Frequent Flyer

Well, my hiatus from Hotel Northside lasted for exactly 10 days. Sunday night I began having stabbing pain in my upper back, just under my right shoulder blade. Every time I took a breath, the pain was horrifically unbearable. This made it totally impossible to breath normally, so I resorted to taking these short, shallow puffs of air because it hurt less.

I decided to play Dr. Kristi and diagnose myself .... afterall I'm practically halfway to my medical degree, right? Thinking I had a kidney infection, I ignored James' pleas to go to the Emergency Room and insisted that I just wait until the morning to see Dr. Garcia. I remember the last time I had a kidney infection I had the same pain in my back and deep breaths were painful, so this made perfect sense to me.

Apparently my medical skills aren't quite as sharp as I thought.

I went in to see Dr. Garcia first thing Monday morning, telling him I had a kidney infection. Roughly five seconds into the exam Dr. Garcia informed me that my kidneys are located nowhere near my upper back/ shoulder blade area. Furthermore, he said what I was experiencing was actually CHEST pain. I protested, because my chest did not hurt at all; the pain was in my upper back. Dr. Garcia then proceeded to give Dr. Kristi a quick anatomy lesson: the pain I was feeling in my upper back was inside my chest cavity. Sometimes chest pain is felt in the front, and sometimes it is felt in the back, he said.

Hmmm. Who knew??

He then spent the next two minutes YELLING AT ME because I hadn't gone to the emergency room as soon as the pain started. He actually raised his voice and wagged his finger at me! Defending myself, I explained that I truly thought it was just a kidney infection, and yes it hurt terribly but I didn't think pain would kill me. His eyes nearly popped out of his head and he snipped, "WELLLLL, if it's a pulmonary embolism, then yes actually that CAN kill you!!!!!"

OOPS.

Apparently chest pain + shortness of breath + pregnant girl with Protein S Deficiency = pulmonary embolism. Perhaps I should resign my medical license?

As it turned out, my faulty self-diagnosis didn't spare me a trip to the ER afterall. Dr. Garcia sent me straight there. I signed myself in and sheepishly explained to the triage nurse why I was there. She pulled up my name and social security number on the computer and quipped, "Oh my! You're a frequent flyer!"

Ummm, yes I am. Does this mean I get VIP status? Do I get bumped to the front of the line???

No such luck. After waiting 1.5 hrs, I was given a room and a really fantastic doctor named Dr. Funk. Her name was laughable but her medical skills were much better than mine! She was super thorough and openly offered a detailed explanation of everything she was thinking and why she wanted to order certain tests. My kind of girl.

Seeing that I was in terrible pain, Dr. Funk gave me a shot of morphine in my IV. Wow. It made my head super loopy, but sadly it only masked the pain for about 15 or 20 minutes. So I just went back to holding my breath again! About an hour or so later she suggested we try a dose of IV Dilauded. I did find that it helped the pain, and I could finally catch my breath. But again it wore off after about 20 minutes and then my pain level was back to being a 10+++. So after two tries with the Dilauded I decided to give up on the pain meds and just grit my teeth.

Dr. Funk's initial plan was to try and avoid exposing the baby to lots of radiation. Normally she would order a CT scan right off the bat, she told us, but since I was pregnant she wanted to try and rule out a pulmonary embolism using other means.

Two chest x-rays, an EKG, a renal ultrasound, 700 bottles of bloodwork and 8 hours later ......... we still had no answers. The x-rays and ultrasound came back normal, but my EKG was "suspicious" and my bloodwork showed elevated D-dimers, which could possibly indicate a clot. So Dr. Funk decided that we had no other choice but to do the CT scan of my lungs. Exposing the baby to the radiation is not ideal, she explained, but it's a matter of determining which is worse for the baby. Obviously if I have an undiagnosed pulmonary embolism and drop dead, that's far worse for the baby than the radiation he would receive from the CT scan. Seemed like a no-brainer to me! So I consented to the scan.

Incidentally, I had this exact same thing done 5 days after Jamin was born. In fact, when they got me down to the CT room I realized it was actually the exact same radiologist that had done my last CT scan roughly 18 months earlier. Gosh I've really spent way too much time in that hospital.

After prepping me with the contrast dye and getting me all situated inside the machine, Mr. Radiologist proceeds to pull out his clipboard and read aloud a two page long legal disclaimer. So I had to sit there and listen to him inform me of all the risks to my baby because of this radiation I'm about to receive ... birth defects, later development of cancer, up to and including death, blah blah blah. So I burst into tears, signed the stupid paper, and cried through the entire test.

I find it incredibly unfair that I should have to make such a decision. As if I don't already have enough things to worry about regarding my baby?!??

Thirty minutes later we were told the CT scan showed clear lungs! No clots! Dr. Funk decided I must have pleurisy. This is normally treated with anti-inflammatory drugs, but those are a no-no during pregnancy. So we would have to let my body fight the pleurisy on it's own, with pain medication to keep me comfortable in the mean time. I was given a prescription for Percocet and quickly discharged.

