We started the day like we normally do. Dear Son had completed his feeding via the tube and I was getting ready to get him dressed for school. I leaned over his bed and gave him a big hug. I take his left arm and put it around my neck. I tell him he needs to give his mother a hug and I proceed to hug him and kiss him on his neck. Some days, his arm is tight and when I put it around my neck, he nearly chokes me. That’s the way it had always been but this year, he’s been making such nice progress at school using his arms, that some days, when I put it there, he will not choke me and instead has more control. On this day, I ask him for a kiss however at seventeen, he does not want to do it. While I kiss his neck, I love to watch his face, his eyes are sparkling and he is laughing. His face is full of joy as he teases me. I know he loves his mother but he’s just having a little fun. That is who he is…a very sweet young man. After the hug, I proceed to get him dressed for school.
Some time later that evening, at he was lying in bed getting his dinner fed through the g tube, he began to have a seizure. The seizure was small at first but began to gain in intensity. It started with some small hand shaking and some agitation but soon began to build. I took the magnet off of his wrist and put it over the vagus nerve stimulator which is implanted under his left armpit. Holding it there for three seconds will send a charge up to the vagus nerve and stop the seizure. This particular evening, it did not work. The seizure was not stopped and began to grow. As it did that, I became more concerned, doing whatever I could to stop it. I used the device again and again and finally, the seizure subsided. Dear Son came to a bit. I was standing there asking him if he was doing o.k. and telling him that things were going to be o.k. One of my hands was on his arm and the other on his bed when he leaned forward, and kissed my hand. Being special needs, he kisses differently at times, for him, a kiss is a lick. It’s always been his way of thanking me for helping him or for talking to him about something that has bothered him. I thanked him for the kiss and thought back to the morning where he was teasing me and not giving me a kiss and then that evening, when he was in trouble, kissing me right away. That is the beauty of these children. They live every day from the heart. Some times you get what you earn and other times you don’t but when you do, it means a lot.
We have a saying Dear Son and I, that I coined some time ago. It is, “where you go, I go”. It means that wherever he goes, I will be there to pave the way, to protect him. That nothing will ever happen to him without me questioning things and being his voice. Because he is non-verbal, I need to stand up for him and to protect him. He can not tell someone when something is hurting him but I will go to bat for him to make sure that a particular test is necessary for him or to see if there isn’t another way to do the test that would be less invasive or more comfortable for him while still allowing medical personnel to do their jobs. And this week has been no different.
Early last week, I received a phone call that Dear Son had a surgery date to have his vagus nerve stimulator (VNS) implanted. I had contacted the secondary insurance a few days prior to get approval and they could not give approval without a surgery date and Big Academic Medical Center would not give a surgery date with prior approval from the insurance company. I had them speak with each other to get this resolved and they had called me with a date. As I mentioned previously, the diagnostics had come back on the device and it showed that his battery was wearing down making the device less effective, hence the seizures. Initially they were going to replace the battery however more often than not, they typically will upgrade the device with a new model. The newer model is reportedly more sensitive and should allow for easier activation with the magnet.
Prior to a surgery, I typically have a lot of questions. My main concerns are making certain that Dear Son is taken care of and that we avoid any problems. Big Academic Center wants the same thing however sometimes a “one size fits all” approach doesn’t work well. For this surgery, the instructions I have is that he should receive nothing to eat or drink after midnight, and that he can take his seizure medications with a little bit of water. I need more information that that. Due to the large amount of medication he receives, I will see if I can give him 60 cc of formula with them so his stomach won't be irritated.
My other concern has to do with him choking on his saliva. Dear Son has severe swallowing issues related to the progressive neurological disease. If he were to lie on his back, he will choke to death on his saliva. Currently, he must be on his side at all times when he is lying down. Dear Son can not roll himself over so if he were to get in a situation where he is choking, he can’t help himself. Even if you tell the docs that, people sometimes forget. In addition, he wears a Scopolamine patch to control his secretions. When I ask them if this will be a problem for surgery, for him to wear his patch, they inform me that they will use a different drug for this, called Robinal. Robinal did not work for Dear Son so I explain that this isn’t a good option. After some discussion, they agree to let him wear the patch for surgery.
When I speak with the nurse practitioner about his seizure medications, she informs me that they can give several of the seizure medications via IV. Our surgery is at 10:30 a.m. and we are instructed to be there at 8:30-9 a.m. I tell her that he normally receives his medications at 6:30 a.m. and if he gets them that late, he could have seizures. She ends up calling the anesthesia doctor and gets approval for me to give his six seizure medications with 60 ccs of formula at 4:30 a.m. This will help prevent any seizure issues during surgery and also help avoid a reflux issue from the irritation of giving meds on an empty stomach.
