Hospital Life...Day 29

Today is Day 29.  I wrote yesterday's update late and just posted it right before midnight, so if you missed reading that, you can read it HERE.

Today has been yet another challenging day - and it's not over yet!  I thought I would get a quick update out while I'm thinking about it.  The list of items of things going on with Peyton is pretty extensive right now.

Last night, Peyton had a fever.  She was started on a second antibiotic yesterday but the night resident changed it to something else to cover for a possible hospital-acquired pneumonia.  Her chest x-ray didn't really show anything definitive in terms of a pneumonia, but that's not unusual for her - and it doesn't mean it's not a pneumonia.

I probably hadn't even mentioned this, but Peyton was transitioned down on the TPN nutrition and back up on her tube feeds.  She has been back on the tube feeds solely since Sunday.  They ran all the labs to check her nutritional status.  Her potassium should be at 3.5.  It was 2.1.  She had to be given an IV bolus of potassium over 2 hours this morning.  They re-checked that value and it came back as 2.2, so she is currently in the middle of a 4 hour IV bolus of potassium.

I haven't mentioned her hemoglobin lately because it has been holding steady for the past week, I think, in the mid-10s.  Over the weekend it dropped into the 9s and then into the 8s.  They've been monitoring it much more frequently.  This morning it was lower at 8.4.  It was rechecked this afternoon and it is now 7.5, only hours after being checked this morning.  It will be rechecked, but that's "blood transfusion low", so what they will do is recheck again in a little while and go from there.  It is possible Peyton will require another transfusion.

A lot of labs have gone in a poor direction since transitioning back on to tube feeds.  The reason for the transition is because of her pancreatic enzyme insufficiency which was recently discovered.  In order to receive her doses of the enzyme, she needed to be back up on her tube feeds at her goal rate {the rate she came in on from home}.  This enzyme insufficiency is a possible reason for her malabsorption and, therefore, malnutrition.  By giving her the enzyme, she should theoretically be absorbing the nutrients she was not absorbing prior to having to start her on TPN.  With the enzyme, she should theoretically have been able to transition her successfully back on to tube feeds since she would theoretically now be able to absorb everything once again.  This does not seem to be the case.

Pain management is still an issue.  They were going to revise the plan to taper her off the morphine and on to something else to help with some of the side effects of morphine.  One of the side effects is urinary retention.  She had to have a catheter put in every 4-6 hours after yesterday afternoon just so they could drain her bladder.  They decided to go ahead and put a foley in today.  The pain management plan is remaining where it was for now.

Peyton's leg still does not look good.  It is the strangest thing.  The redness gets slightly better and slightly worse.  There is a large bruise that appeared but then 30 minutes later it wasn't really there.  One of the residents is concerned that the reason for the drop in her hemoglobin might be due to a bleed happening in her leg.  An ultrasound has been ordered so they can get yet another look.

The gallium scan that was supposed to happen today {part 3 of the 3 step process} is now happening tomorrow.  Nuclear medicine decided that the gallium injected yesterday really needs to sit in her for 48 hours for it to concentrate in any "hot zones" so they can get the best possible images.  Since there is about an 80% chance of getting definitive answer from the scan in general, I am all for waiting until they feel like they can get the best images.

Right now, we are waiting on ultrasound, additional blood work to be done to check hemoglobin and potassium, and then we'll go from there.  I am sure there's more going on with Peyton than "just" this, so if I think of it, I'll catch you up in the next post.

As always, your prayers are appreciated!

Hospital Life...Day 21 {Part 2}

Earlier today I wrote about an issue that came up with Peyton's leg.  You can read about that HERE.  This post is to update you on that situation.

Here is the original picture I posted:

That is what we woke up to this morning.  It did not look like that at all last night or through the night.  Anyone who saw her leg seemed shocked the overnight change.  An ultrasound was ordered and Ortho was contacted.  The felt that the splint could be removed.  In addition to this change in her leg, her x-ray from yesterday showed a new fracture.  How a fracture happened with her leg in a splint for three weeks is beyond me, but it did happen.  The ultrasound revealed no DVTs {blood clots}, so that was good.  However, we are still concerned over the possibility of an infection in her leg.  After a couple of hours out of the splint, this is what her leg looked like:

Peyton is a high risk candidate for anesthesia and surgery, so our fear was that something surgical might need to be done - even if it was "simply" to drain it.  Fortunately, right now, it seems that that isn't going to be necessary although we certainly appreciate any and all prayers for this situation to resolve quickly.  We do not want any infection developing at all.

