The days here seem to drag by SO slowly. We are just waiting for a point where everything "clicks" and Elizabeth is making enough progress to be discharged. The weekend started out good, with her being more awake and playful and ended with her having withdrawls and needing extra doses of methadone/ativan. They were weaning those drugs pretty quick in hopes of waking her up more and getting her to work her muscles and be able to get rid of CO2 on the trach collar. Apparently she just wasnt ready to give up the drugs :) She was awake for almost 24 hours straight Saturday, and super agitated on top of gagging/vomiting/diarehha. -FUN TIMES- But I think they have her in a good place now, she seems more calm and isnt having all those issues. Saturday day was actually the best day we have had so far. She was very awake, playful, smiling, and had two 2 hour trach collar trials. We were able to take her for a wagon ride in the hall by ourselves. She spent the entire time chewing on the mask we put over her mouth. But as the day went on, you could tell she was starting to withdraw. Due to her high level of aggitation she did not do any trach collar trials on Sunday, Monday or today. But we hope to resume them tomorrow. Tomorrow she is scheduled for an upper GI tomorrow to check the nissen fundoplication she has, which is supposed to be preventing her from throwing up/refluxing. But she has been able to throw up almost ever since she had the surgery for it back in August. So once we have this test done tomorrow, we will know more about if the nissen is still in tact or if she would need surgery to repair it, hopefully not! Over the weekend she started coughing alot more and needing to be suctioned more often. So they did cultures just to check her for viruses. So far nothing has came back. We are hoping she isnt getting sick on top of the withdrawals.
Other than the above we have just been hanging out. Trying to play with her and work with her as much as possible when she is awake. She has a long way to go to catch up developmentally, so we spend LOTS of time sitting her up. Her head control is great, but she still needs help sitting but is getting better. Sometimes it makes me sad to think she is 17 months old and cant sit up on her own, or roll over, crawl, walk or talk. But she will get there, in her own time! Another goal for this week is to get a passy muir valve for her to try. Basically its a one way valve that goes on her trach. She can breath in through it but has to use her upper airway to breath out instead of the air coming out of her trach. The passy-muir is usaully used as a talking valve, becasue it will allow us to hear her again :) But in Elizabeth's case, it has a second purpose. The hope is that it will provide just enough pressure for her that she will be able to wean faster from the pressure she needs from the ventilator. We are hoping to be able to try it out tomorrow. And part of the process for getting rid of the trach is for her to wear the passy muir and get her used to using her airways for breathing. So this will be a great step forward if she can tolerate it.
Thank you for your continued support and prayers. We are so thankful for each day. Even though there are many bumps in the road we are hopeful for the future!
Tuesday, May 31, 2011
Friday, May 27, 2011
Saturday, May 28, 2011 12:13 AM
Elizabeth has been doing really well the past few days. Due to her higher CO2 levels they cut back to only doing trach collar trials for 2 hours a day, then she does pressure support for 10 hours and goes back on full ventilator support at night. We also discussed working towards getting her on pressure support at night as well. Which means she will be doing ALL the work of breathing and the ventilator will only be providing pressure into her lungs and giving her oxygen. *This is the same mode she was on at home back in October, but with higher pressure settings then. She is tolerating all of this very well, and her numbers look great. She has been on the home ventilator since my last post, and is doing awesome on it. Its hard to say what percentage of oxygen she is getting now since it doesn't have a setting to tell us. But she is down to 1 liter (and could really go less). For anyone who remembers when she went home in October on the home vent she was 2.5 to 3 liters of oxygen. So that is a pretty big deal! And she is improving and getting stronger everyday. We are still hopeful that we can get rid of the oxygen, ventilator and trach, of course, in Elizabeth Time! :)
She has been off of the pentabard since Wed. And they have decreased her methadone and ativan alot. The Drs are hoping that with her being more awake, it will help her take deeper breaths and strengthen her muscles more. That will help ensure she is expelling the CO2 and we can continue to move forward with more time on the trach collar and work harder to get rid of the ventilator. She has been more awake, and we see the 'old" Elizabeth coming back. We catch her smiling and chewing on everything! She is doing lots of work with physical therapy. And we have started giving her taste trials with baby food during OT. Her feedings have went really well. She is up to her goal feedings via Gtube 3 times during the day, and on a continuous feeding through her Jtube at night.
We met with a home nursing company on Tuesday. So when she is ready to be discharged from here to the apartment, we already have our nursing care and home health equipment supplier lined up. We plan to only use nursing care at night while here in Houston. And if we end up going back home to TN with the ventilator we will again have 24 hour nursing care at home so that we both can go back to work. I am really hoping and praying we can get rid of the ventilator before we leave Houston. There are a few classes Matt and I have to take before she gets discharged. Since we already do all the trach care/changes we dont have to do that again. We will be retaking a CPR class, but thats always good to have. And unfortunately we have to take a class on giving injections for her blood thinner medication. She will be on it as long as she has the broviac. And we will have to take a class on caring for the broviac.
