Tuesday, February 22, 2011
I'm sorry that it has taken me a few days to get this posted. I'm trying to keep up with all of the kids' activities and working on my consignments for the One Week Boutique coming up. Who knew getting ready to sell baby items would be so much work!?!
Tuesday was a typical, interesting day at Shands. We were out of the house and on the road by 6:40 am. Both boys slept the entire way there. It was an uneventful drive, which is always a good thing. I did see several FHP. One was driving with a headlight out and another passed me cruising at 82 mph in my trusty dusty van (Sally is running great, just didn't get the carseat and stroller moved the night before). They need to practice what they preach! Not that I don't appreciate FHP and their difficult and dangerous jobs, I'm just saying. So I was thankful for not getting a speeding ticket and happy to get to Gainesville safely. Jacob was much harder to wake up than Gavin when we arrived at the Medical Plaza at 8:45. After changing Gavin out of his wet diaper and pajamas I realized I left his shoes at home. I couldn't believe I had forgotten something that important, but I decided it wasn't that big of a deal and we would just go with it. After all, I did have his socks he slept in the night before and his fresh socks to match his outfit for the day. Double layering was going to do just fine.
I was very proud walking into the clinic that we had arrived so early. It was barely 9:00 am and our appointment wasn't scheduled until 10:30. When I spoke with the scheduling nurse the week before she had informed me that Dr. David Kays' clinic was completely full, but they were going to work Jacob in because they know Jacob needs his port. She said even though she put Jacob down for the 10:30 appointment, I could bring him earlier and they would see him at that time. I thought this was a great idea because I was able to schedule Jacob's eye appointment with Dr. Hazem Samy at 11:30, but life obviously had different plans. The receptionist checked us in, Jacob was weighed and went through the same ol' song and dance and Gavin and I got settled in the waiting room. The pediatric floor is very nice with movies playing, things to play with and crayons and coloring pages. They even have volunteers in the waiting area to interact with the children. Jacob thought he was going to get to watch Finding Nemo, but a few minutes later the nurse informed us that Dr. Kays was at the hospital performing an emergency surgery and wouldn't be in until after lunch. I thought, "Ok, things happen and I understand it was out of anyone's control." I put my happy face on and tried to make the best of it. Jacob wasn't upset and we went on to the eye clinic to see if Jacob could be seen early there so we would be free to return to the surgical clinic that afternoon. Upon checking in at the eye clinic I was informed that Jacob's appointment was made for the 25th of February, not the 22nd. Deep breath. At that moment I was so happy that I had listened to not one, but three sermon podcasts from our pastor at KUMC on my way to Gainesville that morning. I was feeling very Christian-like at the time and I just smiled and said ok. There must of been some miscommunication during my phone call with the scheduling eye clinic nurse the week before. Dr. Samy wasn't even in clinic for us to be worked in, but I did ask if Jacob could still have some of his testing done. She checked with Amy, but she was too busy at the time with other doctor's patients. Jacob, Gavin and I left the Medical Plaza. After cruising the Archer strip we decided to go to Target. Gavin got a new pair of shoes and bubbles. We blew bubbles in the parking lot under a tree and threw acorns. Jacob stirred up some ants so we relocated to the van for lunch. I had packed our lunches. The eye clinic called and said they could do Jacob's Goldman Fielding vision screening at 11:30, but we declined. It was time to eat and Jacob didn't want to go back right then. I wasn't terribly concerned because of the extensive testing NIH had just done on Jacob's eyes in January. Because Shands is so close to our home and NIH is so far away I definitely want them to keep up with Jacob's eyes and vision, but we will just do it on another trip. I also tried to make Jacob's EEG for this trip, but they weren't able to get him in at all. His EEG is scheduled for April 6. There will be a lot of trips to the Swamp coming up in Jacob's near future. We were back at the pediatric surgical clinic by noon and we waited. Jacob was thrilled to watch 101 Dalmations, which I didn't know was one of his favorite Disney films. It was the one that wasn't animated. Learned something new about my 14 year old! Finally we went to a room and met with Dr. Kays' ARNP and she was really nice. I wish I could remember her name. I liked her very much. About 30 minutes later, Dr. Kays came in and met with us. He looked Jacob over and asked a few questions. He explained how the port would be placed and he asked Jacob if he had a preference to which side he wanted it in. Jacob said he wanted to be able to go hunting and fire his gun without fear of damaging the port. Dr. Kays will try