Details...

Hello all... No, I wasn't kidding when I said I might be offline for a while. But I didn't realize until now how long it actually has been!

Ellie is doing very well. She still has a ways to go on her eating, but she is doing great on being able to walk and get around easily. And her emotional state seems to have taken a giant leap in the right direction. Every day she seems more and more like her old self! It has been wonderful to see her talk and giggle in a voice much more like her old one, albeit still softer. One of her vocal chords was probably beat up a little during the first intubation (if not subsequent intubations). Thankfully it is not a permanent condition, and seems to get better by the day. I keep hoping that it's just my imagination, but I have also noticed that Ellie seems to have even more difficulty hearing than she did before "the big event," as March 28th will forever be known to us. One of the antibiotics that Ellie was given is known to have potential hearing loss as a side effect, particularly when used in combination with not one, but two of the other medications she was on. I guess time will tell...

We have been trying to make arrangements for our week in Florida, and it has proven a little more difficult than we would have liked. We finally have a plan now. We were unable to secure a flight with the Corporate Angel Network due to mechanical and scheduling difficulties. We were able to use a friend's frequent flier miles to get one way tickets on a commercial airline. While we are a little hesitant to fly commercial due to germs, our doctors have assured us that Ellie's blood counts are high enough to handle it. So we fly out on Sunday. Our tentative return date is Monday, May 7 on an Angel Flight (a small aircraft that makes a couple of hops as it wings it's way to NY). And so we are all set for a wonderful week at home... almost. First we have to pack up our room at the Ronald McDonald House and find places to store our stuff for the week. John is working that out today. We have a couple of possibilities that he's tracking down. It should all fall into place.

We have had a number of requests for an adress to send cards and care packages...

The address for the Ronald McDonald House here in NY is:
Ronald McDonald House
John, Sarah, or Ellie Skees
405 East 73rd. Street
New York, NY 10021

The best address to use when sending anything to Florida is:
Stan Skees
1000 E. First St.
Sanford, FL 32771

Please bear in mind that we will not be in NY for the coming week, and we are extremely limited for space in what we can bring back with us from Florida.

The other question that we have been asked recently has to do with our financial needs of late. I've never talked about this on the blog before because it's complicated and it has never EVER been our intent to ask for money. Thus far we have seen God provide for all of our needs in the most wonderful of ways through many of you. We have felt strongly that God would make our needs known quietly and as they come up. His timing has always been perfect. We have, however, been asked a number of times recently how we are doing, most recently on this blog. And so I feel that the time is right to give you an overview of the past 7 months as well as where things stand now. My hope as you read it is not that you will see it as a desperate plea, but rather a wonderful testimony of the provision of God in our lives.

Early on, some friends were looking for a convenient way for people to help out and so they found a way to add a "donate" button to this blog for that purpose. We also have a fund set up in Ellie's name that some have sent money towards. Others have simply sent checks directly to us. Also in the beginning days, we added a room onto our house so that Ellie would have her own room and many people gave money specifically for that. My amazing step-sister, Jenn, has taken it upon herself to instigate fund raisers that have been an incredible source of help to us! Since John made the difficult decision to remain with Ellie and me in New York, our financial situation has changed yet again. John has a lawn/landscape business, and he and his dad were able to pare down the accounts to something that his dad has been able to handle (with some help from thoughtful family and friends). Those remaining accounts allow us to keep the business going and keep our house. When the social worker at Sloan Kettering learned that our Ronald McDonald House bill was being paid through generous friends, she was able to take that over so that we would be able to use the money for our food and living expenses.

We do have insurance for Ellie that covered the medical bills that were incurred in Florida, but things now are much more complicated. It was going to be a long process to try to guarantee coverage for Ellie's medical expenses in New York before we left Florida. When we were faced with a possible surgery for Ellie as well as the fact that her disease was not responding as it should have to the standard course of treatment, we knew that Ellie needed to be at Sloan Kettering where they specialize in Neuroblastoma - so we decided to just take the leap and come. So far insurance has not agreed to pay, but also so far, we have not paid for any medical bills ourselves. The unpaid ones are just now starting to come in, but there is much more to be done in the pursuit of coverage as well as leads to pursue towards receiving financial assistance. When all is said and done (especially after 32 days in the hospital - 18 of which were in the ICU), there will almost certainly be medical bills to pay, but God has already seen fit to begin to provide... We are hoping that soon there will be a tax deductible account set up specifically for medical expenses. So far we have had to use a basic "Ellie's Fund" account, but we would love to find a way for medical expense donations to be tax deductible.

It has been such a humbling and yet wonderful experience these past months to see all of our needs - from daily expenses to unexpected needs - met WITHOUT FAIL when we need it. (Not to mention the untold "extras" - those special touches that mean not only the needs are met, but some of the wants too...the Christmas presents and other "just because" gifts... the special care packages for our children... the gift certificates for dates for John and me... and the list goes on.) Our gratitude towards all of you knows no bounds and our hearts are not heavy and anxious as we look to the future because we know without any doubt that God will truly supply all of our needs. Both John and I grew up seeing our missionary parents' needs met in the very same way, but I think that it caught us both a little by surprise after years of living by "the sweat of our brows" (ok, who am I kidding? The sweat of John's brow... I take great pains to keep myself out of any situation that requires sweat... ugh!) to see how God would take care of us so that we are able to look to the needs of our daughter.

Hopefully the next time you hear from me, we will be home with our little Ethan! I can't wait to update you on our wonderful time home... think pictures, lots of pictures! Much love to all.

Going Home...at Long Last!

Today we received the welcome news that Ellie will be discharged from the hospital tonight! We're so excited to be finally taking her home. She has made great progress in physical therapy - today she played hopscotch even and practiced walking stairs! She still has to continue eating and drinking and taking some medication by mouth. Her temporary central line will be taken out today which means she gets to go home for the first time in 7 months with no tubes in her body! She will be able to take long full baths and play unencumbered...

Our plan - only as of yesterday - is now to try to go home to Florida for a week! We are trying to get a flight through the Corporate Angel Network - hopefully for Friday. We can't wait to see Ethan again... it's been too long.

Thank you all for your constant prayers and support during the long hard past month. We wouldn't have wanted to go through that without you all. We will still be posting some things - hopefully lots of pictures - over the next couple of weeks, but I don't think that I will be posting every day. (I guess I haven't really been doing that anyway of late.) Please know that right now if there is nothing new, it's probably a good thing. We will certainly let you know if anything major happens and we will try to keep some happy fun things posted along the way!

My next update will be from somewhere other than that hospital. :-)

Hospital Days...

The past few days for Ellie have followed a similar routine: try to eat (more than she really wants to), walk some laps around the hall (also more than she wants to), and sleep as much as she possibly can (we have no trouble getting this to happen!). Throw in some computer games, TV, and some fun crafts in the playroom and that about sums up her days... While we are often treated to glimpses of Ellie's happy and sparkly personality, she is also frequently overwhelmed and continues to deal with the heavy emotions that naturally follow such brushes with death.

I thought you'd like to see a picture of her pretty face - without tubes and tape.



This video is of one of Ellie's first walks with the physical therapist some days back. Her voice was still very soft, so it's not easy to hear on this clip. She has been regaining her voice a little bit more each day, but it is still not up to full strength.

Prayer Request

I know I just posted an update today, but I have one more thing to add...