This past week has been pretty great. Elizabeth has made lots of progress and we are so excited to see our little girl acting more like herself. We have felt comforatble enough to leave her to go out to dinner more often. And were lucky this week we went to dinner with 2 of our favorite PICU nurses on Monday night. And on Thursday night we were able to attend an awards dinner hosted by LifeGift. LifeGift is the organ procurement organization for Texas. They assisted in locating and retriving Elizabeth's lungs, and they also maintain the Texas Donor Registry. We are so lucky to have been a part of this event. It was amazing to see so many organ recieipents, and families of organ donors in one room. I can not even explain how it felt to be surrounded by people "who get it". People who have been where we are waiting for their/or their loved ones gift of life. Or being on the opposite and having to make that choice during their time of loss, to give the gift of life. Matt and I sat with a woman whom I have been in contact with only on facebook that I "met" through LifeGift, Shannon Lenox. Shannon's 21 year old son died last year in a car accident, and she donated his organs. Sitting at the table with us and Shannon, was the man who received her son's heart. How AMAZING is that!! The event at LifeGift was filled with stories like this, and it just touched my heart to be a part of it. I want to remind all of you again, to please consider being an organ donor if you are not already!! You NEVER know when your life will be touched by it!
She has been off of the pentabard since Wed. And they have decreased her methadone and ativan alot. The Drs are hoping that with her being more awake, it will help her take deeper breaths and strengthen her muscles more. That will help ensure she is expelling the CO2 and we can continue to move forward with more time on the trach collar and work harder to get rid of the ventilator. She has been more awake, and we see the 'old" Elizabeth coming back. We catch her smiling and chewing on everything! She is doing lots of work with physical therapy. And we have started giving her taste trials with baby food during OT. Her feedings have went really well. She is up to her goal feedings via Gtube 3 times during the day, and on a continuous feeding through her Jtube at night.
We met with a home nursing company on Tuesday. So when she is ready to be discharged from here to the apartment, we already have our nursing care and home health equipment supplier lined up. We plan to only use nursing care at night while here in Houston. And if we end up going back home to TN with the ventilator we will again have 24 hour nursing care at home so that we both can go back to work. I am really hoping and praying we can get rid of the ventilator before we leave Houston. There are a few classes Matt and I have to take before she gets discharged. Since we already do all the trach care/changes we dont have to do that again. We will be retaking a CPR class, but thats always good to have. And unfortunately we have to take a class on giving injections for her blood thinner medication. She will be on it as long as she has the broviac. And we will have to take a class on caring for the broviac.
This past week has been pretty great. Elizabeth has made lots of progress and we are so excited to see our little girl acting more like herself. We have felt comforatble enough to leave her to go out to dinner more often. And were lucky this week we went to dinner with 2 of our favorite PICU nurses on Monday night. And on Thursday night we were able to attend an awards dinner hosted by LifeGift. LifeGift is the organ procurement organization for Texas. They assisted in locating and retriving Elizabeth's lungs, and they also maintain the Texas Donor Registry. We are so lucky to have been a part of this event. It was amazing to see so many organ recieipents, and families of organ donors in one room. I can not even explain how it felt to be surrounded by people "who get it". People who have been where we are waiting for their/or their loved ones gift of life. Or being on the opposite and having to make that choice during their time of loss, to give the gift of life. Matt and I sat with a woman whom I have been in contact with only on facebook that I "met" through LifeGift, Shannon Lenox. Shannon's 21 year old son died last year in a car accident, and she donated his organs. Sitting at the table with us and Shannon, was the man who received her son's heart. How AMAZING is that!! The event at LifeGift was filled with stories like this, and it just touched my heart to be a part of it. I want to remind all of you again, to please consider being an organ donor if you are not already!! You NEVER know when your life will be touched by it!
Tuesday, May 24, 2011
Tuesday, May 24, 2011 8:31 AM
Elizabeth did well over the weekend with the trach collar, extending her times on it. But her CO2 levels have been creeping up. So we aren't sure if its related to her doing too much work, and needing more support from the ventilator, or if there is something maybe going on with the lungs. Her CO2 levels have been within the normal range since transplant, so they are leaning more towards her just needing more time on the vent. Which is not what we want to hear. I cant help but think we are getting in that same rut as before, "just give her time, she will get better". I just hope that they are right. Needless to say we are disappointed that she was making so much progress, and we maybe we pushed her too hard. She is tolerating her feeding thru her gtube instead of the jtube, which means her stomach is getting used to having food in it. So that will hopefully help as we try to transition her to eating normally, which will take a long time to do.
She had her first "outing" yesterday. As part of PT we put her in a chair in a red wagon and rolled her around the hallway. She was on the trach collar, which made life SO much easier than being on the vent. She slept the whole time though. But we can start taking her out more often for these trips, if she tolerates it. Hoping the next time she will be more awake.