and place it in the right side first, but can't guarantee it. He also asked us about Jacob's MRI and CT scans. The metal in the port will be titanium so it will not interfere with the MRI. Jacob will be receiving the smaller port because when he has his CTs he does not receive contrast. I guess CT contrast is delivered at a very high rate and only a special port can handle that, but it is more visible and sticks out. We decided on the smaller of the two that will work well for the infusions of chemo, blood draws and MRI contrast. Dr. Kays was pleasent. He interacted well with Jacob. I was hoping Dr. Kays would be able to do the surgery this week, but they are slammed with pediatric surgeries everyday. Another one of those sad moments for me thinking about how many kids need surgeries. Jacob's surgery will be at Shands Children's Surgical Center in Gainesville, FL on Monday February 28, 2011. I don't know the time, but they will call us the night before and let us know. Because Jacob is older he will be a later case because he is more capable of waiting to eat than younger children. (Obviously they don't know Jacob!) The surgery is considered minor and he will go home that afternoon. Dr. Smith said he will be sore for a few days. I am going to have to reschedule his physical with Dr. Kelch for Camp Daniel Boone and contact his school about postponing FCAT Writing next week to later in the week. According to Dr. Smith, Jacob will start infusions roughly two weeks from Monday. She likes for the port to heal for about two weeks.
Our drive home was peaceful. Gavin slept the entire way and Jacob sat quietly and played his iPod. I missed our normal "on the way home" two hour conversation, but I just thought it best to let him do his thing. We were home in Tally by 5:00 pm. Jacob's treat for the night was ice cream at Lofty Pursuits. I wish he had gotten a sundae, but he kept it simple with ice cream and sprinkles which surprised me because Jacob is always excited about what he is eating. I thought he would've ordered something really cool. Have you seen their crazy menu? And tonight I thought it was adorable that he called his GG and put in a request for her fried chicken, butter beans, mac n cheese and corn bread for when he visits her on Friday. Too cute.
Please pray for Jacob and keep him in your thoughts. Although this surgery will be peanuts compared to him having a craniotomy, Jacob is still scared and anytime your child is put under anesthesia it is concerning.
I will post a post-surgery update as soon as I am able to.
Another mom with a child with NF2 created a web page on Caring Bridge for her daughter and shared it with me and the NF2 crew. I was inspired to make one for Jacob. I'm not sure if any of you remember, but I tried to do this years ago with Care Pages, but never finished it. Jacob's Caring Bridge page is active and I will update it as medical things happen.
Visit on the web by clicking the link below.
Jacob's Caring Bridge journal has the previous posts from this blog about his medical information and it will continue to only be about Jacob and will not have any posts about the rest of our bunch. You can also leave Jacob notes there if you want. I think Jacob would enjoy reading any words of encouragement or funny stories or just someone saying hi. Check it out if you have time.
Below is Port information if you're interested:
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.
The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.
The septum is made of a special self-sealing silicone rubber; it can be punctured hundreds of times before it weakens significantly. To administer treatment or to withdraw blood, a health professional will first locate the port and disinfect the area. Then he or she will access the port by puncturing the overlying skin with a 90° Huber point needle although a winged needle may also be used. (Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle. This gives it an advantage over indwelling lines such as the Hickman line.) Negative pressure is created to withdraw blood into the vacuumized needle, to check for blood return and see if the port is functioning normally. Next, the port will be flushed with a saline solution. Then, treatment will begin. After each use, a heparin lock is made by injecting a small amount of heparinized saline (an anticoagulant) into the device. This prevents development of clots within the port or catheter. In some catheter designs where there is a self-sealing valve at the far end, the system is locked with just saline. The port can be left accessed for as long as required. The port is covered in a dressing to protect the site from infection and to secure the needle in position.
The surgery itself is considered minor, and is typically performed under both local anaesthesia and conscious sedation. Patients sometimes have a little discomfort after the procedure, and can be managed with a narcotic, such as demerol for 24–48 hours.
A port is most commonly inserted as a day surgery procedure in a hospital or clinic by a surgeon or an interventional radiologist, under conscious sedation. When no longer needed, the port can be removed in the operating room.