Boston - Day 1

We made it safe and sound to Boston!  We took the trip over 2 days.  We spent the evening on Saturday with my friend Kelly in Virginia.  We got off to a little later start on Sunday (but that's ok!!).  Our Garmin has 2009 maps and is clearly now needing updated.  It took us a couple ways that clearly were not the quickest option so we probably lost a little time that way.  We had a LOT of heavy traffic both days, but only rain on Saturday (it was pretty bad in some places in North Carolina).  We drove through Washington, DC (which we could have avoided, but was fun to see anyway).  When we approached NY City, we decided to hop off and head into Manhattan for a "quick" tour.  It was fun, again, but lost time there.  Then the Garmin took us another way that was clearly not the fastest so we lost a little more time.  That way also had us come upon a very bad motorcycle wreck so we lost more time.  Not sure what happened but FDNY and NYPD were on the scene.  Other motorcyclists were off their bikes on the side and were crying and (I didn't see) the person was in the ambulance but was not being attended too.  Could not have been a good outcome and it was quite sad.  Once we got past that, we dealt with more heavy traffic along the way.  $52 in tolls later (thank you NJ and NY!!) we were into Connecticut.  We decided against the fastest route which would eventually have us on yet another toll road and just kept on going up I 95 towards Boston, where the Garmin dumped us into regular city traffic well before it was probably warranted.  Anyway, we made it in around 10:40pm.  Safe and sound but tired!

Today was Day 1 at Children's Hospital Boston. We saw two orthopedic specialists.  The first dealt with lower extremities, the second her upper extremities.

The second doctor (upper extremities) really didn't have much to offer.  Basically any surgical option would not be advisable for her because of her overall health but he clearly stated that any surgery to fix those shoulders would be counter productive.  He was not optimistic that it would fix anything and he said the failure rate, especially for someone like Peyton is very high.  In a nutshell, he stated that he tries to weigh hurt vs harm.  He did think that she probably experiences some pain as her shoulders pop in and out.  Sometimes not as we've seen, but when it gets stuck out of socket and we have a little more difficulty, it probably causes some issues with the muscle and then she winds up in more pain.  Pain management is the key but he said nothing that is happening with her shoulders is going to cause "harm" to her.  Keep on doing whatever we're doing therapy-wise.  He said we're not going to harm her.  He also said that there is no bracing that would help.  So, that wasn't the most exciting visit but he was very nice and gave honest opinions without being condescending!  If this was the ONLY appointment we were here for, I'd be a little unhappy but as it is part of a group of specialists she's seeing, it was good for him to weigh in.

The first doctor was lower extremities.  She had some concern about the possibility of pain issues arising in her neck - the spine being pinched somewhere.  Peyton had a series of neck x-rays done and they did not show anything, so that is good.  On examination, she did note some scoliosis.  I also mentioned in one of the doctor notes from MUSC they noted (on a chest xray) some compression at T8 (I think it was T8).  She said given her overall condition, these things are not surprising.  She didn't say anything about what to do about those - I think it is what it is unfortunately.  As far as her hip pain, she felt that it was clearly related to the hip popping in and out.  But she said there may be some neurological component there as well.  She talked extensively about what our long-term plan is for Peyton - what her plan of care is (i.e. DNR, life expectancy, etc).  Basically, what are we looking for for her - a surgical solution or comfort?  Of course I told her we want to do what helps her but if that is pain management and comfort, then that is fine.  She was really nice - not overly personable - but nice enough and definitely explained things thoroughly.  She described the surgical procedure that would be recommended - basically if you do one hip, you have to do both - the thigh bone is shortened and then re-angled into the hip socket, reshaping the pelvis, etc.  She said it is a high blood loss surgery and is a pretty major deal.  She wants all the specialists we are seeing to weigh in but she feels (as do we) that the effects of the surgery itself might be worse than what she's dealing with now.  Pain level now vs. post-surgery/recovery.  Will it work and for how long?  What benefit is there really for her long term?  I think based on the fact that there are other surgeries she theoretically could have (i.e. re-do her nissen fundoplication which is not working properly now, and the potential for mitral valve repair/replacement - cardiology said she would likely not survive that surgery if it became necessary...it's not TODAY...but could be one day)...those surgeries aren't going to be done, so it would likely be that this surgery would not even be an option for her because of her overall health.  All that said, she said she could DEFINITELY benefit from a Rhino brace.  (See google images here.  Peyton had one of these as an infant.)  She said when she's drawing up that leg (which she frequently does), she's putting it out of joint and it's staying there.  She said that the brace plus the oxycodone we're currently doing should be sufficient to help keep her comfortable....if comfort is what we are trying to achieve for her right now.  As to her stander, we can use it, but more in a sitting position.  Standing in it will clearly depend on her level of pain.  I think she is good with all therapies resuming but she did not offer any specific things that could be done.