Nutritionally, the TPN appears to be helping, so that is a good thing.  Her labwork where that is concerned is trending in the right direction.  However, some labs came back from stool studies that were begun shortly after Peyton was admitted a few weeks ago.  One of the results showed a deficiency in her pancreatic function which could be contributing to her malabsorption issues.

The highest level of concern today has been for Peyton's leg.  It was ranking pretty high today.  We are still obviously concerned about the possibility of infection - how deep it goes - is it in the muscle?  the bone?  We're not sure about any of that just now so she is on a second IV antibiotic which should cover any type of infection.  Hopefully things will be looking much improved in the morning.  Because of all of today's issues, the doctors have increased Peyton's morphine dose and added in regularly scheduled Tylenol along with scheduled morphine doses every 3 hours.  It seems to be helping some.  She has to be in pain.  I don't know how she couldn't be!

Many thanks to friends of ours for providing dinner.  We appreciate the trip you made to the hospital with it when you knew Ron was up here with me rather than at home.  Thank you so much.  It was delicious!!

Thank you, also, to a group of "Christian lady" blogging friends who have been praying for us for so long, who sent these beautiful flowers to the hospital to brighten up Peyton's room.  They are beautiful and smell wonderful!

Thank you also to one of my blogging friends who created this sweet button for bloggers to add to their sidebars in support of Peyton.  I really appreciate this.  It's perfect!  {If you want the code, let me know!}

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 18

Today is Day 18.  If you missed the Day 17 update, you can catch up HERE.

Today was, again, another quiet day.  The past two days have been "decent" days, all things considered.  I would say that today wasn't quite as good as those two days, but it was still "ok".  Peyton just seemed a little less willing to give up any smiles for people today - not even when Dr. K tried to get her to smile.  To me she looked a little more purple around they eyes than she has looked lately.  I'm not sure I can put my finger on exactly what the difference is with her, but she wasn't the same today.

I was surprised to see the Ortho resident this afternoon.  He came in with a box which I recognized as one containing a new splint.  He found one that was shorter than that blue one he'd put on her and rigged to fit her previously.  The splint itself looks different but seems to be a good fit for her.  The actual back of the splint is flat as opposed to being bent at the knee to position her leg.  Instead, there is a long foam triangle-shaped wedge that sits inside the splint with the "point" of the triangle being behind her knee.  Her leg is in a good position.  With this splint, everyone can very easily see how her leg looks.  You couldn't at all with the first one.  With the blue one, her leg was covered, but you could open the splint up to look at her leg.  This is great, in my opinion.

You can see for yourselves now just how swollen her leg is, particularly from thigh down through her knee.  Her lower leg is a little swollen, but nothing compared to the top.  Her foot is also a bit puffy.  Some of that puffiness could be related to the overall edema she's been having.  A lot, I'm sure, is fracture-related.  It's a little hard to tell in the picture below, but her thigh is still swollen and red.  In fact, it looks a little more so tonight than it did earlier today or yesterday.

This is Peyton's knee.  It {among other things} makes me so sad.  Her poor leg just looks so sore.  I cannot even imagine.  I've never broken a bone so have no idea how she must feel.

Considering we are likely to be sticking around a while longer, Ortho is going to have more x-rays done on the 15th.  The 16th actually will mark 3 weeks since we took Peyton to the ER with the fracture.  This is about when we would have followed up in the Ortho clinic as an out-patient after the ER visit and one night stay for pain management {HA!!}.  I don't see Peyton being out of this splint for a while.  

In other areas, some of her lab values are looking a bit improved, so that is good.  Hopefully the TPN is helping.  There's still a little ways to go before we decide that, yes, it is {or no, it's not} working.  They have to get everything to a stable level so they know what her TPN formulation should be.  We are back to the yellow TPN tonight.  Apparently it's yellow because of the addition of multi-vitamins.

There are some new residents on the team now.  One came in today and discussed with me some of our wishes for Peyton in the event of a crisis situation.  This has been an on-going topic of discussion for quite some time.  It was actually first brought up with Dr. T a couple of years ago during one of Peyton's many respiratory illnesses.  This has been on our minds for a long time, but we're just trying to make sure now that we are acting in her best interests considering all we are dealing with.  Since there are new residents, they want to make sure they fully understand everything.  They also want to be able to pass the appropriate information on to the residents or other team members who would be caring for Peyton at night or on weekends.

