This is Kirsten asleep this morning a home two days after her two surgeries. She looks so restful and peaceful. I like how she has her right arm over her head. She did have a great night sleep.
This post may be boring and long to read but it's for my benefit to document so I will remember things better.
Kirsten had two surgeries on the morning of September 20, 2011 at the Baker Center Surgery Center across the street from Tacoma General Hospital. The first surgeon, Dr. William Morris removed her old VNS battery and replaced it with a new battery. That is located in her upper left chest below the collarbone and above her breast area. The second surgeon, Dr. Richard Wright, removed her gall bladder and appendix.
Kirsten has been struggling with nausea and vomiting for two years. It was determined that her gall bladder needed to be removed. It was full of stones and slightly inflamed. They also thought it was in Kirsten's best interest to remove her appendix as well. These decisions were made due to a hospital stay Kirsten had in mid-August.
I'll take a step back.... Kirsten had been struggling with vomiting June, July and into August. I had asked her doctors what to do and no one seemed to want to claim responsibility. First I was told it had to be one of her seizure medications, the Lamictal or generic Lamtrogine. I didn't think so but I jumped through their hoops. We weaned her off the Lamotrogine and guess what, still throwing up, Nothing is staying in Kirsten's stomach as she throws up everything I put in. She is losing calories, body strength and muscle tone. I'm feeling desperate and praying with all my heart that something can be done. Kirsten's Primary Care Physician (PCP Dr.) thinks it too is either digestive or seizure medication.
On August 18, 2011 Kirsten had an appt. with her epileptic specialist, Dr. Laura Hershkowitz, and she's a great doctor and I love her. She's direct and to the point and tells it like it is. I like that. She honestly says that since we've weaned her off the Lamotrigine and Kirsten is still vomiting she really felt it was more a mechanical/physical problem and not medication. Kirsten's blood pressure was 85 over 54. It's been that low before.
Now I am on my way home from Tacoma, and it's about 4:30p.m. I decide I better pull off to the side of the road and use my cell phone and put a call into Kirsten's gastroenterologist and see if we can get her in quick. In order to get an appt. with any specialist it always takes a good month and we didn't have a month, things are serious.
I pull off the road and make a call because the clinic s are all going to close in 30 minutes. The nurse wouldn't even allow me to make an appt. because she was so worried about Kirsten's low blood pressure she instructs me to take her immediately to the ER. Now it's 4:50p.m. and I make another call to her PCP doctor, Dr. Daniel Wells-a terrific doctor. I know that things run much smoother if you have a doctor okay an ER visit that may result in being admitted into the hospital. Her PCP Doctor practices at Good Samaritan Hospital in Puyallup, not at Tacoma General Hospital in Tacoma.
I had just had Kirsten in two weeks prior to see Dr. Wells because of her nausea and vomiting. At that visit she ended up having a UTI. Now, here's the catch, Dr. Wells is leaving for out of town. He accepts my call and makes arrangements for her to go into ER and possibly be admitted. He asks me if she is really sick. (Hmmm, now why would I be calling if she wasn't really sick. I never abuse doctor visits at the drop of a sniffle or sneeze. I only go in when it's serious. Go figure.) I assure him that she is 'very sick'. It's now 5:00p.m. and I'm 10 minutes away from the hospital. I go in and they are expecting us, whew! Long story short, she is admitted and spent 6 days in the hospital. Her red blood count was so low they gave her 2 units of blood; she's A+. Unfortunately while we were in the hospital she has a full blown period. She has them once a year. Her hematacrit (red blood cell count) went from 27 to 21 and that's why she had two units of blood. Her count went up to 35.4!
While Kirsten was in Good Samaritan they scanned her vital organs and found that her gall bladder was full of gall stones and slightly inflamed and said it needed to come out. Well, I knew her Vagus Nerve Stimulator was about to die so I wanted to have both surgeries done at the same time. Her neuro surgeon doesn't operate at Good Sam nor (I found out later) did the Gastroenteralogist Surgeon, both operated at the Baker Center and Tacoma General Hospital. So we scheduled the surgeries for a few weeks later.
Side Note... While she was in the hospital they said she was very malnourished. That made me feel awful. Am I a bad parent? 'No.' Have I not been telling all these doctors for '2' months about her being sick and her vomiting and not holding anything down. She had not lost weight so much as nutrition and health. Won't somebody claim responsibility and figure out what's going wrong? Do you appreciate how I feel as her mother? Believe me, I told them, I've tried everything diet and nutrition wise and I am desperate for answers. Why does she have to finally be admitted and then it comes to your attention that , wow, she's really sick and something is wrong.'
Back to the present...
