Busy Week

Elizabeth has had a very busy week!! She had another halter monitor done on Monday to check her heart and the meds that she is on for the abnormal heart rate she was having.  She has been able to stay off of oxygen except during nap time. On Wednesday she had the tubes put in her ears and had the granulation tissue removed from her airway. She also had her vision exam on Wednesday, which showed that her eyes are healthy. But she still is not tracking things well with her eyes, so we will just have to wait and see how she progresses. And then today, we downsized her trach again from a 3.5 to  a 3.0. We also tried capping her trach, which means we tried to make her totally use her airway to breath without the pressure the passy muir valve gives. She did well with the smaller trach, but did not tolerate the cap on her trach. She is still on the ventilator at night, but we will be working towards capping her all the time and hopefully will be able to get rid of it soon. When she can be capped for 48 hours they will remove her trach. She is slowly but surely working towards that goal and we are SO thankful!
Its amazing to see her doing so well despite the changes that have occured with her brain. She is definately "different" than she was before she got so sick in November. And we wont really have an idea of how much her brain was affected by the atrophy, and we still dont have a reason why or what the future holds. But we will continue to work with her in therapy and do the best that we can to make sure she has every opportunity to thrive.

Tired Baby after a long week!

Progress

Elizabeth with her 1st sippy cup!

Elizabeth's sodium level is finally within an acceptable range, and her other electrolytes are starting to get back to normal from being so sick/dehydrated. For OT we started working on getting her to drink from a sippy cup, she seems to like it alot so far :) I think that may because she is so dehydrated that she will take anything she can get. So we will how that goes once she is totally back to normal. She has not had anything to eat since Saturday, just IV fluids. We are hoping to start her on pedialyte tomorrow and then Wednesday back on her formula.
   Since she is almost back to baseline with everything they have scheduled her for Wednesday to have the tubes put in her ears and to do the scope of her airway. They plan to remove the granulation tissue from her trachea and hope that it will help with getting her closer to decannulation (removing the trach).

So precious :)

  And for the most amazing progress of the day: Around 1130 today I noticed Elizabeth's oxygen saturation was staying at 100, even on the lowest settings so I turned her oxygen off. We have been trying this everyday and she usually only lasts about 10 minutes before we have to turn it back on. But today she did AMAZING!! I was impressed at 30 minutes, but by 3 hours I was pretty sure we may be making huge progress today. She has been totally off of it all day except during nap times. This is a huge milestone for her. Considering she has required oxygen since 5 minutes after being born. Of course she still has her trach and the passy muir valve but no oxygen attached. So needless to say today was a BIG day! Hoping for a week of continued progress!!

What a week!!

 This picture was from Father's Day!! TOO sweet. There were days we worried we would never get to share these precious moments, and THIS is what its all about and why we fight so hard!!

As I mentioned last week in my caringbridge post, this past week was very busy with tests in hopes of getting out of the hospital soon. Well we had the tests, but wont be getting out soon. Elizabeth's bronchoscopy of her lungs looked great, so we are thankful for that. But it also showed some granulation tissue on the inside of her  trach site that may be occluding part of her airway, and will need to be looked at and possibly removed. She also had her hearing test, which showed she possibly has some hearing loss but she also seemed to have fluid behind her ear drums. So the  fluid will need to be drained and then her test repeated later. So "the plan" was to have the tissue looked at/removed and tubes placed in her ears Friday last week. BUT Elizabeth got really sick on Wednesday night and they did cultures and started her on antibiotics to rule out infection. I ended up getting sick on Thursday, and Matt got sick on Friday. So the upside is that it appears to be a stomach virus that the three of us all got. But it hit her the hardest because of her lowered immune system. Her sodium levels have pretty high and they are replacing lots of fluids since she is so dehydrated from throwing up/diarrhea. We are hoping her levels get back to normal within 2 days. They stopped feeding her today to help give her stomach a break and also stopped all the antibiotics since nothing has grown from the cultures and they are pretty sure since we all got sick its just viral. So hopefully this weekend will be uneventful and she can just rest and rehydrate :)  Once she is back to normal we will schedule her procedure and a swallow study. Hoping sooner than later!

This is Elizabeth yesterday, looking pitiful and sickly :( Poor Baby!!

Saturday, June 18, 2011 9:42 AM

Just a short update to let you all know about the results from the PH probe. It looks like she is not refluxing and will NOT be needing the surgery on her stomach!! We are still waiting for the final word from the surgeon but as of now pulmonology is pretty positive that he will refuse to do it. So for us that is great news!! But again, if she continues to have issues with gagging/vomiting it will be re-evalauted and at some point in the future she may need the surgery.