Today we have had a significant first since Ellie's diagnosis - facing the death of another child amongst our connections. A little girl that we met in the PICU - our little roommate Nicole (age 3) - has been found to have disease in her brain (not neuroblastoma, but another devastating childhood cancer) that is so extensive, she has been given the hope of only two weeks more to live. Our hearts are breaking for her family tonight. We don't know them well, but we sat on opposite sides of a curtain for weeks passing time while we waited next to our unconscious daughters and later listening to each other's daughters being extubated and intubated and re-extubated... Nicole's little tiny Italian grandmother and I took turns hugging each other while standing in the hallway waiting to be allowed back into the room during some of the intubations. This afternoon when Nicole's mom, Kim told me the news, all I could do was say "I'm so sorry" and hold her while she cried. I just wanted to bring this sad piece of news to your attention and ask you to please pray for this family - parents, siblings, grandparents and I'm sure many other family and friends. Our hearts are heavy as we have only a small taste of the grief they are experiencing tonight. I am so very thankful for you all and will tell Kim tomorrow that there are many many people who don't know her but are nevertheless lifting her family up to God in these agonizing weeks ahead. Thank you so very much!

A small look into the future...

Hi everyone! I'm sorry again for not posting in a couple of days. This time it's because things have been busy and I've also been able to spend some time away from the hospital - but didn't take the computer with me. There really isn't very much new to report. Ellie is getting stronger every day and being weaned off of many of the medications. She is doing physical therapy and practicing her walking and breathing. We are very pleased with her progress. I also just realized that I totally forgot to tell you that her chest tubes came out back when we were in the P.O.U. Her pain at that point was significantly reduced.

I'm not sure exactly when Ellie will be able to leave the hospital. She is doing so well that I imagine it won't be long... There is still a bit of a process involved in weaning down the methadone as well as the TPN (intravenous feeding). We have spoken with Ellie's oncologist, Dr. Kushner, and we have a plan for the next treatments. Once Ellie is able to leave the hospital, we will take her home for a week long break with no central line - or lines of any kind - and no doctor's appointments. She will simply get to rest, recover, play and take baths! (Taking a bath is the most important thing to her right now as she has been unable to be in water above her waist for 7 months because of her Broviac. We are so looking forward to having her tube-free, even if it is only for one little week! After the "vacation" Ellie will have a round of "mild" chemo as well as finish up the radiation to her head (she has 2 days - 4 treatments - left). After that, there will be some tests to determine what cancer is left in Ellie's body and we will hopefully be able to proceed with the 3F8 - Monoclonal Antibody treatment. After Ellie's first 3F8 treatment she will receive abdominal radiation. Even though her primary tumor in her left adrenal gland is gone, it is important to irradiate that whole area to ensure that the tumor does not return. We don't want any sneaky little NB cells remaining to pop up later. (Neuroblastoma is known for doing that!) Radiation to the abdomen causes nausea and low blood counts, so it is important not to do it too close to chemo. The radiation will be done during the three week break between 3F8 treatments. Nothing is set in stone yet, but we are hoping to be able to go home to Florida after her second treatment. Then we will need to travel back here once a month - 1 week of treatment, then 3 weeks off. Eventually it should stretch out to 8 weeks in between. As long as Ellie's body does not start to fight the treatment, this schedule can last for up to 2 years. I will give more details about all of this when we get closer to treatment. For now, I just thought you might be interested in a little overview. Of course, as we all know now, plans are made to be broken... but it does feel good to have a sense of what to expect.

As for the immediate goals: getting FOOD into Ellie is our number one task. Thankfully she has taken to eating better than I thought possible, but she still needs to get more calories in so that she can go home without the TPN. So as you're thinking of Ellie and wanting to know how to specifically pray, please pray that she will be able to eat good quantity and that her muscles will grow stronger each day. So far she has been able to continue coughing well - which is important to keep her lungs clear - so please pray also for protection from pneumonia. She also still has some of the blood clot left in her right pleural cavity.

I have some wonderful photos of Ethan to post that Stan sent, but for now I'm having a little technical difficulty getting them onto the blog. I'll put them out as soon as I can. We miss our little buddy SO badly! The days pass quickly here and I try not to think too hard about how long it's been since I've seen him... But when I let myself go there, I just want to cry when I think about how much I just want to wrap my arms around Ethan and not let him go ever again. As usual, I have to remember that the same infinitely loving and faithful God who holds Ellie in the palm of His hand will not let my little boy go either.

Praise God for Chocolate!

Sorry for the lapse in posting... for me it has been a long, frustrating and emotionally trying few days.

Ellie continues to do well physically as the days pass. She is moving around with a walker and sitting up in the playroom. She even made a couple of craft projects!

Mentally and emotionally have been a different matter altogether. For days Ellie has been - for lack of a better description... numb. The smiling picture that I posted a couple days ago was one of the only brief happy moments that she has had. She pulled into herself and wouldn't talk much - even to me. Most questions were answered with a mumbled "I don't know" and there was no life in her face. I can only imagine what it must be like to be in Ellie's head and have lived through the past three weeks. So much of it is unknown, even to her, because of the drugs... Then this afternoon I was able to have a wonderful talk with her. We talked about what happend to her. She is so sensitive and smart and really does want to know what's going on, so I told her that she almost died. Someway, somehow, in her heart she already knows that. She has to. I told her how pleased the doctors were at how strong she was to fight and get better so quickly. (One doctor today even told me "On March 28, I don't think anyone here thought that she would make it. But here she is and all of her organs are fine... I don't know what she's made of...") I also tried to find out what things she does remember and began to carefully and selectively fill her in on what was going on from our side of things - what was REAL. Her memories are a mix of real and non-real - mostly like a very vivid dream that has pieces of reality interspersed throughout. And there are, I think, blocks of missing time... mercifully. I was able to make some of it light - I teased her about how she got superhuman strength and she just giggled over that! I know that she's not finished sorting everything out yet, or possibly remembering - but she is beginning to. And for that I am thankful, because for the first time in weeks Ellie is really here. She smiled and laughed and TALKED. A non-talking Ellie is unthinkable... some of you out there know what I mean!