Hoping for progress, and good news the rest of this week. I know we need to be prepared for the continued highs and lows. But its so hard to deal with sometimes. Our reason for doing this was so she could be happy, healthy, and "normal". We are so scared that she is going to get stuck on this ventilator, and that is NOT the life we want for her. Please pray that she will have the strength and her new lungs will work well enough to not need it!
She had her first "outing" yesterday. As part of PT we put her in a chair in a red wagon and rolled her around the hallway. She was on the trach collar, which made life SO much easier than being on the vent. She slept the whole time though. But we can start taking her out more often for these trips, if she tolerates it. Hoping the next time she will be more awake.
Hoping for progress, and good news the rest of this week. I know we need to be prepared for the continued highs and lows. But its so hard to deal with sometimes. Our reason for doing this was so she could be happy, healthy, and "normal". We are so scared that she is going to get stuck on this ventilator, and that is NOT the life we want for her. Please pray that she will have the strength and her new lungs will work well enough to not need it!
Saturday, May 21, 2011
Saturday, May 21, 2011 9:16 PM
A month ago tonight (at about 1030ish) we got THE CALL. I think I will always vividly remember exactly what I was doing when Matt called me, and I knew before I answered it had to be lungs. The past month has been filled with many emotions of the continued roller coaster of highs and lows. But with a whole new perspective than before.
This whole experience is still very surreal. Sometimes I feel like we are living a nightmare, but at the same time its a dream come true. (If that makes any sense). The past 17 months have been so hard, we have felt every possible emotion. Its so hard to even really explain the emotions. But I want SO badly to express them. I remember reading another transplant mom's blog. I think she described it best, as looking in the rearview mirror. I am so thankful we are moving forward, but I look in the rearview as a reminder of just how far we've come. The excitement of being pregnant and the expectation of a healthy baby, the worry and concern when we found out at my 20wk ultrasound that there may be problems then the overwhelming fear and dread that we had during her stay in NICU. We tried to keep faith that she would just grow out of it, but in our hearts I think we both knew she wasn't getting better. We spent so many months upset and sad that we weren't "normal". And the frustration of being in and out of the hospital so much. I look back with some regret, I was so worried about her wearing oxygen and what people thought, that I didn't have her pictures professionally made until she was 6 months old! I remember every hard decision we have made, from an open lung biopsy at 3 months, the feeding tube, trach/vent, and then her transplant. And my heart hurts so much for all the pain she has had to endure, but at the same time I am grateful for that hurt. The hurt I feel I will be a daily reminder to me to cherish EVERY minute I have with her. I would give anything to change the pain and suffering she has endured, but at the same time I am also grateful to have been the one here with her. To witness such an amazing child, fight so hard to live. Its something that I cant even really begin to explain.
As I look back I replay all these memories: Seeing Elizabeth for the first time after being born, not even getting to hold her before she was taken to NICU. How sad and confused I felt when I finally saw her in NICU. The hope and crushing feeling in my heart every time she failed to wean from the oxygen. The day we took home for the 1st time at 1 month old, how scared and thankful I was. Rushing her to the ER after working midnight shift. Crying the whole way to the OR, knowing her biopsy was not going to go well. When the PICU Dr explained to me that Elizabeth had to be on total vent support and paralyzed for the first time. My heart broke. Learning about her lung disease diagnosis and actually having hope that she could get better. Elizabeth turning blue in her car seat in the hospital parking lot, and Matt running with her back into the ER. The day in November when she turned blue and went limp in PICU. That night the Drs telling me she may not make it through the night because we couldn't get her stable enough to fly to Vanderbilt. Watching her oxygen saturation fall into 60s and 40s and wondering just how much more she could take. Thanksgiving weekend when we were on constant watch for ECMO, every blood gas was a pivotal moment. I remember sitting the bathroom floor crying and begging God to give me more time with Elizabeth.The day before we got the call for Elizabeth's lungs, I went for a short run. While I was running I asked God to please give Elizabeth the strength she needed. And to give me strength to make it through whatever her future may hold. And I truly think he has done that. Every time I thought she couldn't take anymore, she has fought harder and harder! These are just a few of the memories that stick out in my mind most. But in all reality I could sit here and rewrite the past 17 months with dates, times, places. Each of these horrific things are etched forever in my memory. But so are the good things. That precious, precious smile she has! The way she smiles and look at Matt when he sings ABCs. Her amazing brown eyes and cute red hair. The unwavering fighting spirit she has. There are sooo many memories to be made with her, and I am thankful for the chance for her future. I am so amazed at her, and so blessed to be her mother. Matt and I have learned so much from her. Everyday we are grateful for her.
Transplant living is not easy by any means, Elizabeth will require multiple medications for the rest of her life. She will have more dr appts and physical therapy than most kids. And she WILL be in the hospital alot. But she will be alive, and living the best possible life we can provide for her!
