Thursday, September 30, 2010 12:00 PM, CDT

The day again started with Elizabeth throwing up, which she did twice for some unknown reason. Nutrition stopped by and we discussed it possibly being her new formula, but the change has helped her tummy feel better without all the gas. They had decided to test her for C-diff which can affect her stomach, nothing major but may be part of the problem. They do not think thats what the issue is but want to rule it out. Nothing else has grown from her blood/urine/trach/viral cultures from the other day so we will know tomorrow what the plan is as far as stopping or continuing her anitibiotics. She did have another slight fever of 100.6 today, but it went down pretty fast without needing any tylenol or anything which makes me think there is just something bothering her belly plus the fact that she is teething! The pulmonologist came by and discussed that since Elizabeth has been able to breath on her own above what the ventilator is doing that they want to try an wean that part of the vent down, so that she is totally breathing on her own. The ventilator will just provide pressure and oxygen so she will be on CPAP through the ventilator. They are weaning the rate down by 2 starting at the setting of 20 every 8 hours to see how she does with it. Its just one less support the ventilator will have to provide for her at home. Shes down to 16 now, and doing well.  The case manager also came by and we discussed nursing care for when we get home. The plan for now is to have 24 hour private duty nursing in our home for 8 weeks and then we will reevaluate and decide if we want to continue with 24 hr care or if we want to have less. It is going to be hard to adjust to having a stranger in our home all the time.

Wednesday, September 29, 2010 10:00 PM, CDT

Elizabeth had another good day ( for the most part). I woke up this morning to her nurse and occupational therapy putting her in her seat we bought her and when I went over to look, she was smilling and laughing. Then she started crying and to our surpise threw up!! Which surprised us since when she got her g-tube(feeding tube) they also did a nissen fundoplication, which is supposed to make it so she cant reflux or vomit. So not sure what happened, but thankfully it didnt seem like she aspirated, her saturations dropped but came back up once she calmed down. So the rest of the day she spent being extremly playful, happy and smiling which was great to see her getting back to her normal demanor. When Elizabeth got her gtube last month we were scheduled for a followup this month to learn how to change her gtube out, since we will need to change it every 3 months and to know how to put it back in if she accidently pulls it out at home. SO guess what I got to do today- yes change the gtube, which isnt nearly as bad as changing the trach but still not fun. THEN the case manger comes by and guess what else I got to do today - yep I had to change the trach!! Let me mention here that Matt went home yesterday to  work for a few days and check on the house and stuff. So not only did I do these two things but I did them without him (If he had been here, Im not sure I woulda done it!) After the trach change Elizabeth got a little fussy and decided to throw up again, still not sure why or how that happened all over herself and her blankets/bed. So she got a bath and her bed is now decorated for Halloween :)  She has improved greatly over the past two days with being able to sit up without as much support, hopefully she will be back to the point she was before surgery soon.

Tuesday, September 28, 2010 11:00 PM, CDT

Today was definatley one of the better days we have had lately! They left the pressure support on the ventilator at the higher setting as recommend by pulmonology and she keep her saturations up all night/morning. Her new trach came today and it seems to be alot more comfortable for her. It doesnt pull as much on her neck and when we sit her up she doesnt cough as much. Since this trach is uncuffed she again as a leak around it, so that air can pass around the trach, which means, can hear her (kinda) !!! She sounds very squeaky and when shes asleep she sounds like she is snoring loudly ~ like daddy ;) . Its hard not being able to hear her babble, laugh, or cry, so we will take all the squeaks we can get!
Our meeting with the Dr's went well, we feel that  now have a plan in place, if all goes well with Elizabeth.  For now they will continue to try and wean her ventilator settings, but they also realize we cant stay in a hospital forever going up and down on vent settings, when really that can be done at home as well. We know we will have to have nursing care in our home, and if the only problem she is having is needing more/less pressure or O2 that is something that could be managed at home. They want her to be "better" from the infection that she has now, so she will finish her antibiotics. We are planning for another meeting on Monday to determine if she is doing well enough to transition her to a home ventilator, if that happens she will need to be on it for a few days to make sure she is stable on it and then we will have to do 72 hours of rooming in with her. Where we provide all of her care to ensure we are ready to go home. When she is released we will be transported back home by ambulance.  So although the idea of HOME has been put on the table we are trying hard not to get too exicted, things change daily around here with Elizabeth. The thought of going home makes me happy and beyond anxious, not knowing how getting back in the routine of being home, working and caring for Elizabeth is going to go. But we will manage.
Not sure if I ever explained the sleeping arrangements here or not, but one of us can stay in the room at night with Elizabeth. Which means the other has to get a sleep room - which requires you be on a list and they assign them daily at 9pm based on distance from home and severity of your childs condition. You have the room from 9pm-9am for sleep/showers. If you dont get a sleep room then you can either sleep on a chair in the family lounge or get a hotel room somewhere in Nashville. Luckily we have been able to get a room most nights, an the few we didnt we had family staying so we were able to go to a hotel with them. But 3 weeks ago we got put on the waiting list for a Ronald Mcdonald room, and have been calling them daily to ensure we were still on the list, today we also got on the list for a room with Hospital Hospitiality House (sorta like Roncald Mcdonald). And today we got the call about a Ronald Mcdonald room and we got offered a room through the Hospital Hospitality House. We took the room through Hospitality House for different reasons, but we are very thankful to not have to wait till 9pm daily to find out if got a sleep room.
  Hoping we are on the right track again :)