A lot of people are asking how I am doing and are expressing their concern for me.  Please know that I am doing alright.  I won't say "great" because I'm not.  It is not an easy situation to be in day in and day out.  I am tired but I am fine.  I am getting sleep.  I am actually getting more {and better} sleep than I was getting at home.  The couch I sleep on here isn't perfect, but it's fine.  My back is holding up fine.  I am eating.  I do from time to time step outside this room.  Not often, but it has happened!  I know people here are concerned for me too and I appreciate it.  I really am doing as ok as one can be right now.

Thank you to my next door neighbor...who is currently my down the hall neighbor {her baby is in another unit on the same floor right now}...for bringing lunch to me today.  It was so good and I was so hungry I didn't even get to snap a pic before eating it up!  And to one of the nurses who brought me a little Friday afternoon pick-me-up...thank you!!  You know me well!

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.

Hospital Life...Day 16

Today is Day 16.

Today was kind of a quiet day in a sense.  There were no major crises.  It was mostly just watching and waiting.  Peyton seemed to be in a little bit better spirits and even managed a few smiles and attempted laughs.  Not big belly laughs by any means, but it was good.

As I mentioned in my Day 15 post late last night, Peyton was going to be switching to nutrition via IV called TPN.  This was the big thing we came out of the family conference with yesterday.  There really is a whole lot to consider with TPN.  What does this mean for Peyton?  For her quality of life?  Will the theory that it will help her absorb nutrients actually turn into reality?  The list of questions goes on.  Even with the TPN, the gap between where we are today and where we'd need for her to be to even consider going home is wide.  I need to see for myself how this will work and, ultimately, what benefits we see for her in terms of a general base line status.  Though the day was quiet, it was heavy.

While Peyton is in here, there is the opportunity to run some of the tests that are being requested by Genetics in Boston.  Most of the testing is on her.  However, back in February, we received a kit from Boston.  We needed to collect blood samples from Ron and myself and a saliva sample from Moira.  Of course, the issue is where to have this done.  Yes, any lab could collect the samples.  We had the return mail pouch so the getting it back to Boston wasn't the issue.  My concern was whether or not a lab would draw the blood without a doctor's order, just this kit.  I'd mentioned to one of her doctors here that I had this kit and could bring it up.  The other part was making sure Ron, Moira and I were doing this all at the same time, and that samples were collected on a Monday, Tuesday or Wednesday.  The samples have to get there overnight.  They can't sit in a warehouse or on a truck over the weekend.  Today, the three of us did our little bit for Peyton.  It all went well, although the nurses and I had a few moments of comedy surrounding getting my blood drawn and into the vial.  

I enjoyed having a few surprise visitors today.  Thank you all so much for the coffee, magazines and company.  It was great to see you all!!

Peyton began TPN this evening.  This is what it looks like.  It goes directly in through her port.  There is also a separate syringe which contains lipids which will also go in that route.  When the pump gets here, it will be delivered via a syringe IV pump over a certain amount of time.  This concoction of nutrients is a special blend just for Peyton.  Praying that this does something to help.  I feel like it's a shot in the dark as well as being our only option.

If you are wondering about the other half of the family, Ron is hanging in there.  I know he's feeling a lot of stress as well.  Moira is doing well.  We have had the help of friends and she seems to be hanging in as well.  I did have the school guidance counselor speak to her the other day and, by all accounts, that went well.  She also had the opportunity to hang out with a Child Life Specialist here at the hospital this afternoon.  They talked a bit and played.  Moira seemed drawn to the area where there is a play hospital room - so kind of role played a little.  I understand that went well too, so I am encouraged by that.

I appreciate everyone's kind words, deeds, prayers, support and so on.  It makes the days so much more bearable!

Hospital Life...Day 15

Today is Day 15.

Peyton had a rough night.  As I was sleeping, the nurses were watching Peyton's vitals and noticed her oxygen kept dipping down.  It got down into the 60-70% range at one point.  They came and checked on her and I wound up waking up.  As I was waking, there were about 4 other people in the room - a couple nurses, a respiratory therapist and the resident on call.  They wound up having to increase her oxygen flow quite a bit.  The RT had to put a suction catheter down Peyton's nose to try to get anything out that might be blocking her airway.  It seems as if it was a very large mucus plug that was preventing her from getting enough oxygen.  Once that was cleared and my own heart began to beat again, her oxygen percentage came back to where it should be.  It was a bit of a scary moment to be sure.  Needless to say, I did not go back to sleep for a while afterwards even though her numbers were fine.

