Sunday, July 1, 2012

How I Spent My Saturday

Ron and Moira left for Texas on Thursday.  Peyton has not been herself for the past several days.  I was concerned about them leaving because of how Peyton was feeling.  I was afraid that she might wind up at the hospital at some point while they were gone.  I don't know, it must have been a gut feeling I had that was making me feel this way.

On Friday, Peyton had a pretty rough time of it.  She had been running a bit of a temperature.  In addition, she's been suffering with a great deal of pain.  She can't tell me what she's feeling or where she's feeling it, but my best guess has been that it's her left hip causing her so much bother.  We've been giving her Motrin and Tylenol every morning lately, but the past week it's been at every available opportunity.  She has these screaming and crying fits every morning and sometimes several times a day.  I sometimes wind up in tears along with her because I just want to be able to help her, but I don't know what to do.

We've been around and around this issue with various medical professionals.  Give her ibuprofen.  Give her acetaminophen.  But the issue keeps getting passed off to the next person in the hopes that someone will figure it out.  We're running out of doctors and no one has figured it out!  In fact, a recent visit to the orthopedist {you can read the 6/08/12 entry on her CaringBridge page here} resulted in me making several doctor appointments for Peyton in August at Boston Children's Hospital, which has one of the best pediatric orthopedic departments in the country.

On Saturday, she wasn't feeling well again.  However, in addition to her respiratory issues and intense pain, her g-j tube was not working properly and it was leaking.  Off to the ER we went.

 The ER was seemingly not very busy.  We got into a room very quickly and it wasn't long before we saw someone.  We explained all the issues going on - respiratory {although she started an antibiotic on Friday}, g-j tube, and pain.  It was quite the lengthy discussion, but before long a resident was in.  We'd seen this doctor several times before, both in the ER and on the floor when she's been admitted.  I found out today that this was his last day before moving on.  It's kind of neat that over the 3 years of his residency, he saw her in the ER right at the beginning and right at the end {and several times in between}.

 The respiratory issues fell to the bottom of the list since she's already on an antibiotic.  That left the g-j tube and the pain.  It took forever but they finally ordered a couple x-rays so we could see what was going on.  It took even longer to actually get the x-rays done.  I can't even guess as to how much longer than that it was before the radiologist read them.  It was ridiculous.  Meanwhile, Peyton, who is on continuous round-the-clock feeds through her tube, was not being fed this whole time.  

portable x-ray machine brought into Peyton's ER room
 After all the waiting, her hip x-rays looked fine.  Fine.  All that pain, screaming, and crying and the x-rays were fine.  But there is a problem and it is real.  We just don't know what it is.  She wouldn't be having pain if there weren't something wrong.  Additionally, it wouldn't be getting worse day by day if there weren't something wrong.

contrast used for the g-j tube portion of the x-rays
As for the g-j tube, the radiologist said the placement was fine and the contrast was flowing through the tube just fine.  Forget the fact that the radiologist in Interventional Radiology told me that if it is having any leakage, that was a problem and it would need to be replaced right away.  Forget that.  This Saturday radiologist said there was no problem.  Nothing needed to be done.

After the g-j tube issue was discussed, the issue of the pain was kind of dropped.  No way.  I was not willing to leave there without any answers or any kind of help.  Peyton's home nurse was with me the whole time, so she helped me by bringing up that issue again to see what we could do.  It was like we were going to leave without any answers.  Again.

This pain has been going on for several weeks.  Motrin and Tylenol aren't cutting it.  Her orthopedist has written her off.  She needs help now.  I left that orthopedist appointment in tears.  I cry almost every day when she is in one of her bouts of extreme pain.  After the doctor walked out of that ER room, I cried yet again.  I just want to help my child and it seems like I'm asking for the world!  Does no one want to help her?  Does no one care?  Does no one see that there is a real problem??  It is beyond frustrating.  We pushed.  We got a prescription for oxycodone.  It's not going to last long - it wasn't that big a prescription...at all.

Please, God, let us just get through to mid-August and get her to Boston where we can get some real help!!

Remember, through this all, my husband is out of town.  I have felt so helpless through all of this as it is, but to not have my husband here has been really difficult.  I am so incredibly grateful to our home nurse, who is new to Peyton by a week or so, who went out of her way to make sure everything went as well as it could considering the situation.  I also want to thank everyone {you'll know who you are} who offered prayers and support via text, twitter, facebook, etc.  Some of you offered to help in any way and I cannot tell you how appreciative I am.  In addition, I want to thank two of the women from our Sisterhood ministry who just happened to be at the hospital visiting another Sister.  When they found out that we were in the children's ER, they made their way over and came back to see Peyton and pray with us and just offer their love and support.  I really appreciated that.

The whole day was lost being in the ER some seven hours.  Frustration built up.  Tears were shed.  I went home feeling like there wasn't much at all accomplished.  Saddened that no one seems to be able to or want to help Peyton.  But despite all of that, the hand of God was at work throughout the day.  People offering support.  People stopping by the ER out of the blue to show their support in person.  People going above and beyond.  A pharmacy that was closing in less than 5 minutes who actually filled that new prescription while I waited.  We don't have answers.  And it's going to be a long haul to mid-August.  But I was shown that while I did not have the support of my husband in person, God placed certain specific people in my day to help me through it.

Amazing, right?


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