The Ordeal- Part 3

I came home from Houston and still had some very severe headaches. I emailed the surgeon who quickly responded that quite often CSF leaks will cause headaches for a week or so after being resolved. I pretty much took pain medication and slept for the next day. The day after I sat downstairs for a while and then took more pain medication. I still couldn't eat a bite. I was tempted with all kinds of yummy foods (even a diet coke) and I wasn't slightly hungry.
That evening (Saturday night) I was feeling really anxious and couldn't sleep. I started feeling nauseus and scared when I couldn't feel the tips of my fingers. I roused Jason at about 1:30 AM and said I thought we should go to the ER. We left the kids with Kristie, Mom, and Dad who was up for the weekend and headed to Yale.

When we arrived there wasn't anyone around to help us, so Jason went back into the ER and said, "My wife had brain surgery a week ago and isn't feeling great." They had me back in an examination room so quickly it was unreal. Initially the doctors asked a lot of questions about the surgery and seemed to think that I might have adrenal insufficiency. They tried to take blood from about 5 different veins before they finally got some. I went in for a CT scan, they checked out my neurological responses (which were fine).

After about an hour, the resident returned and told me I was being admitted because my sodium level was 119. (Normal levels are between 130-145) I was then asked a million questions about what had gone on between my surgery and coming to the ER, because in their minds there was no way sodium could go that low in the day and a half I was home. They also kept asking why I came in to the hospital and I told them it was because I couldn't feel my fingertips. (They didn't seem to think this was a good enough answer...) They kept asking if I had headaches and I said, "Of course I have headaches, I just had part of my pituitary removed!"

I was admitted to a normal floor at Yale and was seen rather quickly by a endocrinologist resident. She asked all of my medical history and then tried to have me drink some liquid form of sodium. One sip made me throw up all over the place, so we didn't do that again. She then said I was to be on a water restriction to see if that would raise my sodium levels.
In the morning a team of endos came in and questioned me about my surgery and if I truly had had Cushing's because they didn't see any red stretch marks or a "buffalo hump." They then said they were trying to get a handle on my sodium levels so they were going to raise my cortisol supplements to 4o mg in the AM and 20 mg in the PM. I still wasn't eating and I felt miserable. People kept asking where I hurt and I couldn't tell them. All I can say is that everything felt wrong and everything hurt.
I asked the endocrinologist to page Dr. Friedman to let him in on the situation and get his opinion. She said she would, but it was too early in the morning there. I asked again about noon our time and she said she would but didn't. I asked again around 4:00 pm and she said they really had a good team here, and they would keep him informed. At 4:30 pm Jason paged him himself, gave him the run down on what was going on and then walked into the endo conference room where 7-8 doctors were talking about my situation and he handed the phone to the chief. He told me if looks could kill, he would have been a dead man.

The endos all came in about 20 minutes later and told me that Dr. Friedman was a very well respected doctor and that he agreed with their treatment plans. (Dr. Friedman also called Jason back, and said he knew the chief of endocrinology personally and that they were doing what he would do.) Unfortunately, my sodium was continuing to drop so I needed to be moved to the Medical ICU and be monitored more closely. I was moved upstairs to a lovely room around 11:00 pm. As soon as I arrived I was told that I needed to have an IV port put in. The best way I can describe it is that they needed an IV that went directly to my heart because the saline they were going to try to put in my body would burn the rest of my veins.

At that point my Mom called Jason and he came over to the hospital to be with me. I was told by the doctor that this would be really uncomfortable, but that it had to be done. ( I have now learned this is code for "this will hurt like crazy".) Jason had to go into the waiting room and was told that it was about a 40 minute procedure. I was laid on the operating table and they tried to get the port put into my right jugular. They would numb the area with Novocaine and were using an ultrasound to make sure they were in the right place. I had a sheet put over my head to prevent infection and I held on to one of the nurses hands as hard as I could. After about an hour of being poked and prodded I had the most horrific pain. Apparently part of my carotid artery was punctured and the nerve shot pain down my neck all the way into my arm. I laid there as tears just rolled down my face. They immediately stopped and put as much pressure on my throat as possible.

No one really moved or said much for about 10 minutes. Then one technician asked if I was crying because I was scared or in pain. He told me, "I told you this would be uncomfortable." I looked at him and said, "I have give birth naturally 2 different times, that was a picnic compared to this." I did get him to smile.

After that small disaster, they decided to try to thread that catheter up from my groin. Not much more fun, but bearable. Finally, Jason was able to come back into the room. (Poor guy didn't know why a 45 min. procedure had taken 2 and half hours.) He told me I looked like I had been bitten by a vampire. I was immediately given some form of saline directly into the port in my groin. I was told that it had to be done a very little bit at a time to prevent seizures. By now it was almost 4 in the morning and I did sleep a very little bit.

The head of the ICU came in around 7:00 AM and told me that my sodium had been down to 111 last night. ( I was later told that the reason I wasn't put out for the port insertion was that with sodium that low, I wouldn't have made it through the surgery.) By that morning they had raised my sodium to 113 (slow and steady just like they wanted). Even with that little bit of sodium raised I felt better than I had in days. My headaches were almost gone and I even ate a little bit.
The worst part was that I had to stay on my back to keep the catheter from rupturing any internal organs.

I stayed in the ICU until my sodium levels were over 130 (6 days) and then was returned to the main floor for another 2 days. I had wonderful nurses in the ICU. They were so attentive and caring. One angelic nurse named Heather came on at midnight and noticed that I couldn't sleep and she asked if she could give me a little spa treatment. She bathed me, rubbed lotion all over, and bless her heart...she even shaved my legs! She stayed with me talking until I was able to go to sleep. Truly a tender mercy!

Now for those of you who are as depressed as I was at this point I want to point out my truly great blessings!!!

The evening I had the port put in, I truly was feeling so alone and so abandoned. I remember thinking, I have people praying for me, fasting for me, wishing me well all over the world and there isn't any point. I am having horrid complications and more pain that I had ever had. I must say I was feeling bitter for a couple of days. However, on the day I was released from the ICU my nurse was telling me what a happy day it was. I agreed, but asked him why. He said, "It isn't often people leave this floor without some aspect of their lives being totally altered forever. You are going to be able to resume your life as you knew it."

I joked with him about needing my room for the "sick" people and he touched my face and said, "Honey, you were as sick as they come." He told me that there had been 5-6 doctors constantly talking about my case. They had never seen someone with sodium as low as mine who didn't end up with permanent brain damage. They couldn't understand why I didn't have seizures, and they couldn't explain it when they spoke to colleagues. I was sent down to a room on the main floor and had a lot of family call me. Kari told me she had just heard that a congregation in Lesotho (where she travels often for work) had been praying for me that week. Lacey told me she had put me on a prayer roll at her church. My lovely Uncle Dan who has so many of his own problems, had put my name on the rolls at the temple. A congregation of Jehovah's Witnesses that are patients of Jason's had a prayer meeting for me. Various cousins and in-laws told me they had been fasting a praying for me.

I cried in thankfulness and humility for most of the day.
Here I was feeling abandoned and alone and I truly had a miracle worked for me. The doctors just think that I am a medical marvel, but I know better. I know that our Heavenly Father loves us individually and that even though things are often very hard our prayers are answered. He hears our prayers whether offered in whatever faith or language they are given and I grateful for those of you who have and continue to pray for me and my family.