Setbacks

Graham Update Day 37 (7/15/14)

There were a lot of eyebrow-raising things that happened yesterday upon being admitted to Our Children's House at Baylor.  At the time we chalked these up to the chaos of admitting a new patient, but these isolated incidences have unfortunately blossomed into a disturbing trend that has resulted in a pretty significant setback for Graham. 

Everything was fine when we arrived at the hospital.  They had a very nice lady who had been meeting with us since at Children's since last week to ask questions and prepare both sides for transport day.  The discharge from Children's went well, as did the ride over.  Upon arriving we did the customary meet and greets with doctors, nurses, and therapists.  When it came time for Graham to pee though, we asked them how they wanted us to save the urine so they could measure it and send it in for labs.  The nurses looked at us like we were crazy and said "why would we do that?"  We chalked it up to Graham being new at the hospital, and perhaps the orders had changed upon transport.  Still, it was odd that they literally had NO IDEA what we were talking about - there had been ample time to check Graham's charts, and there had been coordination between the two facilities dating back to his second week in the ICU. 

As lunchtime rolled around we had been at Our Children's House at Baylor for an hour, and we asked the nurses when Graham would get lunch.  We were informed that his eating order had not been put in yet, but that we could find some graham crackers in the nutrition station.  So no lunch.  12:00 turned to 1:00.  1:00 turned to physical therapy for a hard workout and then 2:00.  Lunch?  PediaSure?  No chance - orders were not in the system yet.  Finally at 3:00 I convinced a tech to take me back to the supply room to smuggle some contraband nutrition into Graham's room.  Graham of course sucked them back like a ravenous animal.  Who can blame him? He had brain surgery and then two weeks later the medical staff at Our Children's House has him fasting.  And when it was time to pee late in the afternoon?  Nurses still looked at us like we were speaking Yiddish.

Still, we decided to chalk it up to the first day.  Things would be better.  Only they weren't.

As a result of Graham's injury he has a condition known as diabetes isopodous.  Because one part of his pituitary gland is not functioning, his body cannot currently regulate his urine flow.  Left untreated, and still unable to demonstrate a functional thirst mechanism, Graham will literally pee himself to death.  That's why at exactly 8:00 - morning and night - Graham gets his DDAVP, which essentially tells his body to stop peeing itself dry.

Well Graham finally got lunch at 3:45 and dinner 90 minutes later.  So fast-forward to 8:15 p.m. - 15 minutes after he was supposed to get his medication.  Graham is peeing like a racehorse, and I ask his nurse where his drug is.  She said she called over to the pharmacy DOWN THE STREET at 8:00 and they were working on it.  8:30.  8:45.  Finally at 8:55, after an hour of peeing almost continuously (and remember - they still have no idea what to do with it at this point), they finally bring me his syringe - with no needle attached.  I tell the nurse that this is a subcutaneous shot, like insulin, and that he will need a needle to inject it.  So an hour after he was supposed to get his dose, and certainly dehydrated, Graham finally gets the medication that Children's worked for month to get right.  I told the nurse "this CANNOT happen.  He can't get it late.  He will dehydrate himself."  So her boss fed me some BS line about how the medication has an hour-long window to be given.  Well guess what?  I don't care how long it can last outside the fridge.  Graham needs it at 8:00.  And the worst part?  It's not time, Graham's going to sleep soon, and has no time to catch up on fluids.

The next morning it didn't come as a big surprise that Graham's sodium had shot up from 141 to 155 - a HUGE swing in such a short time.  Nor was it a huge surprise, given the goings-on of the previous day, that they were late with Graham's medication yet again. 

Having sodium that high has a tendancy to make people nauseous.  But that didn't stop them from taking Graham to a hot gym and giving him the longest workout he'd had to date.  The result?  Graham threw up all over.  Big shocker - you dehydrate someone and send them to hot yoga and what do you expect to happen?

We did get a visit in the afternoon from the hospital administrator, just to meet us and greet us.  And when it came time to ask us "do you have any questions or concerns?"  we let it all be known.  She was very apologetic and said it was inexcusable, and let the staff know that there was a patient-care issue.  And that is when the finger-pointing began:

"Children's Medical Center didn't give us all the information we needed."  I'm sorry - if you are not ready to admit a patient, don't admit them.  And try reading the Graham's chart.

"You guys need to make sure Graham is drinking enough."  Well guess what?  We are.  We have been holding a straw to his mouth at every waking minute for a week.  He drank more than what the doctor ordered.  Don't you think perhaps letting him pee uncontrollably for 1 hour last night and 20 minutes this morning had anything to do with it? 

Clearly not, because after all was said and done, they were 20 minutes late with his medication again this evening.  And they are already talking about sending Graham back to Children's in a day or two - which we almost welcome at this point.  We have been utterly down and devastated, but at least the setbacks haven't affected his long-term health yet.

We've learned a lot these last 36 hours.  First, we are so grateful for friends and family who lighten our load and allow us to be present at the hospital 24/7.  We have gained at least a surface-level knowledge that has proven useful in pointing the nurses in the right direction.  It makes us think - what if we couldn't be with Graham and learn about his treatment?  What if we didn't have all the help from our church and family that we do?  How bad would things be if we couldn't be there with Graham?

Second, it makes us even more grateful for Children's Medical Center of Dallas.  That place and those people are heaven on earth and its angels, respectively.  We are so blessed that Graham could go there to get better, and I am even more convinced now that it is the best children's hospital in the world.  Children's may be too good, in fact.  Perhaps yesterday was all-too-normal for a hospital setting, and we've just been spoiled by spending a month at THE best.

Finally, as if we didn't know it before, we've learned anew that Graham is unshakable and absolutely amazing.  Less than 30 seconds after tossing his guts, Graham was smiling again.  And tonight, at the end of a hard day?  Chilling on his chair with White Tiger Jr. and a big smile on his face.

We know this setback is minor, worrisome though that it is.  And we knew from day 1 that setbacks would come, even if they were preventable.  We're blessed that this has been the first one of any real significance.  But it has been hard and taken its toll and Graham and our family.  We don't know what the next few days will hold for Graham, but with everyone praying for us and for him we are confident everything will be fine.  Thank you all for everything you do for us, and please keep praying for our little fighter.

#Prayers4Graham