I have been fighting some discouragement (which I suppose is an understatement) regarding the process of changing hospitals and doctors. Everyone has been so good to us - it's not that - it's just the whole process... I have counted 5 attendings, somewhere between 5-10 fellows and 5-10 residents that we dealt with over in the PICU. Oh yeah, plus about 5 surgeons... Of those 20-30 doctors, there were only TWO that I can say were following Ellie's case (and staying in contact with us) off and on for the whole 18 days - one fellow and one surgeon (whose contact with us was often through his team, but we always knew he was consulted). And then we left there and came to this hospital where we have so far had 4 nurse practitioners, a team of 3 "pain management" doctors, and 1 attending physician (so far), and 1 psychiatrist, plus our oncologist (who is part of a team of doctors and nurse practitioners). I know that everything was charted properly and they can all read the data and they're all competent and respectable individuals, but yesterday something snapped in me and I lost it. It was all simply too much! I just wanted to look in the face of one doctor and know that he or she was there when Ellie coded... and when she was intubated, and extubated - three times... and when we had to hold her down while she was hallucinating... and when she went through withdrawals... and when she looked at us with clear eyes and smiled... and the list goes on. I was just so TIRED of fighting to be understood and listened to. I actually wished we were back in the PICU. (Yes, I know... the Israelites longed for Egypt too...) I left Ellie with John in the playroom, and left Belinda to unpack into our new (non-private) room and I walked away from the hospital in a fine fury - without telling them where I was going or why. Once out on the street I quickly realized that there was no place to be alone. I didn't have a plan when I left... I just walked away and hoped that something dramatic and helpful would materialize. I actually momentarily contemplated finding a bar (hey - don't be shocked... I promised you guys I would be honest and share with you where I'm really at...) but the image of myself sobbing into a drink just didn't sit right, plus it scared me a little. Then I decided Starbucks was a much saner choice but was too far to walk because by then I was hyperventilating from walking fast and trying to hold back the violent tears that were threatening burst forth all over the unassuming masses. (And quite frankly I'm tired of crying all over the unassuming masses - they don't deserve that...) The image of myself passed out on the streets of New York scared me to death. So I did the only rational thing I could do and went home. How boring! It was, however, the only place I could think of to be alone - and I was lucid enough to realize that it was the safest place to be given my alarming train of thought. Of course I didn't have my room key - that would be too easy. So I had to interact with two people without crying before being let into my room. I promptly threw myself across the bed in a fit of angry tears. And that is how I learned that it is not wise to stuff angry tears that long. I nearly had a panic attack trying to catch my breath. I eventually checked in to let the team know that I hadn't gone AWOL - well I guess I did go absent without leave, but confessing and reporting for duty within so little time should at least count for something! I then just vegged out on the couch and watched TV and ate chocolate. I awoke after about 9 hours of good sleep feeling much better about coming back to the hospital and dealing with it all. Somewhere in the midst of it all (I suspect it was at some point after the little talk I had with God where I appologized for the rage part...) I realized that sometimes there are just things that can't be changed - the process, the not being able to choose who you get to deal with and how well they will understand you. And in times like those, God still makes provisions. True, I didn't go home and read my Bible and pray (things which I will admit are always a great idea) but really what I needed in that moment was for the dam of emotions to break and to rest. And the chocolate was just the cherry on top. I can't tell you how many times I've been thankful that God made the cacao tree!

Today went much better. Things are falling into a rythm at this hospital now and I'm feeling much more comfortable with everyone and everything that is being done. It also helps that Ellie is much more herself. That great big elephant stood up and got off my chest. It's amazing what breathing can do for a body...

Thank you all for hanging in there with us. I love how happy you get over seeing Ellie smile and hearing good news. You are such a part of our lives each and every day. When something bad happens I know that you cry with us and when our hearts overflow with joy, sharing it with you is the first thing on my mind. And when I go into a funk like I have the last few days, you patiently wait for me to be able to express myself again and then you accept me where I'm at. I am so greatful.

A private room... at long last!

Last night we arrived in the P.O.U. (Pediatric Observation Unit) at Sloan Kettering. The silence in our room was almost deafening! We had a wonderful night's sleep - Ellie included. We have a large private room and only one machine that beeps occasionally. It's like being on vacation! Unfortunately the vacation will be short lived. We will be in the main pediatric wing of the hospital possibly as soon as today. There are a few much coveted private rooms there, so we shall see if we are one of the fortunate few when the time comes.

Today will be a busy day - and has been already. Ellie has sat up in a chair, and done some breathing excercizes, and now has even taken her first walk in about 20 days!! Right now she's exhausted from all of the activity, and is sleeping peacefully. We are hoping that her fever will stay down - she's been fighting one for so long... Tomorrow it's possible that one of her chest tubes will be removed.

And now, for some photos of the past 24 hours! (The tape on Ellie's face is holding the tube that goes from her stomach to her nose. They are hoping to remove it today if she can keep clear liquids down.)

Ellie was able to pet a beautiful golden retriever named Mila yesterday while we were still in the PICU.



Loaded up and ready to leave the PICU - thank you to all of the wonderful nurses and doctors who cared for Ellie these past 2-1/2 weeks!



As we rolled away, I asked Ellie if Aunt B could ride in the back of the ambulance with her since I get car sick and this is the face she gave me... needless to say, I rode in back!



Tucked into the ambulance for our 1 minute ride across the street.



Sitting up in a chair for the first time this morning in the P.O.U. She and John were blowing bubbles to do breathing excercizes and she was cracking up!



She's on her feet!! (A might unsteadily to be sure, but up none the less.)



Thanks so much for all of your prayers and love these past weeks. It has made all of the difference to us. Without your support I think that I might still be tucked in a corner somewhere curled up in the fetal position... Ellie still has a ways to go towards recovery, but for now we are breathing a small sigh of relief to have come this far. I am trying to live in the moment and not look too far ahead towards the possible setbacks, work of recovery for Ellie, and treatments to come. The grace of God is sufficient for this day, and this day in particular is a wonderful one! (Oh yes, and I now have my cell phone and computer back... can't you see my happy dance from there? My technological blackout has ended!)

Saturday Evening NEWS

Ellie was transferred tonight from the Pediatric ICU at NY-Presbyterian to Pediatric Observation Unit at Memorial Sloan Kettering! We appreciate all that the staff at PICU that worked so hard to help Ellie stabilize and be ready for this move. And we are so grateful to be back at MSK -- for now in a private room that is silent! We are feeling quite blessed tonight!

Loretta

Saturday Morning Update

Ellie had a somewhat peaceful night - relative to the recent nights - praise God! They are fine tuning the use of the Methadone to limit Ellie's having to experience withdrawal. She seems to do okay for about 3 hours and then the pain from her chest tubes and her sense of "I feel different - all over" takes hold. At Rounds this morning they have adjusted the medications once again to try to eliminate that time zone of discomfort where the meds wear off before the next dose.

She is still running fevers. She spiked a high one this morning and they are proceeding to take new cultures again. Her chest x-ray still shows some residue of the clot in her pleural cavity. The doctors stated that maybe she can move out of ICU soon! Sarah, John, and Belinda have established a 'basic rhythm' and are holding it together fairly well.

Thank you again for your faithful interceding for Ellie!
Loretta

Photo Journal

I know that Loretta gave you an update this morning, but I was able to get over to the house for a shower, so I wanted to get you some pictures. We shouldn't be in the PICU for very many more days, but I thought it might be nice for you to imagine where we've been "living" for this past two weeks. (Ellie will still be in the hospital for some time, but she will transfer back to Memorial Sloan Kettering once she is stable enough.)

A look at the door and nurse's dest from our corner of the room. Each room holds three beds and two to three nurses. We have seen a number of different patients come and go in our room.



Looking at our corner of the room from the front door. (Ellie's bed is just behind the nurse who is sitting at the computer station.)



A night shot from our window overlooking the East River and Roosevelt Island.



Ellie while still intubated... and heavily sedated.



Ellie post extubation (rather, third extubation)



Shift change - John on his way out and Belinda on her way in... or vice-versa (I can't remember). Yes, that is a folding scooter that John's holding - he's our "runner" and boy can he get places fast!



Snuggles last night - just before Ellie completely lost it and began hallucinating and thrashing. As you can see, she was more awake than I was. And she didn't sleep for the entire night. She eventually calmed down, but this morning she was talking without making sense and not responding to questions. The methadone times and dosages are still being "tweaked" today, but she is at least much calmer in her ramblings. As long as she is not afraid or anxious, she can be pretty entertaining at times. The black and white headband I was wearing in this picture was very troubling to her this morning. "It's all about black... and white." I asked if she liked it and she said "no" and when I asked if it was scary she said "yes." She has, however, decided "I'm ok with red." But "My head hurts from too much white!" And then this heart breaking declaration: "Been through...(long pause)... too much."

