Friday, December 31, 2010

Friday, December 31, 2010 1:35 AM, CST

Elizabeth had a very good day today!! We got some great news today, her CRP level was down to 14.8. Which means....if all goes well over the next few days and we can get everything approved with insurance she WILL be listed next week.
I have so many words I wanted to share regarding this past year and Elizabeth's journey but the day got away from me with all of the excitement and just happiness of her turning 1!! There were many days that I feared this day would not come, and here we are. She has fought so hard this entire year, and continues to do so. Maybe I will have time to write more tomorrow.
Please feel free to view the below youtube video Matt and I created to document Elizabeth's amazing first year!!

Thursday, December 30, 2010

Thursday, December 30, 2010 4:06 AM, CST



Tuesday, December 28, 2010

Tuesday, December 28, 2010 9:03 PM, CST

Elizabeth had another stable day..thankfully! The more stable she gets the better her chances of being listed soon. I think It will be a very scary time when she actually gets listed. It will make all of this more real. I worry about her not getting listed but at the same time being listed means that she really isn't going to get better on her own. I mean we have known for a while that she wasn't getting better, but there is always a sliver of hope that she would suddenly decide to follow the "give her time, she will get better" route that we had been told may happen.
Seems strange to me to want her to have a lung transplant. When I went to the store yesterday, the lady asked where I was from and what brought me to Texas. When I told her that my daughter was here for a lung transplant, she seemed kinda shocked for a few minutes. Then I thought it about it and realized she probably thinks I am crazy for not being totally sad and disappointed that my child is in need of such a major surgery. But I think getting to a point of knowing this is the only thing that will save her makes the thought of it something to look forward too.
I realize that transplant is not going to be easy and it is not a cure. She will continue to have numerous doctor visits, medications and issues in general. And the constant fear of her rejecting new lungs or getting infections will always keep us on our toes. But she will be alive and the benefits will be well worth the work! I have talked to numerous Moms who have been right where I am and know the emotions that go along with this journey. Words can not express how thankful I am to these ladies for taking the time to talk to me and reassure me that there are better days ahead. None of us want this for our children, but are grateful for the gift. Seeing pictures and hearing the stories of Lucy, Faybree, Wrenn, and Faith have made me see that there is hope for Elizabeth to have a happy, playful life outside of a hospital.

There has been alot of work going on back home in setting up fundraisers and I just wanted to take a few minutes to thank everyone who has been invovled in the planning and organization of these events! We appreicate it more than you know. And I hope to one day be able to help you as much as you have helped us!! We love you all very much.

Monday, December 27, 2010

Monday, December 27, 2010 11:19 PM, CST

I forgot to add in my last post. When I got to the Ronald Mcdonald House tonight and checked our mail, we had a homemade card in our box. It read:

Good Things come to those who wait! Always keep a smile on your face!

Not sure if the person who made this card knows we are  playing the most important waiting game of our lives here.  But I thought it was a good reminder for me to try not to get so stressed out about this and know that we are on "Elizabeth time".

Monday, December 27, 2010 11:09 PM, CST

CRP level was 28.8, yes that is an INCREASE. When we got here she was at 25 then down to 23 and today 28.8!! She has to be below 10 to be listed for transplant. I requested that one of her antibitoics be changed from oral form (getting it through her feeding tube) be changed to IV form to ensure it was being absorbed properly. I have been questioning this since they started it, but was told there is a nationwide shortage of the antibiotic, bactrum, in IV form and she will have to have it for transplant so they didnt want to use it unless necessary. After I brought up the point that if we cant get her over this infection we will never make it transplant, I think they understood me a little bit better. And she got her first dose of IV bactrium tonight. So we shall see if it makes a difference, at this point I dont think it will hurt.
Another issue today, her arterial line stopped working AGAIN. So she now has no access for them to draw blood from. She will have to be stuck for all her blood work which makes her mad and causes her to have desaturations. They plan to try and get another line sometime tomorrow. The problem with this is that her arteries are hard to find due to the swelling and the fact that she has been stuck or had lines in so many already.
Good news of the day: she has remained stable. Oxygen levels of 60-65% with saturations staying above 95 and still off the paralytic. She opened her eyes more today, and seemed to tolerate physical therapy and everything else really well. They took the chest tube out today as well, and she didnt even seem bothered by that. And they were able to wean down some of her ventilator settings since she is doing so well.  I posted a picture from today with her eyes open, its a little dark but you still get the point. :)

Sunday, December 26, 2010

Sunday, December 26, 2010 10:15 PM, CST

Today was actually a pretty stable day. She only had a few desaturations but was able to recover pretty quickly and always able to wean back down to 65% oxygen. They have been trying to get  rid of some of the swelling and she is looking alot more normal. She tried opening her eyes a few times today, now that her eyes aren't so swollen. She continued to have a slight fever throughout the night and a few times today. So we know that her infection hasnt gone away yet.  The doctors decided since today was stable it would be the best opportunity to change her trach. Apparently they only change trachs here once a month, that is a big difference from twice a week at Vanderbilt. I guess each hospital has its own criteria. The doctor, nurse, and RT all seemed kinda hesitant about changing it so we offered to do it. The Dr actually seemed relieved that I offered :) They were all impressed with how quick and calm we were when we changed it  (Thanks to Diane @ Vanderbilt for teaching us so well!!) 
Crazy to think just a few months ago my biggest fear and worry was chaning out a trach and now look where we are, we have definately come along way with Elizabeth and her care. I remember being so scared about her coming on oxygen, and then getting the feeding tube, then trach/vent. And now she needs new lungs!! Guess all of these things were preparing us to be able to provide her with the long term care that a transplant will require.
Another thing I have quickly learned from my hospital living experience is that I look forward to Mondays. Odd I know everyone else is wishing for the weekend, but nothing really happens around here on the weekend, all the tests and decisions are made during the week. She will have alot of blood work done in the morning and she is scheduled for another echo on her heart tomorrow. Please pray and send good thoughts that she remains stable and these tests show she is heading in the right direction for transplant.

