Wednesday, July 27, 2011

Nothing Ever Goes as Planned

     So as always I should have known better than to get my hopes up about being discharged so quickly. The Drs have decided to keep Elizabeth inpatient a little longer. As I have said numerous times, her oxygen saturation drops while she sleeps, which is why we have been putting oxygen on her during the night and nap time. But some of the Drs and nurses felt concerned and have I feel, pushed the issue. The drops are not very frequent and do not last for long periods of time.  So the transplant team is trying to get a sleep study scheduled for hopefully tonight, or tomorrow night to see if its apnea or if they can tell what is going on during her sleep time.  Transplant feels pretty certain, as do Matt and I, that its all related to her shallow breathing during sleep which can be caused by transplant itself. When they took out her lungs and replaced them with donor lungs there are nerves that get cut or damaged and sometimes it just takes time for those to heal and for her get back to being able to take deep breaths again.  But of course, some of the Drs feel the trach may need to be put back in or she may need more support during sleep than the oxygen, like CPAP or something similar. So we will hope for the study to happen tonight but it could possibly be tomorrow night before we are able to get it done. I had REALLY hoped for a short stay this time. Elizabeth is doing really well without the trach during the day and her awake time. So I am hoping that this issue is something that can be resolved without the trach.
      The upside to being inpatient now is that we were able to get some of the tests needed for her 3 month post transplant evaluation out of the way. She had imaging done today of her diaphragms to make sure they were working properly and were not part of the issue with her saturation drops, the halter monitor of her heart was finished this morning, and she had an echo of her heart done as well as a few lab tests. So hopefully, we will have a scheduled date for her bronch before we get out of here this week.

Elizabeth has adjusted to being back in the hospital, I think she can tell its not home for sure. She was pretty fussy the first day. She has had lots of visitors :) Alot of her PICU nurses that took care of her before have stopped by to see her. I love being able to share her progress with them. They cared for her when she was so sick and have seen her through so much of this journey. Its good for  them to be able to her making progress and know that all those days/nights of dealing with Matt and I were well worth it  ;)

Tuesday, July 26, 2011

Trach Free (three hours and counting)

Elizabeth was admitted to the hospital yesterday for her decannulation (taking the trach out). They observed her overnight and then this morning around 1000 the Dr just took it out, and placed a gauze over the opening and taped it down. She is doing really well so far, she has been needing a little bit of oxygen when she sleeps and has still needed it today without the trach so we are just using a nasal cannula for that. So during her awake times, its pretty amazing to see her breathing on her own, with nothing assisting her. This is the first time in her life that we have seen her without some form of support. So thankful for her angel lungs and her strength to  keep fighting!!

We will be in the hospital overnight for observation again, IF she gets starts having trouble the trach could be put back in. Since we are here, they are doing another halter monitor for her heart, and she will get her 18 month immunizations before we leave the hospital.  But we are hoping she continues to do well and will  discharged back to our apartment here in Houston tomorrow. Then we will get her 3 month post transplant evaluation scheduled hopefully for sometime next week.

Thank You all for your continued prayers and support, Elizabeth truly is a miracle and we are so lucky to witness her progress every day.

Friday, July 22, 2011

Celebrating and Remebering - 3 months with Angel Lungs

Today marks 3 months since Elizabeth's lung transplant. Really there are no words to explain all the emotions that go along with the transplant process:  from the rollercoaster of sickness before, the wait and fear during, the joy and happiness when you get the "call", the fear and anxiety during recovery, and of course the constant fear of the future. Sometimes when I think about her future, all the scary and sad thoughts come into my mind and I worry about all the complications, infection, and rejection that can and most often does occur with transplant kids. But then I remind myself that I can't live everyday in fear, I need to make each day count because we never know when it could be her last. Elizabeth was sick for a very long time, she spent all but 3 months of her life in a hospital with a good portion of that being heavily sedated or paralyzed. And now she is living, smiling, laughing and playing. The past year and half has been filled with some of the most difficult and amazing moments of my life, and most days I still feel like its all a dream.
I am so thankful everyday for Elizabeth's amazing strength and determination. We are really starting to see alot her personality, and she is VERY stubborn and lets you know when she likes and dislikes something. And I think that is a big part of what has gotten her to this point.  She has fought so hard and is deserving of the best possible life we can give her. Everyday I think about our donor family and the precious angel that lives on in every breath Elizabeth takes. Here's too many, many more lung-anniversaries :)
April 22, 2011 - Transplant Day
July 22, 2011 - 3 Months Post Transplant

