Thursday, November 30, 2006

11/30 - PM Update - "Palliative" care

Oh man - I am tired. I cannot think anymore.

Every SMA family MUST deal with the topic of "palliative" care. Websters.com says: "serving to palliate" -- not very helpful. Oh wait -- futher down it says: "Relieving or soothing the symptoms of a disease or disorder without effecting a cure." But, Medterms.com had the best explanation, I think. "1) Medical or comfort care that reduces the severity of a disease or slows its progress rather than providing a cure. For incurable diseases, in cases where the cure is not recommended due to other health concerns, and when the patient does not wish to pursue a cure, palliative care becomes the focus of treatment. For example, if surgery cannot be performed to remove a tumor, radiation treatment might be tried to reduce its rate of growth, and pain management could help the patient manage physical symptoms."

We chose to put Emily through her G-tube/Nissan surgery a year ago b/c we saw saw an opportunity to give her a longer life of good quality in a way that is more manageable for us. I have said it many times, we are not trying to "beat" SMA or make her live longer that she wants to, but with the palliative definition in mind, we have chosen to use the Cough Assist, BiPAP, suctioning, etc. as respiratory aids, to lengthen her life in a palliative manner. However, as we become more familiar with the minds of healthcare providers, we are learning that the term Palliative does not mean the same thing to everyone. Even among the teams that we are dealing with here in the PICU there are obvious differences about palliative care. I think of it in reference to time. Some of us feel a sooner death is better, others believe the opposite. We believe that good care can extend Emily's life without degrading the quality of it. We are trying to address the acute issues (e.g. Pneumonia) in a way that sets us up for the chronic issues. If we don't wean Emily off the BiPAP correctly, everything else is going to suffer. However, if we can wean her in the most effective way we will all be more prepared to deal with the ongoing care.

I write these things b/c they are constantly on our mind. We are trying to make the best decisions for Emily and dealing with the different medical personalities makes this a challenge b/c of nuances in understanding like I mentioned above. That being said, we had a good conversation with Pulmonary today. They seemed to think as we do about Emily's respiratory condition and we are going to make some aggressive changes to her care b/c it will, hopefully, set her up for more manageable and healhty care once we get home.

Thanks for reading. Peace <><

Wednesday, November 29, 2006

11/29 - PM Update - Break from BiPAP

Emily had a great day today. We were able to give her some time off the BiPAP and her Oxygen saturation was better off the BiPAP than it was on the BiPAP!! We got to her hold for the first time in 2.5 weeks and she gave us lots of smiles. That's our Emily! :) Nurses were coming in to check her out and everybody was so excited. We held her so Annabelle could see her from the doorway to the PICU and that made her pretty happy too. We are hoping to be home as early as Fri, so let's pray that Emily will just do great.

Quote for the day -- We are where we are because that's where we are.

11/29 - Early morning - Validating You

Do not let ANYTHING validate your existence more than Christ does. I've been thinking about this and I've come to realize something, sort of -- Wealth is not something I use to define or validate who I am in society, nor do I use possessions or my job, but kids. I have come to realize that having kids, to me, defines who I am and where I stand as a man -- I feel that they validate me. I need nothing else but lots and lots of children b/c only then will I be "rich." Having children has become more important to me that my relationship with Christ, so imagine how that has gone over in my life for the past few years!!

We cannot look for fulfillment in life anywhere but in Christ. We can own nothing but our love for Christ -- and even THAT is something God gives us. (I'll have to get back to you on where that is in the Bible b/c I can't remember -- I promise there is something that says this though)

I don't have a lot more to say about this right now - but I needed to get it out. I am slowly learning how little sense it makes to put my value, my stock, my worth, in life into anything but a relationship with God. He has made me who I am and is continuing too mold me into who He wants me to be. I am not there yet, but to work against this is INSANE!

Peace <><

Tuesday, November 28, 2006

11/28 - AM Update - Recovering

So - it looks as if we are more noticeabley in the recovery phase of this 2.5 week journey. It has finally been more than 24 hours without any set-backs in the weaning process. Emily is off her pain killer, she is on full feeds, there are no signs of infection, and she is doing well on the BiPAP. We have to wean her down on the BiPAP settings, but that is not a real big deal. There is also some congestion in her right lung, a good reminder of how important her respiratory treatments are. The only thing we are really waiting on is for her to be completely off Valium as well. We have to do some planning before we go home, however, b/c she has different needs now. We are considering a different route for her diet, something that every SMA family has to deal with at some point, and there may be a greater O2 need on a regular basis once we get home. We'll have to see.

