First Time Again

After each of John's surgeries or serious illnesses we have watched him accumulate his previous skills again, this time however is different. This time there was so much worry that he wouldn't survive and then that he wouldn't have retained his mental capacities and even when we knew that both of those were no longer a worry there was the whole just how sick he had gotten and how weak it had made him. So now each thing that he reaquires is like seeing it the first time again, a reason for joy and excitement. Today was the first time that he was able to hold the Wii controller and play Mario Kart again, also the first time that he was able to use a hand rail and pull himself to his feet. He is still so very weak, but each day brings progress and joy and excitement and thankfulness to God both for preserving his life and mind and also for giving us these little blessings each day, it's like Christmas every day around here and we can't help but smile.

Bundled in Love

The PICU is so empty that the nurses and techs continue to be 'floated' here and it sure is nice to see them. There is nothing wrong with the floor nurses, but we spent so much time in the PICU that some of the staff from there feels as close as friends and family. One of the ones that we are the closest to was John's nurse yesterday and it gave me a chance to finally ask one of the questions that kept floating through my mind while John was so desperately sick and yet I couldn't choke the words out then. The question was what happens when one of the children die on the unit? While we were there one did and John came so close that I just had to know the answer to this question. If the child is too large to be carried they are bundled in a blanket and wheeled down to the morgue by the nurse who attended them at their death, if they are small enough to be carried then that nurse bundles them up in a blanket and carries them down in their arms. The nurse I was talking to told me that to her it is the last thing that she can do to care for the child and their family. I know that when Mark is taking care of a family and conducting a funeral he feels very much the same way. Child Life comes in to be with the siblings and to make hand prints of the deceased child for the family. The Chaplains who have spent time getting to know the families come in to sit with them and help them contact people and handle decisions and arrangements. Eventually the techs and cleaning people come to fix the now empty room so that another child can be cared for.

There is so much to mentally process from what has happened to John and to us since the 15th of November, both good stuff and bad stuff. I am so thankful that this processing is occurring with John recovering so well and warm and here and him and touchable and well alive. Long after we get to go outpatient, long after we even get to go home it is my hope that I will continue to remember to pray for these nurses and all the people who take care of others. It is truly a gift to know that these nurses and the rest of the medical staff are here, day in and day out, taking care of little kids who need them, even if the taking care means bundling their bodies into cuddly blankets and carrying them to be cared for so that someone like Mark can then step in and take care of the family who misses their child. No one wants to face death, but it is inevitable, most don't have to face the death of their child, but for those that do and those of us who have come so close so many times and yet are glad to hold ours the nurses and medical staff are a treasure. God bless them and God bless their families who care for and support them so that they can do this work of love.

Catching Up

I'm not sure I can do justice to the last 10 days or so that are missing from the updates, but let me tell you where John is right now. Tonight he is sleeping in a normal room, on a normal pediatrics floor, no longer in the PICU. He is on full g-tube feeds and hasn't had tpn or lipids running for several days. His kidneys and liver are continuing to improve. He is driving his own chair around and getting faster and stronger with it each day. He is starting to be able to bear a little bit of weight on his feet and is again sitting nice and stable without any support. His lungs have improved to the point that he is nearly done with respiratory therapy. His sense of humor is returning and he is more himself with each passing day. There are tons of people around here who are astounded, it's a miracle that John lived through all the things that his body has endured since the 15th of November and just as big or maybe even bigger is that his mind survived it too. He still has a chest tube in place and until it is no longer needed and pulled we cannot go out patient, once out patient he has to be here about 3 months without complications, shorter if things go well, longer if they don't. It is just barely starting to sink into Mark and I's head what life will be like without John being sick a lot, for tonight we are still caught up in what an amazing blessing it is to be able to hold our little boy and to look in his eyes and see him there. Thank you for your prayers and encouragement through this, we aren't done yet, but it's oh so much better and even better by the day and there are so many people who have made this bearable and kept us going, God bless each of you as you have each blessed us.

Facebook updates for January 16th & 17

This time together with Gina and John have had their own ups and downs, with shocks and fears as well as joys and accomplishments.