So at the end of the day, do we have any real answers and an amazing solution to a big problem?  No.  This being the day with the two appointments that were the main reason for us being here, was it worth the trip considering all I just said??  Yes.  The doctor in Charleston didn't even offer the Rhino brace.  He doesn't think there's a problem.  He didn't describe the surgery at all.  It was good to hear everything she said even if there's no definitive solution to the problem.  I am glad we came.

Tomorrow Peyton will see the Pulmonary doctor.  This is good especially with her still dealing with the ongoing aspiration pneumonia.  She's still dealing with the IV meds for over a little over a week yet.  She isn't any better or worse at the moment.  We don't have any issues with the Pulmonary clinic in Charleston, but since we're here, we just wanted to see what they'd have to say about her overall respiratory health - just to see if there is anything they would add or change or recommend or test for, etc.

Ron and Moira walked down to Fenway Park this afternoon for a little look see.  Peyton and I stayed behind and napped.  I'm not sure what all we will do while we're here.  It is difficult getting out with Peyton considering all we have to bring every time we head out the door.  But I hope to get out and see some sites.

Please continue praying for Peyton's health to improve.  As I said, she's no better even while continuing on these two IV antibiotics.  But she's no worse, so I guess that's good.

OH...and as for Children's Hospital Boston, it's an amazing place.  It's huge.  Ron said when you walk in, it's like a train station.  There's just so many people everywhere.  I'll have to get some pictures.  While in the waiting room, I was really impressed with the volunteers helping kids to feel at home.  There are tables with coloring pages and crayons/markers laid out in every waiting room we saw.  They had clown comedians in the waiting room at one point.  They just did a really great job of making people feel at ease.  Kudos to CHB!

Keep the Prayers Up Please!

As you know, Peyton was able to come home from the hospital on Saturday afternoon.  Since she's been home, she's gotten just a little worse.  Not shockingly worse.  Not enough to go back to the ER...yet.  However, it's enough to raise our concern level for her just a little.

This afternoon, a nurse from the step down unit of the PICU called just to check on Peyton.  I explained to her what our concerns are right now.  She, in turn, contacted the gen peds doctor, who then called me back.  We discussed everything and there is enough concern to warrant bringing her back to the ER.  We agreed that we'd watch her overnight and see how things go, but if there is no improvement, we would bring her to the ER in the morning.  The doctor was going to give the ER a heads up just to say we might wind up back there.

Essentially, Peyton's lungs sound really "wet" still, which is consistent with the pneumonia.  Her last day in the hospital, she was on room air.  We haven't really been able to get her off oxygen at all (even while awake) since we've been home.  Her heart rate was back down into the 120s and low 100s/90s while sleeping - which is much better.  However, this evening, her heart rate is back up into the 130s/140s.  She slept for several hours today as well.

Please continue to pray that she improves significantly overnight so we can avoid another trip to the hospital.

Trying This Again

Hi there.  I tried to type something last night on my Kindle, but I was having issues.  I tried to save what I had done as a draft, but it published even though it wasn't done and had some nice autocorrect issues.  I had to delete it and wait til I had Ron's laptop here.