Last night some folks gathered to pray for us. Thank you so much. There have been nights of seeming emotional and spiritual destitution, but last night was not one of them. We slept and dreamt well. There is no doubt in my mind that the many, many prayers that have been given for us have been showering us with grace and comfort during these two weeks and more. Also, thank you all for the generous donations to Emily's Medical Fund. There are many unforeseen costs with these situations from medical to personal -- it is an incredible blessing to not have to worry that much about finances. Thanks again!

Sunday, November 26, 2006

11/26 - PM - Annabelle = FUN

I have had a lot on my mind over the past couple of days and most of it has been pretty painful. I wanted to write about it, but the things below came to mind instead. I hope I can get to that other "stuff" some time soon.

An exciting thing happened today - Annabelle was able to spend a couple of minutes with Emily. When she has been at the hospital she stands by the entrance to the PICU and waits for the door to open to she can catch glimpses of Emily's bed or a stuffed animal on her bed. She would report, "Daddy! I saw Emily's tiger's ear!!" Then, when the door started to close she'd hit the button on the wall that makes them open again. Such a sly kid! Then she'd have to stop b/c someone would come lookin' for the adult responsible, me. hehe -- I just let her do it until someone seems to mind b/c I think it's great that she just wants to get as close to Emily as possible - I can't justify telling her that she can't do that. So, she got to give Emily some kisses and tell her she loves and misses her. I can't emagine what it is like to be Annabelle. I'd be much weaker I think.

Emily had a good day. She was as active as we've seen her in two weeks and some friends, Lita and Vicki, were able to experience that with us. My mom had some good Grandma/Granddaughter time with her too -- that's always nice!! She did have a rough night b/c her respiratory rate was so high and she wasn't able to calm down much, but maybe she was just trying really hard to make sure we all had a fun day. :) We are still here for a bit though. We have to get her back on a regular feeding schedule and we need to get her weaned from the BiPAP, at least to what we do at home. So we are not packing up just yet.

Annabelle and I attended New Song Community Church this morning and that was a blast. Pastor Williams spoke about "Redistribution" and how we are to live Open-Handed and Open-Hearted towards the poor and needy in our community. He spoke from Deut. 15:7-11 and Acts 4:32-37 and it was good. I was reminded that nothing I have is mine -- I am only a steward of the things I have b/c they are God's, including my children and my sufferings. I could not help but think about our situation. Not only are my kids not mine, but my emotions and the experience is not mine either. I must be willing to be open-handed and open-hearted with our experiences just as readily as I might be with our finances and time. If I am unwilling to share these things with you, then I am not trusting God's purpose for them. I think we often do not think of it that way. We think of sharing as if it only has to do with physical possessions... and sometimes time, but what about our oh-so-private emotional possessions and experiences -- those things we hoard to our own detriment?

Peace <><

Saturday, November 25, 2006

11/25 - Update - Things Are Good

Emily had a great night and a comparably good day so far. The attending Dr. thought it was good to start her feeds again so we'll see how that goes. She is responding well to the Cough Assist and we are getting a lot of thick stuff out of her lungs. All in all her health seems to be returning much better now. Her baseline strength and respiratory wellness is different than it was, so we'll be adjusting to a new home life when we leave here.

I want to thank everyone who has sent us such encouraging emails. I hope you understand why I can't get back to everyone though. I have barely been able to respond at all, but we appreciate and survive daily on every one of them. :) My hope is that you may find some response to your personal concerns for us in my daily posts. Your emails make me think and that drives me to post. Thanks!

We rushed home last night b/c I had an excruciating migraine - something that has only happened to this degree once before in my life. I had to get some allergy-free pain medication from home. Anyway, maybe this is my body's response to the erratic couple of weeks.

Oh yeah - Diana and I had a semi quiet couple of hours to ourselves and watched a couple episodes of LOST for our anniversary. :) It was fun. A big THANK YOU to the folks that sat with Emily yesterday so we could have some "time off." :) :) :)

Friday, November 24, 2006

11/24 - PM Update

Not much to report today. Emily had a good day despite her white blood cell count and we started her cough assist. She really wants to have a break from her BiPAP, but she just isn't able to do it yet. The best thing about today was that we were not reintubated. The longer we can hold that off the more likely it is that we will able to go home.