Monday, September 27, 2010 11:01 PM, CDT

Another frustrating day..... Lately our days start around 430/500 with the daily chest xrays where they come to the room with the machine and wake Elizabeth and me up to get the xray. Then she goes back to sleep for a few hours. And I wake up to her ventilator alarming because she has pulled it off, again and her nurse is no where around (3 days in a row!). And again her oxygen saturations were not very good she was ranging from 84-92, this went on with her alarming for about 20 mins until I got too upset to take it and had to yell into the hallway for someone to help me. Our nurses came in and suctioned Elizabeth and keep adjusting her oxygen and finally we were able to get her semi-chilled out, but her saturations were still fluctating. Then I felt her head and she was extremely hot. Yet again, she had a fever -101 this time, and her heart rate was in the 180s to 190s. And made it up to the 200s again but thankfully they did not wait 4 hours to do something this time, they immediately got cultures (blood, urine, and trach). Gave tylenol, and started antibiotics to fight any possible infections.  The preliminary results again are MRSA, so we will wait for the 48 hour time frame for the cultures to finish growing, and see how bad it is, or if any other infections show up. They also told us her chest xray looked a little worse today as well. So they are starting hyptertonic HIT therapy, where they use the AMPU bag to give her 20 breaths after putting a saline treatment into her lungs to help loosen any secrtions and open up any collaped aveloi.  We AGAIN voiced the frustations we have been discussing for the past 3 days with the nurses and the pulmonary team when they came by. Pulmonary felt that increasing her pressure (peep) on the vent would benefit her and changed it (her saturation went up), well PICU Drs didnt like that and decreased it back down (her saturations dropped again), and when Pulmonary came back to check on us he went and "discussed" the change and lets just say her pressure got turned back up :) So after us complaining and voicing our concerns for the past 3 days NUMEROUS times to anyone who would listen. The next change will be that they will put a new trach in tomorrow that has a large opening, which will make her airway a little bigger in hopes that she will be able to get the oxgyen from the vent into her lungs without needing as much pressure and will not have to work so hard to breath. They also FINALLY changed her formula, we have been concerned for over 2 months that Elizabeth is very gassy after her feedings and felt that she needed to be switched. We kept getting different reasons for not changing her, but I think they got tired of hearing us so they changed it today. Hopefully it will help her be a little more comfortable. We were having to vent her feeding tube numerous times a day just to help her not be miserable. We are alos scheduled to have a conference with all Doctors from pulmonology, PICU, ENT and cardiology, as well as our nurse case manager. We are hoping we can get everyone on the same page with a plan in place. The Doctors in PICU and pulmonary rotate weekly, so weekly we have a "new person" who does things different, and it becomes a cycle of no one really knowing that the PLAN needs to be. Matt and I understand that it may take time for the get better, but we also know that she has not improved since we got here. It seems as though she is worse off than when we were at home, and if all they plan to do is keep doing what they are doing now turning her O2 up and down all day, we could have done that at home ourselves!!

  OK OK, I know enough complaints for the day! Elizabeth did seem more playful today once her fever broke and her peep was up and she was breathing easier.                                      ~guess that pulmonologist might just know what he's talking about making those changes ;)

Friday, September 24, 2010 4:16 PM, CDT

Looks like the steroid burst is helping! Her oxygen saturations have been 94 and above ever since she got the steroids, and they have been able to wean her oxygen down to 50%. She got a large steroid dose 9ML via IV yesterday (in comparison her daily oral dose is 2ML). She will get that same large dose again today and tomorrow. Then they plan for now is to continue to wean her oral dose and start doing monthly 3 day treatments, but we will have to wait and see how she does before we determine how and if that will work. We dont know if we would have to be inpatient or outpatient, and how the pulse doses would be adminstered.  The downfall of long term steroids are they can hinder growth which is what she needs most for her lungs to develop and grow. Plus there are many other negative side effects that could happen, so we really need to get her off of them. But apparently she just isnt ready yet.
The echo they did on her heart yesterday shows that her pulmonary hypertension is the same no worse so that was good. She is still on the Sildenafil (viagra) for it and hopefully it will remain stable on that medication. She had a scope of her airway through the trach today, to check again for proper length and placement. They had to give her Ketamin before the procedure to help keep her calm (needless to say she is now sleeping). They feel that the trach length is good and plan to order her another custom trach the same length but a bit wider to avoid having to have cuffed trach -the one with the ballon. And also the new trach they want to get has an extension so that it is not be right up under her neck and maybe make it a litte more comfortable for her. They have to order it so it wont be here till Tuesday, which means I get a break of having to stress about changing it until then. :)
Other than that not much going on today, just dealing with the fun of living in a hospital, and sharing community laundry facilities and of course the 2 showers in the hallway that are often full.