Saturday, December 25, 2010

Saturday, December 25, 2010 9:38 PM, CST

Thankfully, Elizabeth had a pretty good day today. She was able to keep her oxgyen saturation in the mid/upper 90s on 65% oxgyen. They are now attempting to wean down some of the vent settings again so we will see how the night goes. She has required less extra sedation meds today and that has been a great improvement. My new goal for her is the be listed by her 1st birthday, which is Thursday!! So if she can continue to remain stable and get rid of the infection it might just happen, trying not to get my hopes up. She has another blood test on Monday morning to check her CRP level, so that will be a good indicator of what direction we are headed.
   And our second thing to thankful for tonight... We were able to find a chinese resturant open :) Matt called about 10 different places before we found somewhere and luckily it was close to the hospital so I was able to go pick up food and bring it back for us to eat.
Since Matt was so great and let me sleep alot today I am staying at the hopstial again tonight. We have a great nurse tonight so I am not to worried about all the changes. He tends to listen to me when I tell him I dont agree with the changes and also is quick to ensure she gets meds when she is getting aggitated. Hoping for a good night!

Saturday, December 25, 2010 11:37 AM, CST

Hope everyone is having a great Christmas.

 Elizabeth had a slight fever almost all night, and her white blood cell count is higher~ not the best Christmas gift ever! Other than that she is about the same. No new changes other than they were finally able to get the arterial line in today, after much trouble yeseterday. They have made more adjustments on the ventilator to try and wean down some of the settings to decrease the damage it is doing to her lungs.

Looks like home has a white Christmas this year, the first in forever! I will update later, for now I am going to sleep after a long night at the hospital, and then off to find somewhere that is open for our Christmas dinner~ thinking we will be like Ralphie (A Christmas Story) today and find a chinese place open :) If not Mcdonalds is open at the hopstial.

Friday, December 24, 2010

Friday, December 24, 2010 10:04 PM, CST

Elizabeth has stayed pretty stable most of the day. Still off the paralytic, so that is the best news I have to offer. Her biggest issue has been her blood pressure being low, they had stopped but restarted dopamine to keep it at a decent level. She finally used the bathroom, so they have restarted her feedings at a low rate, so we will see how that goes. Other than that nothing new to add.
 We have been very impressed with Dr Mallory. He sees her about 3 to 4 times a day, ensuring that she is staying on track and all that can be done is being done for her. He stopped by on his way to Christmas service at church tonight. On his way out he told us she is his only patient in the hospital right now, and he will be here first thing tomorrow to see her. That makes me feel alot better about things, I was feeling very down about her not being listed yet. But he really seems to think we are headed in the right direction and I dont think he would be working so hard if he didnt truly think it was going to happen. The nurse who took care of Elizabeth on the night she was admitted and her first full day here seems to really like Elizabeth. She stops by all the time to check on her and us. Today she came by and we talked about things. She could tell I was very disappointed about her not being listed yet. She told me that this infection and not being listed yet is Elizabeth's way of waiting for the best possible donor lungs. I never thought of it that way. She told us that Elizabeth will get there, but it will be when the timing is right for her. So for now I have to believe that when she is ready and her donor is ready things will fall into place. From talking to other families and talking to the nurses/social workers here everyone says the wait is the hardest part. I believe it! Waiting to get on the list is driving me crazy, I cant even imagine how hard the wait will be once she is listed!!!
    We missed spending Christmas Eve with our families, but in my case I would have been working anyway (so at least I got to spend it with Elizabeth and Matt even if we are stuck in a hospital). But we are thankful that we are together and that Elizabeth continues to fight to stay with us. Next Christmas will be even more special for her! We got our first packages in the mail yesterday and today, Thanks Kay and Carie :)

Friday, December 24, 2010 11:39 AM, CST

Well not the news I was hoping for today. Elizabeth has another bacteria growing from her cultures, so more infection to treat. Last night I posted info a blood test that they are doing to help us with determing her infection. The blood test they do is called CRP (C-reactive protein), it shows acute infection or inflamation. CRP levels above 1 indicate infection. Elizabeth's level was 25 earlier this week and today was 23. She has to be below 10 to be considered a candidate for listing. SOO we basically have a long way to go! Her antibiotics have been changed up some to try and provided better treatment, but the cultures are still growing so all of the sensitivies and resistances have not been fully determined yet. As they continue to grow her treatment will be changed around more. Also the hope is that the IVIG she got the other day will assist in her ability to fight these infections. These infections will continue to show up since they are all related to the fact that she has a trach, having an artificial airway will always increase her risk of infection. So we are stuck, Dr Mallory seems very optimistic that she will get listed but we have to get her over this hump. The PICU Dr's dont seem as sure about things. And I have no idea what to think anymore.
Matt stayed at the hospital last night, and it was a rough night! Her blood sugar was low, her blood pressure was dropping all night, and her oxgyen satruation was low 90s/high 80s on 100% oxygen. Today she hs been having more issues with keeping her satruation up, again Dr Mallory came in and bagged her to find the "perfect settings for her". She is again on higher pressures, every time he increases them the PICU team trys to wean them down. I think they had a meeting earlier and discussed her needs and what will work best. So HOPEFULLY everyone is on the same page now. Since he made these adjustments on her vent she was able to wean down to 75% oxgyen with saturations around 94. So a big improvement from sitting at 85 on 100% oxygen which was what she was doing for the hour before he came in.
I have mentioned before that she had an arterial line in so that they could measure her blood pressure and also draw blood for her labs from it. Her artline from Vanderbilt went bad the day we got here and had to be removed. They were able to start a new one in her wrist and it also stopped working earlier in the week. So they put a new one in her foot, which stopped working yesterday. Last night they tried twice to get a new one, and today tried again with no luck. She HATES being stuck and being stuck in an artery is more painful than getting a regular IV. They are planning to try again this evening after she has time to calm down from all of this. They were able to get an ultrasound of her foot and found a good artery to try for, hoping they can get it, since without the line she has to be stuck numerous times a day for labs/blood gases. She is very puffy/swollen from all the meds/fluids she gets so its hard for them to find any place to stick her.
Her stomach is still huge and gross looking. They have stopped her feedings today and she will just get TPN/lipids for nutrition. Hopefully they can get her digestive system working better today and be able to start feeding her again soon.
So I guess the good news for the day is that she is still off the paralyzing meds, so that is something to be thankful for. She doesnt really wake up since she is still heavily sedated. But she does move her fingers/toes and her mouth alot. She holds onto our fingers when we try to comfort her and that definately makes us feel a little bit better knowing she can tell we are here for her.
Lets hope that Elizabeth's first Christmas is one of stablilty. That she can stay stable and calm through the weekend, and her infections start to clear up and her CRP number dropps significantly by time for blood draw Monday morning!

