Over the past few days, Dear Son continued to have difficulty managing his secretions. He has a lot of trouble sleeping at night with the secretions and was moaning out a lot of the time. Although I have the head of his bed raised and I frequently roll him over to change positions, he still has great difficulty breathing and I can hear the rattling of the secretions in his throat. Some of his moaning can be quite loud while he is trying to clear his airways. While you and I might cough to do this, Dear Son really doesn't cough at night and has trouble coughing during the day. He also moans out in his sleep regardless. This is new and I am not sure if it's pain related or what but it's hard to listen to when nothing I do seems to help.
I spoke with the doctor today and talked to him about the gel. I told him that I didn't feel it was working at all and I was quite concerned he might aspirate on his own secretions. As a result, he put him back on the Scopolamine patch for now but we'll follow up with another CT scan of the abdomen next Tuesday to see what is going on with his bowels. There really aren't any other pharmaceutical options to dry up these secretions since it is my understanding that Scopolamine is really the drug of last resort. I must admit I was somewhat relieved by that since I was so worried he'd choke to death.
A few years back, we had tried botox to assist with his secretions but the benefit was short lived, say two weeks or so before he was back to choking again. At that time, we had discussed the removal of the two on the salivary glands, the parotid and the submandibular gland but on one side of the throat only. I asked Ped Neuro Doc (he functions as Dear Son's primary now since he's medically complex) if that might be a viable option now. While I understand the importance of protecting the airway, I also worry about using the patch and having Dear Son screaming in pain again from urinary retention. The doctor will be talking to the ENT with regards to possible next steps. Although surgery (sedation) is certainly a huge risk for Dear Son, I know that we have to get Dear Son to a point where he can sit comfortably, urinate without hurting and breathe without choking on his secretions. It will be good to hear what they recommend.
In the meantime, I am still trying to sit him up in the recliner briefly every day, to help keep his lungs clear. While we are not where we need to be, he is still better than he was a month ago and that is important.
We also had a visit with the school nurse last week. She had called and asked to visit earlier this month when Dear Son was in the hospital. She came to our home to see how Dear Son was doing. I must admit, Dear Son and I were definitely ready for a few visitors! She also wanted to know if we might have an interest in some more visitors from school. We are definitely interested however we have to determine if that might be a viable option with his docs. Certainly, we have to make sure everyone is well first! We also discussed him going back to school at some point. He hasn't been to school since October and the Pulmonary Doc does not want him back in school until late February or early March, after the cold/flu season has passed. Since Dear Son can not clear his airways, he can not risk getting sick again. Also, Dear Son isn't ready to go to school until we can have him sit up without pain and essentially be able to get through his day.
The good news is that they offered to try some therapies at home. We'll see Ped Neuro Doc at the end of February and see if we can get some approval for therapy and for his teacher to do home visits, say once a week or so. If he tolerates that, then we can figure out the next steps in terms of riding the bus and going to school. They have offered to do whatever schedule he needs, anything from school for two or three hours one day or week or whatever he needs to get back in the swing of things. Even if he can't sit up, they can do some therapy while he is in his bed. They have to check the IEP to see how they can meet his educational goals to do this.
I think having some home visits by the therapists might be helpful. I can have the therapists do some leg exercises and leg massage to help increase the blood flow in his legs/calf. I can have some speech therapy to help me with keeping his teeth cleaned. After Dear Son had all of that suctioning, he's reluctant to let me brush his teeth now, something he used to love. They have exercises they can do to help Dear Son relax his muscles and open his mouth for me. In terms of therapy in bed, I am hoping they could help me help him turn over. Dear Son can't roll over so I have to turn him over at night. I grab his hips to turn him however he used to be able to take his arm and move it over as I moved his hips but now he can't do that and I have to lift his hips and then once they are positioned, then lift his arms and turn the top part of his body over. It's not very easy. Plus, it's also a bit self serving. I would be thrilled to get a little help here with some of his tasks. While many people have offered, I have always turned down any help but now I am getting a bit weary of 24/7 care and I am ready to put anyone that offers to work, lol!
We are quite fortunate to have such a wonderful school system that is willing to do whatever to help Dear Son. On a sweet note, his teacher wrote me and was asking when she could schedule a visit. She mentioned that she was assigning new jobs for the students for the new semester when one of the girls asked what Dear Son's job was going to be for the new semester. They have jobs like shredding, plant watering, folding towels, etc. She said Dear Son's job was to "get healthy"! I think that sounds like a great plan.
As for me, I am ready for all of this to be over. I still have a stack of medical bills to go through. Hopefully, I'll get that done next week. This week, I set up a new home healthcare provider and worked on another medical issue. I am anxious for Dear Son to be well again and to see that happy face again. I am also ready to get back to my tablescaping and some other things. I haven't had any time to do anything for me or to get out of the house much so I am definitely ready for that. Thank you for all of your wonderful comments and suggestions for Dear Son.