So...I am back.

I am updating today to let you know that Peyton was admitted to the hospital yesterday.  On the 14th, she wasn't herself.  Just fussy and tired, but not wanting to sleep.  I couldn't pinpoint what her problem was.  We did attend the Luke 14 Banquet at our church.  You can read about that on my blog here. 

When we got home, she wound up having a low grade fever and she threw up once.  That night, she was pretty restless.  In the morning she was burning up and threw up some.  Her temp was 103.5  Her heart rate was up around 180. Once we got Moira off to school, Ron and I brought Peyton in to the ER.  She was right out of it by the time we got to the hospital.  Ron dropped me off at the door and went to park.  Peyton totally bypassed triage and was taken back immediately.  Within seconds we had 7 or 8 doctors and nurses in the room with her.  Her coloring was not good.  Her blood pressure was very low.  Her heart rate was very high.  Her fever was high.  

They accessed her port immediately and pushed fluids in with a big syringe rather than just start the IV.  They gave her over 300cc's of fluid that way before starting the IV, hoping it would help to get her blood pressure back up.  Her oxygen was also pretty low.  They had to put her on a mask and give her lots of oxygen.  It was a bit frightening to see how quickly she became so sick.

We waited all day in the ER.  The children's hospital is packed.  We finally got into a room around 4pm or so.  She was brought up to the step down unit of the PICU, which is not a place we've been to before.  More monitoring here.  

So far, we have found out that she has rhinovirus and pneumonia.  Other labs are still pending.  

In addition to this, over the weekend, the balloon in her GJ tube had broken and the tube was in danger of falling right out.  However, her home nurse managed to get it secured really well before that happened.  I hadn't actually set up anything to have the tube replaced prior to heading to the ER, so I made that issue one of secondary concern while we were at the ER.  She had the tube changed out today.

We should be getting transferred to a regular room.  I thought it was going to be today.  I suppose it still could be.  We'll see.

I will keep you updated.

Hello...It's Been A Long Time!

It has been a while since I posted!!  If you assumed that all was going reasonably well in our world, you'd be right.  Peyton's been holding her own for the past little bit.  Still really junky at times.  Still requiring lots of suction.  Occasionally getting a little sick, but never amounting to much.

Yesterday she had a follow up with the Infectious Disease doctor.  For the past couple weeks, she's had these off again on again low grade fevers...mostly on again for the past 5 days or so.  Her heart rate has been higher than normal as well.  Suction needs have been increasing.  He agreed that something was going on, but was hesitant to start her on anything unless we knew for sure that we had something really going on.  The last thing we want is for her to become immune to antibiotics.  He said that if her temps rose above 100.4 to give him a call.  So far, the highest has been only around 99.6.

What a difference less than a day makes.  Peyton woke up at about 4:30 coughing and gagging and definitely needing suctioned.  She was also throwing up a little.  She continued to cough.  It was like something was stuck but it wasn't coming up.   Poor little girl.  It just wasn't clearing so she continued to cough intermittently.  She finally settled around 5:00 but continued to cough a little here and there.  Then it was back to the throwing up a little again around 7:30 or so.  She felt pretty hot, so when I changed her diaper I checked her temp.  101.3!!  In addition, her oxygen was only at about 93% while ON oxygen.  That has improved a little.  Her heart rate, though, has been ranging between high 150s to low 170s!!  It should be in the very low 100s.  108ish, like.

Just after 8:00, I got on the phone to call the doctor.  He actually answered himself and I spoke directly with him right then!  He is concerned about aspiration pneumonia (or the risk of, at the very least).  He wants to start her back on some antibiotics today.  He said we should see a difference after about 48 hours.  If not, I'm to call back.

So, while we've had a pretty decent run of it, we're putting Peyton back on antibiotics.  We appreciate your prayers that she responds well and we see much improvement in the next 48 hours.

