I have had lots of requests from people recently to explain what's happened in our lives. We've been sending email updates since I was hospitalized in February of 2008, but it can be hard to piece everything together based on them. So, I decided that it's time to give some chronology - at least of the time when I was in the hospital, and correct some of the understandable misunderstandings that are floating around. So, here are the highlights.
At my scheduled obstetrician appointment on Thursday Feb. 7th (I was 32 weeks pregnant), I told him with lots of tears that something was wrong - really wrong. With my previous pregnancy (Alex who is now 3) I developed HELLP Syndrome at the end of the pregnancy. They didn't know it until 18 hours after he was born. That was when I suddenly had two seizures (because of HELLP - not because of epilepsy) and almost died - they even pulled out the paddles but fortunately didn't have to use them. Because of that medical history, my obstetrician wanted to do some tests (urine and blood work) to see if I was developing HELLP again. The results weren't conclusive, but said that it was definitely a possibility. Up to this point in the pregnancy I had only gained 6 pounds. He decided just to monitor me.
The following Thursday - Valentine's Day 2008 I had another appointment with him. Aaron came with me to this appointment (so did Alex since we didn't find a babysitter). At this appointment, the dipstick they did on my urine sample said that I definitely had high amounts of protein in it (a sign of HELLP Syndrome). I had gained an additional 7 pounds of fluid retention this week alone (more than I had gained the entire pregnancy up to this point!). Also my blood pressure was high (for me). The same doctor who saw me the week before (who happened to be the Chair of the whole Obstetric Department) called the hospital (which was just down the street) and had me admitted to Labor and Delivery immediately. They were very concerned that I was developing HELLP Syndrome. Once admitted to the Labor and Delivery unit at the Hershey Medical Center, I was to do a 24 hour urine (where all of my urine during that time period was collected in one large bottle) to get a more accurate reading on how much protein and other substances were present. This test also showed high numbers which wasn't good. I was then 33 weeks pregnant.
On Friday - about 15 minutes after the 24 hour test finished Aaron and Alex came to see me. Aaron's father arrived soon after to watch Alex so that Aaron could be with me. About 15 minutes after they all arrived, my face was very red, and I thought I was going to pass out on the way from the bathroom back to my bed. So Aaron rang for the nurse and told them something was wrong with me. Nurses came in and tried to figure out what was wrong. They put a pulse-ox on my finger and it read 69 (it should be at or close to 100%). They assumed the machine must be broken, got another one - which read 72. We immediately sent Alex home with Grandpa, and just after he left the room it filled with nurses and doctors.
I spent a very long weekend in the hospital undergoing seemingly endless testing of all sorts to try to determine what was wrong with me. At one point the doctors thought I had a pulmonary embolism (blood clot in my lung) even though the cat-scan didn't show one. It was later determined that I did not have one. Over the weekend I continued to retain fluids, and was given a constantly increasing amount of oxygen - finally though a face mask so I could get more than the nasal canula could give. I was no longer able to get out of bed, or even to recline from an upright sitting position or the oxygen levels in my blood would dip dangerously low. (Interestingly enough - the protein in my urine disappeared over the weekend. It was like God put it there so I would be hospitalized and they'd discover my real problem, but then took it away once they realized that something else was going on.)
Late morning on the following Monday a group of doctors came in and told me that they finally had a diagnosis. I have pulmonary hypertension. One of the doctors wanted to transfer me to the ICU immediately and start me on the iv medication that I'm on right now, but the doctors couldn't agree. It was very possible that the iv meds would do serious damage to my baby. But they didn't think I'd survive if I delivered him before they started the iv meds. They couldn't agree, and finally decided that either way they didn't know that either one of us would survive this ordeal. They wanted to transfer me to another hospital with more (or rather, ANY) experience with this. We were given about 30 minutes to decide what to do because I continued to decline. The doctors phoned Johns Hopkins and U of Penn (in Philadelphia). One of them wouldn't take me, and the other wouldn't return the phone call. So, my mother suggested they try Pittsburgh. The doctors phoned, and there were two hospitals who agreed to work together. Aaron and I tearfully prayed about it, and agreed to go. For those of you who don't know the Hershey Medical Center, it's a huge teaching hospital that patients are transfered TO not out of. It took them a long time to even find the necessary paperwork to transfer me - my nurse told me that she didn't think anyone had EVER been transfered out of the Obstetrics Department. They wanted to send me via Life Flight because I was so sick, but it was icy outside and they had problems getting a helicopter with a de-icer for the propellers. So, we had to take an ambulance for the 4 hour trip. This ended up being a God-thing because Aaron wouldn't have been allowed in the chopper, but was allowed in the ambulance. The ambulance crew was about to refuse to take me (which they ARE allowed to do) because I was so sick they thought they couldn't handle me if something happened. But after meeting me, they "had a good feeling" and agreed. I remained stable the entire way there.
I was admitted to the ICU at Magee Women's Hospital in Pittsburgh at about 1:30 am on Tuesday morning February 19th. I spent about 45 minutes telling one of the nurses my medical history while they hooked up all the monitors/ivs/etc. Just after I told them everything they needed to know they told me to stop talking because my oxygen saturations were dropping too low. A doctor then put a swan in my neck (like a permanent right heart cathader). This is only supposed to be done with the patient lying flat, but I couldn't do that and still breathe, so he did his first ever with the patient sitting up. The swan would tell the doctors the actual (not guessed) pressures in my lungs - which were registering 97 (pulmonary hypertension starts when your pressures are 20 - they are supposed to be 12-17 for someone my age). Just after the swan was done the doctors needed to intubate me because I could no longer breathe on my own. The next thing I clearly remember was several days later (and in a different hospital's ICU).
