Heading Home

Posted by Rebecca

Sylva was given the go-ahead to come home on Monday!  We were really excited and it was lots of fun to see just how excited Sylva was about the whole process.  Lots of perscriptions and a few final consults later we were finally off sometime in the evening.  Handling all the night checks and rx's during the night was a reality check for me and I am feeling like there's an infant in the house all over again.  Most of the week was spent trying to rest and now it seems like Sylva is in better health than all the rest of us ;-)

Later in the week the first followup visit was scheduled.  Her assessment was great overall however many new cautions are now a part of her life.  When life-saving measures are taken there are sometimes consequences and in Sylva's case there will be a number of changes in her healthcare.  We feel like we are very close to seeing the girl we know but that is on the outside and her organs have a lot left to deal with.  Over the next 3 months our main focus is to be strengthening her as much as possible for the coming flu season - so since Physical Therapy is still being set up at home we decided to get Sylva some of her own PT - "Park Therapy"

Back at PCMC????

Friday we were surprised to find ourselves back at PCMC, this time in the ER. One of Sylva's chest tube sites has been having some trouble healing for some time and it turns out that she needed to be checked there as a matter of hospital/physician protocol.  Sylva got a kick out of having her own room again and was busy playing jokes and trying to tickle anyone who needed to touch her. 

Even though we were in a completely different area of the hospital we still ran into 4 of our new friends in the short time we were there.  It was nice to hear good news from them in their challenges. This reminds me of some of the words shared with us shortly after Sylva was life-flighted to PCMC:  "Didn't meet any you want to trade with did you?......"

Spending time at a children's medical center will likely leave you with some thoughts that may just change your life.  No matter what weight you find on your own shoulders it won't take long before you discover others who are leading the most extraordinary lives as they carry their own incomprehensible burdens.  Perspectives can't remain static for long in a place like this.   We have been blessed to have some amazing new friends and acquaintances and I stand in awe of each of them.  One incredible woman shared with me what was said to her many years ago when she was at the beginning of her now 20+ year experience in caring for her remarkable daughter.  I don't think I have heard it said better so I can't help but pass it along: upon returning home from one of her early stays there a friend remarked to her, "So you've been to Primary Children's and met other families/patients, I don't suppose you've met any you'd rather trade with?"   Nothing feels as real as your own problems when you're face-to-face in the depth of them yet somehow the proximity of another's true drama has the ability to not only shake things down to what really matters but also put strength back into your bones and let you know you can do it -- and by the way, get going already!! I really don't know how it all works but there is so much strength and courage passed back and forth in these moments of connecting. 

The extra mile

So we decided to tally up how many people have worked directly with Sylva while admitted to the hospital.  Our best guesstimate is 80+ in each category of nurses, techs and RT's.  Then of course are the docs, residents, hospitalists, attendants, etc.  Maybe 320?  WOW!  And that's not considering the PT/OT's, musical therapy, alternative medicine, social workers and volunteers that have also been directly involved.  This is an impressive group of people and among them are those who really stand out, doing their job with such skill and care that we feel so glad we have them looking out for us!  At one point I thought about listing some of the things that have been done and the instrumental people behind them but now there is just too many and I am sure as soon as I posted this I would continue to recall more and more or inadvertently leave someone out.  Sylva really has been the recipient of great care - she has been cared for on both ends of the spectrum - from being sung to sleep to being tenderly talked and helped through painful and scary procedures to being resuscitated and nearly everything in between.  Plenty of tense moments but almost as many times of feeling that an expert has got your back.  Not being medically trained/educated I can't say I know clearly what is or isn't in someones job description but I can say that we surely know how it feels to be cared for by someone who really cares about not just the performance of the procedure but more importantly the morale and dignity of the person.  Knowing that we have been cared for by so many we are not likely to see again if all goes well makes it tempting to ask: "Can you come home with me??? PLEASE???"

Bitter-Sweet reunions

How delightful it was to run into old friends from Tahoe!!!  But then....wait - "what brings you here?"  as you hold your breath listening to hear the answer.  It is great to catch up but its not like we bumped into each other at Disneyland.  Three different families from our past crossed our path while staying in the hospital and as we have had the opportunity to reconnect a bit and heard of their experiences and cause for being there it brings so many emotions: sadness and concern for their trials, admiration for their strength and unfailing courage, delight to know a familiar and trusted friend really 'gets' what you are going through, and gratitude for one more tender mercy of a known friend in a great place to be if you're a body in trouble.