Thursday, December 23, 2010

Thursday, December 23, 2010 10:37 PM, CST

Just to kinda catch up on happened yesterday. Bascially Elizabeths oxygen satruation was sitting in the 70s/80s and she was not happy at all, of course this was also during the time when the surgeon decided to come by and see her. She had her 7th blood transfusion, was given numerous types of meds to try and get her to oxgenate better. And of course they saw a new air pocket in one of her lungs, but not in an area where they could easily out a chest tube in, so we wait and see how it goes with that. She continued to have a crappy morning yesterday and then Dr Mallory came in and made some major vent changes. She was finally in the 90s,  her heart rate was much lower and they have been able to wean the amount of oxygen she was on down from 100% to 60-65%. She stayed stable all night last night. The down fall of this is when I say he made major changes. She is now on exteremely high pressure support and her lungs are very over inflated to ensure she is able to oxygenate. This is just showing how sick her lungs really are and that they are not getting better. So even though I say she is doing better, its all relative to the situation.... Better that she's not sitting with an oxygen saturation of 70 on 100% but still really crappy that basically she is on the verge of not being able to go up any on the ventilator settings.
So bascially the surgeon did not feel Elizabeth is a good candidate at this time. He thinks she needs to get rid of her infections, and that she needs to stop being paralazyed. Plus the fact that he saw her on the worst possible day since we have been here didnt help her situation any!  He wants to be sure he is not doing surgery on a kid who has a poor chance of coming out of the surgery and doing well. Needless to say I was very disappointed and upset about this and the fact that I felt it was not explained to us yesterday did not help. I asked alot of questions today about all of this and I feel that we now have a "game plan" to get her to approved.
After changing all of her vent settings yesterday they gave her the night to chill out and this morning STOPPED paralayzing her. She has done Ok with it most of the day as long as they stay on top of her sedation when she starts getting aggitated. This is the longest she has been able to stay off of it since mid November. Fingers crossed that she continues to do ok with it. IF she needs to be paralayzed, its not a total deal breaker for transplant, but they need to see for themselves that she is still able to move and function. Her steroids also need to be weaned down, since they affect her ability to heal after surgery. They were attempting to wean them and after her epsidoe yesterday, the decided to do weekly pulse doses instead of daily doses. The issue of the infections...She is now on 2 IV antibiotics, 1 oral antibiotic, and 1 inhaled antibiotic. The plan is to get her infection cleared up and keep her on the inhaled antibiotic until transplant. They are monitoring bloodwork that shows inflammation in her body, they check this number Mon, Wed, and Fri. So it will be checked tomorrow morning and if it is significantly lower, and trending down then that is a good indicator that she is improving. So if she can stay off the paraliytic and this number in her bloodwork goes down we can hope she will get listed next week-maybe.

I should have known nothing would be easy for her, and this process is no exception!! Hopefully one day soon, she will get a break. Her status changes from one minute to the next and it's frustrating to watch and not be able to do anything! Even when she gets listed we still have a wait ahead of us. She could be waiting for new lungs for months, and at any time if she becomes sick or unstable she can be removed from the list. I am stressing out right now knowing how hard it is just to get on the list, let alone how we will manage to keep her on it once she is listed!!

Wednesday, December 22, 2010

Wednesday, December 22, 2010 8:54 PM, CST

I just spent an hour typing an update to have the stupid internet disconnect and lose it!!! I dont have the patience to re write it all so just know that today SUCKED and she did NOT get listed for transplant. (TO CLARIFY~ doesnt mean she wont be listed, just didnt happen today, will explain more later)  She is doing better now and is stable.

I will update more later when I have time and dont feel like smashing the computer into the wall!! :)

Wednesday, December 22, 2010 8:46 PM, CST

I just spent an hour typing an update to have the stupid internet disconnect and lose it!!! I dont have the patience to re write it all so just know that today SUCKED and she did NOT get listed for transplant. She is doing better now and is stable.

I will update more later when I have time and dont feel like smashing the computer into the wall!! :)

