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.