Thursday, September 23, 2010 4:28 PM, CDT

Frustrated would be a good word to describe how we are feeling today. Elizabeth had issues keeping her oxygen saturation up alot yeterday, last night and today. Her oxygen requirement on the ventilator went from 35/40% to now requiring 70-100% and the other pressures/settings have also had to be increased and she is still having problems keeping her saturations up, dropping into the 80s. Last night she was sound asleep and started alarming her saturation had dropped down to 80, it took a little bit to get her back to acceptable levels. Then the nurse and I tried adjusting the ventilator so it wouldnt be rubbing on her face and a piece of the ventilator tubing broke. The nurse had to give Elizabeth breaths with the bag until the respitory therapist could get it fixed.  Needless to say it was a very stressful night! This morning I expressed my frustrations/concerns and annoyance with anyone who would listen (nurse/pulmonary dr/respirtory therpist/and picu dr). Apparently they were starting to have the same concerns and had already started discussing what to do next. We went down the list of things that have changed in the past few days that could have caused her oxygen requirement to go up. And it was decided that possibly the steriod wean could be causing her to have the issues (if you have been following Elizabeth from before, we have tried to wean her steroids twice and had these same issues with increased oxygen requrirements). So she will start a 3 day round of pulse (large dose) steroids, and then we will have to decide what would be best to continue her steroid treatment (oral daily doses like she has been on or monthly pulse doses via IV). They also wanted to do another Echo on her heart to see if her pulmnonary hypertension has worsened. At this point we are at loss. It seems that no matter what we decide she just doesnt seem to "get better'' we know and understand that it is going to take time to see if her lungs will grow, but at the same time she struggles daily just to breath. We know that the Doctors are just human and have to base their decisions on previous cases and trial/error, with her having such a rare case of a rare lung disease.  But I get so upset becaue they suggest things and we go with it only to end up feeling like we have set her back more than we have helped her!

  Hopefully we can get her back on track but again only time will tell, so as we "celebrate" (SARCASM INTENTED) our 30 day stay at Vanderbilt this trip (for a grand total 53 days out of 64 , not including the 7 day stay at Erlanger in between). We realize that our stay doesnt have an end in sight right now. But Elizabeth needs to be here so we will stay till she is ready.

Wednesday, September 22, 2010 10:22 PM, CDT

E is officially off the Versed! She no long has her PICC line hooked up to anything (but it has to stay in just in case she needs IV meds/fluids for some reason). She is getting her ativan/methadone via her gtube now. She did seem to be having some withdrawl symptoms today so they adjusted her doses and hopefully we will see some improvement with her mood and agitation level with that. She has been fighting sleep ALOT, which I would too after being through so much but she just gets more irritable and makes her heart rate go up and her oxygen saturation go down so we are trying to keep her calm and relaxed as much as possible. Thankfully the case manager came by and asked if we wanted a break from trach change for the day, of course I was happy about that! I assume she will try to talk me into doing it tomorrow, but we will see how that goes. Elizabeth is still struggling with the ventilator, they had to increase her pressure and oxgen that she recieves from it, so far she seems to really like the ventilator so we may end up having to have one at home. We are realllly hoping she will be able to come off of it maybe once all the medications are outta her system and she is able to adjust.

Wednesday, September 22, 2010 1:36 AM, CDT

I was looking on the internet for resources for trach care and other trach related issues and ran across the following story, and wanted to share it with everyone.  It kinda explains how we feel alot of the time realizing that life with Elizabeth is a bit different and not what we expected when we found out we were having a baby, but different doesnt mean bad or worse, its just different and you have to learn to adapt.