Since my return home I've been resting and recovering. Fortunately my pain is drastically improved, and so far I've only had to take 1/2 of one of the pain pills they gave me. So I'm considering myself lucky. A pulmonary embolism would've been a disaster, but pleurisy I can handle.

Looking Back

My dear friend Kim sent me these shots the other day. She came to visit me at Hotel Northside several days ago, and brought along her trusty camera. We had hours and hours of girl talk, which was beyond wonderful. Here's a glimpse into life on hospital bedrest .....

GOING HOME!!!!!

On September 21st I left home for my weekly doctor's appointment. I was planning to be gone for a few hours. Eighteen days have ticked by and now I'm finally returning home!!!

OH HAPPY DAY!

The on-call doctors made rounds this morning and informed me that all is well enough for me to be discharged this afternoon. I am so so so so thrilled to be getting out of this place!

There was some confusion as to whether or not I would require an ultrasound today before they would clear me for discharge, I was getting conflicting information from different people. But as of right now I am told that I will not have an ultrasound today, instead I will come back on Tuesday to see Dr. Mann (as an outpatient this time!), and resume my weekly ultrasounds then. I also have to schedule an appointment with Dr. Garcia for the end of next week. So apparently it looks like my doctors visits have now escalated from once weekly to twice weekly. I also need to try and get rescheduled for Dr. Duncan, the hematologist, who I was supposed to see the day I was admitted here. Not sure if I will have to repeat my bloodwork first before I schedule that, so that is something I'll have to get ironed out but more than likely that will mean two trips to Emory instead of one. But seriously, who cares? I would drive to Kentucky and back at this point in order to get a break from this hospital.

My nurses are busy trying to get everything set up for my transition home. They've been on the phone with Alere, the home care company, making sure my home nurses are prepared for my return. We have to get my terbutaline pump switched over today before I can leave -- right now I'm using a hospital-owned pump which has to be removed and replaced by the home pump I was using before I got here. Ironically the two pumps are identical ... the exact same model and everything ... just that one is hospital property and one is Alere property that has been temporarily rented to me. I am told they cost about $5,000 a piece so it's super important that we don't get them mixed up or else I will be receiving a giant bill! Right now I've actually got two Alere pumps at my house, in addition to the third hospital-owned pump in my leg, which has made me so nervous b/c I was terrified that James would misplace the box at home or Jamin would get into it and decide to "hide" them away in a random drawer somewhere like he does with everything else he discovers. Between the two home pumps and the toco monitor I have about $13,000 worth of Alere's equipment in my bedroom so it's a bit nervewracking to be responsible for that stuff!

We're working on getting my medications situated so that I won't miss any doses during the transition from hospital to home. Right now the plan is for James to come up around 3:00 this afternoon with my home pump, at which time we'll get the infusion site changed and discharge paperwork completed and then I should be FREE! Well ......... free to go straight home and lay still 24/7 in my bed ......... but still a major improvement over my current living conditions so I'll take it. I am hoping if all goes smoothly I should be home around 5:00 or so. Sara is making us a big dinner so we can celebrate with a home-cooked meal. It will be so nice to be done with hospital food for a little while! And I seriously CAN NOT WAIT to see the faces of my little ones when their Mommy finally walks in the door, that will be quite a reward.

Last night before bed I was laying here thinking, "wouldn't it be great if this is the last time I have to sleep in this hospital pregnant? And the next time I'm here is when the baby is born?" But then instantly that thought made me paranoid because it would, of course, only be great if the baby is close to full-term next time I come back! If I come back in two or three weeks then of course I want to still be pregnant. Ughh, if only my brain had an off switch. Or at least a pause button. I need a break from myself.

I had a meeting last night with one of the NICU nurses. She came down to the HRP floor to chat with some of the bedrest patients, and spent almost an hour in my room. Basically the idea is that she would answer our questions and give us some basic information so that in the event that we eventually need her services we will be a little less confused and scared. Being the type of person that thrives on information, I actually found this to be really helpful because I do feel more prepared now after talking with her. She actually offered to put me in a wheelchair and give me a "tour" of the NICU, which I declined, because that felt a little too scary. I don't want to actually see it unless I have to. But talking about it was good. She gave me a lot of information about how the NICU works, how it's organized, and what I could expect.

The policy here is that any baby born prior to 35 weeks gestation is automatically admitted to the NICU, regardless of their weight or condition at the time of birth. So even if we make it to Dr. Mann's current goal of 34 weeks, we would still have to do a NICU stay for at least 1-2 weeks. I am grateful to know this ahead of time, because I can get mentally prepared now. In my mind, I can already "plan" for it at least in theory, and then if it happens I won't have to panic as badly. And of course, if it doesn't happen, then it will just be a giant wonderful bonus! When you have a Kristi-brain you have to do some mental tricks sometimes and planning for worst-case-scanario is one trick I've found that actually seems to help reduce my stress a little bit.

A million thank-you's to everyone who has prayed for us, sent notes of support, visited, sent food, babysat, and loved my family over the last several weeks. We are so incredibly grateful for your outpouring of generosity. Please please please continue to pray for us! We are 25weeks 2 days gestation today, so we are certainly not out of the danger zone yet and we have a long road ahead.