Surprises or Miracles

Posted by Rebecca

I can't count how many times I've told someone attending to Sylva that she 'doesn't play by the rules' or that 'she has her own game plan'. She IS full of surprises. Since birth she has had one consistency and that is her inconsistency: labs, x-rays and clinical exams don't seem to have a nice predictable correlation. This carries into nearly all areas of her life. Today, for her, doesn't usually give clear clues about tomorrow. Regardless of me being the one who tells others of this feature, I need to say how AMAZED and SURPRISED I am!!! As I have said earlier - pretty much everyone who has had a chance to assess her changes has expressed that she has very much surprised them. To some extent that is exactly what I would have expected. YET the things that have occurred and her progress is so beyond anything we could have ever imagined!!! It really doesn't and could never add up from our limited understanding. But beyond that we (and especially I) need everyone to know that whether or not it is ever understood or comprehended, we KNOW that Sylva and we have been the recipients of great help in response to fasting and many prayer's on her behalf. How can we ever express enough gratitude!

We have been enjoying hearing Sylva's voice. Her vocal chords are still sore and not yet back to normal after being intubated. She sounds quite gruff but also like people sound when they have been playing with helium - kind of a weird mix and I think she is getting a kick out of it when she does decide to talk. She has at times favored us with a few musical numbers now better suited to her new voice. She is also gaining more strength and stability daily. She cannot yet stand or walk and crawling is pretty difficult and tiring. She has been using a 'shopping cart' in physical therapy to help her balance and support her weight. Her teasing nature is coming back and she's making up for lost time as she has now come up with different jokes or pranks for just about everyone.

The last few days have been a bit intense for different reasons than before. After some very rapid and consistent improvement which included these changes as well as removal of another IV and the feeding tube, and the addition of more therapies, we were trying to put everything in place to be able to finally go home.

I had felt that in many ways she had exceeded the parameters previously set on going home yet with her rapid improvement the doctors thought that it was just too soon to tell. We had been doing everything we could think of to get an exit plan in place including some packing and followup appointments/arrangements made. But as we have said before - Sylva is full of surprises! Tuesday was the day we were aiming for - then Sunday became part of the discussion. Saturday a.m. we were so surprised after their second look at her to hear that they had moved it up yet again and she could go home that day!!! While I was busy trying to get things in place as far as medical equipment and such I received the news that she had spiked a high fever and that changed everything. Immediately a number of tests were ordered and more meds given. She had been weaning off some of the meds but a high fever would not likely be caused by this. What a shock to have all these changes in just a few quick moments!

We are finding that even good news comes with its own stress load - it's like you feel that some ground has been gained and now you are ever more compelled to defend that ground fiercely but you can't really claim it as your own because in just a moment and without or despite any input from you it can be long gone. The whole scene can change instantly. Someone once told me Sylva had been sent to me to teach me to 'lighten up' ;-) Well that certainly includes letting go of expectations and there's still a long way to go.....

I found out that my prior assumptions of full medical coverage were a little naive. It turns out that one or more of her meds is very unlikely to initially be approved by insurance. Since she will be going home with a number of meds as well as a wheel chair and o2 there will be a number of changes. Her cardiologist has explained that she has lost about 1/3 of her total lung capacity and having Downs Syndrome she didn't have the normal amount to begin with. She has severe pulmonary hypertension that will need to be watched closely to avoid heart failure in the future. The preferred rx, considered to be vital to her recovery, is also the one likely to cause the most red-tape issues so letters have already been prepared to help this process along. We feel confident that this will work out.

Today Sylva was really excited when they lifted the restriction on her going out and she was able to "go to primary". There is an LDS branch at PCMC that holds a Sacrament Meeting in the auditorium and also brings a Primary lesson to kids & siblings that are able to receive them. Last week she had a great time with the primary sisters that came to sing to her. I think they surprised her when they agreed to sing more than the usual primary songs (There may have been some Celine Dion and Sugarland in there too - some of Sylva's other favorites ;-) Today she was able to listen and sing out in the hall while they finished the meeting and then they came and gave her a lesson & stories too.

This has been an incredible week and looking at her now it is difficult to believe she is the same girl she was just 1 week ago!


Angels all around you... including behind the scenes

Posted by Rebecca

THANK YOU!!!! It is so challenging and complex to uproot your family and change the focus of each and every moment of the day for days on end and still remain somewhat normal (or sane!) There really is little sense of control if any at all as medical needs and physical changes call every shot - no such thing as planning ahead. Because of some very creative and thoughtful people we have been able to still feel like we are keeping our wits about us. Snacks, puzzles, books and games; transportation, messaging, computing and lodging help; and especially time! time to 'be there', 'sit close' 'watch on' 'drive to' 'give a hug' or just talk.