Welcome To Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…. \When you’re going to have a baby, it's like planning a fabulous vacation trip — to Italy. You buy a bunch of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around ... and you begin to notice that Holland has windmills ... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away ... because the loss of that dream is a very very significant loss.
But ... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, September 21, 2010 8:47 PM, CDT

As much as I hate to write this I want to share the trach change experience with everyone.
 First let me explain something about Elizabeth's trach, when she first had her surgery they put a trach in that is cuffed. It has a small deflated ballon around the bottom of it and they put air or water in to inflate it and it adds pressure to hold the airway open. Elizabeth has had a cuffed trach since her surgery. Well today they decided they wanted to try and see how she does with an uncuffed trach, one without the ballon of air on it, since hers hasnt been inflated in a few days, and its better for her not to have something extra hanging from her neck.
So Matt and I do well with cleaning around the trach and suctioning/bagging her. And then its time to change the trach, and as much as I DO NOT want to do it, I know that I need to learn so I say I will do it. We get everything together and Matt takes the old trach out, I try putting the new non-cuffed one in and she starts crying, we can actaullly hear her crying (if you remember we havent been able to hear her since surgery). I have a little bit of a hard time getting the trach in and felt that it wasnt in all the way, and as I am telling the case manger this, Elizabeth is still crying. She starts turning really really red, and then starts turning really, really blue. She keeps getting bluer, and I watch her oxygen satruation dropping and dropping on the monitor (the monitor showed her oxygen saturation dropped from high 90s down to 10, granted she was moving alot so the sensor may not have been picking up, but for it to show that low, she had dropped alot). I froze for a second and then got the heck  out of the way so the case manager could "fix her'. The case manager and nurse tried to bag Elizabeth but were unable to get any air into her.They tried adjusting the trach and after another failed attempt at bagging her, They then took the uncuffed trach out and put the old cuffed one back in and were finally able to get the bag to work to give her oxygen. After a few seconds her saturations began rising and she didnt look blue anymore! Once she was breathing well and her saturations were back up, I was finally able to calm down a little.  Needless to say all of that happened alot faster than it sounds. And of course I felt awful because I felt it was my fault. But the case manager explained that even though it doesnt seem like a big difference that Elizabeth may need the small amount of pressure that the cuffed trach gives, and the uncuffed trach was the problem, not me. Granted she may be trying to make me feel better cause she knows Its gonna be a few days before I will try again, but I hope she was right. Today was NOT a good learning experience!
  Other than the above issues for the day, Elizabeth continues to do well, she is now off of dilaudid. They plan to take her off the versed tonight or in the morning and the hopefully work on turning the ventilator settings down more. And I keep forgetting to mention they have started weaning her steriods down, very very slowly but hopefully she will be off of those within a few months, but that is something we can continue to wean/monitor at home.

Monday, September 20, 2010 8:21 PM, CDT

They started giving Elizabeth Ativan and Methadone to ensure she doesnt have withdrawls from the stronger meds, hopefully she will be totally off of Versed and Dilaudid within 48 hours. The doctor came by today and talked to us about ordering a home ventilator for her, just in case she ends up needing it. He said it could take a week or so to get one here and he wants to have it ready if she needs it, since she will have to be switched from the hospital vent to home vent and observed on it to make sure she does ok. We are still hopeful that she wont even need a ventilator for home, but we will see. She had physical therapy today, and we worked on trying to sit up again, she is still a bit "drugged" and very weak, so she cant hold herself up yet but seems to be getting better each time.
 Elizabeth's new thing is sticking her finger up her nose :) Since she had a cannula on it for so long, its like a new toy to her. She likes for her nose to be touched and keeps putting her finger in it. She still still into chewing everything, including parts of the ventilator tubing, and her IV line.
    We did trach care and suctioning/bagging again, which I am ok with. But we also did another trach change, which Matt ended up doing and I helped. I still had a hard time looking at it, but maybe next time.

Saturday, September 18, 2010 6:44 PM, CDT

Elizabeth is still on Versed, Dilaudid and Phenabarbitol. They have weaned alot of the meds down to smaller doses but thats still alot for a little baby to be on! Once she is able to come off of these meds she will be switched to ativan and methadone to keep her from having withdrawls from the stronger drugs, for those of you where were around for her last major hospital stay in March they had to do the same thing then. No major news today other than continuing to decrease the amount of meds. She has been awake a lot more and playing, trying to chew on everything. As I have mentioned before we are not able to hear her cry or make noises due to the trach. Last night she started squeaking, there is a leak (an opening around the trach in her airway that allows air to pass through), so she can make a little bit of noise. She has "cried" more today than she has in the past, which again we cant hear her but we can definately see her crying and see the tears, its heartbreaking everytime. We held her up for a little while and got to help with suctioning and cleaning her trach today. Thankfully the trach change only happens twice a week, I still feel horrible about that. Her Dr came in today and said he was surprised I had problems with it, since I am a police officer and see things alot worse, Its totally different seeing something like that with my own child than it is dealing with injuries and stuff at work!
 Hoping for an uneventful weekend and continued improvement, looking forward to getting out of ICU soon! There are more limitations and rules regarding sleeping arrangements, food, visitors and having to use showers in a different area of the hospital so it makes things a little more diffucult for "living" here.