Finally, I ask questions about the programming of the device. Earlier this year, when Dear Son was hospitalized, we had a new person (to me) program the device and the following day when he was going to be discharged, I was told someone would come to check the device to make certain the settings were accurate and no one showed. As a result of this issue, I wanted to make sure that I understood what would happen after the surgery. I wanted to know if they ramped up the device or started them at the previous setting. The nurse practitioner seemed peeved that I would question her and told me she did this everyday and that she could understand that I was “anxious” about the surgery. I explained to her that I wasn’t anxious but that I needed to understand what was done since sometimes people at Big Academic Medical Center don’t always communicate very well with each other. My concern with the vagus nerve stimulator was that if the settings were set too high, that he would be shocked and it would be painful. Some of the patient notes that I read on the internet had described the shocks as more powerful and painful with the new device; since Dear Son is non-verbal, I wanted to know how to avoid that. She explained that for non-verbal kids, when they cough a lot (coughing is a side effect of the VNS), she knows the setting is too high. Finally, I asked about the incision and school. I needed to know when he could return and she informed me that typically the neurosurgeon doesn’t want the kids to go back to school until he has seen them in follow up a week later. So essentially, Dear Son will be out of school a minimum of one week. This would have been good information to have a little bit earlier since being self-employed and working part-time, I need all of my income to keep a roof over my head.
In the end, I am pleased that they were able to schedule him so quickly. The neurosurgeon is the same one that implanted the device in 2004 and the surgery went well. Not only is he a great pediatric neurosurgeon but he has an amazing bedside manner and is perhaps the nicest man you will ever meet. The Nurse Practitioner does a great job too. She was the one that I spoke with in 2006 who helped me arrange for a transfer to Big Academic Medical Center when Local Hospital failed to diagnose and treat a MRSA pneumonia and he nearly died. Her ability to contact a doctor on a Friday night and help me arrange for a transfer saved his life.
That being said, there are things that could be done different by hospitals to make surgeries easier. Our case above is a little unusual in that normally you have an anesthesiology consult in person prior to a surgery where many of these issues would have been addressed. Due to the speed of this date, this was done over the phone. One thing that would have been helpful was knowing that he couldn’t return to school for a week or more. I am self-employed and work part time while taking care of Dear Son. It’s not always easy to cancel jobs at the last minute and lose revenue when these situations arise. Even knowing these things a few days ahead would have been good.
Last night, I began to think about getting Dear Son home from the hospital. Typically, his Dad lifts him into his SUV to take him home since I don’t have a wheelchair van. With the incision under his left arm, he won’t be able to lift him without tearing the incision open. We can’t lift him another way since it would still require grabbing him under the arm. So last night, I went on-line to see about renting a wheelchair van to get him home. The place I found, requires a three week advance notice to rent a wheelchair van.
If we can do this, I will take his hoyer lift sling to the hospital and hope that they can find a hoyer lift for us to use to get him into the wheelchair. You would think that Big Academic Medical Center would have this type of equipment there however that has not been my experience. The last time he was hospitalized and I asked for help lifting him in the wheelchair, they brought in a “lift team”. This was a new concept to help patients and they identified four individuals as the “lift team” who would lift the patient. Well, they could only find one that day and finally rounded up another person. Both men weighed around 120 pounds each and when they saw that Dear Son was seventeen and weighed 170 pounds, they said they couldn’t do it. I couldn’t believe they couldn’t locate a hoyer lift at a Top 100 Pediatric Hospital.
In summary, my advice to other parents when their child has a surgery is the following:
- Ask questions so you understand the entire process.
- Don’t be intimidated by medical professionals. It’s your child and asking questions to better understand the process is fine.
- Make sure the surgical procedures help guarantee the best outcome and maximum comfort for your child.
- For outpatient procedures, get clarity on how long your child will be out of school and what the activity level is appropriate.
- Make certain to get a prescription so they can return to school.
For hospitals, I’d recommend the following:
- Review your procedures to guarantee the best outcomes. If patients are coming in for vagus nerve stimulators, which are only implanted for patients with uncontrolled seizures, having a policy that states only water can be given with meds may not make sense. For these patients, who probably are on multiple seizure medications and who more than likely have reflux issues, you may want to review the policy.
-For all outpatient procedures, be clear on what the patient can and can not do after surgery. If they need to be off of school for a certain period of time, notify the parents early. Add a line to the surgical instructions you mail out that says, “Patient most likely can not return to school for x days.” You can modify it after surgery but since most people need to work, they need to know in advance.
-Think beyond the surgery with regards to what instructions would be helpful and check the box on the surgical instructions. For example, something simple like, “For non ambulatory patients, a hoyer lift must be used for lifting until incision is healed.” Some wording like that, would help give me a heads up with regards to transportation. Also, for patients like us, without a wheelchair van, do you have other transportation alternatives available to get the patient home? And where would I find that information? Could that information be included on the sheet?
I am relieved that Dear Son will have his surgery tomorrow and I realize that swapping out the device is not a big deal compared to other surgeries however without proper planning, the potential for a bad outsome is increased. Had I not discussed the saliva issues or medication issues, Dear Son could have choked on his saliva through use of the wrong medication or vomited his seizure medications. Either one of these scenarios could have had a fatal outcome on a relatively simple surgery. I expect things will go well tomorrow and look forward to better seizure control with his new device. And tomorrow, I’ll be right by his side, after all, we have that saying…"where you go, I go”. Hopefully, I’ll have made is easier for him.