When Sylva first became ill she was given a special blessing promising that there would be angels from both sides attending her. At this time no one could have possibly guessed what was yet to come. Later, with things continuing to develop and change, and in the midst of many surprises, she received additional blessings and with one exception they were all by people with various different takes on the situation. Nevertheless I began to feel that each blessing was a repeat, nearly verbatim, of the first as certain phrases were said each time. One which I've shared above told us again and again of the angels that would be there for her. This has been the case in more ways than I could have ever imagined! So for those of you who've carried your wings incognito - we know who you are ;-) You're the BEST!!!!!


Today's Update

Hello everyone,
This is Cyndi, Sylva's sister. I have today's update.
Yesterday my parents were told that today Sylva would be able to head home. However, she's taken a step backward and is now very sick with a fever, apparently her body is fighting something. This is very frustrating considering the wonderful progress she has made recently.
Please pray for Sylva and the doctors assisting her.


So happy to be so BUSY ;-)

Wow! What a day!
We started out with consults with the PICU docs and dietician, removal of the PIC line and placement of a new IV, treatment from the alternative medicine representative, and visits from the Allreds. Then it was plans to move to the children's medical unit, and before long we found ourselves running from one thing to another - and Sylva didn't mind the rush a bit. It was like she was making up for lost time. Not really wanting to use her voice and having some really sore vocal chords from the ET tube, she has resorted to much signing, and so taking off in the elevator for a new room had her with an ear-to-ear smile and her hands busy signing 'excited!'

Nearly the moment we arrived we had more visitors from numerous members of the hospital staff and the Rainbow Kids representatives and then it was time for her first wheel chair ride and trip to do Physical Therapy.

Sylva was pretty happy just going along for the ride but truly delighted to be able to attempt to climb some stairs. She has really atrophied from the paralytic drugs and so much time in bed and in the last week as she has even tried to write on a paper she has been so discouraged when she realized her weakness and limitations that she readily gave up. Today was a different story - her legs buckled on the first step and pretty much failed after that but she was absolutely determined so she crawled with help like a baby to the top and boy was she proud of that effort! After playing for a while with various toys she spied a padded surface with a wall mirror and must have thought its purpose was for gymnastics so she persuaded the Physical Therapist to put her there and proceeded to attempt a head stand followed by a back bend. She had no strength to do either and the therapist seemed surprised that she'd even try (telling us that this was outside of her training) but Sylva was smiling the whole time and seemed undaunted by her weakness. It will be interesting to see if she has the courage to try again.

Next she was off to do a new ECCO to determine the extent of her pulmonary hypertension which is usually not her favorite but she did a good job. We are still waiting to hear the results as they will make a major difference in the days to come as to what medical treatments she needs.

No sooner had she returned to the room but what she reminded us that we had been promising her a time to play the grand piano and visit the play room so we were off again with her 2 brothers proud to push the wheel chair and handle the oxygen. Jess played some of her favorites and Sylva assisted enthusiastically and then she made some new friends playing in the courtyard.

Two more doctors consults on the way back to the room (they find you anywhere you are ;-) and she was back to the room. By this time Grandma had arrived and she was enlisted by Sylva to proofread the shopping list she was busy preparing for Mom's trip to the store. This being the first time she can really eat through her mouth since being transferred to PCMC and being given the go-ahead for just about anything she'd like, the list was rapidly and matter-of-factly produced. Sylva really is making up for lost time!!!

We are just amazed at how well she is doing and this is being echoed by those who have worked so hard to get her through this. No one really could have predicted an improvement as rapid as this! People are telling us "she is so strong" "she is such a fighter" and how surprised they are. It is tempting to attribute her improvements to her strong will as she certainly IS a strong fighter yet we also clearly know that her strength has been a gift as she has been sustained by the many many prayers in her behalf. For those who have followed this challenge of the last weeks and the back and forth changes she has gone through it is hard to believe she is the same girl that she was even 1 week ago. Truly amazing!!!

A note to our readers:
At some point, I will try to put together a very short history of the main events and changes she has gone through. Each day is so full of impressionable events that you think you will never forget all the details yet by the next day there are so many new events that the focus is brought to the challenges and drama of that day. Add to this the lack of sleep and it all begins to seem like a strange dream where you can hardly believe all that has happened.


Major Improvements and Big Changes!

Well the past few days have been really wonderful for Sylva and the progress that she has made is fantastic!

