improvement from the steroids would be 12 hrs, but from experience we know the full effect wont be for a day or so.
And of course we are still having the issue of not having home nursing care, so we will see how this admission affects that, if at all.
Will update tomorrow with any more news or any changes. We were pretty excited we almost made it home a whole month this time :(

Tuesday, November 2, 2010 11:29 PM, CDT

Elizabeth continues to do well at home. Her oxygen requirement has increased and her saturation was fluctuating alot so we called and took her in to the Dr today. We think it may be related to weaning her steroids, so her dose has been increased a little and we will remain at that dose for a while until we can see endocrinology again. She will start physical therapy at home tomorrow, she has made lots of progress meeting some of the developmental goals that were set for by the hospital PT. I am hopeful that once we get home PT started she will "catch up" more to where she needs to be for her age. She is still about 14 1/2 pounds, so she is gaining weight but very slowly. Also hoping that being home and having a regular schedule with her feedings not being stopped for tests/lab work she will be able to gain more quickly.
Our newest "issue" is that our there was some miscommuication regarding our medical insurance and we no longer have home nursing care benefits. SO that means that one of us has to be awake all the time to care for her. Talk about stressful! We just found this out on Thurs/Fri and our nursing care officially ended Monday night. We applied for SSI and TennCare but will be denied based on income (since we both work), but are hopeful that she can get SSI based on her actual diagnosis instead which would automatically qualify her for TennCare. I have also taken out medical insurance through TriCare (with the Navy Reserves). But there has been continous drama with not having the proper paperwork for Tricare, and not being able to get anyone to really help at SSI or TennCare. Frustrated is not even the word to describe the past few days. Thankfully my sister came in town and is staying with us for the next week, so hopefully we can get something in place. I would really like to go back to work soon, but caring for Elizabeth is a full time job in itself and not having nursing care makes a big difference!
Elizabeth celebrated her 1st Halloween this past weekend. She was too cute as a lady bug or Izzabug as we call her :)