Friday, September 17, 2010 7:10 PM, CDT

The doctors have continued to wean down on sedation today, and Elizabeth is still doing well, they decided to extend her antibiotic treatment from 7 to 10 days so that will be over on Monday. I dont think I mentioned before that they started doing HyperInflation Therapy (HIT) on her lungs, which is where they use the bag to inflate her lungs in order to open up all the air sacs an break up any of the "gunk" that could be in her lungs. They have doing this every 8 hours the past few days and it does seem to help her breathing. So we will continue on the wean of sedation and ventilator settings until HOPEFULLY she can come off of all of it. She had some occupational therapy today and got to try and sit up for a little bit, of course she is still getting medications that cause her to a bit weak and drowsy so it was more like she was being held up, but at least she got a break from laying down for a while. They also treated some of the granualtion tissue around the trach site with silver nitrate, Elizabeth didnt seem to mind it, so that was a good thing!

Matt and I were able to clean the trach site today as well as  the suctioning/bagging and then changed out the new trach with supervision/support from the case manager. We were both very nervous and wanted to be sure we were doing everything correctly. The suctioning/bagging and cleaning were all pretty easy and we did without too much of a problem. When it came time to change the trach we both got pretty emotional, actually seeing such a large hole (to us it looks huge) in her throat was devastating and broken our hearts to know we "did" that to her. We were able to make it through changing it and got everything done correctly. We both know that it is what needed to be done, but at the same time its hard knowing that she has had to go through so much and seeing this made it even harder to take.  We will continue to do the suctioning, care, and trach changes from now on as long as Elizabeth's condition remains stable, so that we are ready to do it on our own at home.

Thursday, September 16, 2010 9:48 PM, CDT

Elizabeth woke me up around 7am today by pulling her ventilaotor off of her trach, thats a scary alarm to wake up too!! But she was pretty content and happy to see me, so it was worth the wake up.  They started weaning back on the sedation today so she was awake more and did well with it, so hopefully they will continue to wean her off of it but it will be a slow process. The nurse gave her bath last night but she still kinda smelled sweaty to us, so Aunt Carie and my Mom helped me wipe her off with some smell good baby soap, so she no longer stinks ;)  Occupational Therapy visited her again today and worked on some range of motion with her legs/arms and did some baby massage, just so she doesnt associate all touch as being negative from being poked and stuck so much.  Other than that it was a pretty uneventful day, Matt and I will be learning to change trach out tomorrow, which I am extemely nervous about doing, but we have to learn and be able to care for her at home. It seems easy and I have heard from other families its really not a big deal, but it kinda scares me and I hate to think it hurts her since the trach site is still so new and probably sore and I now have to be the one to do it.  

Wednesday, September 15, 2010 9:16 PM, CDT

Still being sedated, and doing ok. She was awake some today and got a little excited about playing with her favorite toy, her giraffe that she LOVES to chew on, a little excited meaning we had to take it away from her. She popped her ventilator off about 5 times this morning just by moving around and fell asleep holding onto the tube once (it was sad and cute all at the same time). The "plan" for now is to just wait and see, let her body continue to recover and adjust to having the trach and try to lower the sedation as she can tolerate it and keep her oxygen saturation up and continue to try and wean off the ventilator, but if she gets to a point where she is awake and stable we can always go home on a ventilator. Our Mom's stayed with Elizabeth for a while today so that Matt and I could get out again today, we got Elizabeth her first Halloween costume shes going to be a lady bug :)  Hopefully we will be HOME by then, if not she will get to wear it at the hospital. Forgot to add they weighed Elizabeth today and she's up to 13.6 lbs (which is great considering she was stuck at 11 for a while before her Gtube surgery last month). She is still behind on growth but hopefully once she gets settled from all this trach stuff she will be able to grow and get stronger.

Tuesday, September 14, 2010 6:35 PM, CDT

They stopped paralyzing Elizabeth today. She is still getting meds to keep her calm/sedated so shes still getting Versed and they changed her Fentanyl to Dilaudid. Even with the medicines, she was been awake alot today and smiled at us a few times. She was kicking her legs alot, which she loves to do :)  She did get one extra dose of the meds earlier in the day when she seemed to get too worked up and her saturations dropped. Since she is moving around so much being awake it is "loosening" up alot of gunk and she has had to be suctioned alot more, but as soon as they do that her saturations go back up, which is good. She is still on the ventilator but they have weaned her oxygen requirement and pressure levels down on it some.
The Dr has mentioned that she may have pneuomia and that could be causing some of her issues, but they are not sure and since testing for it would involve putting a scope into her lungs they dont want to put her through that right now, but he thinks some of her chest xrays show the "possibility" of it. But the antibiotics she is on for the MRSA will also clear up pneuomia so he feels comfortable just letting the anitbiotics run their course and go from there.
      When your in PICU or the hospital in general you always see the other families whose loved ones are in here and alot of times it puts things into perspective. Even though Elizabeth is having a hard time right now she still has a chance to get better. My mom was in the waiting area today and a family member of another girl started talking to her. The 11 yo girl, Elizabeth, fell out of a tree last night and was air lifted here, with head trauma. They do not think things are looking good for her. Please pray for this little girl and her family!

