Wednesday, October 27, 2010 10:36 PM, CDT

Elizabeth is doing so well at home! She is sitting up on her own alot more without the help of her boppy pillow. She starting to reach and pick things up to play with. She is so smart and watches everything and everyone.  Tennessee Early Intervention will be out tomorrow to get her PT and OT at home set up so we should have that scheduled soon, she will be doing that at least weekly if not more often. She has an appointment in Nashville in Nov, Dec, and Jan! We had hoped to get all of them grouped together but it just wasnt possible so we will be making a trip a month up there, hoping the weather doesnt get back this winter or we will be making alternate arrangements! The home nursing continues to be an issue, we didnt have a nurse again on Sunday, that makes 3 times within 2 weeks that they either just didnt show or the company didnt have someone scheduled. Its hard for me to decide when to go back to work when we never know if we have reliable help to care for her. We are hoping to get things settled with that soon, but it seems to be a daily issue talking to someone about all of it.
 She is growing so much and is so smart! Her sleep schedule is a little crazy she stays awake till 1am and then sleeps until 1030-11am, which will work well for me when I do go back to work, but Matt may have a hard time dealing with it :) 
We are excited to celebrate her 1st halloween this weekend, I will post some pictures of her in her costume.

Wednesday, October 20, 2010 3:54 PM, CDT

Have been meaning to update this, but things have been a bit crazy around here! Elizabeth is adjusting to being home pretty well. She seems so happy and has been doing well with keeping her oxygen levels up and her heart rate lower. The home nursing is taking some time to adjust too, having strangers in your home all the time is hard to dea with but we will hopefully get a few that will be our primary ones and get used to having them around. Elizabeth has been to her peditircian and her pulmonlogist here at home and both say she is doing well. No changes have been made on her vent/o2 settings. She is still weaning down on her steorids. She got a flu shot this week, and actually slept through it. She will be getting a vaccination for RSV within the next couple weeks. We again have had some issues with our medical supply company but we working on resolving that. Matt will be returning to work tomorrow (if all goes well) and I am still trying to figure out when I plan to go back. I hate thinking about leaving her but Matt and I work opposite schedules so one of us will always be with her and now that we have nursing care we will always have someone to help us out too. I miss work and my coworkers, and I think going back with actually help keep me sane :)

Wednesday, October 13, 2010 3:01 AM, EDT

Just wanted to update quickly and let everyone know we made it home!!!! I am exhausted and still have stuff to do around the house. We accumalated alot of stuff living in the hospital for 2 months, on top of the large amounts of medical supplies that we now have to have to provide care. I will update more once things calm down later today. 

Thanks for all the love, support, prayers, and encouragement!

Sunday, October 10, 2010 10:15 PM, CDT

Just an update on our rooming in. We continued to have problems getting the catheter down her trach to suction and decided to go ahead and do a trach change to make sure it wasnt plugged. There was alot of gunk stuck to the inside of her trach. So looks like we made the right choice in changing it! Thank Goodness we decided to now instead of it getting totally plugged up later in the night. Elizabeth did great with the change and seems to be breathing better now.

Sunday, October 10, 2010 4:26 PM, CDT

Just a little update.. things with Elizabeth are still going well. Another little lack of communcation regarding how rooming in works, apparently we both ARE allowed to sleep at night, so they gave us a cot to go along with our chair today. To bad they gave it to us after 2 nights of one of us struggling to stay awake ;)
The Apnea monitor continues to go off in her sleep, but again shes still breathing so not a big deal. We voiced concern over ENT still not stopping by. We thought it was odd because our ENT DR is awesome and very unlike him not to come by when requested, and this request was put in on Friday. So after asking a few times yesterday and today the PICU Dr finally called him, he was under the impression that his decision had already been relayed to them. He does NOT want to give her a larger trach, he feels she is too little right now to upsize it again. And that the current size is working well for her and does not want to make changes, which we totally agree with (maybe thats why I think hes awesome!) He does think the swallow study is a good idea to see if we can start giving her baby food, and said he will look at it himself to be sure about the results. So we are scheduled for that sometime tomorrow. She will still get her formula feedings via gtube. Sometimes kids who are only tube fed and never eat by mouth will get an aversion to food and not want to use their mouths or eat real food later on. We want to avoid that if at all possible, so thats why we are pushing for a swallow study.
Our first time resolving an issue while rooming in happened this morning. Matt was sleeping and I was taking care of Elizabeth. Her oxygen saturation started dropping and I tried to suction her and could not get the catheter down her trach all the way. Which meant that there was some mucous AKA gunk blocking her airway. I tried a few times and could not get it all the way in to the trach to suction so I woke Matt just in case we had to do a trach change. We were able to loosen some of the gunk up by putting saline down the trach and were able to get the gunk out.  I think we did well for our first issue, we did not have to ask for help from anyone and we both remained calm. The most stressful part of her daily care is actually taking the guaze out from under her trach and replacing it! This kid has no neck and its so hard to get it put back in place. We both get stressed out even thinking about having to do it, and we know it stresses her out. So we some things we need to work on as far as finding an eaiser way to do some things but I think we are both feeling comfortable about going home and caring for her.