This whole experience is still very surreal. Sometimes I feel like we are living a nightmare, but at the same time its a dream come true. (If that makes any sense). The past 17 months have been so hard, we have felt every possible emotion. Its so hard to even really explain the emotions. But I want SO badly to express them. I remember reading another transplant mom's blog. I think she described it best, as looking in the rearview mirror. I am so thankful we are moving forward, but I look in the rearview as a reminder of just how far we've come. The excitement of being pregnant and the expectation of a healthy baby, the worry and concern when we found out at my 20wk ultrasound that there may be problems then the overwhelming fear and dread that we had during her stay in NICU. We tried to keep faith that she would just grow out of it, but in our hearts I think we both knew she wasn't getting better. We spent so many months upset and sad that we weren't "normal". And the frustration of being in and out of the hospital so much. I look back with some regret, I was so worried about her wearing oxygen and what people thought, that I didn't have her pictures professionally made until she was 6 months old! I remember every hard decision we have made, from an open lung biopsy at 3 months, the feeding tube, trach/vent, and then her transplant. And my heart hurts so much for all the pain she has had to endure, but at the same time I am grateful for that hurt. The hurt I feel I will be a daily reminder to me to cherish EVERY minute I have with her. I would give anything to change the pain and suffering she has endured, but at the same time I am also grateful to have been the one here with her. To witness such an amazing child, fight so hard to live. Its something that I cant even really begin to explain.
As I look back I replay all these memories: Seeing Elizabeth for the first time after being born, not even getting to hold her before she was taken to NICU. How sad and confused I felt when I finally saw her in NICU. The hope and crushing feeling in my heart every time she failed to wean from the oxygen. The day we took home for the 1st time at 1 month old, how scared and thankful I was. Rushing her to the ER after working midnight shift. Crying the whole way to the OR, knowing her biopsy was not going to go well. When the PICU Dr explained to me that Elizabeth had to be on total vent support and paralyzed for the first time. My heart broke. Learning about her lung disease diagnosis and actually having hope that she could get better. Elizabeth turning blue in her car seat in the hospital parking lot, and Matt running with her back into the ER. The day in November when she turned blue and went limp in PICU. That night the Drs telling me she may not make it through the night because we couldn't get her stable enough to fly to Vanderbilt. Watching her oxygen saturation fall into 60s and 40s and wondering just how much more she could take. Thanksgiving weekend when we were on constant watch for ECMO, every blood gas was a pivotal moment. I remember sitting the bathroom floor crying and begging God to give me more time with Elizabeth.The day before we got the call for Elizabeth's lungs, I went for a short run. While I was running I asked God to please give Elizabeth the strength she needed. And to give me strength to make it through whatever her future may hold. And I truly think he has done that. Every time I thought she couldn't take anymore, she has fought harder and harder! These are just a few of the memories that stick out in my mind most. But in all reality I could sit here and rewrite the past 17 months with dates, times, places. Each of these horrific things are etched forever in my memory. But so are the good things. That precious, precious smile she has! The way she smiles and look at Matt when he sings ABCs. Her amazing brown eyes and cute red hair. The unwavering fighting spirit she has. There are sooo many memories to be made with her, and I am thankful for the chance for her future. I am so amazed at her, and so blessed to be her mother. Matt and I have learned so much from her. Everyday we are grateful for her.
Transplant living is not easy by any means, Elizabeth will require multiple medications for the rest of her life. She will have more dr appts and physical therapy than most kids. And she WILL be in the hospital alot. But she will be alive, and living the best possible life we can provide for her!
Thursday, May 19, 2011
Thursday, May 19, 2011 8:34 PM
Elizabeth's procedure to have the broviac placed went well. She has been resting pretty much all day from the anesthesia. Looks like her home vent will be delivered here tomorrow, so not sure when they will try to transition her to it. We plan to push her a little tomorrow as far as her trach collar trials. Matt and I are starting to think she can do ALOT more than what we have been making her do. With all her issues this week with regards to the IV and not having access, its been hard to push her when she has to get stuck a gazillion times, but now that has been taken care of. SO tomorrow and this weekend, WE are going to make sure she is doing as much work as she can. I hate to think we are keeping her on a vent when she really doesn't need it that much. She has new lungs, and needs to be using them ;)
Wednesday, May 18, 2011
Wednesday, May 18, 2011 11:15 AM
Part of our miserable day on Tuesday was that Elizabeth's PICC line had to be removed since it stopped working. Which meant she had no access for drawing blood or giving IV meds. She is REALLY hard to draw blood on and difficult to start IVs on as well. So she has spent the past 2 days getting stuck TOO many times to count, her poor feet/fingers are bruised from trying to draw blood. And shes been stuck about 6 times trying to get IVs that will stay. So it was decided that she needs to have some sort of access, better than an IV. They were originally going to have another PICC placed today, but after some discussion she will not go into the OR tomorrow to have a broviac placed. It is basically a line that is tunneled in her chest area that has a lower infection risk than the PICC, and is something we can leave the hospital with. That way when she comes in for clinic twice a week as an outpatient, they can draw her labs from it instead of trying to stick her multiple times to get blood. Originally we were going to be leaving the hospital with no lines at all, due to the risk of infection, but its just too hard on Elizabeth the stuck so many times. So we will just have to be extra cautious.