Today Sylva is getting ready to finish up her time in the PICU!  Her progress has been miles ahead of what the doctors expected.  Each one has expressed great satisfaction and some surprise at her daily improvements.  Here's a brief summary:

Things that have changed this week

  1. removal of an arterial line and 3 iv's (still a pic line to go)
  2. removal of last 2 chest tubes & 1 feeding tube
  3. weaning off 6 different meds (or more - we have lost count)
  4. discontinuing of the paralytic drugs
  5. music therapy
  6. and the beginning of light liquid foods. 

Physically Sylva is now awake most of the time and has been able to start using her body.  She started the week unable to even hold her head up and she looked like just a tiny version of herself.  She began physical therapy with just the tiniest moves but now she can sit up and do a few activities and when she is really motivated she can even wrestle against anyone who wants to do an uncomfortable procedure.

 As the week progressed and she had more and more strength as well as an increased awareness of all that was going on .  Sylva used her knowledge of sign language to let everyone know just what she was thinking.  Unfortunatly not all of the time are we as adept at reading sign as she is at signing.
When she was extubated she was anxious to begin speaking right away and we were looking forward to some improved communication however it didn't take long for her to realize how painful a throat could be after so long on an ET tube so we are back to signing again.  Occasionally she will attempt to speak and she has such a weak and different voice.  It is hard to tell if she is bothered by the new sound of her voice but like everything else in this adventure it will only be a matter of time before even her vocal chords change.  

Thursday was a day to catch up on REAL sleep. With all the meds and paralytics we are told that the normal sleep cycle is really thrown off and true restful sleep usually doesn't happen during this time so finally Sylva was able to have some dreams.  Her body has been working hard to throw off  all the effects of so many medications and one of the effecs is her very peel-y skin. 

Friday included lots of steady small improvements.  The goal was to get her Peep setting on the ventilator down to a 6 or even 5.  For a while she was able to hold a 6 but it may have been too soon and she was moved back up to 8.  She needed to get it down to 5 before she could be considered for extubation.  For the most part Sylva felt good and even decided to help the respiratory therapist by doing some of her own cpt. (chest physical therapy).

Saturday was a good day with lots of 'trials' of breathing with less and less aid from the ventilator.  Her color and demeanor were good in terms of healing and she spent most of the afternoon sleeping.  During the night they continued to do many breathing trials.

Sunday she was extubated around noon.  Even though we had been trying for days to stop her from removing the tube herself when it came time for the big event she was having second thoughts as the 'dreaded tape' would have to be removed from her face.  She thought she really liked her RT and was having a good rapport with him even to the point of joking but it wasn't long before she changed her mind - there was a lot of suctioning that needed to be done and it is much more uncomfortable without the ET tube.  Also she had an official negative result on her virus test and the hospital agreed to let her off the isolation restrictions!  The night started off with a struggle and lots of adjustments - there was concern about her needing to be re-intubated but as the night continued she began to do fabulous.

Monday was the fist day in  5 1/2 weeks that were able to hold Sylva!  She had a great day and it was also the first day since being at PCMC that she was able to eat real food.  She still has a feeding tube in but this day was a trial to see how well her GI tract would work after being intubated.  If all continues to go well the tube can come out soon. This will be very welcome because she has already had to have it replaced twice from her accidentally pulling it out of position.


A Great Day!

This has been a day with lots of simple improvements!  Sylva was able to successfully maintain her Peep level at an 11.  This has been after 3 days of abandoned attempts.  What an improvement!  She has also come down quite a bit on her level of nitric oxide, which I understand will be the next thing to focus on as they continue weaning her from the ventilator.

She also had some fun visits with Amanda at the PICU and Steve & Bri and Daniel and Cyndi & Anthony via skype. 

Jared made her a 'deal' that if she agreed not to pull out her tube he'd make her some purple 'silly puddy' - This was a clever attempt on his part to dissuade her from a growing desire to become tube-free and cordless again.  Earlier she wanted to see herself in the mirror and after just a quick assessment she decided to remove her feeding tube - she was awfully quick but luckily we were a bit quicker.  It's not that easy to replace because it goes much further than her stomach.  At any rate we can now reasonable dismiss the idea of brain damage as we witness her showing more and more of her personality each day and in this case it is quite fitting that she'd decide to take care of this matter all by herself ;-)

Sylva has been trying to communicate in any way she can and with her vocal cords out of commission she attempts to compensate by enunciating and exaggerating each word.  Unfortunately we're not proficient at reading lips and since her hands are carefully bound to keep them from handling her tubes signing is also ineffective!  Her frustration is mounting and so she has added facial expressions to the mix and we are beginning to see some familiar expressions. 

So how do you entertain a little girl who wants to color but her hands have been immobilized? We thought we would try feet, and Sylva was very enthused for about a moment.  Oh well, at least we tried!


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