I've been eager to write this blog entry for a couple of days! I've been hospitalized at Jackson Memorial Hospital since Friday evening. Let me rewind to Thursday evening when I discovered that the head of my neurosurgery team was out of town for the long weekend. My step-mom, Ili, went to work on contacting him and with her usual diligence she was able to reach his office and they contacted him personally. He recommended that I see the neuro otologist on my team because he is an expert in the neck area as well. When Friday rolled around Ili was not willing to risk that the long weekend would pass without me seeing a doctor so she took the liberty (and then apologized profusely) of calling the doctor's personal cell number and explaining to him the situation. He was very gracious and told her to bring me right over to his office. Luckily my mom was already over at my house and she drove me to the doctor's office right away. The doctor took a look at the MRI and his first thought was that it looked like I had a blood clot in my jugular vein. The MRI report revealed that in addition to the clot there may also be some additional tumor extension down my neck. The doctor decided that it was important to have me hospitalized to run additional tests and of course to treat the blood clot if that was in fact what was going on.
The floor in the hospital where the doctor's team works was full. They did not even have a bed available much less a room and a private room was out of the question. They informed me that a bed would become available in the early evening but I would almost certainly have to share a room with someone else. Of course Ili sprang into action and called my professor who works at Jackson to see if there was anything he could do to expedite the process of admitting me into the hospital. We were in a building without cell phone reception so she had to call my professor from a land phone at the doctor's office. I later learned that the call did not register on his phone. Ili left him a message and then we went down to the admitting office in Jackson. They informed me I could go home and get some rest (it was about 3pm at that time) and they would give me a call as soon as a bed became available for me. So back to my home my mom and I went. I thought about trying to call my professor again from my phone or texting him but I figured he was busy and he would get back to me whenever he was able to check his messages. Around 8pm I received the call from the hospital that a bed was available. Nate, my mom, and I hurried over and Ili met us here.
As Nate and I walked over to admitting the UM/Jackson campus was dark and quiet. There was hardly a person in sight. We entered through a different building to take an inside route to the admitting department. As we walk through the doors I see my professor coming down the hall. I can't explain the relief of walking into the building and seeing a familiar face. Not just a familiar face, the only face that I know could and would be eager to help me in any way he could. He had not received Ili's message so he was wondering what I was doing in the hospital at that time. I explain to him that I am being admitted and of course he wants to know why I hadn't called him. I explain that I figured he was busy and of course he tells me to please never to be in this situation again without getting in touch with him as soon as possible. He springs into action right away to find out as much information as he can and then to make sure that I am placed in the best hands possible with the most attentive nurses available. He walks us all up to the 14th floor (the floor where my doctor's team works) and I am taken to a bed that is in a room with another woman. The woman looks to be in pretty bad shape and she has her husband staying in the room with her. This is against hospital policy because when two women are staying in the same room only another woman is permitted to accompany the patient overnight. My wonderful professor starts working his contacts and trying to get me a private room. According to the staff, there are no private rooms available. But his perseverance opens doors - a HUGE door. There is a room (technically a suite) on the 14th floor that is the benefactor's room. This room is not normally open to patients. It is not even prepped to receive patients. All of the furniture was placed in the center of the room and it required about 2 hours to get the room ready for us to occupy it. Someway, somehow, my professor managed to get me moved into this amazing room. There are not enough words that I can say to express what a difference this has made in my hospital stay - what a blessing this has been for me and my family. Being in this room has completely transformed this entire experience. My professor called our chance meeting that night synchronicity. It definitely was synchronicity but for me it was also nothing short of a miracle. This is a huge campus. The chances of running into anyone you know are slim to none to begin with. I really was and am so incredibly aware that I have angels working overtime for me. Not only is he one of my angels - he has been one of my angels through this whole ordeal, really helping me in any way possible throughout this journey but that night there was another force at work to place us in each other’s path. Incredibly, he also told me that he never takes the route he took that night. He just happened to decide to walk a different path for no particular reason at all. Syncronicity is an understatement!
Ok so let me describe this amazing room that I'm in. It's a corner room with views of the city skyline all around. It has wood floors, a kitchen area with marble counters and back splash, a refrigerator, a microwave, a couch that is a pull-out bed, two recliners, a table with two chairs, an executive desk, a walk in closet, a beautiful bathroom with a very spacious shower, a flat screen TV, and of course a hospital bed. It feels much more like a hotel room than a hospital room.
Once my room was ready I was transferred in and then the nurse came over to put in my IV. She collapsed two of my veins. This has never happened to me before. It was very painful and my arm was pretty badly bruised. She felt awful. I felt awful for her and terrified for me. I am a huge chicken for all things painful so I was shaking like a little leaf with pain and fear. I knew I had to get an IV so whether we collapsed more veins or not, skipping the IV was not an option. The needles they were using were huge! I ask the nurse, "Can't you just use whatever IV you use for babies? Please give me the IV that can be used on a fetus. That size would work for me." Luckily the nurse called over someone who was very good at putting in IVs and the third attempt proved to be the charm. I was telling Ili and Nate that if I had been given the option of no collapsed veins and a smooth IV insertion but I would have to stay in the tiny shared room or I could endure the collapsed veins again and be in the room I am in, I would choose the collapsed veins. The collapsed veins experience in that tiny dreary white walled room would have been a different experience altogether.
I went to sleep that night with a bruised arm but with a heart overflowing with an incredible amount of gratitude! I fell asleep having a conversation with God. I was so excited about how much I could feel His presence in my life that night that it took me a long time to fall asleep.
Saturday morning I had a sonogram of my neck, a lung X-ray, and an EKG. The sonogram revealed that I do in fact have a fairly large blood clot in my jugular vein. I am currently being treated with heparin to break up the clot and they also have me on a steroid to decrease the inflammation.
Saturday was a wonderfully hectic day. There was a nonstop flow of friends and family stopping in (of course this incredible room can accommodate them all). We also had pastries and doughnuts for the nurses, doctors, and staff so they would stop in on their snack breaks. I was showered with flowers, balloons, get well wishes, and all the love a girl could need and want to get her through a situation like this one.
At midnight I had a CAT scan to check and see if the tumor has extended down my neck. We are still waiting for the neuro radiologist to take a look at the results. If they do find that the tumor has extended down, I may require surgery, but we won't know the full scoop until later this afternoon.
This morning, the nurse informed me that I would need another IV because the steroid and the heparin cannot be admitted through the same IV. As you can imagine I mentally went into panic mode. I quickly started begging that they administer the steroid orally. Luckily my wonderful nurse was able to get the doctor to agree to my request. Unfortunately the only downside is that I need to have my blood drawn every 6 hours to make sure they get the dosage of the steroid correct. However, they are monitoring my blood levels for another reason as well. My tumor is highly vascular and since I am on blood thinners there is a risk of bleeding. I can tolerate the drawing of blood every couple of hours. They use a tiny butterfly needle instead of the monster needles that are used for the IV. I feel very lucky to only have one IV instead of two.
I am in very good spirits and luckily my pain is being fully controlled. Right now the expectation is that I will be in the hospital for quite a few more days. If it turns out that I do need surgery then we will reassess the plan. I am feeling extremely grateful to have so much support from my wonderful friends and family. Thank you from the bottom of my heart for your prayers, your thoughts, and your well wishes!