Withdrawal Begins . . .

Ellie continues to do well with her breathing, her oxygen saturation is good, and this morning she can come off the nasal canula. They are going to pull the arterial line in her left groin and the Foley catheter can come out today. She will need to receive a platelet transfusion today.

The unfortunate side effect of coming off the ventilator is that all the drugs that were used to maintain her during that time were stopped. Gradually last night, Ellie began to hallucinate as a symtom of this withdrawal. Supposedly if we establish and stay on a proper dose of Methadone, these symptoms should diminish. Sarah said to me last night, as she and Belinda were fully occupied with restraining Ellie, "hallucinations with words!" The blessing in this - we will now have a sense of what Ellie was seeing before, to better help her with any residual memories she may have from these experiences.

[Loretta]

4 1/2 Hours Post Extubation

Ellie is doing great! Resting calmly, breathing strongly! John has finally ended his 18 hour shift and is headed to the Ronald McDonald House to sleep till a later wake-up call. Sarah and Belinda are with Ellie and will take turns napping. All seems blessedly WELL at this time!

[Loretta]

2 Hours Post Extubation

Ellie is maintaining well off the ventilator! Her vitals are looking good and her blood gases (for those who know about them) are "looking great". All this to say, she did not have to put the BiPAP mask on and breathed on regular mask until 2:55 at which time the 2nd blood gases revealed she could be placed on a nasal canula for oxygen!

She is pretty weak, however, as sweet as always -- John had to leave for a moment and on his return Ellie gave a big wide eyed "Hey Daddy!" Sarah said it was the best voice and best look yet!

Thank you again for your prayers and love to us.
Loretta

Extubation 1:30 PM

Sarah asked that I do some one or two liner posts to keep you updated. Keep in mind things change quickly -- so bear with us.

Ellie has been extubated as of 1:30PM. She now begins the process of breathing on her own, clearing the airways, and maintaining through the pain. So far Sarah reports her "color looks good" and she is doing well.

A Rainy Day of Blessings

Last night another drain was placed in Ellie's chest, just above the first one. (Above, meaning closer to her arm pit - both drains are in her side.) For some reason the original chest tube was unable to evacuate the air near the top of her right lung. Placing the second tube higher and aiming it up rather than straight into her chest cavity allowed the doctor to release the air pocket as well as drain some fluid. The chest x-ray last night confirmed that the procedure was a succes, and the x-ray first thing this morning verified the good news. The word from doctors this morning was music to our ears: Ellie is ready for extubation!

This morning during rounds, Ellie was taken off all sedation drugs. They were prepared to give her an anesthesia drug (that wears off quickly) to hold her over until extubation, but she was so calm and lucid that the attending doctor has allowed her to remain conscious as long as she is calm. Ellie, of course, set right to work on charming the doctors. She answered questions (with nods and shakes of her head) including an emphatic "yes" to wanting the tube out of her mouth. She squeezed fingers and waved, and was awarded with a hug from her doctor!

Ellie is once again determined to communicate and I am reminded of how exhausting that can be. At one point, we had to get out paper and pen for Ellie to write out the word she was trying to say. It was hard to make out and we had to resort to playing "20 Questions" to find out that she wanted us to snuggle with her in bed. (I think that I might just keep that piece of paper forever!) She became fully aware of the arm restraints and looked to me for an explanation. She seemed to understand and was very interested in holding the restraint and looking at it. Eventually Ellie felt tired and was able to communiate that she felt pain from the chest tubes. She even told us that her pain was a level 5 on a 1 - 10 pain scale. The doctors ordered something to make her more comfortable, and she is currently sleeping (1:00PM).

I am writing this update on our coach near Ellie's bed and looking out at a gorgeous (albiet wet and rainy) view of the East River. Directly across the River is Roosevelt Isalnd where we have perfect view of the smoke stacks from the movie "Conspiracy Theory" (this is a little creepy when I let myself think about it - but kinda fun too). Barges and other water craft go by under our window from time to time. For the moment, all is peaceful and my heart feels light with an air of anticipation as we eargerly await extubation. I suppose the feeling might also be due to the rain outside - I just love rain!

I woke this morning with such a feeling of thankfulness in my heart, somethings are easier to be thankful for than others, but the exercise of consciously and specifically thanking God for the hard things does wonders for my soul. Then there are the easy things to praise God for on the top of that list are the amazing family that we have who choose to set aside their lives and move heaven and earth to be by our sides. And of course our ever faithful family and friends who love us and pray for us without growing weary. Thank you for your thoughtfulness and love. I don't know what we would do without you!

[Dictated by Sarah]

Wednesday Evening Update . . .

Late this afternoon the results of the CT reveal that there is fluid, blood, and air in the pleural space above the right lung which is compromising the upper lobe of the right lung. Ellie cannot be extubated until this is resolved. It appears to be a complicated situation because of its location and the majority of the afternoon has been spent in discussion by the doctors. Just recently (6 PM) the doctors took Sarah back and showed her the CT and discussed their plan. They want to attempt to place another drain tube through her side to the top of this lung and leave the present drain as well. They will also try to bust this area up with medication again.

The nasoduodenal (n.d.) tube has been pulled. They could not get it to seat properly in the intestines. Trials of feeding pediasure failed and Ellie ended up vomitting several times today as the pediasure settled in her stomach instead of going into the intestine as they had hoped. Ellie is running higher fevers today and they still report all cultures coming back negative. Seems we don’t really know the source of the fevers yet.

The final, major piece of information to report about is the need to return Ellie to a very sedated state until they are ready to move toward the extubation process again. The doctors are discussing the drugs and attempting to make the best decisions in this regard given Ellie’s sensitivities and paradoxical reactions to medications.

Sarah is basically staying in the ICU around the clock. The plan is for her to get breaks as often as she can. She is back-up for John at night and Belinda in the day. She is our "pro" napper morning or night. We have supplied her with some books and her companion on "watch" does primary care for Ellie and she is back-up. It is emotionally very stressful to be alone when Ellie "goes off" and for now we are working together this way for support. It is also better for Ellie, she will often sit-up or push-up and look to see her mommie on the coach in the room. Sarah also wants to be there to talk with doctors and have input in the daily decisions being made about Ellie. Thank you for your continued prayers.

[Loretta]

Wednesday Morning Update . . .

We have had a hectic morning. Sorry we did not post on Monday - the day and our energy got away from us. This morning the doctors have proceeded with taking Ellie off some of her medications and preparing her to be extubated. They have stated, however, that her "pneumothorax" [collection of air in the space surrounding her lungs and a partially collapsed lung] are worse today then yesterday. After discussion amongst themselves and with the surgeons, the doctors scheduled Ellie for a CT of the chest. [She was taken for this at 1:25 PM.]

After these results are received, a determination will be made as to whether an additional tube (shunt) will be placed in her upper chest and whether or not to proceed with extubation. When Ellie is awake, once again she is more aware and lucid than before. We think perhaps because one of the narcotics she was on has been stopped. We covet your continued prayers in this time.

Loretta

Do NOT poke the sleeping bear...

