Tuesday, September 21, 2010

Whew-It's a lot of work!

Not sure what else I can say about the last few days other than whew! Dear Son seems to be recovering well. Of all of the pneumonias in the last few years, this one seems the most mild, at least in terms of his recovery. I think the oxygen is helping out a lot since he's not working so hard after being released from the hospital.


He still is having some issues with seizures. They removed one of the seizure meds since they thought it was causing his platelets to drop however he's having some issues. At times, he has some terrible writhing type movements-looks very much like Michael J. Fox at times moving all over. His head moves so much it's hard to keep the nasal cannula on. He had some horrible cluster type seizures Sunday evening and again on Monday evening but seems better tonight. I spoke with his neurologist yesterday and he had me add one pill of his other seizure medicine to help Dear Son out. Today, we took him over to another hospital for a blood test.


I've been pretty tired keeping up with this new schedule. I am doing nebulizer treatments and chest pt four times a day, along with leg and feet massages for edema and doing his hand splint therapy to keep his wrists in alignment. All of this on top of meds every six hours, plus feeding, diaper changes, positioning changes, general grooming and moving him back and forth from the living room to the bedroom have me bushed! I don't think I sat down for a few hours between all of this.

I also have medical paperwork to do. I completed the paperwork for a Guardianship for him the week prior to his hospitalization and once the doctor returns the form, I can go to the courthouse for a date. It is recommended that a parent seek a guardianship for a person once they turn 18 so they can continue to make medical and financial decisions for them. I think this past year or so has really taken it's toll on me a bit. The lack of sleep really makes it more challenging to do all of these tasks. I typically get two to four days a month of uninterrupted sleep when his Dad takes him for the night and I am always amazed at how much better I feel and how much more I can get done on a full nights sleep.


Dear Son looks good, other than when he's having seizures or moving with all of the writhing type movements. One thing that seems better than previous pneumonias is all of the secretions. He doesn't seem to have any really. The antibiotic seems to be working so I am thankful for that.

Update: I just received a call from Dear Son's personal nurse at school. She inquired about him and offered to do any necessary treatments he needed. I hadn't thought about that option actually but she volunteered to do nebulizer treatments, oxygen, etc. I took Dear Son off his oxygen last night since he had pulled it off and his oxygen saturation was fine. He was on 1/2 liter all day yesterday. I think having school do a chest pt and nebulizer treatment would be great. I also talked to them about doing his splint therapy (these are arm splints to keep his wrists in a neutral position); the optimum schedule is three times a day and I suggested having him wear his splints to and from school. Each way is a 30 minute trip and that way, I'd only have to do one more treatment at home, at least on school days. I'll talk to the doctor's office on Friday about him returning to school next week. If it's a go, I think it will be great to have some assistance. To help out, I'll probably create a checklist to make things easier.

5 comments:

Gloria (The Little Red House with the White Porch) said...

Hi, Dream Mom. Wow, you deserve a medal. I can only imagine how physically exhausted you are, nevermind mentally exhausted. Can you not maybe get in a nurse for 8 hours a couple of times a month for a night schedule so that you can actually GET a good night's sleep? Aren't there any programs out there to help with home care? I will say a prayer for you that something turns up for you, that the good Lord deposits something right in your lap. Well, just know that you are doing an exemplary job and are to be greatly admired. I know he is your son and you would do anything for him, as I would do for mine, but you STILL deserve major kudos!
Take care and try to get what little rest you can.
Best,
Gloria

Dream Mom said...

Thanks, Gloria. I don't have nursing care under Dear Son's primary insurance and may have some under the secondary. I haven't decided if I really want to have anyone come into my home. I know it sounds odd but it's just one more thing to manage or prepare for and I like my privacy. I am a bit of an introvert so I relish my peace and quiet and don't like someone in my face 24/7. I'll have to give it some thought though. The extra work for the chest pt and nebulizer should be short lived and then things will get back to normal. In the meantime, I guess it's just part of getting older, lol. I appreciate your kind comments and concern.

Gloria (The Little Red House with the White Porch) said...

Hello! Yes, I know what you mean. I hate having strangers in also. When my mother needed rehab when she had a problem with her foot when she was alive, I hated when someone had to come in when I was at work! So I sympathize and understand.
gv

Gloria (The Little Red House with the White Porch) said...

P.S. Read your update-- I think a checklist for the people would be a great idea! Then you wouldn't have to worry that they heard everything you'd like them to do.

gv

Dream Mom said...

Gloria-I am glad you understand. I am sure that may sound odd to people who have never experienced that but having someone come in/out can be draining.

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