I think I was intubated around 3:30 am. The ICU doctor spent the rest of the night contacting dozens of specialists from at least two hospitals about how to care for me. Several times during the night Aaron and his parents (who were in the waiting room) were told "to prepare to call family" because I wasn't stabilizing and they were losing me. Later that morning there was a conference of lots of doctors meeting down the hall from my room talking about how to treat me. This conference was still going on when I got to the point that they had to deliver Harrison "now or never." So, they all came down to my ICU room and got started. During the emergency c-section (about 8 hours after I arrived) there were over 30 people in the room (from ICU, NICU, cardiology, pulmonology, obstetrics, anesthesia, and nurses too). They actually broke the sliding doors to the room because there were so many people trying to crowd inside all working to keep Harrison and me alive. I'll shorten the delivery story just to say that it wasn't a "normal" c-section. One example is that my bed was at a 45 degree angle to help drain blood away from my heart. Long story short - I survived and Harrison did great. He was born 6 weeks early and was only 5 pounds. He had to go to the NICU for 9 days while he learned how to suck a bottle and gained weight. By the time the next hospital I was being transfered to found room for me in their Cardiac ICU, it was the next day, so I was transfered to UPMC's Presbyterian Hospital (3 blocks from Magee) on Wednesday.
Once at Presby they started me on the iv medication (Flolan) that opens the blood vessels in my lungs. This was quite the ordeal. They increased the dosage as fast as they could without having the blood pressure in the rest of my body drop dangerously low. I began to have some memory during this experience (I was on strong conscious sedation because I was intubated and that's not the type of experience one wants to remember). I was so glad that the doctor in Hershey had explained the side effects of Flolan to me (his blunt explanation actually terrified me), so that when I "regained memory" in Pittsburgh I knew that the hellish experience I was going through was expected and wouldn't last forever. By Friday they finally decided to take out the breathing tube and see how I did. My oxygen sats dropped, but with a face mask pumping oxygen to me at the maximum volume I did okay. The most a nasal canula (the kind of oxygen tube with the two little prongs in your nose) can give you is 15 liters of oxygen per minute (I think). The oxygen put out by a face mask is measured differently, but 15 liters from a nasal canula is about 35 liters on a face mask. I was at 95 liters/minute on the face mask for the next week. I still had to sit straight up or my oxygen levels would drop dangerously low.
After being in ICU for a week, I was finally moved to a step-down unit (not a regular room, but at least out of the ICU). About 24 hours after I was transfered, something went wrong when they changed over my Flolan (the iv that I'm continually on) to a new bag. They still don't know how it happened, but I must have gotten a bolus (extra amount) of possibly one or two DROPS of the medication. About 30 minutes later (the time it took it to finish making its way up the iv tubing), I started to feel like the world was coming to an end. I went from feeling "normal" to thinking I was about to die in less than a minute. Aaron got a nurse immediately, and as soon as someone came in I was "coded." This means that they sent a STAT (which means faster than "as soon as humanly possible") message over the hospital intercom for people to come running and help. Aaron was sent out of my room as it filled with doctors, nurses and respiratory people who were trying to save me. After a while the doctors began to stabilize me again, and after another swan (a special type of tube) was put back into my lungs to monitor it's pressure, I was moved back to ICU for another day. This experience was terrifying for all of us to go through. (Now I definitely know what it feels like to have too much medicine in case there's another "oops"!)
On Thursday, February 28th (9 days after he was born) Harrison had gained enough weight and was eating well enough from a bottle that he was discharged from the NICU and ready to go home. I wasn't. So, some friends from our church (who had been watching Alex all this time) drove out to Pittsburgh to take Harrison home with them (they have 4 kids of their own - so their house must have been extra chaotic with our additional two!). Before leaving town, Harrison was brought to my hospital and we had about two hours to bond as a family before he went the four hours back to Mechanicsburg. This was my first chance to meet my son that I really remember (I have a fuzzy snap-shot image memory from the day after he was born).
I wasn't ready to be discharged yet. I hadn't even walked by myself to the bathroom yet, and had been "promoted" from the full-face mask oxygen to a nasal canula just before Harrison came (in time for pictures - yeah!). So, I spent a long weekend gaining strength and stamina. After the all the arrangements were made for visiting nurses, we were trained on how to mix the iv medication ourselves from a powder state, I was finally discharged the following Tuesday, March 4th. When I went home I was still on constant oxygen and it took me several days before I was able to climb the flight of stairs at our house. An hour or so after we got home, Alex and Harrison were brought back to our house. We had a very tearful, very excited reunion. All together, I was in the hospital almost three weeks. Aaron and my mother took turns staying by my side the whole time - the staff was so nice to let them do that. That's not usually allowed in an ICU room.
God has brought us so far over these past five months. It was six months ago this week that I finally admitted I didn't have the strength to clean my own house (two weeks before I was hospitalized) and finally agreed for my mother-in-law to drive the hour and a half to our house to do my cleaning. Today a lovely neighbor came to watch Harrison (while Alex was playing at a friend's house) and I did ALL THE CLEANING BY MYSELF! I doubt I'll push through the tiredness next week to do it alone, but at least I have done it ONCE. Every day is full of new hurdles and new lessons learned. I wouldn't wish this experience on my worst enemy, but the personal and spiritual growth it's produced is well worth it. Hope this helps explain what happened while I was in the hospital(s) a bit for you, and answers some of the questions I've been getting recently. Until next time.....
~ Julia Feitner
No comments:
Post a Comment