So our "plan" now. This week she will have an echo on her heart, her hearing exam and the bronchoscopy to check her lungs for signs of infection or rejection. IF all of those go well we should be heading to our apartment here in Houston soon. She is up to 10.5 hours on the passy muir valve/oxygen during the day and still on the ventilator at night. Which means we will have to have home nursing care at the apartment, which we are not excited about. But we will continue to work towards weaning her off the ventilator and eventually getting rid of the trach. And then we will see where we stand at her 3 month post transplant exam at the end of July.

Hope everyone has a great Father's Day weekend!!

Friday, June 17, 2011 10:10 AM

Today marks our 6 month stay here at Texas Children's Hospital. Some days it seems like we have been here much longer, and others no where near that long. When I think about all Elizabeth has been through and all the decisions and emotions Matt and I have experienced I truly wonder how we did it. I am still amazed at just how strong Elizabeth is and all she has endured.

I went back and found my last post from the night before we left Nashville 6 months ago:   "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 special their child is and what a difference they will make for our precious Elizabeth"

And that basically sums it up! We knew when we left Tennessee that we would return home two ways: either without Elizabeth, or with Elizabeth and lungs of angel. Either way our lives are forever changed. We are so very grateful to EVERYONE who has supported us emotionally and financially. We realize how lucky we are to have such an amazing support system. And we hope that you all know we realize we would not have been able to do this without your help and support.

I know we always talk about wanting to be home and missing our normal. But I know being home sooner and being normal again would have meant being without Elizabeth, so until she is ready we are perfectly capable of being where ever she needs for how ever long that may be. 

Friday, June 17, 2011 10:10 AM

Today marks our 6 month stay here at Texas Children's Hospital. Some days it seems like we have been here much longer, and others no where near that long. When I think about all Elizabeth has been through and all the decisions and emotions Matt and I have experienced I truly wonder how we did it. I am still amazed at just how strong Elizabeth is and all she has endured.

I went back and found my last post from the night before we left Nashville 6 months ago:   "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 special their child is and what a difference they will make for our precious Elizabeth"

And that basically sums it up! We knew when we left Tennessee that we would return home two ways: either without Elizabeth, or with Elizabeth and lungs of angel. Either way our lives are forever changed. We are so very grateful to EVERYONE who has supported us emotionally and financially. We realize how lucky we are to have such an amazing support system. And we hope that you all know we realize we would not have been able to do this without your help and support.

I know we always talk about wanting to be home and missing our normal. But I know being home sooner and being normal again would have meant being without Elizabeth, so until she is ready we are perfectly capable of being where ever she needs for how ever long that may be. 

Thursday, June 16, 2011 10:09 PM

Elizabeth did well yesterday with the PH probe, or as well as you can with having a tube stuck down your nose and throat for 24 hours. We should have the results of it tomorrow and a decision will be made on whether or not she needs the surgery on her stomach. Hoping for good news, but at this point we are preparing for it either way. Once we get a decision on the stomach surgery, we will also get her 6 week (late) bronchoscopy schedule for next week. And if needed the surgery on her stomach will be scheduled at the same time, so she only has to undergo anesthesia once.

 Today we changed her trach again. The Dr wanted to try to downsize again to a 3.0.  But Matt pushed the idea of just using a different 3.5 trach that has a different type of cuff. The "new" trach is the same diameter as her old one but the length is shorter and the cuff on the inside is much smaller. The idea behind this is that she can adjust to this change and then once she is used to it we can start downsizing the actual diameter. The Dr thought it was a good idea too. ~ Matt is so smart sometimes :)  So Matt and I changed it out this morning and then she was able to do 8 hours on the passy muir valve with no problems. Her CO2 levels were good today as well. So progress, slowly.

In other news, I was able to help LifeGift tonight with a ceremony where they recognize donor families. I can't even truly explain the feelings I have when I see these families and hear their stories. It breaks my heart to see the sadness as they remember their loved ones, and a sense of guilt overwhelms me. It reminds me of our donor family, everyday that I look at Elizabeth and see her smile, get to change her clothes, or just watch her sleep, I am reminded of their loss. And I am SO very thankful that they chose to save my daughter's life.

While at LifeGift I was also able to meet the nurses who went with the surgeon to get Elizabeth's new lungs. Its pretty neat to be able to meet the people who helped make all of these updates possible.

We are so thankful for everyone who has helped us get to this point in our journey. We know the future is still uncertain, but in reality, its uncertain for all of us no matter how healthy we may be right now. 
Life truly is a Gift, and each day is special ~ whether your in the hospital or not ;)

Tuesday, June 14, 2011 9:52 PM

My last update I told you about a few tests and changes that were planned for Elizabeth. I kinda tried to break those things down for you below. Sorry if this post is a bit long.