Another new thing we are working on is her feeding issues. Most of you know that she had a gtube placed in Sept. Which means she was being fed into her stomach. When we arrived here in Dec she was having problems tolerating feeding into her stomach, so she got a gjtube and began being fed through the jtube into her intestines.The problem here is that being feed into the intestines requires that she is hooked up to the feeding pump 24 hours a day, continuously being fed a small amount of formula. In an effort to get her ready to be "a little more normal" we want to see how well she can tolerate being fed larger amounts of formula fewer times during the day into her stomach. Yesterday she tolerated being fed into her stomach for 3 feedings. But today she started throwing up after her first feeding. We will continue to work on this to try and get her to a point where she is on the feeding pump as little as possible.
The last update is that her home medical equipment was ordered today. They medical supply company will be delivering a home ventilator here to the hospital. We will work on transitioning her from the hospital to the the home vent and see how she tolerates it. We are still working on getting her off of the ventilator, but it may take a while to do that. So obviously no discharge plans yet. And honestly we are ok with that, we want to get out of the hospital but in all reality it doesn't change when we go home home. I mean after 6 months inpatient, whats a few more weeks :)
Another new thing we are working on is her feeding issues. Most of you know that she had a gtube placed in Sept. Which means she was being fed into her stomach. When we arrived here in Dec she was having problems tolerating feeding into her stomach, so she got a gjtube and began being fed through the jtube into her intestines.The problem here is that being feed into the intestines requires that she is hooked up to the feeding pump 24 hours a day, continuously being fed a small amount of formula. In an effort to get her ready to be "a little more normal" we want to see how well she can tolerate being fed larger amounts of formula fewer times during the day into her stomach. Yesterday she tolerated being fed into her stomach for 3 feedings. But today she started throwing up after her first feeding. We will continue to work on this to try and get her to a point where she is on the feeding pump as little as possible.
The last update is that her home medical equipment was ordered today. They medical supply company will be delivering a home ventilator here to the hospital. We will work on transitioning her from the hospital to the the home vent and see how she tolerates it. We are still working on getting her off of the ventilator, but it may take a while to do that. So obviously no discharge plans yet. And honestly we are ok with that, we want to get out of the hospital but in all reality it doesn't change when we go home home. I mean after 6 months inpatient, whats a few more weeks :)
Monday, May 16, 2011
Monday, May 16, 2011 9:15 PM
I wont go into detail about how ridiculous this day has been, but know that Matt and I have almost lost it MULTIPLE times. But Elizabeth is doing well right now, so thats all that matters. Its so hard to deal with other people making decisions for your child, and having to be rude or forceful with your thoughts on it to get them to listen. But we've been doing it her whole life so far, and I foresee that being the plan for the future as well!!
She did really well today on the pressure support, she again did 10 hours on it, with a 2 hour trial on the trach collar. And she keep her oxygen saturation above 95 the whole time. It was pretty amazing to see, after her struggling so much last week. Hopefully this will continue, and we can start looking towards getting outta here soon.
I would like to ask for thoughts and prayers for a friend of a friend. When we were inpatient at Vanderbilt in July and November, I found a local salon in Nashville to get my hair colored/cut. I met an amazing stylist Chris Pegram who became a big fan of Elizabeth and has followed her story and supported us since July!! His best friend, Jeff was diagnosed with lung cancer the same day Elizabeth got her new lungs. Please keep all of them in your prayers! They have been an amazing support system for us, and now its time to repay the favor!
She did really well today on the pressure support, she again did 10 hours on it, with a 2 hour trial on the trach collar. And she keep her oxygen saturation above 95 the whole time. It was pretty amazing to see, after her struggling so much last week. Hopefully this will continue, and we can start looking towards getting outta here soon.
I would like to ask for thoughts and prayers for a friend of a friend. When we were inpatient at Vanderbilt in July and November, I found a local salon in Nashville to get my hair colored/cut. I met an amazing stylist Chris Pegram who became a big fan of Elizabeth and has followed her story and supported us since July!! His best friend, Jeff was diagnosed with lung cancer the same day Elizabeth got her new lungs. Please keep all of them in your prayers! They have been an amazing support system for us, and now its time to repay the favor!