Sunday we had 3 hard epidsodes of Ellie fighting and having to be restrained, one with 7 people restraining her and one with 5 people restraining her. As mentioned in “Kisses for Daddy”, the Central Line was taken out of Ellie’s chest around 1:30 PM and a new one placed successfully in her right groin. They had to use anesthesia and a paralytic drug to accomplish these tasks and they were done by 2:30. Ellie then stayed asleep or knocked out until around 5:30 PM. However, the vigilance of her is never ceasing. It only takes one cough or shift of position to preclude a full blown episode. Whoever is watching Ellie needs to be at her side the moment movement starts in order to prevent a tube from being pulled or escalation into a kicking, fight mode. We have even had to resort to placing restraints on each wrist, but the clever girl simply bends her head forward or slides down in the bed to get her hands closer to her face!

We made it through Sunday night/Monday morning hours with sedation that appeared to work to bring Ellie physical rest. She is still very lucid and answers questions when she opens her eyes. Monday was fully involved in testing Ellie’s ability to breathe over the ventilator successfully, draining the fluids from her lung cavity, and keeping the right mix of medications to keep her sedated but not bottom her vitals out. She has been running a fever pretty steadily since Sunday in the early morning hours. Noon yesterday, the doctors came in and said they didn’t like the way one lung looked and that they would like to hold off on extubation for another day or two. This morning we were told that they are pleased with the progress of her lung, so we are hoping for extubation tomorrow.

We were blessed for 3 days and 3 nights to have the same nurses and a rhythm in Ellie’s care. Each shift change that brings new staff feels like we have to start over – maintaining continuity of care is exhausting. Each person who has come into contact with Ellie - doctors and nurses alike - have been kind and competent, but it does take a lot of energy to impart all of the details that we know work for her (particularly regarding sedation). We have been the only constant in Ellie's care over this past 13 days in the ICU, given the high turnover of personnel.

To illustrate this point...

Our nurse yesterday was new to us, and she was loving and enthusiastic in her care for Ellie. We had been giving clues along the way to her about how touchy Ellie can be, but when Ellie finally blinked and opened her eyes, that sweet nurse got right in her face and brightly said "Hi Ellie! No, no, don't close your eyes - I want to talk to you! I'm taking care of you today. How are you doing?" I looked up at Belinda who was standing next to the bed, feet firmly planted, with both hands ready to pin Ellie's legs and arms should the need arise, and watched the color drain from her face. She looked back at me with big eyes while I helplessly observed the exchange between the nurse and Ellie. My mind was racing as I tried to figure out how to respectfully explain that we do NOT want to try to engage Ellie's mind right now. And then she said "Look! There's your mommy and aunt B over there! Do you want to see them?" By then I think I was starting to shake all over, but I moved over to Ellie's head and started stroking her forhead and gently tried to put her back to sleep. (Another piece of the puzzle is that I seem to stimulate Ellie's need to communicate, so I've been staying aloof and have been interacting very little with Ellie.) Belinda and I were able to keep her calm and get her settled without incident. I finally grabbed my cell phone and ran out to call Loretta. When she commented that "you NEVER poke a sleeping bear", I came undone and together we howled with laughter.

By evening I had a good understanding of the fact that anyone new to Ellie's care would not be able to fully grasp how traumatic her epsiodes are, so I was armed and ready for the night nurse. Now unbeknownst to me, that gentle soul had already heard the horror stories from other nurses. Between that and my "preparation" she became bent on giving extra sedation any time Ellie so much as wiggled! And so the night became a struggle not to over medicate...

And now with the light of day, our happy nurse from yesterday is back and I actually came close to begging her for more sedation when she suggested reading or singing to Ellie since her eyes were open and she was calm! She was ready to lower the bed and pull up a chair for me to sit in to hold Ellie's hand. Within not very many minutes, Ellie was sliding down in the bed, kicking both feet and biting the ventilation tube. Needless to say, I didn't end up having to beg for drugs.

And so, this time of supposed sedation for Ellie is not exactly relaxing, but as with every other point in this journey God has given grace in the moment. And thankfully He has preserved our senses of humor. I figure sometimes, if I couldn't laugh I'd be crying... and I much prefer laughing. Thus some very interesting late night hysterics over the instant message with Loretta or phone calls that turn into all out fits of giggles. What can I say? It keeps me sane!

Kisses for Daddy

Sarah was there for "Rounds" with the Doctors this morning and basically not much has changed. They have decided to pull the Central Line from her chest (equal to the old Broviac) and place another one in the failed site in her right groin. The chest drainage tube appears to be blocked and they are planning to send someone from Radiology to manage that. While the blood clot seems to pretty much have disipated, there appears to be some air in the cavity. The doctors are working endlessly to attempt to sedate Ellie with meds and to juggle the medications with all their side effects and contraindications. They are still planning (hoping) for extubation Monday, sometime.
A heartfelt "thank you" to you all - Loretta

After a long night of movement and struggle with Ellie, John was awarded one precious "daddy" moment this morning. Ellie reached up and put her arms around John's neck, she pulled him close to her face, and tried to kiss him 3 little kisses, and then she mouthed the words "I love you".
[Dictated from Sarah]

No sleep for John, B or Ellie!

It has been a difficult night in the ICU. I still don't know all of the details. other than that it's been non-stop... but I'm going in.

"I know that my Redeemer lives!"

My daughter, the BORG...

For those of you who know nothing about Star Trek, pardon the reference, but for those of you who do... this will make total sense.

Ellie seems to be adapting somehow to the drugs - at least that's the only real explanation that is making sense right now because that little tiny girl will NOT BE SEDATED! Ellie is regularly, around the clock being hit with three heavy duty sedation drugs and she will still push up through the fog periodically to kick and fight, wiggle her nose (because of the tape under her nose holding down the tube that comes out of each nostril) and try to rip the tube out of her throat. It will take three adults to hold her down while the nurse administers MORE drugs just to stop her struggling. (This process, on average, takes an hour.) We were worried that one of the drugs was having an opposite, stimulating reaction, so Ellie is being weaned from that one slowly (apparently stopping cold turkey would be horrible). She is being given a new drug to see if it will throw her off for a while before she adapts to that. She is also being given something to help her deal with the withdrawals that will occur when she is extubated and taken off all of the sedation drugs.

And now tonight she has started back on two of the three antiobiotics that she spent 12 days on because she spiked a fever. All tubes as well as Ellie's blood are being checked for infection. If she spikes a fever tonight again they will remove her new central line (the one that was placed when her Broviac was removed - the one that caused all of the internal bleeding over a week ago). Basically, this is the exact same place where we were two weeks ago... hoping that the fever stays down and that she won't become septic... again.

John relieved Belinda and me tonight, with plans that after a short break Belinda would join him back at the hospital. We had only been in home for about half an hour when B got the call to hurry back - Ellie was in a full blown episode. I know that John is starting to feel as I did - that it is all just too terrible for words. There is something so sickening about having to hold your child down, all the while trying not to hurt her while she is so scared and confused - and nothing you do or say can really help at all. You tell yourself that it is what you have to do to keep her from hurting herself in a big way, but nothing makes it feel ok. And then once she is finally "asleep" you are afraid to touch her or even breathe on her for fear of her eyes opening up again. I have never been afraid to touch my own child... EVER... until now.