We had quite a few people sitting with Emily today to give us a break and that was such a blessing. Diana got to sleep, I didn't have too many decision making responsibilities today, and were even able to spend some time with Annabelle. We miss her and she misses us. I hope we get to go home and be a family again some time soon.

My parents and Cindy have been visiting on a regular basis and that has been sooo nice. It is great to have them nearby for support.

Thank you all for the support you give us in so many ways. We really couldn't do this without the prayers for us and concern that you show us. Thank you for sharing in this with us!

11/24 - AM Update

Well, here's to another wedding anniversary stunted by SMA. It's not all that bad though. Diana and I have had PLENTY of time to the two of us over the last, nearly, two weeks... just not the quality time that one might expect out of life. Speaking of Diana - she was up with Emily all night last night at the hospital while I battled it out with God on my knees at the RMH. This was followed by deep dreams and waking up throughout the night. Too much to think about and such weighty decisions.

After Linnea died Diana and I went on a "silent retreat" with Klesis in Connecticut. It was a very important experience for both of us. One thing I learned there is when I am talking to God, get out a pad of paper and just write what you "hear" or are thinking with NO filter whatsoever. I did this last night, in the dark. Call it want you want, but I was reminded/told/comforted (pick your own word) that no matter what condition Emily is in God already "has" her. I was pleading for Emily's life and wanting her back and I felt that God was asking me "are you sure?" I said "no." What I want is to not feel the way I do -- helpless, hopeless, comfortless, and used. If I cannot have Linnea and Emily then I want Him to make me feel the way they make me feel. I want to be caressed with the kind of love you can only get from the undeserved, reciprocated love of a child of your own. If Jesus is enough, then He can do this and the Bible says He will -- and I am going to understand what that means and learn to desire what it is.

Emily's white blood cell count was over 51,000 this morning. That is astronomically bad. She is fighting an infection that we cannot see or measure b/c it is not in her lungs, as far as we can tell. In fact, we are not sure where it is at this point. In order to start her feeds she either has to be reintubated or we have to tell them that we would not like her to be reintubated regardless of the situation. We are leaning towards the later.

We are spent and the logistical nightmares of continued DME provisions that awaits us is making me feel sick. We have been discharged from Hospice b/c that is the policy when the patient has been admitted to the ER and all of Emily's DME was provided through them, so now we have some decisions to make, again.

So - another thing I wrote down last night was that I should read Psalms, Proverbs, and Ecclesiastes. So, I will read them today if I can. Peace.

Thursday, November 23, 2006

11/23 - PM -- Tough Day

We had a pretty tough day -- it was made a bit better by some GREAT food from the Worths and a visit from Chrystopher and the Gillette's, but it was tough. There is a multitude of things that we are concerned about and the main thing is Emily's nutrition. We have been fighting for her to get better nutrition (food in the stomach), but our sense of urgency for her "good nutrition" just isn't shared by her Dr's here. It is very frustrating (maddening). We ALL want her to be successfully extubated, but if she is going to waste away in the process b/c of a lack of substantial nutrition and respiratory care there was no point taking her off the tube b/c we are going to take home a completely deteriorated little girl that will not have much longer to live -- the main reason we avoid taking her to hospitals the the first place. The medical staff at JH's has been genuinely concerned for Emily and her care, we believe that, but when it comes to weighing the risks and benefits of her total care we are just not on the same page and we are at the mercy of their orders in the end. We get talked to very often like parents that are just concerned and don't see the whole picture -- a grave misunderstanding of our knowledge and ability. We are constantly treated like we we are not concerned about the same things as the medical staff which is just not true. It's an uphill battle though. I don't know how much longer we can fight like this b/c all they have to do when they get tired of us, like a Respiratory Therapist (RT) did tonight, is call someone else to deal with us. An RT was called to deal with us this evening and he said "you SMA parents are the worst b/c you know the most!" It was a compliment and he said that he commends us for the job that we do. He talked things through with us and said not to give up b/c only we know Emily inside and out. We're so tired.