Tuesday, December 21, 2010

Tuesday, December 21, 2010 6:42 PM, CST

Elizabeth was seen by neurology and had another EEG on her brain to check for seizures, nothing was found there. So she can add their "approval" along with that of genetics, cardiology, ENT, pulmonology and physical therapy. She had a ultrasound of her liver done today, which appeared normal but her gallbladder had some slug in it, but they think its related to not feeding her in her stomach so no real concern right now. She had a foley catheter placed this morning to do a 24 hour urine collection as part of the transplant evaluation. So basically we are done with evaluation except for the biggest part, seeing the surgeon! They were supposed to meet us today but were busy, so we are hoping for the morning so that she can get voted on tomorrow. We were told they plan to discuss her at the meeting regardless but she can not be listed until the surgeon gives their approval. So hoping they make it by bright and early.
She continued to have a crazy night last night, her saturations ranging from 70s-100 but she was always able to recover with additional sedation and being bagged. She had a few episodes today as well. All of her sedation medicine drips were increased. And I think I forgot to mention on Saturday, she was put back on the paralyzing medications. She was unable to maintain her saturations and her level of aggitation was too much without it, so it seems like she will have to remain paralyzed and sedated until transplant, unless some major improvements happen. They have tried to wean her oxygen but the lowest they have been able to get to is 90 and she still requires 100% the majority of the time. Again, this all seems related to the infections she has again. She had two different bacterias growing from her trach culture, one is the same as she had a Vanderbilt and the other is a new one. They have added an additional antibiotic, so now she is on 3. We were told these infections will not affect her ability to have a transplant. The only other change for today was that they are trying to wean her steroids to a much smaller dose. I voiced concern over this, since in the past this has caused her issues. But Dr Mallory assured me he will be keeping a close eye on it, but she needs less steroids to help with her healing after surgery. Also, she is again not tolerating her feedings. They had been able to get her to full feedings at Vanderbilt before we left but stopped feeding her for transport here. And as soon as they restarted them here, her belly got huge and bloated looking again. So they are slowly trying to start them and get her digestive system working, so for now she is getting small amounts of formula and TPN.  We are also still trying to get her feeding tube issue addressed, hopefully we will be able to start using the feeding tube in her stomach again soon.
Thats basically it. I walked a couple blocks to get dinner tonight and got a chance to enjoy the nice weather here :)
I feel like I am living in daze right now, I really want her to get on the transplant list but I really worry about how she will do when transplant time comes. Its a strange feeling, knowing that we have to do this or we will lose her, and at the same time not knowing how this will affect her and the possiblity we may still lose her. I really want this to be a new beginning for Elizabeth. She has fought so hard and been through so much, I just have to believe that she will and can keep fighting. If she can have even one day of normal then all of the sadness, worry, and tears will be well worth it. The transplant team keeps telling us this is all a leap of faith, which basically sums it up.

Monday, December 20, 2010

Monday, December 20, 2010 10:54 PM, CST

For those who have asked

Our Address:

Matt or Sheila Jetton
C/O Ronald Mcdonald House
Room 24
1907 Holcombe Blvd
Houston, TX 77030-4123

Monday, December 20, 2010 8:50 PM, CST

First off, I wanted to say how grateful I am to the nurses/doctors/social workers and our awesome case manager at Vanderbilt and TC Thompson. I know a lot of times I only post the negative things or bad experiences we have. But there are many times that these people have went above and beyond what is required of them. They have cared for Elizabeth as if she were there own, and listened and worked with Matt and I to ensure we were making the best possible decisions for Elizabeth. We have been very fortunate to have met some amazing people who have helped and supported us during the most difficult days. If it were not for these people working so hard to keep Elizabeth we would have never made it as far as we have. And I just hope that they all know how much we appreciate them!

So now on to news in Texas!!  Elizabeth started off the day with a high heart rate and low saturation. And guess what….Another infection. Her white blood cell count had doubled since yesterday, so they did cultures of her trach and blood. She was started on 2 different antibiotics. And didn’t spike a fever until later this afternoon, but that’s common for her since her immune system is suppressed. So for now she is on 100% oxygen again, and her saturations are ranging from 87-91. For now they are ok with that since we know the cause, hopefully when these meds kick in she will be able to wean back down on her oxygen.

To share some things I learned about evaluation. Bascially transplant evaluation is a time for the doctors to find reasons to say No. They are looking for any reason why a “resource” AKA lung should not be “wasted” on a child who would not have a normal life if given the chance. We are confident that Elizabeth will pass all the tests, but the chance they could say no scares us!

We met with Dr Mallory today, he is the transplant pulmonologist and the man who thinks Elizabeth is a good candidate. He wants to get this evaluation done within 48 hrs to meet the Wed meeting! We LIKE HIM A LOT!! Granted that is just a goal and there is lots to get done so we will see, but he is pushing so we hope it happens. He explained all the above to us about the evaluations being done and he warned us  the surgeon will be our biggest obstacle. The surgeon will be the one who really tries to find and give reasons to say no to transplant.

Also, I dont think I mentioned on here before. But when I spoke to Lucy's mom (the other girl who has the same diagnose as Elizabeth) she told me I should ask about her IGG (immuoglobulin) level. Her daughter had hers checked prior to transplant, when she kept getting infections and was found to be extremely low. This basically means she has an immune defiency. We requested Elizabeth be checked while she was at Vanderbilt and was found to be low ~IMAGINE THAT. So we are thinking she will benefit greatly from getting IVIG (Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.) Vanderbilt had planned to give it but had to wait so that Texas could get all her pre-transplant blood work done, since IVIG will change her immunities and her blood make up. We have been adament about asking since we got here about getting it and today numerous Doctors today told us we needed to "wait and see" if she really needed it since its expensive and a rarity here apparently. Well Dr Mallory immediatly told them she needed it and needless to say she just finished her getting her first IVIG dose ~ told ya I like him :)

Today, she was seen by ENT, Genetics, and had an echo done. The Social worker came by and we were referred to and got a room at the Ronald Mcdonald house.  So that is good news, the house is about a mile from here. We have been getting a sleep room at the hospital the past few nights, and taking turns sleeping while the other sits up or sleeps in Elizabeth’s room, in the very uncomfortable chair. The sleep rooms are similar to Vanderbilt. You sign up in the morning and find out in the evening if you got it, you get to use it from 9pm-11am and then turn your key back in. The sleep rooms can be used during the day for naps/showers if you sign up in the morning. So now that we have a room at the house, one of us will sleep there at night and the other will stay in Elizabeth’s room and during the day the other will get a nap room or go to the house for a break.    We can have mail sent to the house, I will post our address when I get a chance to verify it with them.

Hoping for an busier day tomorrow. Doesn’t feel like a lot got accomplished today. But for a hospital day I guess alot really did happen. Hoping that her infection goes away quickly and she can maintain decent saturations.