I'm sorry to give such a depressing sounding update. It has been difficult and frustrating at times. We have about 24 hours of this before they take her off of sedation and begin an anesthesia drug that can only be used short term, until they are ready to extubate on Monday. As always, it is so overwhelming to look at this as a whole and try to predict the coming days, but in the moment when we need it, the grace of God has been there... and will continue to be there. As I was finishing this entry, I received word from Loretta that it has taken 7 people holding her down plus an anesthesia drug to finally stop Ellie's fighting tonight... well I guess it's not tonight anymore - it's almost 1:30 a.m. Thank you all for your constant love and prayers - and please pray that tomorrow Ellie will have more peaceful rest. Thank you so much!

The day began at Midnight

Ellie had difficulty in the night with an out of control kicking, fighting episode around midnight that lasted about an hour and then another this morning at 7:00. Her platelets are down to 32 today so restraining her can cause bruising. John had “watch” last night and was relieved this AM by Sarah and Belinda. Pray for the doctors to have wisdom to know what to do to help Ellie and for Sarah and Belinda to have strength in the day. Thank you for surrounding us and for your faithfulness.

John's Gone Rogue...

... John has taken over the night shift. He sent Belinda home and hung up on Loretta. (There are no cell phones allowed in the ICU and no one can call the land line after 10 p.m.) And I have been ordered to not report for duty until tomorrow morning. Ellie is completely sedated, FINALLY, and by all accounts all is well in the room. Loretta and B are completely at loose ends, but I am relishing my last taste of freedom... And so tonight we REST.

Here is a blessing for our tireless "team" they rest tonight:

Isaiah 58:10-12
"Feed the hungry, and help those in trouble. Then your light will shine out from the darkenss, and the darkenss around you will be as bright as noon. The Lord will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, llike an ever-flowing spring. Some of you will rebuild the deserted ruins of your cities. Then you will be known as a rebuilder of walls and a restorer of homes."

Life in the PICU

Well, the one thing that finally stopped my crying last night was being able to sort out my feelings on this blog. Thank you all for your comments and for the encouraging verses that you send. Sometimes the verses and songs that you write are ones that have already popped into our minds - I'd like to think because you are thinking and praying them already for us - and other times they are ones that we haven't thought of yet, and they speak so directly to our hearts. Your words of love and support go directly into our hearts in a way that soothes the wounds that are still so raw.

The word that we have right now on Ellie is that the doctor does not want to plan on extubating her until Monday. (We really trust and appreciate Dr. Howell, the attending physician.) This time will be used to try to figure out why Ellie is unable to breathe properly without the ventilator. I feel both relieved and panicked all at the same time. I dread watching Ellie exhaust herself by breathing so rapidly and having to wear the mask, but I also hate to see her lying there with a tube in her throat, unable to communicate.

The update from Loretta today is this:
“Her general state since the re-intubation on Wednesday night has been one best described as 'restless'. She was incredibly restless, fidgety, constantly attempting to 'assist' the doctors by removing the tubes in her mouth and nose. She pulls at the tape on her face and motions toward the tubes and lines below her waist. They have struggled to sedate her from Thursday in the early morning hours to this morning, Friday. It appears they are making some headway with the drug 'mix'. Ellie seems able to shrug her shoulders, turn herself over, pick up arms and legs despite an incredible attempt to sedate. This morning, a half hour into the use of a paralytic she turned her head from side to side and shrugged her shoulders. It is just totally amazing to see. They tried to re-seat her nasoduodenal (n.d.) tube – there have been multiple tries at this. (The n.d. tube will be used to feed her – she is currently on IV nutrition but it is much better for her own digestive system to do the work.) She is fighting the respirator less and seems to be breathing well, which seems to imply there is nothing wrong with her lungs. Her blood pressure is stabilizing, her respirations seem regular and her heart rate and oxygen saturation are good.

We were fearful last night that Ellie was going to go back into hallucinations again but thank God this did not happen. She seems to become incredibly active at night and she is amazingly lucid. She continues to struggle to communicate and in the night we developed a code for her to communicate when she wanted her mouth suctioned. She remembered it and has used it several times now.”

From Sarah again:
I will need to start making visits so that she knows I'm still here. We were hoping that she would be under sedation enough to not miss me... but it is not to be. I have had two long full nights of sleep and some good rest during the day, so I do feel much better. And knowing that your love and prayers continually go before me, makes me know that I am upheld by the Everlasting Arms.

John and Belinda stayed with Ellie through the night. John was able to sleep some at the hospital and now Belinda is home getting some sleep. I will head over there at some point. Thank you for holding John, Belinda and Loretta up in prayer as well.

John has still been so strong. He is in "fight mode" these days - he has not broken down this whole time. I know that his time is coming - because he is human, after all, and this will be his longest stint in the ICU - but for now God has given him extraordinary grace and strength. On this spontaneous trip to NY, John and his dad were able to sit down and make a plan for John's business (he has a lawn/landscape business in Florida). They decided to scale back his accounts to something that Stan can manage in John's absence so that he can stay in New York with Ellie and me. I feel profoundly relieved. I need him here so badly, now more than ever before. And even in this God is providing a way...

Belinda is wonderful to have on board. After months of being able to do nothing but watch from the sidelines, she is raring to go. Her experience as an EMT and her physical strength have been invaluable in knowing how to move Ellie around as well as maniuplating things like tubes and masks (both very difficult things for me). The fact that she is already known and loved by Ellie allows B to help in the calming and talking aspects of her care.

Loretta is ALWAYS ON. I don't know when or how she sleeps, or how she keeps going other than that your prayers must be sustaining her. For this entire past 7 months, Loretta has been the one constant factor in Ellie's care. She keeps all the records, and is the communcation and research hub, but more than that, she provides continuity between care-givers. Because she is on with whoever is actually in the room, and because she always knows my thoughts and wishes in any given situation, she has become the constant thread that is woven throughout the process. By keeping and processing all of the information, and by knowing both John and me the way that she does, not to mention the vast wealth of medical and psychological knowledge that she has, Loretta has been able to see the whole picture in a way that we are often unable to do. Her input and observations are invaluable! I would ask that you keep her in constant prayer in the same way that you do for me. If she breaks down, then my world will unravel... not to mention Ellie's.

We will continue to get word out as things unfold. There are no words that can adequately thank you all for your tender love and faithful prayers for our whole family and "team".

From Sarah

My precious family and friends:

Your love and prayers have sustained and upheld me in the longest hours and days I have ever lived! I finally sat down at the computer and read the updates and comments. As Loretta said, she has read some of your thoughts to me over the phone... often while I cried. I don't know if there are adequate words in the English language to describe to you the unbearable pain I have felt, and even now feel along with the sweet comfort and strength of our loving God. Even as I type, I cannot stop the tears from flowing. I was able to sleep for many long hours last night, and then stayed in bed reading for the rest of the day in an attempt to block out the images in my head and the thoughts of what Ellie is going through several blocks away from me. John's aunt Belinda (a fire fighter from Florida) flew in just after Melanie left to help us care for Ellie. John and "B" are taking turns with Ellie - with Loretta ever present on the phone, while I rest. They have made me feel completely at ease to be able to take all the time that I need, and quite honestly I don't know when I will be able to face going back into that room. Of course, I will go - but for now I rest knowing that Ellie is in capable and loving hands... and that in my present state I will be no help at all to my little girl. The time is coming when she will need me again, and I will be there.