Sunday the 16th
7:30am Pain throughout the night that required 'big hurt' medicine either on time or early each time, fever and this morning's chest x-ray looks worse than yesterday. He is still on hi-flow but now at 60% oxygen instead of 40. Is it a virus, sepsis, pneumonia, and what is going on in the belly? Thank God it's Sunday and Mark is on his way as soon as church is over.

9:30am We will be headed to CatScan later this morning, they want a good look at his lungs, abdomen and pelvis to find out what's wrong. Thank God it's not like the last trip to CT but still the memories are ouch and Mark won't be here yet, but if I can get these idiotic tears to stop coming out of my eyes they will probably let me go in with him and not wait in the hallway alone.

1:30pm CatScan is done, we await the results but I got to be with him the whole time and he did great on both the trip to and from and in the CT itself. Thanks for your prayers, some of this is oh so much harder than I would have ever imagined and yet I am so blessed that on these hard hard days that the staff are kind and friendly, you all are amazingly supportive and Mark is now on his way.

7:30pm Mark is safely here, the world weighs a bit less and the night seems less dark! John's little bladder put out a liter of pee pee and go figure the kid doesn't hurt as much and he can breath easier. He will probably end up with a chest tube in the right side tomorrow and hopefully his need for hi-flow will come to an end soon.

8pm I wrote: There is nothing better in the whole world than to bring my dear wife good brisket and get her some orange juice cake, except maybe to see and hold the hand of my indomitable son and stay by his side.

Monday the 17th
12:30pm Hi-flow oxygen machine is being evicted as John no longer needs it and he's down to just 1 1/2 liters of oxygen from the wall. He doesn't need a second chest tube so far and also another day without dialysis and feeds are going to be started again today. John is cuddled up on Mark's lap still dealing with some pain but oh so much better!

6:30pm Room air :)

7pm Well ok, let me revise that, room air while he is laying in bed, when he is sitting in the wheelchair working so hard that he is exhausting himself, we voted better to need a little oxygen and have another muscle workout than to not need it and lay in bed.

9:30pm And now there's blood. Nose bleed a bit earlier from all the suctioning and such most likely and this is probably just stemming from that but we wait for labs. But prior to this John felt good enough to open a few gifts and while he doesn't yet have the energy for them let me just say that nerf guns rock!

10pm Labs are in, hemoglobin is 12.5 and so we are going to watch for a while longer but soon I think Dr Mercer's line 'ah, it's just blood, nothing to get worked up over' will be invoked and we will be back to business as usual!

This morning has shown some ups and downs ahead as they are trying to manage John's fluid status and kidney numbers. He keeps shifting fluid to the area around his lungs even as the rest of him is acting like he's dry. His kidney numbers are therefore out of whack and the question becomes does he need dialysis, which means a small surgery to place a new dialysis catheter, or does he need more fluid in to keep fluid moving through the kidneys, which could make his breathing issues worse.

Playing Catch-Up January 5th Through 15th

There have been many days since the last updates. John continues on the tightrope, for some points it seems that the stable land is so close, yet we are reminded that even while John has made progress there is still a long way to go.

January 7
5:30p All tuckered out and napping after nearly an hour sitting in his chair, the first smiles since surgery, sticking his tongue out and cracking himself up, tube feeds are running and the Wii he wanted is hooked up waiting on him to wake up :)

January 8
10:30a A quiet morning with a little boy who was amused when the RT got her head stuck in his birthday streamers, has his feeds advanced to 10 because they are going well and is now napping again. Can't wait to put him in his chair later, for now there is yarn to knit.

Friends posted about prayers and knitting, including my Dad about preparing to celebrate John's birthday.

8:30p Thanks for the prayers and no Papa, no streamer knitting but I did get a scarf done, now to pick out another project. John's day went well, lots of resting and finally he needed to FaceTime his dad so that he could stick his tongue out at him a few times. I can't wait to see them together tomorrow night :)

January 9
7:30a Blessed Lord's day. John's night was more settled than the last one with more sleep. It seems that something is out of sorts in his belly so we wait to know what is going on with that. In the meanwhile we are excited that Mark is coming today and remembering the blessings of our baptisms.

1:30p For the moment feeds are turned off and we are starting the search for what is wrong with an abdominal x-ray, not sure where we will end up but I'm so thankful that John is so stable otherwise, liver numbers are getting better, kidney numbers are worsening at a slower rate each time and John is still weak and tired but as opinionated as ever and we still get the occasional smile.

