#50 - A Drive-Thru Visit

Date Sent: Sun, Aug 16, 2009 at 9:50 PM

It's amazing how sometimes when you think that you just can't take any more ... when you're eyes are all puffy and red from crying your heart out ... when you're discouraged by the seemingly endless set-backs ... when it looks like daybreak will never come - sometimes God says "Okay, let's make this one easier." I'm SO GRATEFUL that was His decision this past Friday! I typed and emailed update #49 on the car-ride to Pittsburgh. We were headed into the ER at Presby, and I was staring down the barrel of yet ANOTHER hospital stay. I was very discouraged - discouraged that the local (excellent!) big hospital didn't take my problem seriously - discouraged that all the elements were in place for me to get septicemia again - discouraged that I was about to separated from my family again - discouraged that I was about to be stuck alone in a hospital - and discouraged at the impending pain of several repeat procedures that I had just gone through less than two weeks before.

We arrived at the ER, and I took a deep breath in and out. I wiped one final tear from my eye, and having mustered up every bit of strength (as little as it was) I could find within me, I walked bravely through the doors (so grateful that Aaron was by my side). I felt a little better within the first 60 seconds - the person who signed me in had me come straight back to be looked at (I didn't even have to sit in the waiting room). They immediately explained (before even looking at it), that if the cuff really did come out, then I would need a new one - no ifs, no ands or buts. It was SO REASSURING that we were no longer the only ones concerned about the potential gravity of the situation. It wasn't an emergency (yet), but could have become life-threatening at any moment. If it slipped out more and the medicine wasn't going in properly - I wouldn't be able to breathe. If bacteria got in the (now gaping) hole in my chest - septicemia would set in again. And FINALLY - twenty-four hours after the cuff pulled out - people were scrambling to fix it!

After a quick x-ray, and very short (very fast) visits by a couple doctors, the ball was set in motion. About 30 minutes after walking in the door a doctor (GOD, BLESS HIM!) decided he'd stay late and replace it immediately - AS AN OUTPATIENT!!! So, I was whisked upstairs while Aaron scrambled to find a hotel and get oxygen delivered to it so I could sleep in a non-hospital bed that night.

Since I've had so many catheters (hickman and IJ), so many swanns, so many heart caths - the doctor decided not to put me to sleep. He looked at the scars on my neck and chest and said that I've been through so much that I should be able to handle it. (This also saved time, so he didn't need to track down anesthesiologists, etc.) I was shown a couple different catheters, and allowed to pick which one I wanted, and then was given a quick run-down on what would happen. He was basically going to just pull out the catheter and put in another one along the same track. ... And then it was MY turn to talk about the process. Since it was decided NOT to give me a temporary line for the Remodulin infusion, I was "simply" going to turn off my pump for the procedure. [I will interject here that if I hadn't switched from Flolan to Remodulin in May, this would NOT have been possible - l would have died on the table because the medicine wears off so quickly. So - here's yet another reason God had me make the change to Remodulin!] So, since none of the doctors or technicians in the room knew about Remodulin (other than recognizing the name), it was up to ME to walk THEM through the change-over process. So, I told them what size syringes (etc.) were needed and what kind of time frame I could go without medicine with me staying out of the ICU. I talked about what needed to happen before he started the procedure, and what needed to happen after he was done with his part. Once everything was together we started - and I turned off my pump. I think that act alone raised my blood pressure and pulse, and lowered my oxygen sats. It's been thoroughly ingrained in me that I DO NOT DISCONNECT FROM THIS PUMP. But I had peace - so I did it.

About 30 minutes later he was finished with his part (I'll spare you the details) and it was my turn. I walked them (three extra people came in the room for this part!) through the process of priming the new catheter that was in me with the correct amount of medicine (a little too much could have "coded me" and sent me to the ICU - that happened once a year ago on accident at that same hospital!). Everything went smoothly, and they were all impressed at my medical knowledge (including the right terminology of some pretty technical things related to the process). My response was "I don't know a lot about a lot, but I do know a lot about me." Once the pump was running again, I sat up and was wheeled back to the ER where Aaron was sitting (and looking SO INCREDIBLY NERVOUS). But there I was - alive, smiling, talking, walking, laughing, and the medicine transition had obviously gone well. (After all, I was back in the ER, not the ICU!)