11/23 - Trouble (changed)

Please pray for Emily. She has had a difficult time keeping her O2 saturation up. We were surprised this morning to hear that the attending Dr. that wanted to see how Emily was doing this morning ISN'T her attending Dr. today, so that adds some frustration! Her blood pressure was high this morning too. Anyway, not a great start to the day.

Wednesday, November 22, 2006

11/22 - Introducing Emily


Thank you for your prayers!! After much review the peculiarity of the "fracture" has resulted in it being a moot point right now. Maybe there was one at some point, but there is no indication that anything is wrong now. Maybe we'll re-visit that at a later date. We are not out of the rough yet, but things are looking good. Thanks!

11/22 - IT'S OUT!!

1. Emily has been extubated!! That means her air vent is out and she is breathing on her own, for the most part. We use a BiPAP at home and she was extubated straight to that. So, she is no longer on life support and that is what we have been waiting for. Everybody will be observing her closely to see if she is able to stay extubated, but everything is looking great. Praise God!!

2. Diana's such a great mom and she knows Emily so well. B/c of mom's good looks (there's a double meaning in that) she was able to spot a part of Emily's right arm that seemed out of the ordinary. It seemed swollen around her elbow area and we noticed that it was somewhat sensitive. Turns out it is a fracture! :( Emily has a fractured arm! Over a month ago she did fall out of her bed and we are wondering if it is from that, but we are not sure. It could have happened here at some point too, so there is a Pediatric Orthopedic Surgeon and a Radiologist looking at the X-rays to see if they can determine how old the fracture is. The GOOD thing is that now we know why Emily has been strangely fussy during her stay, besides all the crap that put us here. The bad thing is that we don't know what to do about it, necessarily. She moves it around freely so that is good, but it is obviously tender and that MAY be b/c she has been straining against the "No No Straps" -- who knows really?! More to follow...

Tuesday, November 21, 2006

11/21 - Nearly a PM Update

It's another day on the tube. Emily is doing exceptionally better, however, and we are thinking that they stopped her sedation meds too fast. She was stressed yesterday and developed a high fever, so we are working things out today in hopes of extubating tomorrow. Her white blood cell count is high which indicates the body IS fighting, or is preparing to fight an infection. It's like a bunch of soldiers all suited up for battle and their marching off to war. Sometimes, though, there is no battle once they get there. Other than that she is still retaining too much water and that complicates some things. We'll see how things go as the day wears on.

So, since masterpieces can never be duplicated I'll see what I can do about replicating yesterdays post, but it may take some time -- I am still crawling out of my hole of despair.

To suffer is to live. That's my new quote (maybe someone else thought if it too, perhaps, but I just thought of it so I'm saying it is mine. :)). If we are not able to suffer then we are not able to really live. If we try to avoid suffering, then we are avoiding life itself b/c it is full of suffering. Some of us may not suffer as much personally, though, and that is what I want to write about. I don't want to ask "Why is there suffering?" but "Who is suffering for?" I think that, generally, "we" are always trying to avoid suffering. We shield our kids from it, we whisper about it, we turn the lights down and play soft music --- many (if not all) addictions are rooted in an attempt to escape suffering... and all of this only leads to MORE suffering. Ha! The very thing we are trying to avoid we end up complicating even more in the end. Craziness. Suffering is something we must learn to accept and live through successfully. I believe that our lives can be enriched and deepened through the experience of suffering and I believe that our willingness to enter into someone else's suffering may even be more important.

Community: Many have asked us how they can help -- Companionship -- Community is who suffering is for. There is a passage in the Bible that we have held tightly to (2 Corinthians 1:3-7) that, in essence, says that if you are willing to share in our sufferings you will will also share in the comfort God is giving us. Often this comfort comes through you all, but it also comes from Him. An analogy -- I'm on a soccer field kicking the ball in the goal. I will only experience a limited amount of satisfaction as long as I am alone. It is when I am with people and I can share the moment of joy when that ball goes in the goal that I experience life the most. We are built for community. We are designed to want to share our experiences with others. If we are not sharing in suffering then we will not share in the blessings that come from it. We love it when people are with us, with Emily, and/or with Annabelle. Even if you are far away a short note, text, or call that you are thinking or praying about us brings together a community that we can share our experience with. If we don't know you care, we cannot share. (hehe, that rhymed) It allows us to share in our experience and allows for you to enter into it as well. I think that we will often leave people alone when they are suffering b/c we don't want to "bug" them, but I think we are sorely missing the point of the experience. It is not something to just "get through," but to build community. So, if you know someone that is suffering, let them know you are thinking and/or praying about them - even if you think you'd be bothering them. Also, suffering people may not know what it is they need until they have "it" or "it" is offered, so feel free to offer whatever you feel you can give. It is good for you and good for them.

