Welcome to A Million Miracles.

In February of 2008 I was diagnosed with an incurable, progressive and terminal condition called Idiopathic Primary Pulmonary Hypertension (PH). In retrospect, we can trace this illness back to at least January of 2004, but you can have it for several years before you notice any symptoms. My diagnosis came after I was hospitalized for what ended up being almost three weeks - spent consecutively in three different hospitals - two of them being in ICU units. Over the past year we have been sending email updates to family and friends concerning my medical/physical journey as well as lessons I'm learning as a result.

These are those emails. There's no rhyme or reason as to when I send out another email update. It just happens when "the Spirit moves." But whenever I write and send one, I will also post it on this blog.

Friday, August 14, 2009

#49 - Hi-Ho, Hi-Ho, It's Back to the Hospital I Go

Date Sent: Fri, Aug 14, 2009 at 1:58 PM

It was on Monday, August 3rd that a new hickman catheter was placed going into my heart. Aaron and I were both disappointed in how/where it was placed - both from an aesthetical standpoint, as well as practical (my bra strap is directly on top of it). Out of frustration, I cried out to God "I hate this one! I just wish it could be changed!" OOPS!!!! It looks like God is answering that prayer....

Last evening when I was taking a shower, my towel caught on the catheter and gave it a little tug. There's a cuff that's just under the skin that's part of the catheter. This cuff has two main functions. One - my skin attaches to it, eventually forming a very tight seal, which keeps nasty little bacteria out. Two - it provides stability and helps the catheter stay in place. Well, that entire cuff pulled out. Not. Good. So, Aaron and I took a trip to the ER at the Hershey Medical Center. The doctors on duty didn't know what to do about it, so they took an x-ray and saw that I was still getting medicine, and sent me home. They said to call the main hospital operator in the morning (today) and see if she could connect me with someone who might know about these types of catheters. So, we obeyed. This morning we were told that patients aren't allowed to set up their own appointment, and that the doctor I saw in the ER should have known that. So, feeling quite overwhelmed, I started to cry on the phone. The nurse took pity on me and said that she'd talk to her doctor and see what he wanted to do. He looked at the x-ray and said I'm still getting medicine, so it will be okay.

Now, VERY OVERWHELMED, I called the personal nurse of my doctor in Pittsburgh, and cried my heart out to her. Her response was, "THEY SAID WHAT?!!?" Within a matter of 15 minutes, she had spoken with three doctors there, reserved me a bed, checked the operating room schedule, and called me back ('cause I accidentally hung up on her), and asked me "how soon can you get here?" Sigh. At least we're not the only ones concerned about this! She even offered me an ambulance if I wasn't up to Aaron driving me out there. I was asked a battery of questions (to make sure that I'm not showing symptoms of not getting medicine or of septicemia setting in ALREADY!). PRAISE GOD I FEEL OKAY - JUST NERVOUS.

So - Alex is spending the next several days with a dear, wonderful, amazing family. Harrison is at our house with my mother. House showings have started to pick up again, so my dear mother also gets the fabulous responsibility of keeping it immaculate with a toddler who's prematurely hit the "wonderful" two's. Aaron is driving like the wind to Pittsburgh, and I am sitting in the passenger seat typing away. Since it's Friday afternoon, I'm supposed to go to the ER (at UPMC Presby), and that way they'll start the process faster than if I was just admitted right before the weekend started. My doctor is off this week, but I know the ones that are on duty, and they've been caught up to speed with my situation. So, at least I feel confident that I'll be taken care of.

All of that said - I'M SICK OF HOSPITALS - I'M SICK OF SURGERIES - I'M SICK OF FORCED SEPARATION FROM MY FAMILY - I'M SICK OF NOT BEING ALLOWED SHOWERS - I'M SICK OF IVS - AND I'M SICK OF BEING SICK! ........ However - I can breathe - I can walk - I can play on the computer - I don't have any oxygen on right now - I have childcare for my kids - I have medicine available to me - I have good insurance - and I have a fabulous support structure. I'M ALIVE - so I shouldn't complain.

It looks like I'll be admitted until at least Monday or Tuesday. Aaron has meetings in Pittsburgh Monday thru Wednesday, so I'll be there at least that long. So, once again we covet your prayers for strength, wisdom for the medical personnel, peace for our kids, physical safety for me, and for God to work out something GOOD through this ordeal. One thing's certain - I'm learning NOT to complain so much to Him - He keeps answering my prayers - even the ones I probably didn't really mean. So, that being said, "Dear God - we feel overwhelmed. Please sell our house and get that off of our very full plate." **SMILE**

Thank you for your prayers! Catch ya on the flip side....

~ Julia

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