Hospital Life...Day 35

Today is Day 35.  If you missed yesterday's post, you can read that HERE.

Today Ron and I celebrate 13 years of married life.  He will be up here at the hospital soon and will be bringing a nice dinner.  I hope.  It seems like we are in for a storm tonight.  This isn't exactly what we'd had in mind when we were thinking about our upcoming anniversary a couple months ago.  I am so grateful for the husband that Ron is and for the father he is to our children.  We have faced some pretty serious challenges over the past 12 of those 13 years.  We have faced far more than people our age should have to face.  We've faced a lot more than many people face in a lifetime.  After 13 years, we remain together.

But this is about Peyton...

Peyton woke up sounding more junky than she has been.  On rounds, the doctors felt that it might be a good idea to get a chest x-ray because of how she was sounding.  Peyton is on two pretty "big gun" antibiotics right now, so the chances of her having a new infection would seem slim, but this is Peyton, so you never know what's going to happen with her.

As far as pain control goes, I think Peyton is in a better place now than she has been.  It is good to see her more comfortable.  She still has some moments of intermittent pain, but overall, I think things are improving.

Peyton did have that chest x-ray and the resident came in a while later to let me know that they were going to have Cardiology come in and take a look at her.  The x-ray showed that there seems to be some fluid around her lungs.  This is something that we've been fortunate to not have happen so far.  For now, Cardiology is increasing one of her current meds to see if it helps reduce the amount of fluid.  Hopefully that helps.

There's always something.  Just when you feel like you are making some ground in one area, something else comes up.  As always, we appreciate your continued prayers for Peyton!

Hospital Life...Day 20

Today is Day 20.  In case you missed yesterday's update, you can check that out HERE.

There is not a lot of news to report today.  Peyton is about the same as yesterday.  She continues on her IV antibiotics for a possible infection. 

Peyton was supposed to have her right femur x-rayed tomorrow, but it was done today instead.  Had Peyton gone home from the hospital 19 days ago, tomorrow would have been her 3-week follow up with Ortho for the fracture to check on it's healing.  Her thigh and knee are still quite swollen.  If there is a difference in size {for the better}, it is not much at all.  I'm no radiologist, but I saw the x-ray on the portable machine.  Ouch!!  Poor Peyton.  Just looking at her leg makes me want to cry.  It's so swollen and she has got to be in a lot of pain.  She is still in the newest splint, and I assume that will continue for a while.  Just for my peace of mind, I would want her to!  When she had the tibia fracture back in February, she got to a point in the three weeks her leg was splinted where she would move her leg around as much as she was able.  That isn't happening this time around.  That is a little worrisome to me.

There is still no talk of a date to go home, as things still need to be sorted out with her labs, TPN, pain management, and so on before that can happen.  To be honest, I have fears about going home.  We will have her admitted to the hospice care program, so that will be helpful, but it also puts us in a new season of Peyton's life.  When I see how Peyton is today, I see a pretty sick child.  I see an improved version of the girl laying in that bed a couple weeks ago, but nothing has changed with what's going on on the inside - the underlying condition.

I try my best to not worry about the things I shouldn't worry about - whether it is with Peyton or things on the outside world.  I am trying my best to only be concerned with today, but then things creep into my mind....like who is the next attending going to be and when will the change happen.  Will they be as familiar with Peyton as they need to be?  Have they been with her before?  Again, I get ahead of myself by worrying about these things, but still I worry.

Tomorrow we wrap up three weeks in the hospital.  Thank you again to everyone for their kindness, support, prayers, etc.  We truly appreciate it!!

Keep up the prayers!!

Hospital Life...Day 17

Today is Day 17.  Peyton has now passed up the previous record for her longest hospital stay.  This was not a record we set out to achieve, but here we are.  If you missed the Day 16 update, you can read that HERE.

In some respects, today was a quiet day.  There wasn't a whole lot going on aside from just watching Peyton and making sure nothing new came up.  She began TPN on Day 16 and so that continued today.  Her new bag for today was hung this evening.  It's a different color this time.  Not sure what the difference is.

Peyton did require another bolus of potassium via IV.  Most of her meds that are given through her g-tube have been converted to an IV formulation, so there is less going into her stomach.  Her tube feeds are running at only 5 mL per hour just to keep things stimulated.  Labs were drawn late this afternoon. They will check all her numbers and readjust things where necessary.

Today and yesterday were "good" days.  I feel like I need to be cautious how I say that.  By saying "good", I feel like that gets hopes up way higher than they should be.  It's a bit deceiving to see her laying in bed looking "good" all while knowing that this is a very sick child.  The term "good" is also relative.  Had you been here a few days ago or a week ago, you might think she looks wonderful.  But if you were to walk in right now and look at her, you'd probably think that she looks like a sick little girl.

The day was also a little "heavy".  This morning I met with two people from Hands of Hope, which is a part of Hospice Care of South Carolina.  Hands of Hope was suggested to me by not one, but three people in the past week or so.  The reality is {and I'm sure everyone reading this is well aware by now} that Peyton is very sick.  Short of a miracle here on Earth, there's no "fix" for the things that are wrong with her.  That said, we do not have a timeframe.  Doing TPN isn't a "fix".  There are a lot of issues at play, not just the GI issue.  

I think hospice care is generally assumed to be extreme end of life care.  This organization has the appropriate health care and social workers in place to provide services to the patient and their family during a "life limiting" illness.  It is only recently that the state has allowed what they call "concurrent care" for pediatric cases.  That is, allowing hospice care to co-exist with the regular home nursing care that Peyton receives through her Medicaid waiver.  Her nursing should not change.  Hospice comes alongside what we already have in place to offer additional resources and support.  They make home visits at least once a week.  The scope of what they do changes as the illness does.  They coordinate with the medical team.  They assign one doctor as a point of contact to assist in coordinating the case.  The nurse who visits each week can report back to specific doctors on the team if there are any changes.  They can help to establish the need for ER visits when necessary.  The goal is to limit that.  They offer child life services as well.  They help transition the whole family during this time.  There is so much that they have to offer the family.  I am not sure if Peyton can be admitted while she is still in the hospital right now or if it has to wait until she is discharged, but the plan is to get her into this program assuming we get to the point of heading home.

I met with someone from our church's pastoral care ministry.  It was so good to talk to her and I so appreciate her coming up here to talk and also to pray for me and for Peyton.  

Thank you to my Dad who brightened the room today with the beautiful flowers he sent for Peyton.  Thank you!!  They are absolutely gorgeous.