OK - That was a far cry from yesterdays concoction, but it is along the same lines. I hope it makes some sense. Thank you for checking our updates and let us know who you are if you haven't yet. We'd love to share what we have learned, comfort we have, and even the pain -- for our benefit as well as yours. :)

Monday, November 20, 2006

11/20 - 4:30 PM Update

I just spent an hour writing a masterpiece about suffering and my browser reset -- it is all gone. (I am seriously on the verge of tears) Now the library is closing down and I have to go. :( (Wish this PC had Firefox b/c that wouldn't have happened.)

There will be no extubation today b/c Emily just isn't ready. We will look at things again tomorrow. That is all I have time to write now. Thanks for checking...

11/19 - PM Update

Not much to report today. We've had Annabelle for a couple of days now and I am realizing how tired we are and how much this disrupts the standard craziness of our life as a family. She misses Emily and is not allowed to see her b/c it is Flu season. Sucks! As you start to experience the fatigue of reading these daily updates be glad your not writing them or experiencing the story they are telling. I would never wish this experience on anyone.

We took up some offers to sit with Emily today and went to Port Discovery with Annabelle. That place is like speed, for kids!! It was fun and Bob and his son Shawn joined us for a fun-filled afternoon. Thanks Maureen and Eileen for sitting with Emily while we were out!!

Tomorrow the plan is to extubate, but we will see how things look then. No promises. We want to make sure everything is in order so we won't have to stay here another 2 weeks.

Thank you so much for the generous donations to Emily's Medical Fund. It creates a warmth to my heart that is simply divine. Thank you.

Sunday, November 19, 2006

11/19 - Short AM Update - Not today

Well, Emily will not be extubated today. She was on some diuretic to get fluid off her lungs and her body did not respond as intended. The Dr. does not feel that it would be a good idea to extubate with this issue unresolved and we are in agreement. So we will try again tomorrow and hopefully all will go well. She seems pretty content, however, and that is good. I think she will do fine for another day. She is breathing well over her vent, meaning she is doing most of the breathing herself, so it would seem that she will do just fine. Time will tell. Thanks for your prayers!! :)

Saturday, November 18, 2006

11/18 - PM Updates - EXTUBATION SCHEDULED!!

Today was a GREAT day! Emily was in a great mood and she did well on her vent settings. We are now ready to extubate (take the air vent out)! Her right lung is still not inflated as much as we'd like, but we are not sure it can totally inflate anyway given the concavity of her right side. It is possible that her right lung has been depressed for some time without our knowing for sure. Every day blood gases are drawn and other measurements are taken to determine how her body is handling the weaning process. Everything points to a successful transition from the air vent to the BiPaP which is something we use routinely at home. Anyway - the procedure will happen at about 8AM and all eyes will be on her as we determine whether or not she is handling it well. There is a chance that things will not go well and she will need to be re-intubated, but we are hopeful and confident, at this point, that things will go well. If you remember, and you are awake at 8AM on a Sunday, please remember Emily in your prayers. If this all goes well we may be home by Wed. :)

As always -- thank you so much for the meals that have been brought every night, for the phone calls and emails, and for the visits where we just get to spend time with you. Thanks for those of you that have sat with Emily so we could have a break and thank you so much for those of you that have been so generous monetarily. You are a incredible bunch and we feel forever blessed to have such great support during these days!!

Disclaimer - no nurses were being personally targeted in that last bLog. It was some pent up feelings from all of our encounters over the last few years with Linnea AND Emily. You guys do an amazing service and we love you for it!!!

11/17 - PM Update

Emily had a good day today. After her Bronchoscopy she did well and was happy for the majority of the day. She also slept a lot, maybe from the sedation wearing off from the procedure, so when we left to go to the RMH she was still awake. We need sleep though, so we are trusting that the good Lord will keep her at peace and give her rest this night.