Sunday, May 15, 2011
Sunday, May 15, 2011 11:50 AM
As with anything Elizabeth has shown us again, there will always be new issues to overcome. Last week with all of her breathing issues an echo was ordered to check her heart, and we were told that it appeared her heart was working too hard. Cardiology was consulted and requested that she wear a halter monitor for 24 hours to monitor her heart to check for problems. And of course there is. Elizabeth has an abnormal rythym which causes her heart to beat to fast, and could eventually cause her heart to tire out. So she has been started on a beta blocker medication. That basically slows her heart down so that it doesnt over work itself. She gets this medicine every 8 hours. The cardiologist told us that this is one of the most common arrhythmias and that it "shouldn't" affect anything. She will just have to take medicine and be followed by cardiology. She said most of the time if the problem is found before 1 year of age the kids outgrow it, but since we are finding it later that it may be something she will always have. But then we question if there was so much focus on her bad lungs and pulmonary hypertension, that this may have been missed earlier on and she may still be able to outgrow. After her 5th dose of the medicine which was yesterday, she was put on the halter monitor again for 24 hours to watch how the medicine has helped. So far it seems to be making a big difference, her heart rate has slowed down about 20 bpm and she seems a little more comfortable.
She has been much more stable as far as her breathing, and is back down to 35% oxygen and doing well on it. They have resumed pressure support trials again. She did 2 separate 4 hour trials yesterday. And today we are trying for an 8-10 hour trial, with a few 1 hour trials on the trach collar. Of course her PICC line again has stopped working, so she is having to get stuck for blood draws. So we are waiting to see what the plan is for that. She is off ALL IV medications, so really they dont need a line for meds, but a line will prevent her from getting stuck multiple times a day. She is still on the blood thinners for the clots she had before transplant, and we are hoping that she will be able to stop getting those injections once her line gets pulled. So there are pros and cons to all of this.
And of course, the focus of the coming week is to see how much progress Elizabeth can make and to start discussing our discharge plan. There is a high possibility that we will be leaving the hospital with a home vent/trach and require in home nursing care again....in a 1 bed room apartment (FUN TIMES!). And we would continue the process of getting her weaned from the vent/trach in an outpatient status. We still aren't sure how we feel about that. Part of us is ready to get out of here, and to get her away from the germy hospital. But then part of us doesn't want to leave until she is free of all of these things. We have dealt with the home vent/trach/nursing care before, and know we can do it, but we just want so much for this trip out to be normal. Needless to say the recovery process has not been as quick as we had hoped, but we are still hopeful that either way we can get rid of all of this equipment by time we go HOME HOME. The plan for this week is also to start transitioning Elizabeth's tube feeding so that she can do bolus feeds during the day and continuous feeds at night VS the continuous feeding she has required since Novemeber. By doing this she wont be hooked up to a feeding pump 24/7. Until we can try to get her to eat by mouth. We are very hopeful that this works, If we get rid of the trach/vent we dont want her tied down to a feeding pump all the time either.
She has been much more stable as far as her breathing, and is back down to 35% oxygen and doing well on it. They have resumed pressure support trials again. She did 2 separate 4 hour trials yesterday. And today we are trying for an 8-10 hour trial, with a few 1 hour trials on the trach collar. Of course her PICC line again has stopped working, so she is having to get stuck for blood draws. So we are waiting to see what the plan is for that. She is off ALL IV medications, so really they dont need a line for meds, but a line will prevent her from getting stuck multiple times a day. She is still on the blood thinners for the clots she had before transplant, and we are hoping that she will be able to stop getting those injections once her line gets pulled. So there are pros and cons to all of this.
And of course, the focus of the coming week is to see how much progress Elizabeth can make and to start discussing our discharge plan. There is a high possibility that we will be leaving the hospital with a home vent/trach and require in home nursing care again....in a 1 bed room apartment (FUN TIMES!). And we would continue the process of getting her weaned from the vent/trach in an outpatient status. We still aren't sure how we feel about that. Part of us is ready to get out of here, and to get her away from the germy hospital. But then part of us doesn't want to leave until she is free of all of these things. We have dealt with the home vent/trach/nursing care before, and know we can do it, but we just want so much for this trip out to be normal. Needless to say the recovery process has not been as quick as we had hoped, but we are still hopeful that either way we can get rid of all of this equipment by time we go HOME HOME. The plan for this week is also to start transitioning Elizabeth's tube feeding so that she can do bolus feeds during the day and continuous feeds at night VS the continuous feeding she has required since Novemeber. By doing this she wont be hooked up to a feeding pump 24/7. Until we can try to get her to eat by mouth. We are very hopeful that this works, If we get rid of the trach/vent we dont want her tied down to a feeding pump all the time either.
Tuesday, May 10, 2011
Tuesday, May 10, 2011 12:05 PM
Elizabeth is in recovery from the OR after her bronchosopy. The dr said her lungs look good and he doesn't see any issues. It will take a few days for the cultures to come back to see if any infection is growing. Like I said yesterday the Dr seems to think that she is just working to hard and needs a little more support and time to get used to doing so much work. We are in the waiting area now so hopefully we will get to see her soon.