Saturday, December 18, 2010

Saturday, December 18, 2010 10:13 PM, CST

I think Elizabeth likes Texas! She has done well today. Her sedation Med doses have been adjusted and a few changes were made to help ensure she is comfortable. Her paralytic was cut in half with hopes of stopping it tomorrow. She was moving and opening here eyes earlier, she is fighting through this half dose:) she had a few episodes were her saturation dropped to 85 but with more Meds she chilled out and recovered pretty quick. She had lots of blood work done today as part of the transplant evaluation. And looks like Monday will be a big day for tests and meeting the rest of the transplant team. We are still hopeful we will know about getting her listed on Wednesday. But we aren't sure how much stuff needs to/can be done in time for the meeting then.
My big news for today is that Elizabeth has her first tooth!! For months she has been chewing and drooling on stuff. We kept thinking we felt something but never saw anything. Today I checked her gums and she has a little troth coming through on the bottom right side :)

Matt's dad and stepmom drove our car down from Nashville they got here earlier today. For those who dont know it's about a 13 hour drive. So we are very thankful to them!! Please keep them in your thoughts and prayers for safe flight back to Nashville and then drive back to Chattanooga tomorrow.

Friday, December 17, 2010

Friday, December 17, 2010 9:06 PM, CST

We are all safely in Texas. Elizabeth did really well with transport and is settled in here new room. We of still adjusting to a new place and new people and of course ensuring we are kept in the loop. We are struggling with the new set up of not being allowed to sleep in her room, so we may be sleeping in shifts. I just can't bring myself to leave her.
I met with one of the transplant doctors today when we got here and they really want to stop paralyzing her. So hopefully that's on the agenda for this weekend. I am very overwhelmed with this place so I will update more later.

Thursday, December 16, 2010

Thursday, December 16, 2010 10:36 PM, CST

As most of you can imagine, I dont think I will be able to get much sleep tonight! The plan is for the flight crew to leave Houston for Nashville around 7ish and be here at the hospital around 1030-11. From what we have been told the flight is about 2 hours. Basically the same transport as we did from Chattanooga to Nashville. An ambulance will take us from Vanderbilt to airport we will get on a small plane and then fly to Houston and get another ambulance ride from the airport to Texas Children's. Needless to say that is alot of manuvering of equipment and moving for Elizabeth. She is still very up and down when she is being messed with so we are concerned how this is going to go. We hope it will be a smooth transistion from the hospital equipment to the transport equipment and back to hospital equipment when we get there. She will be put on a different ventilator/nitric oxide and IV drips. So it will be alot of work getting her ready to go and then getting her settled once we get there. Matt has booked a flight leaving Nashville tomorrow and should get to Houston around 5 pm, and then he will be able to meet up with us at the hospital.
The family in Houston whose little girl recently had her transplant in September will hopefully be around when we arrive tomorrow. Her Mom and I are planning to try and meet, it will be good to see a child who is doing so well after transplant and get more info on the hospital/drs and transplant in general.
  So, my feelings about all of this!! I am so scared of this trip because I know when we leave Tennessee tomorrow our lives will change forever. When we come back home it will either be one of the happiest or saddest days for us. I feel sick thinking about it. I want so badly for this to be our miracle. But I also know for us to get our miracle another family will have to lose theirs. I think that is one of the hardest things about transplant, wanting so badly for us to get listed and get lungs. But knowing that another child will have to die so that she can live. I only hope that when the time comes the donor family knows how speical their child is and what a difference they will make for our precious Elizabeth. My family has now been on both sides of organ donation this year. My brother in law passed away in July and my step-sister and nieces made the decision to donate his organs. Their loss helped 7 people have a chance at a better life! It amazed me the strength donor families have to make a decision during the saddest time in their lives, to help others. I HIGHLY encourage anyone who is not an organ donor, or anyone who has not thought about it to be consider it and let your families know your feelings regarding it.
Not sure if I will post before we leave in the morning or after we arrive in Houston. But please keep Elizabeth in your thoughts/prayers. For tomorrow we ask for a smooth transport and that she remains as stable as possible.

Thursday, December 16, 2010 4:14 PM, CST

Sorry its been a few days, things have been frustrating with insurance and Elizabeth has been up and down alot over the past few days. She got another blood transfusion this morning # 6 this stay. She had an episode last night and dropped into the 60s, but she was able to recover and has done well all day.
  The BIG news today is that insurance approved our transport to Texas and the evaluation! We will be flying out in the morning sometime. I will be able to fly to with Elizabeth and Matt will be flying seperately. I spoke to the transplant coordinator and she seemed very nice and helpful, they are hoping to start her evaluation process tomorrow and work on it this weekend and hopefully finish it up early next week.
So in preperation for her big flight Elizabeth's nurse wanted to get her ready today. Elizabeth got a bath today and her finger/toe nails painted.

Tuesday, December 14, 2010

Tuesday, December 14, 2010 12:35 PM, CST

Insurance approval has not been granted yet for us to be transported to Texas, so for now we will be waiting here until they can get everything together and approved. Hopefully soon.

Monday, December 13, 2010

Monday, December 13, 2010 12:36 PM, CST

Well Texas knows we want to go there, and they want us there TOMORROW!!!! If we can get everything approved via insurance and trasportation arranged, we will hopefully be there tomorrow. I think the Dr is on board with wanting to get her listed by Christmas (I like him already). There is still a chance that they wont list her if her evaluation doesnt go well or something like that, but we are hopeful that things will work out for her. Please send prayers/thoughts towards that goal today, for a quick, easy, and stress free transport for Elizabeth.