So, the Attending doctor of the ER phoned the on-duty doctor who works with my specialist to let him know that it was all done, and make sure it was okay for me to go home. His response was "They took care of it TONIGHT?!!? I can't believe they squeezed her in!" (The surgery schedule had been over-booked ALL DAY!) But he gave his blessing, and I was discharged! If I wasn't so sore from the procedure, I think I would have danced a jig on the way out the door! I felt SO INCREDIBLY RELIEVED that the danger was over. Aaron was smiling from ear to ear! And we were both starving! So - we got dinner, and checked into the hotel, and just after 10:30 the oxygen was delivered. Sigh - I could sleep! WE could sleep! The next morning we got some personal business done, and after lunch left to drive back home. What was supposed to be a six day ordeal took only about 24 hours! PRAISE GOD!!!

I'm still recovering. I'm still sore. I still haven't gotten a legitimate shower. BUT IT'S FIXED AND I'M HOME!!!! The doctor who performed the procedure told me that (because of lots of details about what happened), it's going to take AT LEAST A MONTH for this to completely heal. But at least it's FIXED!!! The original one was (to quote Aaron) "a hatchet job." The doctor explained to me why it came out, and what he was doing differently to make sure this one stayed in. This one still has the same inconvenient placement, but looks SO MUCH BETTER, AND SO MUCH MORE SECURE. I'm still grieving the ugliness of the "hatchet job" scars. But I keep trying to remind myself that scars are reminders of God's HEALING, not just of painful wounds.

Thank you SO VERY MUCH for all of the prayers, emails, cards, phone calls, Facebook posts.... God was gracious to me once again. This time what could have - SHOULD HAVE - been a long-drawn out painful ordeal, ended up being a drive-thru ER visit. I've been so blessed!

A very relieved,

~ Julia

#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

#48 - Wheelchair Rides

Date Sent: Tue, Aug 11, 2009 at 6:48 PM

I was discharged last Monday evening, just in time to get some gentle hugs from the boys before they went to bed. Alex was SO EXCITED when Aaron told him that it was time to go to the hospital to bring me home - and that Alex could come along! The ICU is nowhere for an impressionable 4 year-old to visit, so he waited in the waiting room with my mother while Aaron and the nurse brought me out. I'll always treasure the "MOMMY!" and huge sigh of relief he let out when he was able to run over to my wheelchair and give me a huge hug! He didn't mind that I was still on oxygen. He was just so relieved to see me - he didn't want to let go. Alex climbed up on my lap, and the nurse wheeled both of us out to the car. We ALL had huge smiles on our faces - even the nurse, who said it's been years since she got to wheel an excited little boy too.

It wasn't until I was ready to be discharged that the docs finally told me how serious my condition was - though I knew that septicemia can kill. I had thought that part of what I was experiencing was because of the battery of drugs that were being administered to me. But alas, no - it was the septicemia running its course. God has spared my life once again. He truly meant what He promised me - that I'm not gonna die as long as I have Pulmonary Hypertension - I will be healed first. But between you and me, I'd be very happy not to have any more "close calls." Most people don't go to the ER just because they've had a fever for 24 hours. But if God hadn't impressed Aaron and me that I needed to go in ... I probably wouldn't be here today.

I've spent the past eight days at home regaining my strength. The first night home I barely made it up the stairs for bed. Today I'm finally really starting to feel like myself - almost. I haven't done any cleaning, laundry, dishes, or bathed the kids yet. But I feel like maybe I can pick up at least one of those duties. It's been a huge blessing that my mother postponed her trip to Zambia to help us (once again!).

I just wanted to send a quick "thank you" to all of you for praying for us during my recent hospitalization. God's brought us through, and I'm slowly regaining my strength. God has truly turned our "mourning into gladness!" (Jeremiah 31:13b)

~ Julia

#47 - Chocolate, Chocolate Everywhere, But Not a Bite to Eat

Date Sent: Sun, Aug 2, 2009 at 9:57 PM

As I type this, I'm sitting (quite comfortably) in a reclining chair in Hershey, Pennsylvania - self proclaimed "Chocolate Capital of the World!!!" For those of you who know me on Facebook, you're already aware what it is that I'm doing here. For the rest, though, let me tell you a story.

On Sunday two weeks ago (July 19th) the boys and I went to spend a week at my mother's (while Aaron worked). As the week progressed I slowly began to feel more and more tired, finally culminating in me spending Tuesday (July 28th) mostly in bed (back at our house). We had several theories as to why it was I was tired, and finally (this morning) were given a definite answer - I had an blood infection (septicemia), and the group of nasty little bacteria had latched onto my hickman catheter (the one going in my heart).