Coming Unglued.

Today marks 17 days in the hospital, and my extended stay here is really starting to take its toll. I’m not sure how to accurately describe it, other than to say I am utterly and completely exhausted in every way imaginable.

My physical condition has really deteriorated over the last 3-4 days. The baby is fine, and my cervix seems to be holding this week so I am celebrating those accomplishments, as they are really the two most important things at this point. Aside from those positives, though I am really struggling physically. I am pitifully weak …. the “I-can’t-possibly-walk-myself-to-the-bathroom” kind of weak. Upon standing, my legs immediately begin to burn and it takes incredible effort to move them. Taking ten steps feels like the equivalent to running a 5K. I can no longer stand up for the short time it takes me to brush my teeth. Instead I now have to sit down while I brush because I literally can’t hold myself up for 60 seconds. Even laying still in bed feels exhausting, I have this tingling all over and a heaviness in my chest that makes breathing feel like a chore. I ache everywhere. I just don’t feel normal in any way.

This has been the subject of several discussions of course, first with a few nurses and then with my doctors. Everyone seems to agree that what I‘m feeling is a result of “de-conditioning”, or my body just sort of shutting down due to not moving for such a long period of time. I’ve been in bed for 7 weeks now, though the last 2 here at the hospital have been way more extreme that what I did at home, as I am literally lying still for all but maybe 15-20 minutes a day. I have leg exercises, which the physical therapist taught me the first week here, that I am doing every day in bed. Though I am told the exercises will not really improve my condition, I still do them because I’m hopeful they will slow down further deterioration.

I have a hard time believing that I could feel this drastically horrible just because of “de-conditioning” …. this is not my first rodeo and I’ve done many long weeks of bedrest before and never felt this bad. But there doesn’t seem to be any other obvious reason … my blood pressure is staying up around “normal”; my hemoglobin and hematacrit are low but not insanely dangerously low. I’ve decided that perhaps it’s simply because my bedrest has never been this drastic before now … in the past I’ve always managed to get up for a little bit each day, whether it was throwing a load of laundry in the washer or walking downstairs for dinner. Now I am laying constantly, 99.9% of the day and I suppose that must be what’s making the difference in the way my body has responded.

Emotionally I am finding myself in similar territory. I mostly swing back and forth between moments of intense frustration, sadness, and overwhelming anxiety. I am annoyed and angry at my body, my circumstances, my confinement, and my inability to do even simple things by myself. I am homesick and sad because I miss my kids, my husband, and my old life. And I’m nearly paralyzed with worry and fear because I can’t quite seem to shake the feeling that something awful is about to happen.

Fighting the fear has become a daily battle. I mostly try to not think about the possibilities, and often I’m successful with that. But there are moments when it catches up with me and the anxiety is too strong to ignore. I am terrified at the thought of having a micro-preemie, or worse -- another stillbirth, and I find myself over-analyzing every bump, gurgle, and twinge I experience … Is my water breaking? Am I bleeding? How many contractions have I had this hour? Why isn’t the baby moving? It’s like waiting for the sky to fall. And I realize that, here I am again, now 25+ weeks into the pregnancy and I haven’t allowed myself to bond with this baby and I refuse to even give him a name for fear of “jinxing” it. As if that makes one bit of sense.

I also have equal amounts of worry for my family … this whole experience has been so hard for James and Gracie and Jamin. What condition will my family be in when this is all over? Will my kids be scarred and traumatized because their mother was absent for so long? Will my husband survive the stress of being thrown into single parenthood? Will Gracie be able to focus in school? Will Jamin start acting out in resentment? Already I can see the little cracks forming but I feel helpless to stop them. My kids appear to be struggling a little more this week … Gracie with some attention-seeking kinds of behaviors and Jamin melting down whenever he is separated from his dad and throwing frequent temper tantrums. And then there’s James … he is so strong and he puts on a brave face, but I can see in his eyes that he’s struggling and it hurts me.

I am desperate to go home and I’m hoping that perhaps once I get there some of my physical and emotional conflicts will begin to lessen. I had my 18th ultrasound two days ago and Dr. Mann was pleased … my cervix has lengthened back up to 2.5cm. The polyhydramnios has improved a teeny tiny bit. The placenta has not moved since last week, but my docs are now saying they could attempt a vaginal delivery based on it’s current location.

After the ultrasound, Dr. Mann said she was initially planning to keep me here until I hit 28 weeks, but if I wanted to “try” going home for a bit she would allow it. So we are cautiously planning for discharge sometime tomorrow (!!!!!) as long as my symptoms stay stable. I CAN NOT WAIT. I am trying not to let myself get too excited, in case it doesn’t happen, but that’s really hard to do of course. She warned me that there is a high likelihood I will end up back in the hospital again, and seemed fairly certain that we should anticipate that happening sometime in the next few weeks. From what they’re telling me, most likely I will have to return sometime soon for a magnesium sulfate wash. The possibility of needing this is highly distressing at the moment because I’m told the side effects are awful. More on this later. For now I’m pulling the denial card and it’s working quite well so I’m not ready to give that up yet!

Pray for us.