Sunday, December 12, 2010

Sunday, December 12, 2010 9:52 PM, CST

Gotta love my ability to locate people via the internet ~ Must be part of my awesome police skills ;)

I was able to find the most recent infant transplant recipient at Texas Childrens a little girl named Faith, who got her lungs in September. I emailed her mom and she was so nice to return my email, and we were able to talk on the phone for a while tonight.
She gave alot of info on Texas and set my mind at ease. SO we have decided in the morning we will proceed with getting transferred to Texas. At this point we feel delaying transport to contact St Louis would put Elizabeth at greater risk. We have heard great things about Texas, and I have researched their stats and feel that it is just as good of a choice as St Louis. We also feel that things have just fallen into place for this and feel that it is the best option for us at this point. So new goal is to get to Texas ASAP, and my wish is for Elizabeth to be listed for transplant by Christmas (thats just my wish not sure how realistic it is but we shall see).
  We will update as soon as we know more.
So please pray and hope we can get this approved quickly and that the weather clears here so we can get outta here this week!! It has been snowing in Nashville all day.

Sunday, December 12, 2010 2:42 PM, CST

Not a whole lot new this weekend. They changed her morphine drip to dilaudid and added a new sedation drug precedex into the mix along with her versed drip, plus all the as needed meds she has plus the scheduled methadone/ativan. She is still being paralyzed :(  They tried to turn it off yesterday to see if she could  tolerate it. She did well for about an hour and then her satruations dropped again. The nitric has been weaned from 20 down to 10ppm. Her oxygen requirement was as low at 50% yesterday but depending on how things are going shes been anywhere from 50 to 100% throughout the weekend.  So basically still not really improving and showing us more and more we are on the right road with choosing transplant at this point. We should have a decision tomorrow regarding what we want to do and hopefully a better plan.

Friday, December 10, 2010

Friday, December 10, 2010 5:53 PM, CST

Today was semi-stable compared to recent days. Elizabeth had a little episode this morning where her saturation dropped, but was able to recover pretty quick. They did a broncospy on her lungs to see if they could determine where the blood what coming from in her trach. Her left lung shows some irritation, but no active bleeding so they think it just goes to show how "sick" her lungs are. She still has the chest tube in and it is still leaking air. Her oxygen has been able to wean down to 60% and they weaned her nitric down to 10ppm. She seems comfortable with the sedation/paralyzing meds and has only needed a few extra doses today.
    Now for the BIG news of the day! We had our conference call with Dr Mallory at Texas Children's Hospital along with one of the PICU Dr, and our Pulmonlogist. We basically went over the requirements for trasporting Elizabeth and asked some questions about their transplant program. Dr Mallory stated that Elizabeth can be transported as is, with the chest tube, nitric, vent and all. He would recommed she be stable for 72 hours and that we could be in Texas as early as next week (pending our desire to transfer there and insurance approval). He felt that Elizabeth is a good candidate for transplant and that it is very likely that she will be listed after evaluation. He said that most of her testing for evaluation has already been completed and the process would only take a couple days and then be presented to a medical review board for vote. Once the review board vote yes, she will be listed and THE WAIT begins.
  Talk about a lot to process, I know we have been headed towards this route for a while. We have known since birth that Elizabeth may end up needing a transplant but hoped and prayed she would not. Now that we are here, I am hoping and praying that they will list here. Based on the events of the past month, I truly in my heart feel this is our only option at giving her a chance at a somewhat normal and happy life ~ possibly FREE from all tubes! I can not even imagine what it would be like to hold her without her being attached to a machine, to see her breath easily and not struggle. That is now my new dream!! No more oxygen, ventilator, trach! I realize transplant life isnt easy either, there will be complications, medicaitons, and continued hospital visits for the rest of her life, but she will be alive and that is all that matters!
I know we still have to get approved to be listed, and am trying not to get my hopes up (just in case).
I will update more later as we find out anything. I also have some interesting news to share about a family I found that has a 3 year old with Elizabeths SAME condition!!

Thursday, December 9, 2010

Thursday, December 9, 2010 11:22 PM, CST

The day was ok, still kinda up and down alot with her oxygen. And then tonight out of no where she started to desat. Her saturation was as low ast 55 and she was struggling to breath. It looked like it was actually hurting her to breath. They were able to bag her back up into the 80s and gave her some extra sedation and paralyzed her. They got a chest xray and while waiting for the results she started to desat again getting int0 60-70s. The Dr quickly returned after reading her xray and told us that she had a very large pneumothorax ( A collapsed lung, or pneumothorax, is the collection of air in the space around the lungs. This buildup of air puts pressure on the lung, so it cannot expand as much as it normally does when you take a breath.) So basically her right lung was compressed, causing to have even more difficulty breathing than normal. While he was trying to explain this to us a bunch of people and a sterlie tray/crash cart were wheeled to our room. They had to put a chest tube in immediately to prevent her from getting worse. The tube is now venting and allowing all that built up air to release.  The procedure went well and she is now again paralyzed and her sedation meds were turned back up. OH, and she's back on nitric oxide :( 
This night has been exteremly crappy! But at least we have a "reason" instead of her lungs just being bad. She of course is fighting the paralitic and is still moving some, even after it has been increased so we will see how the rest of the night goes with that. They have been able to wean her oxygen down some from 100% after this latest event. 
  As for the rest of the day prior to this, we continue to be concerned about the blood they have been getting from her trach. We were told pulmonolgy will do a bronchospy to look at her lungs and make sure there is no damage or tramua that is causing this bleed. (For now they think the collapsed lung is unrelated to the blood). We will be having the conference call with Texas tomorrow around 330pm. This call will determine whether we go to Texas and if transplant is even an option for her at this time. I hope that whatever she needs the Drs make the right decision for transporting her and do it when the time is right for Elizabeth.
  Please pray/hope for an uneventful night, I think she has been through enough for one day!

Tuesday, December 7, 2010

Tuesday, December 7, 2010 11:53 PM, CST

12710~ Elizabeth is a little less sedated and have enjoyed having her paci back DISCLAMIER~~ Some of the below information may seem as though things are worse or not improving that is NOT the case. She has continued to improve today and is still fighting just as hard as ever!! We are just preparing ourselves for the continued rollarcoaster. Some of my opinions and thoughts may upset some people or even make you feel as though I have given up hope. It has not, I just feel the need to share my feelings and hope that everyone understands me.