Tuesday, September 14, 2010 6:35 PM, CDT

They stopped paralyzing Elizabeth today. She is still getting meds to keep her calm/sedated so shes still getting Versed and they changed her Fentanyl to Dilaudid. Even with the medicines, she was been awake alot today and smiled at us a few times. She was kicking her legs alot, which she loves to do :)  She did get one extra dose of the meds earlier in the day when she seemed to get too worked up and her saturations dropped. Since she is moving around so much being awake it is "loosening" up alot of gunk and she has had to be suctioned alot more, but as soon as they do that her saturations go back up, which is good. She is still on the ventilator but they have weaned her oxygen requirement and pressure levels down on it some.
The Dr has mentioned that she may have pneuomia and that could be causing some of her issues, but they are not sure and since testing for it would involve putting a scope into her lungs they dont want to put her through that right now, but he thinks some of her chest xrays show the "possibility" of it. But the antibiotics she is on for the MRSA will also clear up pneuomia so he feels comfortable just letting the anitbiotics run their course and go from there.
      When your in PICU or the hospital in general you always see the other families whose loved ones are in here and alot of times it puts things into perspective. Even though Elizabeth is having a hard time right now she still has a chance to get better. My mom was in the waiting area today and a family member of another girl started talking to her. The 11 yo girl, Elizabeth, fell out of a tree last night and was air lifted here, with head trauma. They do not think things are looking good for her. Please pray for this little girl and her family!

Tuesday, September 14, 2010 12:03 AM, CDT

I wanted to share a part of my favorite book The Velveteen Rabbit. I have always loved this book and had a velveteen rabbit that I kept with meall the time, even when I was deployed on the ship when I was in the Navy, up until I moved in with Matt :)
I read this book to Elizabeth when I was pregnant, after one of our more stressful visits to the high risk doctor. And I read it to her again the night before her trach surgery.  It reminds me when things get rough that nothing else matters except how much we love Elizabeth and that she is able to love us back!


"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?" "Real isn't how you are made," said the Skin Horse.
 "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but Really loves you, then you become Real." "Does it hurt?" asked the Rabbit. "Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

Monday, September 13, 2010 6:31 PM, CDT

Elizabeth got her new customized trach today (basically its just longer than the other one). She did well when they changed it out. They are planning to stop paralyzing her sometime tonight and see how she does with that and if it goes well then stop sedating her tomorrow. Still on antibiotics to treat the MRSA and all her other wonderful meds.
 Thats about it for today, other than the grandparents/great grandmas taking the Trach Care Class today.

Monday, September 13, 2010 1:31 AM, CDT

Nothing new to update on Elizabeth's medical status, just wanted to remind everyone how much we appreciate the support, generoisty and concern everyone has given! Being in the hosptial all the time and seeing other parents who dont seem to have much support or help reminds me how lucky we are to have such great people in our lifes. And how grateful we are that Elizabeth will grow up surrounded by support and love from so many wonderful people!

Sunday, September 12, 2010 10:05 AM, CDT

Well as we suspected the fever from the other night was most likely caused by an infection, the culture they took from Elizabeth's trach was positive for MRSA (which she also tested positive for when she spiked a fever after her Gtube surgery around the site). She has already been on anitibiotics but they will now start another stronger one to help. And now they Doctors/Nurses have to be on contact precautions where they wear gloves/gowns anytime they touch her. We are still waiting on the results of her blood cultures to see if that showed anything.
She had one "spell" last night where her oxgen saturations dropped and they had to increase her ventilator settings. This morning the nurse who had her yesterday came in and said she was concerned that the trach looked like it was coming out. ENT came by and of course it was out a little, so they had to push it back in and then put a scope down it to check placement and an xray to be sure it was in the correct place. So we are hoping that the placement of the trach was what caused her requirements on the vent to go up last night and they will be able to wean her more today.
Tomorrow they will change her trach out and put her custom longer trach in which they also hope will help with getting the ventilator settings down as well, the trach she has now seems to be a little shorter than what she needs.
Lets hope for an uneventful day and that she continues to rest and be stable. But hopeful that tomorrow will be a little better with the new trach and get her on the road to being able to wake up and come off of the ventilator.