Monday, May 9, 2011
Monday, May 9, 2011 7:46 PM
So Elizabeth was pretty comfortable today. They kept her on the extra support with the ventialtor so no pressure support/trach collar trials today. They decided to do an echo on her heart, just to check and make sure things are good there. And decided to give some extra diurectics to get more fluid off of her, she was starting to look a little puffy again. And her fluid levels have been a little positive over the past couple days. They scheduled her for a bronchospy tomorrow sometime. She will be taken to the OR to have it done and sedated for it. There is a chance they will do a biopsy with this one if they notice anything when they are looking at her lungs. The Dr seems pretty sure her lungs are ok, but that maybe she just needs to move slower with everything. He thinks she is taking too shallow of breaths and is not ventilating as well as she should be becasue of that. And it will just take some time to the strength she needs to do it. I can accept that and understand her needing more time and that maybe we moved to fast with trying to get her off all the sedation and ventilator. But I just want to be as sure as possible that there isnt something going on with her lungs as far as infection or rejection issues. They just did a bronch last week and didnt see anything, so hopefully this one will be unchanged from the last.
She has slept pretty much all day today, so that tells me she was pretty worn out. And hopefully having a break from the trials off the vent is giving her a chance to rest and recovery a little bit more.
She has slept pretty much all day today, so that tells me she was pretty worn out. And hopefully having a break from the trials off the vent is giving her a chance to rest and recovery a little bit more.
Monday, May 9, 2011 11:10 AM
Not really sure whats going on with Elizabeth but yesterday and today her oxygen saturations have been on the lower side. So they have increased her oxygen and increased the pressure support on the ventialtor a little bit. Her xray yesterday showed her lungs looked a little less inflated and they started her on a precussion treatment every 6 hours, that will help loosen up mucus and open up her lungs a little more. There is still a question about whats causing all of this. Could be the chest tubes being painful and affecting how she breaths, the sedation weans, her just getting used to doing so much work after being on such high support for so long. We arent really sure what the problem is but its scary and frustrating. We have been told her lungs still look/sound good, so just need to figure out whats going on.
Hoping its nothing major, and that this is just one of those small bumps in the road.
Hoping its nothing major, and that this is just one of those small bumps in the road.
Sunday, May 8, 2011
Sunday, May 8, 2011 9:22 AM
Elizabeth is still doing about the same as far as progress with the trach collar and pressure support trials. We are adjusting to life in PCU. Next week we will start having classes about all of the anti-rejection meds she is on, and learning about the doses, giving them, and what side effects to look out for. All of this in preperation for HOME. There is a question as to how much support we are willing to leave the hospital on. There is a chance it will take Elizabeth a little while to get strong enough to not need a ventilator or oxygen. So we could possibly be leaving here with a home vent/oxygen with a plan to continue to work on weaning her off of it while outpatient. But all of that is still up in the air and we will talk about it more this week. But for right now she still has the chest tubes in, so it will be a little while before we have to decide anything.
Since today is Mother's Day, I just wanted to share that 2 years ago today is when I found out I was pregnant with Elizabeth. Everyone always says having a child will change your life forever. Little did I know just how much my life would change. The past 2 years have been a true roller coaster of emotions being a mommy. I am just so thankful for Elizabeth and all that she has taught me. She is such a strong little girl and I only hope that she knows how much she means to me and how much I love her. I would give anything to change what all she has been through, but I am so thankful I was chosen to be her mommy.
I would like to ask that you please keep our donor mom in your thoughts and prayers today. I am sure that today will be a difficult day for her. I am thankful to her today and everyday for the precious gift her angel gave us.
Since today is Mother's Day, I just wanted to share that 2 years ago today is when I found out I was pregnant with Elizabeth. Everyone always says having a child will change your life forever. Little did I know just how much my life would change. The past 2 years have been a true roller coaster of emotions being a mommy. I am just so thankful for Elizabeth and all that she has taught me. She is such a strong little girl and I only hope that she knows how much she means to me and how much I love her. I would give anything to change what all she has been through, but I am so thankful I was chosen to be her mommy.
I would like to ask that you please keep our donor mom in your thoughts and prayers today. I am sure that today will be a difficult day for her. I am thankful to her today and everyday for the precious gift her angel gave us.
Thursday, May 5, 2011
Friday, May 6, 2011 12:34 AM
We did get moved to PCU today...not so exciting, getting used to new people up here. Hopefully it will get better.
Elizabeth did well again today on the pressure support trials and did two trials on the trach colllars once for 2 hours and once for 5 hours. So thats good news. Slowly but surely she will get there.
Elizabeth did well again today on the pressure support trials and did two trials on the trach colllars once for 2 hours and once for 5 hours. So thats good news. Slowly but surely she will get there.
Wednesday, May 4, 2011
Wednesday, May 4, 2011 9:51 PM
Elizabeth is still doing great on pressure support trails but can only tolerate the trach collar for about 2-3 hours a day before her oxgyen saturation starts to drop. She does 12 hours during the day with a mixture of pressure support/trach collar and then 12 hours at night back on the ventilator with a rate to help work for her so she gets some rest. She still has 2 chest tubes in, they are still draining quite a bit. So they hope once the tubes come out and she is more comfortable. And can take deeper breaths without the pressure of the tubes bothering her, she will be able to tolerate more time on the trach collar.