Today the attending PICU Dr asked if he could refer us to the Palliatve Care Dr. For those who dont know here is a definition: "Palliative Care is specialized care that focuses on patients who are facing life-threatening illness or injury. The primary goal of palliative care is to provide expertise and treatment plans for symptom management, as well as spiritual and emotional support while considering the whole patient and their situation."   
       The Dr told us he doesnt think that Elizabeth is worse or anything like that but we know that her condition is life threatening, and we have no idea what the future holds. The constant back and forth with her being well and then being really sick and being in the hospital so much is concerning for the Drs and for us. He felt it would be benefical for Matt and I to have a resource to help us with making some very tough decisions regarding her care. Basically the Pallative Care Dr does nothing to treat Elizabeth, they are soley there to help us make decisions and provide information and support for managing Elizabeth's care.
     We have known from the beginning that Elizabeth would decide what course she would go as far as getting better or worse. We realize that we have done alot of invasive and aggresive interventions to help her, and are now considering the most invasive thing possible. We can not go into this process blind and ignorant to the fact that it carries just as many risks as it does benefits. And I need to make sure that everyone else understands that as well.  Lung transplant if needed is not a cure, but another treatment with side affects that could end her life. I think all of us are past the point of thinking that we are going to wake up tomorrow and she will be healed, for so long I kept that dream hoping I would just wake up and she would be better. I know that is what everyone wants and I would give my life to make it happen. But reality is she is and has been very sick. Even when it seems that she is doing "good" she is still a very sick baby.
      Please dont think that I have given up hope that she will get better, I still think there is a chance if we do all that we can and give her the most support possible she can grow and thrive and have a happy, healthy life. I am getting my mind in the right place, of knowing that her life just may not be as long as I want it to be. I need to prepare myself for that and I need to be able to say that outloud and not feel guilty or wrong for being realistic. There are not enough cases of her disease to truly know how to treat or care for her, or what the outcome will be. If I dont prepare myself now, I am not sure I will be able to handle it when/if that time comes.
    Today Matt went home to take care of some things and I was here alone to meet with the Pallative Care Dr. Lets just say I didnt like having tough questions asked and I hated crying in front of this stranger because Its hard to speak the words outloud that I am afraid. Its easy for me to sit here and type it in this journal and not be face to face with someone making me say it outloud.  Being a police officer, I have learned to try and hide my emotions and not let things "get to me". I have tried hard to hide the hurt and fears I have. But I am realizing that i need to confront them or I am seriously going to lose my mind here ;)  One of the questions the Dr asked me was how I thought Elizabeth's quality of life was, of course I described how happy and playful and smiley she is when shes awake and at home enjoying life. But then she asked me to step back and look at this entire year, and how I thought her quality of life was when I did that.
 When I look at it like that it does seems pretty crappy! I mean she has been in/at a hospital all but 3 1/2 months this year. She has been sedated/paralyzed more time than I can count. She has had so many tests/xrays/echos/shots/drugs and other things done to her. Shes had tubes stuck down her nose and throat, catheters and temp probes stuck in her. And many other things that I dont even have the time to type out. She has relied on oxygen or machines her entire life just to be able to survive. Its just not fair! She deserves so much better and no matter how hard she fights its like she can not get a break.
  Ok this has been long enough and I apologize for saying some hard things and hope everyone understands where I am coming from. I love Elizabeth more than anything in this world, and will do any and everything I can to improve/extend her life for as long as possible. But I refuse to make choices based on my greed of wanting her here for me, I need to know the choices we make for her are beneficial and will improve her life and help her.  Everyone says Elizabeth has a purpose here, and I really think her purpose has been to teach me and everyone else. Our journey has shown me that we have to cherish each day and make the most of it.  That is exactly what I plan to do. No matter how long/short her life is, I want to know that I did everything to make her know how loved she is and that she was as happy and painfree as possible.

Monday, December 6, 2010

Monday, December 6, 2010 7:36 PM, CST

I know I know you all will be shocked to hear.... another day of good and bad! She started the morning pretty good and then started waking up some when the nurse had to move her. Then "they" decided it would be a good idea to  try and do an echo on her heart before she got back to a stable/chilled out state. (You would think they'd learn by now, Elizabeth does not like to be messed with, not sure who she gets that from ;) !!!). So again her saturations dropped into the 70s and she was back up to needing 100% oxygen. I am beyond aggravated because we tell them EVERYDAY. They had to paralyze her and give 4 different sedation meds on top of her drips to get her calmed down and her numbers back to normal. They also started adding methadone/ativan today to try and get her prepared to start weaning her morphine/versed drips. When they gave her methadone/ativan doses today on top of all her other sedation meds, she seemed to respond well and has been resting better since then.  Adding or changing up the meds seems to help since she is so used to the others she is one. She is still getting the morphine/versed drips, as needed doses of morphine, versed, penabarb, and chloryl hydrate (forgvie my spelling, this thing doesnt do spell check and I am lazy today) and today adding the methadone and ativan.

The only new News today is that our main pulmonologist came by and told us he was sending the last of the info Texas needed today. And that we will plan to sit down later this week once Texas makes a decision and discuss transfer. He thinks it would be best to transfer from Vanderbilt to Texas and get her evaluated. Bascially our options from what I have been told and read (this could all change so dont quote me). If approved for evaluation, Elizabeth will go to Texas and have some tests done, we will talk extensively about the benefits/risks, then if they feel she needs a transplant and we agree to it, she will either be put on a wait list or be on the active list. Wait list means shes on the list but does not need a transplant right away and will be activated when they feel she needs it. (basically if she continues to improve and can become stable for any length of time). If she is put on the active list we will begin "the wait" for a match.  Which would mean living in Houston until a match is found, then transplant surgery/recovery, then living in Houston after until she is cleared to come home. So we are talking an unknown timeframe, based on their website average wait time for a match is 2-8 months.
There is still a possiblity that she does not need a transplant, and she can/may improve on her own. But we along with the drs agree that we keep increasing interventions for her and she still requires more and more help. It would be better for us to prepare for transplant and not need it then to wait and need it emergantly and not be able to get it.