It can be tough seeing new nurses take care of Emily b/c we are always being re-introduced to another medical professional where, most of the time, we feel that we have to prove ourselves as medical caregivers. If we do not exude a certain level of competency with the medical world we tend to get what I call "parent answers." Those things that the staff says to us so we will stop bugging them, even if it is not really true (yes, that has happened before -- many times). Now, I am not saying that that is all we get, but it does happen. So far the majority of our nurses have been great and talk through things with us so they understand what we are trying to accomplish. This is good since we take care of Emily 24/7, with respiratory and other therapies, by ourselves, at home... with no medical specialists helping us day in and day out. How does one really get that across effectively?? Sometimes you just can't I guess -- but seriously, unfortunately we are no strangers to this care. -- this gets tiring.

Ok - that is enough semi-venting for now. I have to get to bed for goodness sake!!

Friday, November 17, 2006

11/17 - Noon Update

Emily had her Bronchoscopy today and they were able to suction out a lot of plugs and thick stuff from her right lung. Tomorrow morning another X-ray will be taken and it will be more telling of how her lung really is. She is much happier today, since they have changed medication, so we are able to relax a little. We are also hoping to spend some time with Annabelle this weekend -- so thank you to the people that have volunteered to sit with Emily while we are out, and please pray that she will have a good weekend!! Cheers, Nate

Thursday, November 16, 2006

11/16 - PM Update

Today was a difficult day b/c Emily was in pain. This has been going on for the past two days, or so, and it was very difficult to watch. She would fall asleep and then wake up suddenly with a cringe on her face, gap-mouthed. We are used to solving her discomfort problems by understanding the tone of her cry, but with the vent tube in her airway she cannot make a sound... this makes it very tiring to try and figure out why she is silently screaming. I hope she is simply tired of being in the hospital.

Diana spent some time with Annabelle today - Annabelle was SOOOO happy to spend some alone time with her mommy!!

Tomorrow we are having a Bronch Scope done to see if there is anymore that can be cleared from Emily's right lung b/c it is not cooperating. The sooner we can get her going on her own, the sooner she will be happier. I did manage to procure a pacifier and extra cushion for her bedding today, so maybe that will make her feel more "at home."

We continue to be provided for in many ways. Every day we get to experience the best side of everyone we know as you show your care and concern for us. You know who you are, so THANK YOU THANK YOU THANK YOU!!! :) You are all such a blessing. Please allow our situation to be a blessing to you as well -- it's perspective that we all need to add richness to our lives, so let our "suffering" and struggle in its fullness add that richness to your life, and may it be a blessing to you in your own struggles -- after all, is suffering only for ourselves??

Cheers,
nate
the-lee-family.us

11/16 - Donation Requests

Dear everybody -- people have been asking, so I have reposted the "Make a Donation" button to this bLog and also at the-lee-family.us. A year ago a great friend of mine started the "Emily Lee Medical Fund" at the Bank of America so people could make donations for Emily's care in a tax deductible way. There are a few ways to donate to Emily's fund.

1. Walk in to any BoA location and make a donation to the "Emily Lee Medical Fund" which is located in Georgia.
2. Visit the-lee-family.us or emilysupdates.blogspot.com and use the "Make a Donation" link to donate via PayPal.com.
3. Visit PayPal.com and make a donation to emilyhopelee@gmail.com.

All of these methods will direct donations to Emily's fund.

To give you an understanding of our needs:
I was going to start LWOP (Leave WithOut Pay) yesterday, but my company has advanced me leave, which means that I will be many hours in the hole, not necessarily a good thing but the only thing my work can offer. B/c of Emily's visits to Salt Lake City and other appointments in the area, my leave balance is typically around "0," so I was not able to have any saved up for this sort of emergency. We are not interested in "asking for money," but I was avoiding responding to people inquiries about that aspect of our situation. Again, we are incredibly blessed in so many ways and we know that, one way or another, we will have what we need. Thanks for reading this, hopefully I won't have to write about it again b/c it makes me uncomfortable. :)

11/15 - Update - HAPPY 16 MONTHS EMILY!!!