On Wednesday the 29th, after two days of an inexplicable fever, and a sudden bout of nausea and dizziness, we decided it was time for a trip to the ER. So, a lovely neighbor lady (thank you!) came over to watch the boys. A few hours later I was put on oxygen and admitted to the Medical ICU at the Hershey Medical Center. At that point I was admitted to the ICU not because of the severity of my symptoms, but rather because my continual iv infusion requires a more "specialized" approach to care. Since this is one ICU I have NOT visited before, I was more than happy to oblige, so as to help round-out my soon-to-be-official-connoisseur-degree in "ICUs of Western and Central Pennsylvania."

Thursday was worse than miserable, and Friday was even worse than that. Since I was running such a high fever, and had uncontrollable nausea and **ahem ahem**, it was decided by some powers that be, that I would feel better drugged up on anti-nausea medicines. Yeah - um - NO! I'd so much rather puke up my spleen than be so doped up that even though I'm totally conscious, I am unable to open my eyes or move my hand for hours on end. Simply. Unpleasant. This went on for two days until I began to turn the corner and was coherent enough to put up a big enough fight to stop the druggings. (In the hospital's defense, I was throwing up A LOT, and I do understand that they REALLY NEEDED to stop that....)

When I was in the ER, I was started on some pretty heavy-duty antibiotics (one of which is most likely the cause of the **ahem ahem**). I was actually put on THREE antibiotics - one specifically for possible Swine Flu (which has since been ruled out). It turns out that one of the original ones I was put on was the RIGHT ONE for the type of bacteria growing, so Praise the Lord for that blessing! I am now only taking one antibiotic, and that's been switched from an iv to a pill form since my stomach has finally settled.

In addition to the antibiotic running its course, what helped me finally turn the corner, was that on Friday (just before "closing time") my infected hickman catheter was removed. Aaron and I were both QUITE NERVOUS about the process, because we had been through one change over of medicine way back when (in a different hospital) when I was given a bolus (too much) of medicine, and "coded" and was sent back to the ICU. But, God gave the resident performing most of the procedure (who was a former anesthesiologist - and VERY familiar with veins) a steady hand and a clear head to do the math calculations required for correctly priming the temporary tube that's going in through my neck. The procedures were almost painless, and didn't take too long - both of which made me extra grateful for God's hand though all of these experiences.

After spending the weekend regaining strength (and working those nasty anti-nausea drugs out of my system), today I finally sat in a chair (twice now!), washed my hair at the sink with a nurse's assistance, and have been taken off the full-face mask of high flow oxygen, and am now on 4 liters through a nasal cannula. I'm really hoping that another day or two in the hospital will find me breathing regular room air during the day, and only using oxygen to sleep (like happens at home). But, as with everything else, God has that in His more than capable hands!

Sometime tomorrow I'm supposed to be taken down to the operating room, and a new (bacteria-free) hickman catheter will be put into my heart. And then after a round of x-rays to make sure it's placed correctly, the meds will be switched from going in through my neck to the hickman. We're praying for another seamless changeover! It hasn't been determined yet how long I will need to be observed after that takes place, until I can be discharged (or even IF I'll have enough strength right afterward). So, the current hope is that I'll go home on Tuesday, though no one's making any kind of promises. They ARE all trying to get me out of here before our house sells, though. **HUGE SMILE**

Pulmonary Hypertension doesn't go away (that is until God fulfills His promise and heals me - but only He knows when that will be!). ALL the doctors here are ultra impressed that I've had the hickman catheter A WHOLE EIGHTEEN MONTHS without this happening before! My mind says "eighteen months compared to my whole lifetime, that's me going through this A LOT OF TIMES!" Not a pleasant outlook! I would be VERY content NOT to have this happen again EVER!!! So, I'm praying that this is one experience for which God decides "a little goes a long way!"

Anyway - you've probably forgotten your curiosity about this update's title, and what in the world it has to do with septicemia. I've been trapped in Hershey, PA for five days now, and still HAVEN'T had ANY Hershey's chocolate! I hope that if you ever come to visit, the town treats you a little better! **SMILE**

Thank you for your continued prayers as I go through the rest of this hospital ordeal, and then once I'm home and continue to recover. Also, thank you to those who stepped in during this time, and helped out around the house and with the boys. Thank you also to those who offered, but haven't had a chance to yet.

~ Julia