2:30p Abdominal x-ray shows some air in the intestines but not enough to look like an obstruction, so whatever is going on with John's belly won't likely end up with him in surgery today, maybe not at all.John's kidneys are not yet cleaning as well as they should, so his numbers worsen after dialysis each time, but this time while they are still worsening they are doing so at a slower rate.

9p Mark is here, safe and sound, let it snow! John is cuddled on his lap and somehow the world feels like it's cozier and more right with the 3 of us in the same room.

January 10
7:30a Amazing what some actual sleep will do for your head! It helps that John had a good night and while I'm not holding my breath I am encouraged that it looks like his belly is doing better and we are now past the 1 week mark on both extubation and the last unit of blood hanging.

2:30p And the good news continues: John is now stable enough that he doesn't need to be on the monitors during the day; he got to go for a ride in the wheelchair off the unit; Brandy, a nurse practitioner, explained that it can take time for these new intestines to work right and while it is slow going at first it will pick up; John's kidney numbers improved for the first time on their own and no dialysis today; they are going to ultrasound his neck to find a better place for the dialysis catheter should he continue to need it for a few more weeks; after they deal with this John should be able to be labeled step-down which keeps him on this unit but with less care and then should be able to be discharged from here, no timetable on that part but foreseeable from here should no major setbacks occur :)

10:30p We finished the evening with a little boy who had enough energy to enjoy a few Signing Times videos and try to sign along some, open some of his mail and give us big smiles as he looked at the pictures that had been drawn for him and the cards and snowflakes and such. It was great to see him excited about mail, one of his favorite things, and thanks to everyone who sent mail he has quite the pile to continue enjoying in the days to come. We are so very blessed to be getting our little boy back, to have such wonderful friends and family and to be in Christ who keeps us each day.

January 11
11a John is doing well, actually Dr Mercer told him to quit being a lazy bones and get out of bed and go play :) He did tell us that for every day in the PICU we should count on a week of recovery, so we should expect him to need a year before he is completely back to himself. Kidney numbers are improving and so we may not need to move the dialysis catheter, just have it removed tomorrow. And a big thank you to God for all the snow because Mark gets to stay until tomorrow morning, everyone stay safe and warm so we don't feel guilty ;)

Our friend asked if Dr. Mercer knew how ornery John is.

11:15a Oh yes, and actually you can see that he misses John being John.

1p I'm not always fond of labels but for today we will take the step-down label with joy!

4p Just got back from John's second walk (us walking and him in a regular wheelchair) for the day, the steps are tiny but each day we see improvement and rejoice.

11p It is so wonderful to look back over the day and think about funny stuff that John did instead of scary stuff that happened. Tonight I can't help but smile thinking of him smirking and snickering (silently as he still has no voice) at Mark and I as we were cleaning up a mess that got made in the most inefficient way possible, it's great to be laughed at!

January 13
10p Sorry about the lack of updates, yesterday was full of taking John for walks and such and today he's been confined to his room, on oxygen fighting fluid issues to breathe. I'm sleeping in John's room while Mark is away so end up napping a good bit of the day too. John's still on step-down but definitely proving why he needs to be right where he is.

January 14
11a Hoping that John won't need to be reintubated, praying that whatever is wrong will be found and able to be fixed.

1p Chest tube put in the left side, nearly 500 ml's of fluid pulled out and John is breathing better. Decision on intubation put off for at least a few hours and hopefully it won't be needed. John's chest x-ray does look better too, it's now just wait and see time. It's also not time that he needs dialysis but it is time that he really needs to pee off a bunch of fluid.

8:30p Shift change has come and gone and John is still on hi-flow oxygen but is not on the ventilator, he is coughing more and sleeping more comfortably than he was able to this morning. At least for the night it seems that intubation is not happening, hopefully through the night he will be able to rest and heal and tomorrow they will take away the tools that are laying on the counter to intubate him if necessary and move the ventilator that is sitting in the hall on stand-by back to where ever unneeded vents live. I asked the nurse today if it was common for these kids to be doing so well one day and close to be intubated the next, her reply was that for the first six months this is often the way it goes. Everything looks up and exciting one day and the next it's back to fear and worry. If you think it makes us sound a little schizo that we can be up one day and down the next, you're right, it feels a bit insane from the inside and truly the only thing holding us together is God's grace and mercy and all the wonderful friends and family that hold us so tightly, thanks!