Mom, Stan, Pat and Ginger are all back in Florida now. It was wonderful to have them all here, and while Ginger spent quite a bit of the time helping with the phone and record keeping in the room, the grandparents had to spend a lot of time just waiting. They would take turns coming in to see Ellie in her peaceful moments, but I was unable to bear the thought of them spending the kind of time in the room that we were. I was sorry enough for what Ginger had to see. I feel that their burden of all that they were feeling in loving Ellie the way that they do was enough to bear. (And to be quite honest, on the selfish side, I would have been unable to stay in a strong place during some of the "episodes" if I had to look up and see the pain in my heart mirrored on their faces.) While Melanie was here, we were able to leave Ellie in her care a couple of times and spend time all together over a meal. It was wonderful just to tell stories, catch each other up on details, and just laugh. And once I was able to take them on a tour of Sloan Kettering and have them meet some of the special people there.

Some of the days and nights have started blurring together, so I'm glad that you have been receiving updates along the way. I have memories of the past days that are both horrible and sweet. I spent many hours leaned over the bed at not quite a 45 degree angle, and even in that, God provided the strength when I needed it. I would often find out later that I had been in that position for 2-3 hours at a time. There were many times when Ellie was bent on communicating something to me and it would take a full inspection of her body only to find out that she wanted to turn on one side. Sometimes she would get so frustrated, that she'd start to cry. In the scariest and most upsetting moments, she was completely out of her mind - even to the point of pushing John or me away from her in fear - and once it took three grown women (the nurse, Ginger and me) to hold her down to keep her from ripping the tube out of her throat. Another time she was convinced that there were spiders everywhere. Sometimes she was calm and smiling - and she even made a joke. I came in the room to find her smiling at John, but when she saw me she put out her bottom lip. When I recognized it as her "egg custard face" (inside joke) she grinned - as best she could with a tube taped to the side of her mouth. During one of the most difficult times when I was trying to calm her down, I quoted her favorite Scripture verse: "God has not given us a spirit of fear, but of love, power, and a sound mind." I could see her lips moving as she tried to say it along with me. As she started becoming more frantic (I believe this was when she was seeing spiders) I repeated it probably 20 or more times in a row along with assuring her that what she was seeing wasn't real and that I would not allow that to happen to her. Yesterday, around the time when she was able to frame the words "I can't do this anymore" (after breathing at a rate of 50-80 respirations per minute for over 24 hours) I assured her that Jesus was with her every step of the way, and that he had been through suffering just like her. I prayed with her and made sure that she knew that He would not let her go. The hardest part for me has been staying almost exclusively in the mode where I can't allow her suffering sink in to the point of rendering me useless to her, so that I can get in her face and talk her down from the panic, fear, and pain - or inspire her to think, work and remain calm. The night before last I was completely spent. I realized that God had given me super-human strength and endurance, but in that moment it was just gone. I knew that God had not failed me, but that He had provided fresh strength in the form of Belinda. Even though I slept in the PICU that night, B was on duty and I could rest for a number of hours. That night I was awarded the one precious "mommy" moment of the whole experience. Ellie asked for me to be "with" her, so with the help of B and the nurse, I carefully dodged all of the tubes and wires and climbed into bed next to Ellie. While she rapidly breathed into the sealed "bi-pap" mask, I snuggled her as close as the tubes would allow. And for two precious hours I was just able to be Mommy. And in between spells of sitting up to cough, Ellie slept while her breathing began to slow. I slept some as well, but not before I looked up to see tears streaming down Belinda's face while she talked on the phone to Ellie's "Lala" (Loretta).

Where, may you ask were the drugs? Well, that has been the most difficult and complicated part of the whole process. (Not to mention another source of my exhaustion.) The delicate balance of keeping Ellie sedated enough and keeping her body going towards the goal of extubation (twice) was extremely tricky. Often while rather heavily sedated, Ellie would still manage to try her best to communicate. We were in constant communication with the medical personnel to determine what Ellie's mind, emotions, and body could take. My wish, as Ellie's mother, for her to remain comfortable is only superseded by my desire for her to remain alive! (As it has been for this entire 7 months.) Once she was no longer on the ventilator, she was not allowed to be too heavily sedated so that she could still breathe properly. (But there were still some meds on board to keep the pain from her chest tube at bay and keep her anxiety levels down.) There was also the problem of Ellie's blood pressure. While on the ventilator, during which time it is best to remain sedated, her BP was too low, and sedation drugs made it lower. Once off the ventilator, during which time she was not to be sedated, her BP went too high... and so it goes.

As I told you in an earlier entry, God has enabled me to be bold when I need to. It is still a rather foreign feeling to me, and has been dubbed as my “warrior mom” mode by Melanie. I’m still not really sure that it qualifies as bold to most people’s standards because John thinks it’s “cute” and no-one seems intimidated by it at all. I was telling Ginger that in my mind I have horns, and fangs, and even a sword… but she said that it’s true, but they’re pink and sparkly. Oh well, so much for the intimidation factor!

I have been thinking a lot about all of your prayers for us, and I know that the temptation must be there to wonder why He doesn't just step in and make it all better. I don't have a crystal clear answer to that - even for my own heart - other than to say that we have seen, heard and felt the results of your prayers in ways too numerous to count. I have had a very real impression from the beginning of this (Ellie's cancer) that God intends to use Ellie's life for His glory, and when all else is stripped away - that is the only thing in this life of ours that really matters, and it is the only real dream that I have for my children. I have known from the very start that this journey would be about suffering... no matter what the end result will be. With all the strength of a mother's love, I don't want my little girl to suffer - but with just as much certainty I know that this life is not the end. I know that unbelievable glory and joy will be Ellie's when she reaches the arms of her Savior whether that comes when she is 8 years old or 108. It is this knowledge that sometimes tears me up inside... when watching her suffer becomes too much to bear. When Ellie was re-intubated last night and we came back into the room to see her lying on the table paralyzed and unconscious, I must confess that I just wanted it to all end for her. I carefully applied Ellie's special ointment to her parched lips and any other visible wounds. I placed pillows under her knees, and made sure that "procedure bunny" was in her hand. I made sure that her skin was covered with a sheet just in case she was cold. I whispered in her ear that she had done well and worked so hard, that now she could rest, and that I love her. And then I walked away knowing that I had done my best and given my all to prepare her emotionally, mentally, physically, and spiritually for life or for death. I wondered if somehow God might answer her prayer and take her home in her sleep. And then I cried because I don't want to lose her.

My sweet girl made it through the night, with her daddy watching over her. Belinda and John are taking the night shift together and hopefully John can sleep some, since he has gone all night and all day with only a short power nap. I have spent the better part of the day crying... Even in this state I can see that God's grace is still enough. And that the greatest gift that He has given me to get through this situation was to send His son to this earth in the form of a man... and that He cried and was hungry... He felt loss and He suffered... that He KNOWS in the fullest sense of knowing how I feel, how John feels, and most importantly, how Ellie feels. As if saving my soul wasn't enough, He even cares for my earthly state and put Himself in my place as a vulnerable human being and willingly suffered and now identifies with my pain. He holds me while I weep... all the while whispering that He KNOWS. And with every fiber of my being I hope that in the shadowy places of Ellie's drugged mind right now, she can hear Him whisper the same... "I am here, and I KNOW."

As you pray for us, please picture us this way... and know that as we encircle our little Ellie, we can feel your arms around us continually.

About Sarah . . .

Sarah asked me to please post about how she is doing. What has been happening for her on the “blog” has been an incredible source of strength and release for her. She is so committed to keeping it current out of appreciation for those who follow so faithfully and pray so fervently for Ellie and our families.