Today Emily is 16 months old!! That is a big deal for SMA type I kids. She has beaten many odds in surviving this long and we are so glad that we get to be her parents. :)

Today was a little different b/c Emily's right lung showed signs of re-collapsing so her weaning process came to a halt while they raised the settings back up on her vent. She was generally irritated all day long b/c she needed a lot of suctioning and we think her G-tube site is hurting her. It is hard to just sit there knowing that she wants to move around, but she can't. She can physically move, but they have to restrain her little arms so she won't pull her vent tube out. They call the straps "no-no straps." "No, no Emily, don't pull your tube out." She doesn't like them and for good reasons. We try to move her arms and legs around throughout the day, so if you come in to see her we can help you do this too. :) The lung issues for today sorta make us step back a little, so we are not sure exactly when we will be able to get her off the vent, but we are hopeful that it will be soon. I'm not sure exactly what I meant by that, but we really just hope that she gets over this and we can go home soon. Annabelle misses us and we miss being a complete (minus 1) family again.

NEWS FLASH!! We are now staying in the Ronald McDonald House (RMH). We are no strangers to the amazing accommodations provided by the Hamburger King and we are blessed to be served in this way. They make these places just the way families need them when they are dealing with situations like ours. We'd love to help a local RMH some day when we are able. Community members provide daily meals and stuff for the residents. It's pretty neat. We will have a room here for $15/night for as long as we need it and there is FREE parking and a FREE shuttle to/from the hospital nearly any time we need it. What a blessing.

Thank you again for the calls, visits, gifts, prayers, and meals. We have an incredible support group (again, you all) and we are a blessed family b/c of you.

Tuesday, November 14, 2006

11/14 PM - Update

Another day has come and gone and Emily is still with us. Her right lung has not gotten much better in the last 24 hours, but she is doing well as they ween her off the tube. She is still intubated and probably will be for another day or two if things go in the direction they are now. She was alert a lot more today, but is very tired of having a tube in her airway and modeling as a pin cushion for blood samples and medicine distribution. The right side of her chest has been concave for a while now and we think that it may have something to do with her lung not being able to inflate all the way, but that is somewhat speculative I must admit. Again, we need to get her off the tube as soon as possible b/c she is weakening while she is on it and she can't really afford to get weaker. I am home again tonight (I didn't sleep in my van last night b/c there is no place to pee in the middle of the night!) so I am going to attempt to get some rest. I must say, thought, that it is disheartening for me to not here Emily's BiPaP and sleepy-time music going in the other room. It is all to reminiscent of the night following Linnea's death. I just hope that I fall asleep fast so I don't lie there thinking about it. I don't like leaving the hospital each night. We are looking into a hotel or the Ronald McDonald house for the rest of the nights. We miss Annabelle too, and she misses us... again.

Thank you everyone for your emails, visits, and phone calls. God has answered a prayer of mine, that we will feel His personal interest and touch in our lives right now and I believe He is doing just that through His "hands and feet." (That'd be you all) Thank you!

Monday, November 13, 2006

11/13 - PM - Update

It is 1823 on Mon, 11/13 and we are still at John's Hopkins with Emily. Bear with of as I make this update from my phone. Emily is on life support bc her right lung had completely collapsed, causing her body to start shutting down. All efforts now are aimed at getting her off life support as soon as possible, which is the worry given her low muscle tone. However, it may be a few days before she is able to be taken off the support, if at all. If she is not able to extubate we will have to discuss end of life issues in a more immediate fashion. Emily seems very content given the fact that she has a tube down her airway and she falls in and out of sleep all day long. The goal is to get her right lung to open so she can breath normally again. Annabelle is spending time with various friends/playmates as she is not allowed to visit this area of the hospital. She is very thoughtful about the situation and understands the implications bc we have had discussions about when this day would come. She is such a neat girl. We are exhausted and I'll be spending the night in the back of our van in the parking lot while Diana will stay in the hospital and maybe in a room for mom's. Please pray for wisdom, comfort, peace, undertanding, and the like. We don't always feel like God is here, but I trust that He is... that is tough. Thanks for your calls and emails today.

Emily - ER - Intubation

At midnight we admitted Emily to John's Hopkins b/c her breathing was
slowing and she was fading. She had to be resuscitated and now she is
intubated. This puts us in a situation that we said we would not be
in, but nevertheless here we are. At this point we have to decide to
stave death or submit to it. Pray that God will prepare our hearts for
whatever is to come. I am not confident they (Our hearts) can sustain
another loss right now.