Saturday, October 9, 2010 3:31 PM, CDT

Our first night of rooming in went well, other than lack of sleep. One of us has to stay awake at all times so we sleep in shifts.  Her ventilator has alarmed about 5 times a night for the past 4 nights saying that she is having Apnea. We know that she isnt, since one of us has eyes on her, and can see that she is still breathing. Her heart rate and oxygen saturation levels remain the same. Last night she was even sucking on her pacifier when the apnea alarm went off.  So now the PICU staff is concerned that the leak of air around her trach may be too big and the alarm doesnt register some of her breaths. They are afraid that the alarm will "annoy" us at home and we may just ignore it. So they want to have ENT consult on it before we can go home.  I am really hoping that they make it by tonight or first thing tomorrow. But with our luck and the way things seems to be going, it will be Mon/Tues. The down side of this is if they change the trach size, we will have to stay in the hospital longer, it takes a few days to get her customized trach ordered and delievered, and then a few days for them to monitor her once they change the size. Plus a larger trach will decrease how much we can hear her. SO we are hoping that they leave well enough alone. We know that she is not experiencing apnea, and truly think the alarms sensitivity just need to be adjusted. Someone from our home health company will be here Mon morning to help adjust the settings and make sure the alarms are set correctly. So we may make it home Tues, but there is a good chance it may be later than that.  Elizabeth was weighed this morning and is now 13lbs 4oz, which doesnt seem like a whole lot, but no one has seemed too concerned about it yet. But it is on my "list" of concerns to discuss on Monday. She did throw up again this morning, but again was smiling as soon as it was over with. And again no one seems concerned about it other than us.
WARNING~~~~ MY RANT FOR THE DAY ;)
Sometimes I feel like we have been here "too long" and its almost like they think we are just taking up space here. Trust me I would MUCH rather be home taking care of her myself than sitting here feeling like I am doing most of the work anyway. This rooming in is almost a joke because we are doing basically the same thing we were doing before expect we both have to stay in this room all the time, and the nurse doesnt start her feedings or give meds we do, everything else is the same! We had a respirtory therapist last night try to turn her oxygen down. When I told her I turned it back up, she told me that she was trying to wean her OFF of it!!! When I explained that she has always required it and still needs it, she said "oh I didnt know all that". REALLY if you dont know then ask me or read the freakin chart lady! So needless to say I am about at my limit. I understand that doctors and nurses and staff are human and can make mistakes, and have lots of ppl to deal with that have different problems. That's why we stay as informed as we can about her condition and her care, but when I have questions or need help, I should not be made to feel as though I am wasting their time. Ok, Im done for the day! :)

Friday, October 8, 2010 8:42 PM, CDT

So we wont be home Monday! Looks like Tueday now if all goes well this weekend. Apparently there was some "miscommunication" among the Doctors/Nurses in PICU. Apparently someone (I am thinking a nosey nurse from last night who was listening to me talk to a friend on the phone) took our annoyance with our home health company training, as me saying that we were not properly trained on using the home ventilator. So the Doctors were saying that we needed more training, which we have already gotten. So Matt had to explain this to them today and we were not able to start our rooming in until noon, which means it wont end until noon on Monday. So we wont be able to be transported home until Tueday.
We had a class on CPR w/a trach today. And found out our home health nursing care was approved through our insurance so that is all set to start on Tueday. We are also hoping to have another swallow study done to see if Elizabeth can start eating baby food, was supposed to get done today but will most likely have to happen on Monday. We are getting our  followup appointments scheduled so Elizabeth will be seeing her home pulmonologist next week after we get home and her peditrican Monday of the next week. I am a bit anxious about getting her out and about with all of her equipment, so we will see how that goes. We got her new car seat the other night and ordered her new stroller so it will be at our house and ready for appointments. And then we will be traveling to Nashville every 2 months for an appointment with pulmonary/ENT/GI/cardiology so we will be back here in December and then again January for a followup with neourology. We know Elizabeth still has a long road ahead, but we are very hopeful that we now on the right path for letting her lungs get the support they need and giving her lungs and body time to grow.