Friday, September 10, 2010 2:29 PM, CDT

Elizabeth is doing a little better, still sedated/paralyzed but her heart rate and oxygen saturation has been good. They were able to get the PICC line in her arm so we wont have to worry with anymore IV sticks or blood draws, all of that can now be done via the PICC line.  They did another Echo on her heart today and we are waiting to talk to Cardiology about the results. A custom trach has been ordered for her since they think part of her discomfort may be caused by the length of her tube, her new one will be here Monday in time for her first trach change.  We have no idea how long they will keep her sedated/paralyzed it all depends on her breathing/heart rate. But at this point we are fine with them giving her as long as she needs to rest and heal from the surgery.
Me, Matt and Aunt Carie participated in Trach Care class today. We learned how to clean the trach site and how to suction the "gunk" from the trach and airway. We practiced on a baby doll and will eventually start doing this with Elizabeth. We have a few more classes on different topics to help make sure we are comfortable and capable of caring for her when she is able to go home. We are grateful that so many of our family members are also going to take these classes so that we will have some help with caring for Elizabeth.

Friday, September 10, 2010 9:32 AM, CDT

After my last post Elizabeths temperature continued to rise to 104. They gave tylenol hoping it would get it down and also gave more morphine and versed which she still stayed awake through and continued to be upset. Her heart rate was between 215 and 223 for over 3 hours, which is not good but even worse for a child with pulmonary hypertension. The did cultures on blood, urine, and her trach site to check for infections but those will take a few days to see if they grow anything. They did start her on antibiotics just in case. After hours of her struggling and not being able to get her heart rate down and still fighting through the morphine/versed they decided to start a drip of versed and fentanyl. She continued to keep her heart rate elevate around 200-209 and her oxygen saturations began to drop, she kept going into the 80's and started looking a little blue. They had to suction her trach alot to get some of the "gunk" that is being created from all the irritation of having something in her thorat since she cant cough it up. At one point they couldnt get the suction down her throat and had to bag her and work for a little while to get the gunk out. So they finally decided it was in her best interst to paralyze her and keep her sedated in hopes that it would relax/calm her and she would be able to lower her heart rate and the ventilator would be able to do more of the work for her.  Of course all of this happened between the hours of 11pm - 4am this morning. Needless to say Matt and I were beyond scared and a little irritated that we kept telling them something was wrong and it seemed to take her declining more and more for someone to realize we knew what we were talking about!!!! Her temp did finally come down and after being paralyzed/sedate her heart rate did finally come down to an acceptable level (again after 4 hours at or over 200!).   She is doing ok this morning, but has had some issues with her oxygen saturations dropping.
At this point they think she had another pulmonary hypertension crisis, we are thinking she just got too upset for too long and it overworked her heart (thats OUR thinking). I am upset and mad that I felt the trach would help her and now it seems to have set her back but maybe Im wrong and this is just a bump in the road.
    The plan today is to keep her paralyzed/sedated on the vent and consult with Cardiology to see if they want to do anything more or just give her time to rest and see how things go.  They plan to start a pick line so that she wont have to keep getting stuck for IVs and blood draws since she continually has problems with her veins being accessible . (After over a month in the hospital and NUMEROUS IV's and sticks who woulda thought all your veins would be bad??)

PLEASE keep her in your thoughts and prayers, last night was up there on the list of scariest experiences we have had with her and we hope they can get this figured out and help her!

Thursday, September 9, 2010 10:45 PM, CDT

Elizabeth had a roller coaster day! She was weaned off the ventilator to CPAP earlir in the morning and then put back on the ventilator because she was working so hard to breath and couldnt keep her oxygen saturation level up. They continued giving morphine and tylenol for pain and started giving benadryl since the morphine makes her nose itch so much. She was still a bit fussy and couldnt seem to calm down so they also gave her some versad to help her relax and rest. They also stuck a scope down the trach to measure and ensure that it is the correct length and in the right place. She had a few xrays on her lungs to make sure they were not filling with fluid or collapsing. I am in the sleep room tonight and Matt is staying with Elizabeth in PICU. He just told me she has a slight fever 100.4, so not sure what the cause of that is, but they will continue to watch it. :(
I am trying not to get discouraged but we were hoping this would help her so much and it hasnt seemed to do much for her yet, other than make things worse! Hopefully after a little more recovery time we will be able to see the difference.

Wednesday, September 8, 2010 9:28 PM, CDT

We got to see Elizabeth!! She was "crying" a little when we first got back to her room,  of course we can't hear her now because of the trach but she seemed very upset. She was kicking her legs around alot, which she likes to do. They gave her some morphine and she calmed down pretty quick :) She is still on the ventilator but they plan to try and wean her off of it tonight and just attach oxygen to her trach. We are very hopeful that she can do it! They are not keeping her paralyzed so she can wake up when she wants but they are just keeping her comfortable with the pain meds, we hope that will make it easier for her to adjust being able to wake up and move around some but still be pain free. If she starts pulling at her tubes they may have to sedate/paralyze her but for now she is doing well.