Thursday, July 21, 2011

Living and Loving Life

No news is good news right?! Seems my posts are getting farther apart as we continue to adjust and enjoy our new "normal". Lots of things have happened over the past week. Many clinic appointments and therapy sessions. Filled with lots of playtime, hugs, love and smiles and a tea party :)

As for Elizabeth's breathing status. Her lungs continue to do amazingly. She is still totally off of the ventilator. Her trach is capped (meaning she is doing all of the work of breathing) pretty much 24 hours a day. Since we are keeping her trach capped all the time now, she has started needing oxygen during sleep. So during nap time and at night we have been putting a nasal cannula on her to give oxygen. She will be admitted to the hospital on Monday in hopes of decannulation (taking her trach out). We don't know how well she will do with this, if she is able to keep her oxygen saturation up and is not struggling to breath then we will be returning to our apt here in Houston - TRACH FREE. If she doesn't do well with it, they will just put her trach back in and we will continue to work with her and try it again later when she has more strength. The biggest issue is that her airway is so used to have the trach in it that alot of the muscles are a little weak/floppy and can collapse. So we wont know till we try, but at this point shes doing well enough to try it.

As for feeding issues. She still gets all of her nutrition through the feeding tube.The throwing up has gotten alot better, she only does it once or twice a day now compared to the 10-15 times a day the first week we were out of the hospital. She is doing alot better with taking baby food by mouth. She gags and makes herself throw up with any sweet fruits/veggies, one of the meds she takes by mouth is sweet and she now associates everything sweet with that. So we started giving her meat flavored foods, she doesnt eat alot but anything is better than nothing and we are slowly making progress. We have also tried giving her juices, different formulas, and whole milk in her sippy cup. She spits all of it out, but LOVES water. She has occupational therapy twice a week, and we work on alot of her feeding issues and her fine motor skills.

As far as physical therapy goes, Elizabeth has that once-twice a week depending on scheduling. She still doesn't roll over or push herself up. Part of her developmental delays are related to being so sick for so long and just having a major surgery 3 months ago, but we also have to remind ourselves that she does have some issues with her brain. So its sometimes hard to tell what the cause of the delay is and just how hard we should push her. There is a good chance she will always be delayed in some aspects, but we will work with her as much as possible and make sure she has the best therapies and equipment we can provide for her. Yesterday at PT we discussed ordering a stander for her. Its a contraption that we strap her into and it helps her work on weight bearing through her feet/legs and will help strengthen all those muscles. There is a company in Nashville that we will use to get the stander from, so we are starting the paperwork now and by time we get back to TN we should be able to just pick it up during one of our trips to Vanderbilt. Elizabeth continues to progess with babbling and making noises, but no words yet. We had speech therapy once last week and are still trying to get on the schedule. Therapy here is a little difficult due to lack of therapist, so we are hoping once we get home, we can get a better schedule for PT, OT, and ST together and once its more consistent the progress will come faster. Of course Matt and I work with her alot, but we dont know all the trick and tips that will help her the most.

So our "normal" life lately has consisted of visits from my mom and Matts grandma. A few dinners out in restaurants, a walk outside near our apartment, a few trips to Target, and a trip to the mall. And yesterday she was part of a photo shoot for LifeGift, the organ procurement center here in Houston. Elizabeth's picutre and story will be used to help promote organ donation awareness.  Elizabeth does really well with getting out and about, I think I stress out alot just worrying about all the equipment we have to take with us. Since she still has the trach we have to take a suction machine, oxygen tank, a bag with extra trach supplies/ambu bag, all her medications, her pulse ox machine, her feeding pump bag, and regular baby stuff. Granted packing and getting out is ALOT easier now than when she was on the ventilator, but it takes a bit to get her "ready" and out the door. I think it will take a little getting used too if we are able to get rid of the trach, to not have all these medical supplies with us all the time. But its ALL worth it!! I am thankful for everyday that I get to share with her and I remind myself how lucky I am that she fought so hard to stay here with us.