Endoscopy - Bronchoscopy

Peyton is back home from her endoscopy and bronchoscopy!

We arrived at MUSC for 7:00 this morning.  We got her checked in and into the holding area before going back for the procedures.  Both the pulmonary doctor and gastroenterologist came to speak to me before the procedures just to explain what they'd be doing and what they would be looking for.  I was able to go back into the procedure area with Peyton while the anesthesiologist got Peyton settled in with a nice dose of propofol.  She was asleep very quickly and then I headed back out to the waiting room.

The procedures didn't take too long.  The pulmonologist came out first to sit down and discuss her findings with me.  Mid-way through, Ron showed up - he had to bring Moira to school, so came back when that was done.  Essentially, what she found was that Peyton has the same white, frothy secretions we find in her mouth and back of her throat all the way down her airway and into her lungs.  She said there were yellowish secretions towards the bottom on the right side.  So, it's evident that she is still aspirating, which is not good.  She suctioned out as much as she could.  The difficult thing is that it just comes back - you can suction all you want, but it comes back.  She was able to take some cultures so she could have them tested for various strains of bacteria.  Up until now, we've had the regular nasal cultures done in the hospital and any antibiotics she's been on have either failed or took forever to even work, indicating whatever she's got is just outside the realm of the drugs' capability.  We're trying to troubleshoot and it's like taking a shot in the dark.  Hopefully the cultures taken today will provide a much better clue as to what she's got going on so that the doctors can know best how to treat the illness.

From a pulmonary point of view, it's not good to be aspirating.  It could cause aspiration pneumonia, which has the potential to be devastating.  So, what can they do??  Nothing.  Without going to the extreme surgical measures I discussed a couple months back, there's really nothing we can do except try to get on top of these illnesses when they happen to try to suppress them before they become too much to handle.  If you are new to Peyton's story and haven't read back far enough yet, the surgical options would be either doing a trach, which would allow us to suction her further down; or to do a layringotracheal separation - the airway and esophagus are physically separated and the airway is cut off from the upper throat so ALL breathing is through a trach and there would be NO sounds whatsoever coming out of Peyton's mouth again.  Even with just a trach alone she could still aspirate.  Anyway, it's difficult knowing that there are possible ways to help (and even those ways are definite!) and that you choose not to go those routes, even when you are making those choices based on what is in her best interest.

Then there was the endoscopy.  This was because of the gastric bleeding she's been having.  They needed to locate the source of the bleeding.  Let me just say that my prayers were for the problem to be found so that it wouldn't be a mystery - either make it obvious and make it be something which is easily repaired OR just let it be nothing....let there be NO sign of anything being on.  I have to say we were blessed today.  I saw pictures the doctor took.  He found NOTHING.  No active bleed.  No old blood.  Not anything bloody.  NOTHING!!!!!  

Between the two procedures, the only troubling bit was this.  Recall that back in August of 2009, Peyton had a nissen fundoplication surgery.  This was done at a time when she was violently throwing up all the time.  One of the risks of this procedure, an open surgery that left a several inch scar down her belly, is that it can come undone.  Well, her nissen is no longer in tact.  It is undone.  So the question remains, what is to be done about that.  She is throwing up, but not to the extent she was throwing up before.  However, she IS aspirating.  So, if we're faced with the possibility of this surgery it's a real tough call.  I know when we saw the surgeon for a check up a few weeks back, he is currently inclined to be as minimally invasive as possible now considering how her overall health has generally declined.  It is SO hard to know what to do.

So, it was a good news bad news kind of day.  But we are so blessed that the endoscopy revealed NO bleeding.  That is a huge relief.  The pulmonologist took cultures and we'll hear more about the results in the coming days or week or so.  The gastroenterologist took tissue samples, so it'll be a while before we hear anything back on that.

Aside from all of this, Peyton's temperature is back to normal.  She's still pretty junky sounding, but is feeling much better than she was the past couple days.  

Thank you so much for all your prayers and support!!