Thursday, October 7, 2010 10:46 PM, CDT

Elizabeth had another good day, still planning to be discharged on Monday as long as all goes well the next few days. She did throw up again tonight, but started smiling as soon as it was over. Matt did the trach change today, and things seemed to go pretty smoothly. We have learned to go step by step with things to make sure we dont miss anything so we talk each other through everything. Getting more exicted and nervous about being home. We will be spending even more time at our house than before, we would love to be able to do the "normal" stuff like taking her out with us and doing stuff. But know its in her best interest to stay home alot, especially with cold/flu and rsv season starting. Plus that fact that she isnt exactly the most mobile thing with all her gadgets. So hopefully by the time it gets warmer out she will be doing better and be ready to venture outside the house to places other than the hospital and dr appointments :)

Tuesday, October 5, 2010 11:18 PM, CDT

Elizabeth is officially on her home ventilator! She has done well with it since they transitioned her over, so we will see how tonight goes. We will have training tomorrow on the ventilator from our home health person. And then we will do our 72 hour rooming in, where Matt and I are doing all of the care ourselves and resolving any trach/vent issues on our own. (Nurses will still be avaialble to help if we need).  If Elizabeth continues to do well we are looking at going home Monday or Tuesday. We are exicted and scared to go home, its ALOT of responsiblity have a child with a trach, a ventilator, and a feeding tube. 
So now we are trying to figure out what all we need to get in order before we get out of here. We went and looked at some double strollers today, so we have room for Elizabeth and all her equipment when we go to doctor appointments. And we are thinking we should go ahead and get her a convertible carseat so she has more room with all of her new accessories. We are also begining to realize the large amounts of medical supplies we will have in our home. We already had alot before with the oxygen tanks/supplies and her feeding pump/supplies but now add to the oxygen/feeding stuff, trach stuff and vent stuff I think we need a bigger house ;)
We are still dealing with insurance on getting home nursing taken care of, the company we planned to use is out of network. But we are hoping something can be arranged to use them, if not we still have other options but we need to get it arranged by Friday!!
We want to thank everyone  for your support, we are beyond grateful for the call, emails, posts to this page, and generosity. Elizabeth has definately changed our lives and we hope that by sharing her journey, she has been able to touch everyone elses as well.

Monday, October 4, 2010 11:25 PM, CDT

Another good day, with a little bit of throw up this morning. Our conference got moved to tomorrow with all of the doctors. But the plan for now is to get the home ventilator delivered to the hospital sometime tomorrow and begin the transition. It may take her a little while to adjust to it and some time to get the setting just right since the home ventilator is different than the hospitals. But we are hoping she does well with it. She had physical therapy and occupational therapy today. They removed the PICC line from her arm since she no longer needs IV meds, and will only place another IV if needed, hopefully not since she has such a hard time getting them. I did get to change her trach again today, I felt a little more comfortable with it but still don't like doing it! Elizabeth realizes whats about to happen and she doesn't like it either, so she wiggles around ALOT and kicks so we have to hold her down to get it done. Not very fun! Matt held her for a little while tonight, and she seemed to enjoy it. Other than that not much going on today, just waiting to get the new vent here, we are hoping to do our rooming in this weekend and believe it or not HOME next week sometime.

Monday, October 4, 2010 12:10 AM, CDT

A great day for Elizabeth!! She did not throw up today. She finished her last dose of vandomyicn (antibiotic) so she no longer gets anything by IV(PICC). They will leave he PICC line in until closer to time to go home just in case she needs IV Meds again. She is still on CPAP mode on the ventilator and doing well with it. She was very happy and playful all day, she didnt want to sleep much afraid she might miss something. AND I finally got to hold her again! I havent been able to hold her since her surgery for the trach on Sept 8th. She seemed pretty happy about it, (I posted the picture on here). Every conversation the Dr/nurses have with us now involves the word HOME so we are getting close. We will meet tomorrow and decide on when we will try getting her on the home vent to see how she does. As we get closer to going home, I get more nervous and worried about caring for her. But hopefully with time we will get into a routine and it will seem easy.

Saturday, October 2, 2010 3:49 PM, CDT

Not much to update yesterday, other than still throwing up randomly. And continued weaning down on the rate of the ventilator. We got moved to a larger PICU room around 11 last night and this one has a bathroom in it, so no waiting for a shower and carrying all my stuff down the hall for it :) The only downfall was carrying 38 days worth of "stuff" down the hall to the new room, thankfully Matt was still here to help with all that.
Oh, and Elizabeth got to meet her Uncle Matt for the first time! He left for Afghanistan in January after she was born, and was unable to see her since she was in NICU and the hospital rules only allowed parents/gparents to visit. She seemed a little confused about him but started smiling, so I think she might like him just a little ;)

This morning they were able to wean her totally off the rate of the ventilaotr so now she is on CPAP through the vent, just getting pressure and oxygen support. They will try to get the pressure and peep down on the vent over the next fews days but she seems to be doing really well right now. She's still throwing up today, so they did more bloodwork, which came back normal. So they are going to adjust her feedings and started giving her some meds that put good bacteria back in her gut. Part of the problem may be all the antibiotics shes had lately have killed the good and bad bacteria making it hard on her digestive system, so we will see how that goes. She has been playing and making lots of noise. The new trach size gave her a rather large leak around it so she can babble, laugh, and make noises pretty good, we still cant hear her crying very much but we are grateful for any noises we get.