Wednesday, July 13, 2011


Things have continued to be busy around here. Elizabeth had a few days of some serious vomiting ALL day long. It has gotten some better with adjustments to her feeding schedule, but we are still trying to figure out if its reflux related or something else with her digestive system. Thankfully her doctors feel comfortable letting us work though this as an outpatient and just replacing her lost fluid with water and pedialyte via her gtube and sippy cup.

As for progress with her breathing and "extra equipment" she is doing AMAZING. She has been totally off of the ventilator for the past two nights. She either has a cap or the passy muir valve on her trach 24 hours a day. So we will be meeting soon with her ENT Dr to discuss when we can hopefully get rid of the trach all together. And of course getting rid of the trach (hopefully by the end of the month) also means we will no longer need in home nursing care :) which is pretty exciting to me! The nurses we have are really good, but I just want us to be as normal as possible, which means not having extra people or equipment in our home.  Her 3 month post transplant bronch will most likely be at the beginning of August due to the Dr's schedule and once that is done, if all looks good she will have her broviac removed and we can start planning our trip HOME!

Tuesday, July 5, 2011

Busy Day

Elizabeth has had continued issues the past few days with throwing up and we were starting to get concerned that she may be dehydrated again. We called the transplant doctors last night and they just wanted us to draw some blood this morning to check her electrolytes and also the levels of her transplant meds.  And in case I haven't mentioned, I am the one who is now responsible for drawing her blood and taking it in to the hospital. She has the broviac, central line, so I just have to draw it from the line. Its a little nerve racking but I am getting a little more comfortable with it. Its just scary knowing that an infection in that line would be very bad for her, and the care of it is now my responsibility. So once I draw the blood I have to drive to the hospital and wait (today it was an hour) to drop it off.  Thankfully her numbers looked good, we just had to slightly increase one of her medication levels.
Waiting for PT/OT

  She had physical therapy and occupational therapy today. We spent about 4 hours at the hospital between waiting for appointments and her actual therapy sessions. She did really well and worked very hard today. She will be having PT and OT about 2-3 times a week and we will be setting up speech therapy as well. Our next appointment is on Thursday in the Transplant Clinic, which means another blood draw on Thursday morning.

Almost bedtime!

Monday, July 4, 2011

"Home" or at least our Texas Home

After being inpatient since November in three different hospitals, Elizabeth was able to leave the hospital for the first time with her angel lungs on Friday.

Of course nothing every goes easily for Elizabeth, on Friday morning she started throwing up which almost got her discharge plans changed, but thankfully they didn't feel it was anything major and we were able to leave around 5 pm. And as soon as we got to the apartment more medical equipment arrived. And then we had to deal with getting the home nursing paperwork completed. Our apartment is filled with medical supplies and equipment, but we are still hopefully to get rid of alot of this stuff before we head home to Tennessee. We were approved for 24 hour nursing care but have chosen to only have care at night.  Since Elizabeth still has a trach and is on the ventilator (without oxygen) at night someone needs to stay awake to hear monitors and be able to react quickly if she needs help. And we don't want to chance not hearing her alarms. Matt and I still do all of her care, we just basically ask the nurse sit and wake us up if her alarms sound at night ~ pretty easy job :) 

We are still getting settled and trying to get in a routine with all of her meds/feedings/and blood draws. I have gotten most of the supplies and equipment organized and we seem to have a pretty good system in place for now. Will just take time getting used to this new normal for us. And I know once we get home to TN it will be a whole new way of life especially when Matt and I both return to work, but we will figure it out.

  We did venture out to Target on Saturday and Elizabeth did really well. She got fussy once but seemed pretty content and slept alot of the trip.We would really like to take her for walks or to the park, but its just WAY to hot here in Houston!!

The sign posted on Elizabeth's Hospital Room door

Outside our Apt

The car ride home!