Below is a website for more info on the progam at Texas. Copy and paste it in your browser  if you want to read more.

Sooooo.....lots to think about and lots to be scared about. Please continue to pray for her and all the other sick kids. This is scary stuff and I hate knowing so many other families are going through this too.

Friday, December 3, 2010

Friday, December 3, 2010 6:29 PM, CST

Not a whole lot new to add today. Elizabeth is still on the same meds. Her oxygen requirement is still up and down some, but she has gotten down as low as 45% today (which is what she is on at home) but that only lasted for about 20 mins and she had to be increased. But she has definately made progess in being able to wean lower and lower and not have to be on 100% all the time. Her other vent setting and nitric oxide levels are the same, they have not weaned any of that, which is good until she is more stable.
 The new issue is her stomach problems, I mentioned that her stomach is huge right now. They think that all of the sedation/parazlying has slowed down her digestive system and she is now "backed up". They have attempted to start and increase her feedings and it seems to make things worse, because her digestive system isnt moving the stuff through. She has been getting miralax/colase for days and it hasnt seemed to help any. They have lowered the amount of her feedings to a very small amount giving her just enough to stimulate the digestive we will see how things go the next couple of days.
The newest thing today was that we were informed that pulmonolgy made contact with Texas Chidren's Hospital in Houston. We had an interview with social work (which is common for possible transplant families). So our interview along with all of Elizabeth's medical records are being sent to Texas, they will review it and decide if they think she is a candidate and in need of further evaluation. We are still hoping that a transplant is not where we end up, but at this point we need to have all options available. As we know more I will update.
Other than that not much going on here, just trying to stay sane ;)

Wednesday, December 1, 2010

Thursday, December 2, 2010 12:32 AM, CST

I almost hate to update this.. one minute shes great  the next shes not.  I feel like I confuse everyone with my posts.  She had a really good night last night, an ok morning and then a not so great day, then it got better and then it got back to be crappy again. So in an effort to not make this a novel I will list the good and the bad below.

Progess for the Day:
~ First off she has weaned down on her oxgyen and tolerates it for the most part, she is ranging anywhere from 55-75% depending on her mood. And still requires it at 100% when she is having her "episodes" where her oxygen saturation drops. Her oxygen index (or ECMO number (30) as we refer to it) has ranged from 9 to 22 today, so we are exteremly happy about that.
~They turned off the paralyzing medication drip today and she tolerated it for the most part, she is still heavily sedated and has required a few extra doses of sedation today and did need a dose of the paraylitic tonight to help her chill out. So basically that means, she can move around but is still so drugged she doesnt do it very much, and she is still "asleep" all of the time. The main benefit of not keeping her paraylzed is that long term use of those meds can cause damage to her muscles and weakness.
~Physical Therapy came by today, and they have put a splint on one of her hands to keep her muscles and joints limber. She also is having custom boots made to wear so that the tissue/muscles in her feet dont get too weak and droop. 

The downside of today:
~They started her feedings again and got her to full doses and then....Her stomach got extremely full and doesnt seem to be digesting properly, not sure if its related to being so drugged and causing it to slow down or what the problem is.
 Also the feeding tube the placed down her nose to get ensure her feedings were going into her intestines instead of her stomach, apparently moved and is is her stomach. So the formula was going in her stomach from the tube down her nose, and coming out of her gtube in her stomach... confusing, gross, and obviously not working properly!!! So for now she is not getting fed, until this issue is resovled.
~ Still needing heavy sedation, shes still on almost adult dosing drips of versed and morphine. With as needed chloryl hydrate, penabarbatyl and doses of versed and morphine. (She is SOO used to these drugs it takes more and more to keep her sedated!)
~Still on 20ppm of nitric oxidie
~ She grew more "bugs" out of her trach cultures, waiting for infectious disease to get the suseptibility of those tomorrow and decide if her antibiotics need to be adjusted AGAIN. She has had 4-5 different types of baterica grow throughout this hospitalization. We think that has been what sent her over the edge. The fact that her lungs/heart are weak and getting "sick" on top of that. Her body just doesnt have the capability to handle it like a healthy person would. So she is still on 4 different antibiotics to treat all of these random things she has.
~She is exteremely swollen, could be from all the narcotics and fluid retention
~She now has a pressure sore on the back of her head. During her major episodes over the past 5 days they were not able to even move her without her oxygen saturation dropping so this spot formed on her head. Wound Care has been seeing her and now that they can turn her, hopefully it will be able to heal
without causing anymore damage to her skin.
~And I forgot to add they put a catheter back in the other day since her bladder was not wanting to empty fully on its own.

So obviously she has made progress which I am grateful for, but I dont think that means its time to celebrate. She is still no where near being "better" and has a long tough road to go. Slow and steady seems to be the best approach for her, and we are constantly having to remind them of that here. I have to admit, the communication has gotten better since we kinda "freaked out" on them a few times.

Again, pulmonology came by and said they had contacted the Dr @ Cincinnati we saw in July with the rare lung disease program and she agrees that the next step once Elizabeth is stable is to be evaluated for possible lung  transplant. So they are planning to contact a few different transplant hospitals to see which would be best for Elizabeth's case and see what they think about her and if she would be a candidate for transplant at a later time. Depeding on what they decide if possible we will start her work up (blood work, and other testing) here.

In other good news today, we got a room at Ronald Mcdonald House. I am still staying here in the room with Elizabeth and Matt is still getting a sleep room at the hosptial, but our parents will be able to use the RMD room and we will have access to it if we want to get away from the hosptial. We have also decorated Elizabeth's room for Christmas, so it will be ready for her when she is able to wake up.

So heres to hoping that a new month, will bring lots of improvement for Elizabeth! She has to get better soon to celebrate her 1st Christmas and then her 1st Birthday :)