January 15
11am John is still on the hi-flow oxygen but is breathing much easier and with much less support. His lab numbers look good, kidney numbers made a small improvement as did liver numbers and even his white count is down from yesterday. The vent and tools to implement it are still close at hand but the need for them is less even than last night. Lord have mercy!

11:30am Dr Botha is doing rounds today and my it is an interesting perspective to see John through his eyes, but then the last time he saw John he was intubated, bleeding out of his gut somewhere and needing blood pressure medicines to keep his blood pressure up and was so sensitive that we couldn't turn him on his side without alarms going off everywhere. To my eyes John looks better than yesterday by a long shot but still oh so much worse than several days ago and yet through Dr Botha's eyes he's looking oh so much better than even hoped. Seems like John's job for the day is to rest, heal and get up some in preparation for restarting feeds and my job is to be thankful.

9pm John's day was largely spent sleeping but before bed tonight he showed Mark and I that he could once again sit by himself. Charity and Adri came to visit today. The day nurse was one who in another situation would be a friend and the night nurse gave me the best gift I could have gotten this evening - the go ahead to do John's Meds and dressings and care for him more. As a mom one of the hardest things is how helpless I feel, at one point I needed two other people to help me get John out of bed because of all the tubes and how weak he was, as much as I feared intubation for the huge backward step it would be I feared both John being out of his mind on drugs again and not being able to care for him without a whole lot more help. Charity tells me I am in mommy mode and that's how I'm doing this, definitely, but mommy mode is so much easier to live in when there are things I can do aside from hold John's hand and sit quietly by watching others care for my boy because his needs are far beyond what I can do. Tonight John's respiratory status is still tenuous, but with room to go up on the hi-flow before intubation must be considered. The tools and vent are still sitting here close at hand in case they are needed. I am privileged to sleep in the chair by his side and to hold his hand through the dark waiting for one more sunrise to share, Lord have mercy.

Facebook updates for the 9th and 10th days of Christmas

The past couple days have been a joyful adventure as John improves and demonstrates that, while tired and weak from his 46 days of sedation and ventilation, he is still very much our little boy who went to surgery on the 15th of November waving bye and blowing kisses.

Monday
7am John is sating 97 on room air and woke enough to give us kisses when we came in :)

10am Mark sang 'So Long Fare Well' to the vent as it left :)
We did find out that John has a particularly plastic loving yeast growing in his urine and so today all plastic has to be changed or removed.

10pm The line change outs went well, John remained off the vent and spent most of the afternoon and evening cuddled up in a chair with his dad. Through the day we have seen more signing, counting with me this morning, choosing a blue blanket by color and telling us potty. The bleeding is being watched carefully and will be readdressed tomorrow. Good night and God bless you.

Tuesday
7pm Kisses in the morning, going potty on the potty, evidence that John's colon is fine hanging out in there waiting to be reconnected some day, sitting up in a chair with real clothes on waiting for friends and then a wheel chair ride with them, and now cuddling with dad with only green coming out where it should, God is merciful indeed.

As you can see once again there will not be much said when all is going well and John is on the path of healing and recovery, there is simply too much cuddling with and taking care of him that needs to be done. I will still be compiling and sharing updates, but do not fear and wonder if something bad is happening if there are no posts from me for a couple of days at a time.

Here is a picture of John and his friends. 6 little monkeys playing in the PICU.

A New Years Compilation of Facebook Updates

Happy New Year!!

We rejoice in the work of our Lord and Savior Jesus Christ on John's behalf both temporally and eternally. As we begin this new year and the new things that will happen for John I need to catch up on the past few days of updates.

Friday, New Years Eve started early for all of us.

3am Blood. Again. Lord have Mercy! So far slow and vitals are holding.

6am INR 5.9, that's the liver number we all watched when his liver was necrosed and we were praying it would regenerate, lately his INR has been 1.3 down to 1.1. What is causing this? We do not yet know, cultures are being sent because sepsis can do this. Lord have mercy, Christ have mercy, Lord have mercy.