We had our family conference today.  Ron was able to come from work to attend as well.  There were a total of seven in the meeting, including ourselves.  The big issue that we know is that Peyton's body is not absorbing things properly.  She's losing protein, but we're not entirely sure where.  We know she has a copper deficiency.  We learned that over the summer after seeing the Geneticist in Boston.  Since she came into the hospital this time, we have discovered that she had no recordable levels of iron.  This wasn't the case a couple months ago.  Her albumin low.  So is her potassium.  And now zinc.  Fluid is spilling out into her tissue and it seems that no matter what is tried in an attempt to get the fluid off, nothing is truly working.

One idea is that there could be something wrong with her digestive system that is causing her to not absorb these things.  Her tube feds were switched already to a more broken down version of what she's been getting for quite some time.  It hasn't helped.  The doctors are finding themselves chasing all these things which are not being absorbed.  She has had two blood transfusions and an albumin infusion.  Peyton has required multiple boluses of iron by IV as well as potassium by IV.  Some of these treatments are not really a good thing to have to keep on doing.

Her current form of nutrition, as you may have guessed from everything I've stated above as well as what I've been posting during this stay, is not something that is sustainable.  Essentially, she is malnourished even though she is technically getting all of her nutrition.  If it's not being absorbed, what is it doing?  The thought now is that we ought to consider a new {to her} form of nutrition called TPN.  TPN is a form of nutrition that is given through an IV line.  Since she has a port, it can go through there.  The idea is that all of the correct nutrition would be formulated for her and be administered over most of the day.  It contains sugar, carbs, protein, fats, electrolytes and trace elements.  The theory is that it will be absorbed in her system this way.  There would be no feeds going through her digestive system at all.  It would give her gut a rest and, if there is anything wrong in that area, perhaps give it time to heal.  If we get to a good point with that, then perhaps at some point they could do a scope and biopsy to see if they can figure out exactly what is going on in her gut.  Right now, this is not an option.

As this is really the only viable option we have, this new TPN nutrition is what we will try starting tomorrow {Wednesday, Day 16}.  I don't understand it well enough at all, so I don't understand how it is that fluid is spilling out into her tissues right now but TPN is supposed to stay in the system and not spill out.  I am not a doctor.  I have learned many things these past almost seven years, but this is not something I can claim to even remotely understand.  The thought is that we could, in the next several days, get to a point where we can get her home and she would have this nutrition continue at home because she has a port.  The gap between where we are now and where she needs to be to even consider going home is so enormous that I cannot fathom how that will happen, especially considering that I don't understand how putting this into her veins will stay in and be absorbed any better than the things that have been put in and did not stay in!  Any medical professionals who wish to weigh in...click on the email me button over there on the right sidebar.  Maybe it's all theoretical.  I don't know.  I know the options are not plentiful at this point.  I also feel like there is more going on than just  a digestive system issue.

Prior to the family conference, her Geneticist here at MUSC came into Peyton's room to do a skin biopsy.  The Geneticist in Boston had that on his list of things that he needed from us.  As long as she is here, they decided to get that taken care of.  She did very well through the procedure, as did I.  It was just done right here in her room.  I held her arm during the procedure.  I promised if I had to fall, it would be forward onto the bed.  I did just fine, thank you very much!

When I returned to Peyton's room after the family conference, she was having an ultrasound on her leg {the one in the splint}.  The swelling in her leg is down to her foot.  The doctor wanted to be sure Peyton doesn't have a DVT.  I haven't heard the results of the ultrasound yet.

Shortly after that was finished, a friend of mine visited.  She was so kind as to bring coffee and a couple gifts for the girls.  While she was there, another friend came up.  We all three know each other from worship choir at church.  It was so nice to see them.  I also had breakfast brought to me by another friend.  People have been so kind to us.  I really truly appreciate everyone's thoughtfulness.

If anyone is reading this who has been on Peyton's medical team in the past two weeks, you know Peyton's got a thing for animals.  It started with a pink hippo and then we added the quilt with the animals on it as well as the frog.  Her bed is fast resembling Noah's ark with the addition of a little bear, Peter Rabbit, a penguin, giraffe, and Nemo!