As a group, “Team Ellie”, we have often used a military analogy to both seriously encourage one another and provide an endless opportunity for levity. This morning, while circumstanes are incredibly serious, we still each found there was grace enough to laugh amidst the tears. On the serious side, we would like to share the metaphor that fits for us today to give a little insight into our Sarah. She has been our finest “Surgeon” on the front line – attending to Ellie as no one else could. She has the ability to read Ellie when no one else can and tends to her spirit with words and song like NO ONE else. She tried to shower yesterday and 30 minutes hadn’t passed that we had to call her back to Ellie’s side to speak and calm her. We have collectively decided that she needs to be recalled from the ‘Front’ – as the circumstances of Ellie being in a drug induced coma presents this opportunity. So she is in her own Intensive Care Unit – a time of quiet, no phone calls, no beeping alarms, no vision of the look in her daughter’s eyes. She will take some time to be stitched up with the Words of Truth, soothed with a Peace that surpasses understanding, and cared for in the arms of the Great Physician.

We are shifting the Team around and John will stand duty in the daytime now. He is ever so watchful and gentle in spirit as he stands guard over his most beloved Ellie. John is excellent at watching out for Ellie in the overwhelming world of “telemetry” in a Pediatric ICU. Belinda, his firefighter, EMT aunt, has joined the Team – called into Service out of Reserve Status. She and Sarah will now take turns doing the night watch.

Ellie was taken for her CT Scan of the Head early this afternoon and was back in the room at 2:45. She is mostly resting quietly it seems, however, they are still struggling to lower her blood pressure. We are awaiting results and will keep you posted. Thank you all for your continued prays and words of encouragement.

Loretta

Epic Battle...

I am talking to John this morning, he stayed the night with Ellie. We were trying to find an adjective to describe the struggle that they have been going through, especially our little Ellie and our precious Sarah. John said it reminded him of an "epic battle". We are trying to let Sarah sleep - she has had so little over the past 7 days.

Just briefly said, they have placed Ellie into a drug induced coma. She is on the ventilator again, for the third time. It is hard to tell her state. She showed signs of "fighting" the ventilator again, as she did the first two times. We just hope and pray that there will be some peace in her mind through this sedation and drug induced paralysis.

So far today, the doctors have not done Rounds, but John reports they are planning a CT Scan of the head and an endoscopic look into the lungs. There appeared to be some bleeding issues last night just before she was intubated - i.e. she vomitted a little blood and they suctioned some blood from her lungs. We are confident the doctors are doing everything they know to do to try to help Ellie. It appears they are on a search for the cause of her high blood pressures and excessively high breathing rate.

We will try to keep you posted as best we can today. "Thank you" seems like such an inadequate thing to say for all the concern and kindness coming our way and especially for all the prayers being lifted to Heaven on Ellie's behalf. I can tell you it is a heart felt feeling from all of us.

Loretta

Please continue to fervently pray for Ellie. In the last few hours she has gone back into a critical state. The doctors are attempting to re-intubate her now.

Loretta

24 Hour Mark

We have made it past the 24 hour mark for keeping Ellie extubated! She is working unbelievably hard. Some things are beginning to stabilize, other things go up and down, and other things aren’t moving to where they need to be yet. Overall, doctors seem encouraged by Ellie’s progress so far.

Sarah is going to try to get some time on-line tonight and hopefully will be able to update further. [Loretta]

We Hope for Better . . .

The long night ran over into a long morning. Ellie continued to experience hallucinations on and off during the night until around 6 AM. We hope and pray they will not start again with the onset of evening.

Meds were stopped at 8:00 this morning. They did trials on the ventilator to see if Ellie could breathe on her own and she did well. The breathing tube was removed around 12:30 this afternoon. It has been non-stop since that time trying to keep everything balanced that is needed for Ellie to remain free of another intubation experience. The adjustments have been difficult for Ellie, and once again she works with all her might to hold her own. Her voice is hoarse and raspy and difficult to use – the doctors say that the intubation tube irritated the vocal cords and there is quit a bit of inflammation. So Sarah is still doing the dance of language translation and Ellie the dance of expression without words.

There is a machine called BiPAP (Bilevel Positive Airway Pressure) that gives every breath that Ellie takes an extra push. Unfortuantley, it has to be strapped securely to Ellie’s head and face creating a seal over her mouth and nose. This is not comfortable for our little “warrior girl” – but she is hanging in there believing us that this too will end. There has been nausea and some vomiting throughout the afternoon, compounding the situation. They do frequent chest x-rays to monitor her lungs and an air pocket was found in the right pleural cavity. This had to be removed (decompressed) through the drain tube in her chest and now will continue to be monitored. It is very hard to maintain a tight seal to an open wound in the chest area – an air leak is always a risk.

Many more critical signs and information are being monitored non-stop to insure that Ellie is successful in breathing for herself. There are numerous procedures to be done by Ellie with the the medical staff and her loving support team in order to maintain all the necessary balances. Her doctor came in early this evening and stated that the first 12 to 24 hours are the most critical for keeping extubation. She said if we get through the night, that is good, and each hour the further out we go, that is BETTER.

I (Loretta) was able to grab moments with Sarah throughout the day to share some of the enouragement and scriptures being sent for Ellie and her family. She again says thank you for your loving support and continued prayers.

Tuesday, April 3rd

It is 4:30 in the morning, east coast time, Ellie seems to be getting physically stronger, however, an unusual twist has taken hold. She appears to be experiencing ICU psychosis. The doctors are working to get her through this – sometimes it just resolves on it’s on. She desperately needs some undisturbed, restful sleep to counter this experience. It has taken John and Sarah and the family to a new level of distress. Please pray for their strength to make it through this night and this next morning. The plan this morning is to stop all meds and once again proceed with the extubation of the breathing tube in Ellie. Yesterday, doctors atttempted to place another tube through Ellie’s nose into her instestines to facilitate better nutritional care. It has taken several attempts and it is still not positioned correctly. They administered some medication to hopefully help the tube seat itself properly in her body. Thank you all for your faithfulness through this experience with us.

Extubation Attempted

It's one in the morning and this is Loretta attempting to recap the information from this long day (now yesterday) for Sarah. She has been in the PICU all day with Ellie and is with Melanie there tonight. She has no access to the computer.

It was a complex and turbulunt day for all. The day began with the plan to extubate Ellie and then the decision fluxuated throughout the day with low blood pressures, deep sedations, and elevated temperatures. In the morning, we had fluid in one lung and the plan was to work to help Ellie be free of this before she was extubated. It was touch and go most of the day. Finally it was determined that her lungs were clear and the breathing tube could be removed. This happened around 7:30 PM, and for an hour family and medical staff talked and worked with Ellie to help clear her air ways – to cough and adjust to the tube being gone. Ellie worked like a champion – cooperating with multiple requests. In one short hour, after the application of the CPAP mask, the effort failed and Ellie had to be reintubated. We are moving into the night working to balance her blood pressures again (now they are high) and investigating a rising fever.

Sarah & John once again faced incredible challenges and decisions and worked to gird themselves up as they watched Ellie go through all this. Sarah states that the grace of God once again took over for them in so many ways. She said that in all the hard areas there was grace all the way to the end of the day – even for John whose day exceeded 25 hours. Again, she says we can feel all the prays that are keeping us going beyond what we could have imagined. So much so, that today was like yesterday in this regard, except even more so.