  Today was a very difficult day for us, knowing that we would have to put her through this and hoping she wouldnt look at us and wonder why we did this.  We hate that we may not be able to hear her cry or speak for a while, but knowing that this will hopefully help her does make it a little easier to deal with.  I will keep you all updated with her progress from the vent!!
 
Thanks again for your support! Today was another hurdle and she did great! What a fighter!

Wednesday, September 8, 2010 7:09 PM, CDT

The day started off crappy by yet another IV going bad and Elizabeth being stuck twice before one was finally placed in her scalp. She has surgery around 5 pm today to get her trach. The surgery went well and we are now waiting to see her. She has been moved to PICU where she will be for at least 5 days before going to a regular room. We really hope this helps and will put her on the right track. I am nervous about seeing her for the first time but hoping it wont be as bad as I am thinking.

Tuesday, September 7, 2010 4:35 PM, CDT

After another conference today with 3 of the pulmonologist and the Ear, Nose, Throat (ENT) doctor, Floor doctor and our nurses we have decided it will be in Elizabeth's best interest to get a tracheostomy. This has been the hardest decision for us to make just for the fear of the unknown with a trach and complications that can arise from the care of it. As well as how it may affect Elizabeth. I dont think anyone ever "wants" to have to make this decison but we also understand that this not the worst possible thing that could be happening so we need to be grateful for that. If we go home now with her oxygen requirement being as high as is it is without a way to ensure her airway is staying open there is a possiblity the next time we have to rush her to the hospital she may not make it. Thats a chance we are not willing to take. With the trach at least we will know that we tried everything we could to help her.

Some people have asked how the trach will help, since we now know that Elizabeth has tracheomalcia (her floppy airway) which is caused by a vessel putting pressure on her airway, a trach will be able to hold her airway open, ensuring the oxygen her lungs need will get to them it will also relieve some of the pressures that the work of keeping her airway open is causing. So the hope is that with the trach her pulmonary hypertension may get a little bit better as well. We are hopeful that they can just hook oxygen up to the trach and she will be able to get it that way, but there is a possiblity she may need a ventilator to support her lungs and provide the oxygen for her. We will not know for sure until they get the trach in place.
     So we know that the hope is her lung disease will get better as her lungs grow and they also think her trachomalcia will get better as she grows, so we are hoping that after a few years or less she will not need the trach or any form of help to breath, but it will take time and there are still unknown possiblities with Elizabeth, as she has already shown us you just never know with her!

We do not have a set date for the trach surgery, we are waiting for ENT to come by and let us know what day/time they have available to do the surgery. As far as we have been told she will have the surgery and will be kept sdeated/paralayzed for 3-4 days to give the trach site time to heal a little and keep her from pulling it out. She will be in ICU during this time. After that she can be moved to a regualr room and we will start learning how to care for her and the trach. We have to learn alot and show them that we are able to care for her before she will be discharged, they have told us that the stay after ICU is usually 10 days. So IF all goes well we will be here at least 2 -21/2 weeks after surgery. We will have to have some type of home health nursing care once we get home to help with Elizabeth since to ensure that her trach doesnt get plugged up or pulled out. From all that I have heard/read there is alot to caring for a trach but if it will help keep Elizabeth healthy we are more than willing to do it.

We TRULY appreciate everyone's generosity, encouragement and support.

Saturday, September 4, 2010 9:02 PM, CDT

Elizabeth's CT scan showed that there is a vessel putting pressure on her airway which can be causing some of the floppiness. There are a few options:
 1~ A surgery called Aortopexy, (which we were told is too risky for Elizabeth, and we totally agree with that) so really thats not an option at all.
2~ Tracheostomy
3~ We give it time and see if Elizabeth outgrows it which the Drs are pretty sure she will eventually, the downfall of this is that she will be at risk of having these spells where her oxygen requirement goes way up and her saturations drop which could cause more issues with her pulmonary hyperetension.

So as you can see we are struggling to make the best and most informed choice for Elizabeth all of the options have risks. We have learned alot about Tracheostomy over the past few days, and I visited with a mother and son yesterday who has had a trach/ventilator since he was 2.  The ENT Dr is supposed to come by sometime this weekend and explain things more regarding the vessels and how much they are compressing the airway. And we will meet again with the Doctors on Tuesday to try and decide what the best choice for Elizabeth will be.
  She has not been feeling well the past 2 days, her stomach has been bothering her ALOT! Which has caused her heart rate and oxygen requirement to be higher, our concerns have been addressed and we are hoping she will be feeling better soon.

Friday, September 3, 2010 12:28 PM, CDT

Elizabeth will be heading for a CT scan w/contrast on her throat/chest today. We are hopeful to gain some information about her airway and what may be causing the floppiness. Once we have the test we should have a better idea of what we need to do next.
Please keep her in your thoughts and prayers during this procedure and hope that we again make the best choice for her.