9am I wrote: Rounds have happened and Dr. Mercer is confident that this bleeding and liver number issue can be managed with blood and blood products. He even agrees with the PICU doctor that it's time to get him off the ventilator. The fears and worries remain though they are much diminished thanks to good info and the calm confident tone of the doctors. Thanks to technology I was able to overhear Dr. Mercer and ask if I needed to hurry back. He said that this wasn't a 'doom and gloom' situation. Thanks be to God who answers prayers.

Noon John was off the vent for an hour and is now back on. His little throat swelled up and is red and sore and so they are going to give him steroids for a few days and then look down there on Sunday and hopefully try again to get him off the vent then. It is my hope and prayer that John will be ready but am glad that they have a way to check.

9pm I had a really good conversation with the GI doc today and he has some ideas and such and will continue to look into this. He is perplexed by it being only the one number that changed and is also worried that there is an issue at the anastamosis that continues to bleed at every little provocation.
Labs at noon and 4p showed the INR to be 1.0 but it is unclear if that is still just the result of the two units of plasma that he got today or not and I am unsure of when we will see a number that is John's own number, but I'll find that out tomorrow, along with continuing numbers.
The nurse read the ultrasound report to me and it sounds like good blood flow to the liver and also a new pleural effusion in the left lung this time but I'll know more about that tomorrow too.
At the moment John is sleeping but just a bit ago he was awake enough to sign yes and no clearly enough to choose to watch you tube videos over just listen to music and to request second plays of favorites. His NG tube is now pulling clear greenish stuff and so the bleeding is past for the moment. Hopefully we have seen the last of it period and not just another break from it. Mostly tonight though I am glad that John stayed with us through all of 2010 and it is my fervent prayer that he reach the end of 2011 with smiles on his face and signs flowing from his hands as he wheels happily through days of school and learning and fun together with us. God bless you all and Happy New Year!

Saturday, New Years Day
7pm Today has been wonderful, getting to hold John for the first time since surgery, oh there are not words to describe but we both had a wonderful nap together in the chair and from 9:30-1 it felt just wonderful to hold him. Charity came and we went out for lunch and a bit of shopping and then got some time to visit too.

8pm Now I wish that I wasn't nervous, but today is the perfect storm for bleeding. Every time John has bled has been proceeded by 1. Dialysis, they just finished up, 2. Clamping the ng tube or removing it, it is clamped and only open to gravity drain occasionally and no suction, 3. Stress of getting ready to extubate, extubation is planned for tomorrow. So of course I am sitting here holding tight to the amazingness of the day and praying that the cycle is finally broken and we can just move forward from here.
The last amazement of the day I want to share is that John is waking to the point of really being John again, he is weak, he is tired and yet is now signing yes and no clear enough for others to see and when asked if he wanted to see friends next week he showed Miss Charity a nice clear yes, we are so blessed.

8:30pm It has been a great way to start the year and thankfully even though there is now blood coming from his NG, g-tube and digested blood from his stoma his platelets are high, his clotting factors are stellar and his hemoglobin is still nice and high too so at least for the moment we are starting this round of bleeding with enough in the right place that hopefully it won't get insane before it gets better.

Sunday, the 9th Day of Christmas.
8am Unamused. With the royal we added on sums up the morning imperfectly at best, cause like every little rotten sinner instead of focusing on the gracious mercy of God in keeping John strong enough to fight this current bleed on his own with no blood products, I'm just unamused at the lack of understanding why it's happening.

11am John is an amazing little fighter and so much more himself with each passing day. The PICU doc looked down his throat and says that he's ready for extubation and the surgeon says that the blood is nothing to get worked up about, it could just be an erosion from the ng tube or anything little like that. I am breathing and knitting and saying prayers of thankfulness for John's strength and being here and all and really really trying to focus on those things.

10pm John is extubated, sitting on my lap with no oxygen on and doing well. He got to sit in dad's lap for several hours and has been able to give a kiss, wave a bit at the docs and sign yes or no for what he wants. He is still very weak and he is also still bleeding but he is undoubtedly John and warm and cuddly and amazing.

We end the day and the weekend filled with the joy of new hope and new possibility. The Lord grant us all a quiet night and a new day that reflects His grace and mercy.