Her fentanyl drip was decreased down to 1 today. So tomorrow she will be OFF of this drug. Pretty impressive considering she has been on this since November. Her other sedation med, pentabarb is given through her feeding tube. They will start decreasing it and hopefully she will be off of it within a week or so. She will stay on the methadone and ativan through her feeding tube for a while. Since she has been on the stronger narcotics for so long they will help ensure she doesnt have withdrawals and her body adjusts to not having those drugs.
Her feedings were increased again today to 23cc per hour. This is the highest amount she has been able to get too since we arrived her in December. So definatley making progress in that department. Again, the hope is to get her to eating normally, but we know that will take a long time. So we will be using a feeding pump for a while at home. But she has had this since September so its nothing new for us as far as the care and use of it.
She had another bronchospy today to check her new lungs. The Dr said that everything looks good and he is very pleased with how things are going. He told us it will take time for her to come off the vent and be able to get rid of the trach. We are still working on Elizabeth time, and when she is ready she will let us know. I think I am just ready for her to get rid of all of this stuff!! I know her new lungs are ready, its just taking her a little while to get used to having lungs that work so well.
So, with all the progress and the fact that as of tomorrow she will only be on one thing IV, and thats just fluids. We will be moving (if all goes as planed) to PCU, the step down unit on the 7th floor. We are not super excited about it. We dont want to give up our nurses here in PICU. We have become really good friends with quite a few of them, and we are pretty sad to be leaving them. After living here for 5 months, they have become our support system here. They have seen and cared for Elizabeth at her worst and celebrated with us when she got her new lungs. We are so thankful to all of them for all they have done for her, and for us. Words will never be enough to thank them for all they have done for us. But we also know that PCU is a step closer to HOME, and we are ready to for it. Even though we would be fine with staying in PICU till discharge :)
So hopefully tomorrow will continue to be a good day of progess, and if we are lucky she can get rid of the chest tubes.
Her fentanyl drip was decreased down to 1 today. So tomorrow she will be OFF of this drug. Pretty impressive considering she has been on this since November. Her other sedation med, pentabarb is given through her feeding tube. They will start decreasing it and hopefully she will be off of it within a week or so. She will stay on the methadone and ativan through her feeding tube for a while. Since she has been on the stronger narcotics for so long they will help ensure she doesnt have withdrawals and her body adjusts to not having those drugs.
Her feedings were increased again today to 23cc per hour. This is the highest amount she has been able to get too since we arrived her in December. So definatley making progress in that department. Again, the hope is to get her to eating normally, but we know that will take a long time. So we will be using a feeding pump for a while at home. But she has had this since September so its nothing new for us as far as the care and use of it.
She had another bronchospy today to check her new lungs. The Dr said that everything looks good and he is very pleased with how things are going. He told us it will take time for her to come off the vent and be able to get rid of the trach. We are still working on Elizabeth time, and when she is ready she will let us know. I think I am just ready for her to get rid of all of this stuff!! I know her new lungs are ready, its just taking her a little while to get used to having lungs that work so well.
So, with all the progress and the fact that as of tomorrow she will only be on one thing IV, and thats just fluids. We will be moving (if all goes as planed) to PCU, the step down unit on the 7th floor. We are not super excited about it. We dont want to give up our nurses here in PICU. We have become really good friends with quite a few of them, and we are pretty sad to be leaving them. After living here for 5 months, they have become our support system here. They have seen and cared for Elizabeth at her worst and celebrated with us when she got her new lungs. We are so thankful to all of them for all they have done for her, and for us. Words will never be enough to thank them for all they have done for us. But we also know that PCU is a step closer to HOME, and we are ready to for it. Even though we would be fine with staying in PICU till discharge :)
So hopefully tomorrow will continue to be a good day of progess, and if we are lucky she can get rid of the chest tubes.
Sunday, May 1, 2011
Monday, May 2, 2011 12:13 AM
Elizabeth started the day with a trial on pressure support and then did 3 hours on trach collar (humified oxygen thorugh trach) with NO ventilator support! She did ok for the first two hours, but was working pretty hard so they put her back on the ventilator to let her rest. The hope is that each day she get stronger and be able to breath on her own longer.
Due to all the fluid that was taken off of her, she is now a little dehydrated. So they are adjusting some of her fluids to try and get her back on track without giving her too much extra fluid. The chest tubes were not removed today, she was still draining too much fluid. So hopefully tomorrow. Her feedings were increased today and her sedation was decreased. So still making progress.
Due to all the fluid that was taken off of her, she is now a little dehydrated. So they are adjusting some of her fluids to try and get her back on track without giving her too much extra fluid. The chest tubes were not removed today, she was still draining too much fluid. So hopefully tomorrow. Her feedings were increased today and her sedation was decreased. So still making progress.
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