First off Elizabeth had her MRI of her brain last week. Our main reason for having the MRI was because she has not be tracking things well with her eyes. The MRI was ordered to help us see if there was anything going on neurological that was affecting her vision.  And they did find changes on it. Her brain appears to have had some cerebral atrophy.  I have pasted the definition here: (Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls.) In Elizabeth's case it appears to be generalized meaning it appears as if her brain has shrunk some. They do not know the cause of this. In order to rule out lack of blood flow to her brain she had a CT angiogram done yesterday to check the vessels in her brain. Thankfully that test came back normal. So for now they are just going to monitor her. The Drs have said that this could have be caused by medications she has been on, or just being chronically ill. We still do not have answers regarding her vision, so we will just have to watch and see how she progresses.  And we will continue to work on her development with PT and OT. We hate that she keeps having one issue after another. And that we dont really have an answer as to why this happened or what it means.

As for good news, she has been tolerating the passy muir valve and has increased her time to 8 hours as of yesterday. And was doing awesome with it. She has also started working on weight bearing exercises with physical therapy. She has been using a device that they strap her into that helps her stand. She has also been trying new baby food, and doing well with it.

Today in an effort to see how much she could tolerate, we downsized her trach. Matt and I changed it this morning around 930am to 1 size smaller, and she was on the passy muir valve with a goal of 12 hours today. She was very fussy and seemed super sleepy most of the day which started to concern us. Since the last time she was this way her CO2 level was extremely high. So we asked the nurse around 5pm to check her blood gas and told her we wanted her put back on the ventilator. As the nurse was getting the blood gas, Elizabeth started to turn blue and her oxygen saturation began dropping. Matt and I did an emergency trach change and put her old (bigger size) trach back in. And got her hooked back up to the ventilator. She recovered pretty quick, and we were able to get her calmed down. When the blood gas came back, her CO2 level was very high. Needless to say, this was pretty scary for us. It really took me back to how things were before transplant, and I NEVER want to go back to that. So tomorrow we will reevaluate our plan/goal for downsizing her trach. She just may not be ready to do it yet, but we can still continue using the passy muir.

The next "hurdle" for the week is her PH probe tomorrow. They will put a tube down her nose into esophagus and leave it there for 24 hours. It will measure the amount of reflux she has. Once we have these results we will discuss whether or not she needs surgery to redo the nissen fundoplication that she had done back in August, which is "supposed" to stop her from refluxing/vomiting. We are hoping that the results are good and she does not need another surgery.

I try not to get discouraged and just appreciate what we have. I know things could be ALOT worse and we are lucky for the progress she has made. It just frustrates me sometimes that she has to go through all of this. She deserves a break from bad news!! Hopefully she will continue to make lots of progress this week and we can get closer to getting out of the hospital.

Monday, June 6, 2011 6:15 PM

Elizabeth is still doing well and making progress. She does really well with the passy muir valve. Her times on it have been extended, she started out at 30 mins 2 times a day, and is now up to 2 hours 2 times a day. When she is on the passy muir she is down to .2 liters of oxygen. YES that is .2, which is the least amount of oxygen she has EVER required. But when we put her back on the ventilator she still needs about .5-1 liter of oxygen. We will continue to extend her times on the passy muir valve, with a goal of 12 hours daily (maybe be mixed with trach collar). And she is still going on full ventilator support at night to let her rest.  We are feeling better about things, before we were concerned that her progress was slow because the lungs were having problems. But as the doctors kept telling us, it looks like she just needs to get the strength to do all the work, and as she gets it we will be able to wean her more and more from the vent and hopefully lose it and the trach. But it will be a slow process.
    Last week she had the upper GI to check the nissen fundoplication and decide if she needs surgery to redo it. We are still waiting for the surgeon to review it, and we will decide on something then.
   Last week she was also seen by opthomology due to a concern with her vision. Her eyes dont seem to track very well. This could be caused by all the drugs she has been on, or it could be related to the neuronal migration disorder she has. Just to be sure there isnt something else going on she will have an MRI tomorrow morning of her head/brain. And then on Thursday she will have a hearing exam. Better to get all these tests done and out of the way while we are inpatient now instead of having to come back in for them later.
   Elizabeth will also be having her 6 week post transplant bronchoscopy done either this week or most likely next week. The bronch is where they put a scope down her airway and check her lungs for infections and can get a good look at how things are. If all looks good on this one, she wont have another one until her 3 month post transplant exam towards the end of July. Once we meet with the surgeon and decide whether or not the nissen fundo needs to be redone and the MRI/hearing test/bronchoscpy are done we will start working on getting outta here!!
   The "goal" is to be out of the hospital and in our apartment here in Houston by the end of the month. All depending on how the above tests go. We are hopeful, but we know how better than to get our hopes up too much. This road has not been easy, and we expect to keep hitting bumps along the way.  After living in a hospital for 6 months, the idea of normal is a little overwhelming, and exciting at the same time! We are so thankful she is making progress and we are sooo happy to see her acting more and more like her old self. She has been smiling some, and has started sitting on her own (assisted by the boppy pillow).