Friday, February 05, 2010

Dear Son Medical Update~Finally, A Smile

This past week has been mixed. The good news is that Dear Son has been sleeping better since the new regime I started last Friday. The new regime involved an extra can of formula and .5 ml of Risperdal at midnight, on the nights that he moans in his sleep, which has been every night except one. With the extra formula, he's not waking up hungry at 3:30 -5 for his formula to be started. In addition, after a few days of this regime, he started to seem like his old self. He would smile and be happy at times. I started talking to him about his "Make a Wish" trip and the possibility of going back to school, once he's feeling better. He smiled when I talked about that and he hasn't done that since October prior to the whole swine flu hospitalization.

The bad news is that he is having major issues with saliva. The scopolamine patch isn't controlling his secretions very well and I am afraid he will choke on them. In the past, it was not uncommon from time to time that Dear Son would have times where the patch didn't work as well as others. I don't think it's the patch as much as it is the fact that some days, things are worse than others for him and some days he may have more secretions than others. On Wednesday night, he was up virtually the entire night trying to breathe. I will be ordering the therapy vest and a suction machine shortly, as soon as the January hospital bill is processed. Once that is done, we should meet our deductible and be close to the stop loss, so it shouldn't cost as much. I did try to do some chest pt this week but he seemed to scream out in pain when I did his upper right lung. I am not sure why since he is not presenting with a fever which means there isn't a respiratory infection.

The other major issue is that he still can't sit up in the recliner or sit up without pain of some sort. On Tuesday, we took him for the CT scan and he fussed in the car all the way down and all the way back. I sat in the back seat with him so I could hold his hand and comfort him. His hand was shaking as well at times so I am not sure if he was having some seizure activity to boot. While we were in the waiting room, he continued to yell out and make noise most of the time.

After the CT scan, we attempted to get lab work however they were not able to get any blood. The patch makes it very difficult to get blood from him so after 35 minutes or so, I said that was enough and took him home.

I called the neurologist today since Dear Son's saliva issues were fairly bad. He suggested adding an antihistamine at night to help dry up the secretions. He said it would be short acting and would help get him through the night. I thought this was brilliant. I hope it works.

We also discussed the CT scan. The pneumatosis is completely gone, so that is the good news. The bladder is still very large. There weren't any other findings to explain his pain from sitting. Interestingly enough, I got to see the CT scan while the tech was doing it. Dad was holding Dear Son on the table and the tech suggested I take a seat in the room with him. I saw the curvature of his spine and asked the tech if it was the test or if his spine was curved like that and he said it was his spine. I don't know if that is playing a role in his sitting issues.

In addition, Ped Neuro Doc e-mailed the ENT last week with regards to the saliva issues. He recommended two options: botox and removing the submandibular and parotid glands bilaterally. He said he'd prefer the first option since it's a reasonably involved surgery. I reminded Ped Neuro Doc that we already had the botox surgery/injections in January 2008 and it was unsuccessful. He'll speak with him again with regards to next steps. If he does choose the surgical option, I'd like to have some discussion as to where one or both sides should be done. In the past, Ped Neuro Doc suggested one side be done. I'll let them figure that out.

As far as urinations with the patch, they remain unchanged. I am tracking his output and the number of urinations seem to be the same as without the patch. As of yet, I don't think there is pain with that. Dear Son does moan at night and I am unclear if that is from the pain from urinary retention or something else but overall he seems better this week other than the secretions. On the back burner is the bowel movements. The frequency is slightly less and the volume is a lot smaller so I hope he's not backing up. I have been feeling his abdomen to make certain it's not hard or distended as of yet and when I push on it, he doesn't seem to be in pain. Without the Miralax, I think we need to keep an eye on that.

Overall, I would really be glad if this were over soon. It was very stressful on Tuesday taking him for the lab work and CT scan while worrying he might catch something down there and be back in the hospital. I didn't realize how traumatic that was for me. In addition, we have to get things back to normal soon. He is still sleeping much of the day and there aren't too many alternatives when he can't sit up. It has been good seeing him more like himself this past week. I can't even explain how thrilled I was that he was smiling and happy at times, just like the old Dear Son. In December, the docs had told me that his crying was "disease progression" and he'd probably cry the rest of his life. I was beside myself to think that Dear Son would cry forever and that I'd never see my happy-go-lucky son again. I am so relieved that the bulk of his pain is gone. All of the sweating is gone and other than the pain from sitting up and the moaning at night, he's not crying any more like he used to. In retrospect, it is so hard to think back to these last ninety days and everything he has been through. It has really been a tough time for both of us.

On a different note, I normally read a lot of different blogs however this week, I stumbled upon an old favorite of mine, "The Examining Room of Dr. Charles. When I started blogging in 2006, Dr. Charles was one of my favorite blogs. I'd read the "Grand Rounds" every Tuesday and soon was reading his blog all the time. Back then, most of the blogs were physician blogs and there were very few patient blogs, unlike today. He used to write these stories that were fascinating. In 2005, he self published a book, "Legends of the Examining Room". Over time, he switched to this science blog and wrote more about science related issues than these patient stories however recently I saw that he's moved again and has a new blog. Here is a clip from his latest post, "Attending to a Patient's Funeral":


"You walk into the funeral space. Many people are gathered. You sense pockets of light humor and recalled happiness amid dark clouds of sadness and gloom. Although you know this is not about you, your ego can’t help assessing how others perceive you. Most of those present barely notice, but others recognize you. Is it surprise registering in a few faces – that you’ve come to observe your patient’s defeat, that you’re emotionally invested in the person who once called you their doctor, or that you’re willing to dirty your powerful white coat with the stains of ultimate impotence? Or is it gratitude, that even in this darkest of reflective hours you’ve come to pay your respect to another who trusted you, confided in you, and who reached out to you for whatever healing you might bring?"


You can read the rest of the post here. Dr. Charles blog, "The Examining Room of Dr. Charles" can be found here.

4 comments:

Emily said...

I used a therapy vest for YEARS due to my CF. I was actually one of the first people to get one--mine was a huge clunker of a thing compared to the ones they have now. I hope it helps Dear Son breathe easier!

"Lois Grebowski" said...

I'm so glad to read about a smile.

Kristin@Bouelvared Inteior Desing said...

I'm happy you had some smiles. I always hope your perseverance pays off. I can't imagine being told that my child would cry for the rest of his or her life.

drcharles said...

Thanks for reading my post :)

Your devotion to your son is amazing and touching. I wish you and him all the best.

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