Kirsten's two surgeries went very well. Neil, for once, was not out of town on business or had meetings, etc., and was able to come with me. I appreciated his presence and support. I have been fasting and praying all along for these surgeons and surgeries and Kirsten. I have had the wonderful support of our family and friends. I have felt 'peace and calm' for this surgery. Even Kirsten looked confident and at peace. When we go see her doctors she is there but doesn't pay much attention to what is being said. However at her two pre-op visits she paid very close attention and was quite attentive. I even discussed with her the visits and what was going to take place with her surgeries and the reasons for her surgeries. One thing that I asked my Father in Heaven was that someone from the other side of the veil could be present during her surgeries not only for Kirsten but for the surgery staff as well. I felt that presence during her surgery that someone was in that operating room watching over everything and everyone. As soon as the second doctor came out and explained his surgery and she was all closed up I felt that presence of the special visitor from the other side 'leave' but my peace did not leave. I am so humbly grateful for the 'special blessing and special person' being present. I do not know who was sent but felt it was a male and not a female.
I asked both surgeons how surgery went and they said that everything went well. The second surgeon said that her gall bladder wasn't horrible but it wasn't great either. He said that she had a pinky finger size stool (yes, that would be poop) in her appendix. I was shocked! How could poop end up in the appendix! He said that it was not usual but he had seen it before. Who would have guessed? Only Kirsten's little body! He gave me some beautiful 8x10 glossy photos of the gall bladder and appendix! :o)
I went into recovery to stay with Kirsten until she went to an assigned hospital room to spend the night for observation. Neil had other things to do and met up with us later in her room. Kirsten had a tough time in recovery. She was nauseated from the anesthesia so they kept her anti nausea meds going. She was also struggling with severe hiccups and gas. Every time she had a hiccup or gas it rocked her entire body with pain and her hand would slam against the bed rail. We had to pad the rails and hold her arms when she flailed. They did not know what the cause was. When they removed her gall bladder and appendix they pump gas into the abdomen before they send a tiny camera in to locate the organs to work on. That gas is not relieved through ordinary channels and the body has to absorb it. The abdomen remains distended for a day. The pain can travel up to the shoulder and neck. They had her on pain meds but her body still rocked with shock waves of gas pains.
I discussed the shock waves of pain with her surgeon the next morning and he said that he has never had a patient (25 years practice) with gas pains taking out the gall bladder and appendix. He said that it does happen with hiatal hernia surgeries and it lasts for a day. This was a first for him. I told him not to feel bad as Kirsten has a unique little body and it does and reacts in its own way. She is definitely not a text book medical child. They all agreed.
Her surgeon left orders to start her regular feedings that night at 6:00p.m. I told the nurse, "I don't think so. All I need to do is have her vomit and aspirate on her fluids and have her come down with pneumonia. We will start out slow and easy and gradually increase the feeds."
She told the doctor and he agreed as he felt I knew best. Actually the nurse told him the mother knew best and take her lead. I had to chuckle. She was a cute tiny Filipino lady and was like a little general! :o)
Kirsten had a hard time and threw up at midnight. We kept her nausea meds going. They actually ordered them stopped after she left recovery and I told them Kirsten has trouble with nausea and vomiting after anesthesia. The 'little general' nurse called the doctor and he reinstated the nausea med-Zofran until all nausea stopped. Kirsten always throws up for 12 hours after surgery if she doesn't have Zofran. At 2:00a.m. she finally slept until 6:00a.m. and the hiccups started up again but they were not as violent as before. Her doctor came in and as stated above never had that experience from that type of surgery before with hiccups and felt bad. He said that hiccups are a killer for pain on the abdominal muscles and stomach muscles.
Her doctor wrote up orders that she had the option to go home that afternoon or stay one more night. We went home at 3:00p.m. We came home with pain meds. He told me not to let the pain get away from her and keep up the meds to make her comfortable. I have done that.
Today is Thursday the 22nd and she is feeling better this morning after a great night sleep. I slept beautifully! I needed sleep badly. If Kirsten woke up in the night I didn't hear her. I was beat and tired! Dad said she stirred once and went back to sleep.
I am so grateful for a benevolent Father in Heaven who answers all our prayers. I am grateful He richly blesses Kirsten and her family. I am grateful for her surgeons and for the two surgeries she had. I know her recovery may take a little time but she will be healthier.
One final note.... I was curious about 'gastroparesis' and looked it up immediately when we got home from the hospital yesterday. I found out something quite enlightening. All along one of her doctors said it was sometimes caused from Diabetes but Kirsten does not have Diabetes. I googled (looked up on the Internet) 'gastroparesis' and found out in the very first paragraph that it can be caused from damage or surgery to the stomach and vagus nerve. BINGO! There was our answer! She had had '5' Vagus Nerve Stimulators in her chest. They help interrupt the seizures with an electric current to the brain. Hello! I am going to share this article with her two surgeons and her PCP doctor. I would be very interested in knowing how many VNS patients have gastroparesis. I do not think it was by accident I discovered the article. This answers my question as to why Kirsten has been fighting nausea and vomiting for two years. I know that her gall bladder and appendix needed to be removed and that will help also.
Editor's note-
Kirsten is on two medications to help with her gastroparesis. They have her on Reglan and Protonics. They help add 'motility' to her stomach and digestive tract as well as reduce the acid in her stomach to avoid acid reflux. She will be on these two medications for the rest of her life. She has been on these two medications since her stay in the hospital at Good Samaritan in August and in one month they have greatly helped her digestion.
