Friday, September 17, 2010


It's been a heck of a long week but things are now going much better. I think what made this incident more stressful on Monday was that it happened so fast-I basically got out of bed in the throws of an emergency. Second, due to his past respiratory history, I was a bit jumpy fearing the worst-that he'd get pneumonia and die.
Once Dear Son was admitted to Big Academic Medical Center, things went much better. It makes a huge difference when the ICU knows his history and knows exactly what to do. They had him on the right amount of oxygen and he started to look better. The Local Hospital wasn't giving him enough oxygen to help him recover. By the end of the day on Tuesday, he was much improved due to the oxygen support. He stayed at 4 liters for a while and then they were able to drop him a bit as the week progressed.
Overall, we had two main issues this week. The chest xray confirmed a right lung lower lobe pneumonia and also showed a fairly hazy left lung. The Pulmonary Attending, who had never seen Dear Son previously, wasn't quite sure what to make of the pneumonia however after learning his history, thinks Dear Son aspirated his secretions. As a result, they treated him with Clindamycin, a broad spectrum antibiotic, if I recall. They started it on Tuesday and on Wednesday, he seemed to be feeling much better and looked more like his old self. Fortunately, we were able to catch this pneumonia very early. Another day or so, it would be hard to tell what we might have seen.
The second issue we had this week was low platelets. Low platelets could be related to the infection or to medication. In Dear Son's case, he actually had low platelets back in May, when a blood test confirmed them prior to his Make a Wish trip. Dear Son had some bruising on his legs and then it was learned that his platelets were low. This time, the Neurology Attending thought Dear Son's Valproic Acid might be the cause so they discontinued it. The platelets went up the next day and then remained the same today. I must admit I was a little worried when the removed the Valproic Acid in terms of seizure control. They wanted to remove it but didn't increase any of the other medications nor did they change the VNS. Dear Son did have multiple small seizures, multiple times throughout the day however I was able to control most of them with the VNS and we didn't have to use any Ativan at the hospital. My concern however is that once Dear Son starts moving around, he'll have more. I planned on asking Ped Neuro Doc today however he just returned from vacation today and didn't stop by. I had hoped to have a back up plan so I wouldn't have to page anyone this weekend. At this point, we'll just wait and see and hope for the best.
The problem with low platelets is that it can cause bleeding. It was explained to me that when your platelets are less than 20, you can experience spontaneous bleeding. While Dear Son's platelets are still under 100, they felt it was safe. The other issue with low platelets had to do with the Valproic Acid. Typically, if the Valproic Acid levels reach a certain number, they'll see low platelets. In Dear Son's case, his seizure meds, including his Valproic Acid, were in the therapeutic range and should not have caused an issue with low platelets.
Dear Son remains on a small amount of oxygen, currently one liter. The Pulmonary Attending thought it would be better to send Dear Son home on some oxygen so he wouldn't have to stay at the hospital while he is weaned off. He should be off the oxygen in another few days or so. We left the hospital around 7:15 tonight and by the time we went to the pharmacy and got home, it was late. The homecare company came here around 11:30 p.m. to set up the oxygen. They delivered a portable tank at the hospital so we could get him home. The plan is to continue oxygen, along with chest PT four times a day, nebulizer four times a day and to continue the antibiotic as well. It has a ten day course and we just finished day 4. I can't say that I was thrilled to get oxygen at home however I am glad to have some support for him. I think at this point and time, it's good to have a back up plan and at least if I have some oxygen at home, he can take his time getting better.
Overall, it was a good hospitalization. Dear Son wasn't horribly sick like previous hospitalizations. In addition, the staff was wonderful at all levels, in the PICU and on the main floor. There seems to have been some nursing changes and I must say it was the highest level of service I think I've seen in years.
In addition, a few of the physicians commented on Dear Son and what a good job I've been doing. The Pulmonary Attending told me today that she was amazed at how good he looked. She said she couldn't believe he was 18 and didn't have any pressure sores at all (When patients get older and get larger, it is much harder physically for caregivers to move them around and reposition them since they weigh more.). She said that his skin was remarkable and that the only way he could look that good is if I reposition him all the time to prevent pressure sores, which I do. Dear Son has a tiny pressure sore on his right ear where his ear crimps when he lies on his side. I told her about that and she said she had looked at that earlier in the week and said it was nothing. Overall, it was nice to hear such glowing remarks.
In addition the Pediatric Neurology Fellow was talking to me about Dear Son. He said he was amazed that Dear Son didn't have any contractures. Contractures are very painful and can result from a lack of good care. He couldn't believe as large as Dear Son was and as old as he was that he didn't have any. He said he feels bad when he sees kids as young as four or five with them.
Dear Son really seemed happier this week after the oxygen and antibiotic kicked in. He looked at many of the doctors, tried to say hello to a few of them and smiled. I haven't seen him this happy in a while so the extra oxygen must really have helped him.
One thing that was kind of funny happened today. As I have mentioned before, I massage Dear Son's legs and feet with organic, virgin, coconut oil on a daily basis. It's a great massage oil and the massaging keeps the edema (swelling) down. The cardiologist had recommended I massage Dear Son's legs/feet twice a day to help with the swelling (The coconut oil was my idea.). Well, every day I rub his legs and feet and talk to him about how nice it must feel, yada, yada, yada. I would ask him if he likes it and he never responded too much. Well today, I decided to rub his free hand and fingers. He had an IV in the one hand and his free hand was bruised up and bloodied up from the repeated blood draws and I felt kind of bad for him. So I put some coconut oil on his hand and massaged it really good, like they do in the nail salons. He started smiling and laughing and really loved. Here I'd been giving this kid some half hour leg massages every day and he was thrilled with a two minute hand massage. Who knew!
Overall, it's great to be home. I'll have to get his schedule together tomorrow for all of his therapies. The list is getting pretty long lately but I'll do better once I have some sleep in my own bed tonight. The hospital sofa is pretty brutal on my back. I've had horrible pain all week that resolves itself as soon as I sleep on my own mattress.
Thank you for your interest, prayers and support for Dear Son. It is much appreciated.


Anonymous said...

I'm so glad to hear things are looking up and Dear Son is happier and interacting with people. It must be lovely to hear from medical staff how all the care you take of him pays off - you should be proud.

Lori x

Anonymous said...

Am so glad you got take him home! Home is the best place to recover, and it gets him away from hospital germs.
What a relief! Sending positive thoughts your way.


Gloria said...

Hello, and thank God that Dear Son is home! Yay! First, before I forget, here's a couple of links if you want to order flameless candles. They are GREAT, trust me, I have them. I bought this one as a gift for someone - $15: AND they have tons on ebay. Example: ANYWAY, I am glad Dear Son is home and feeling better, and at least you can relax and get a good night's sleep now. I also thought your story of the hand massage was so sweet! Well, now there's another daily job you have to add in to your repertoire of responsibilities! LOL! A mother's job never ends, right? :)
Take care and many blessings to you and Dear Son.

Gloria said...

P.S. I forgot to say: I am so glad that THIS time you had wonderful physicians and staff to take care of Dear Son. And weren't you so complimented that they gave you kudos for taking such good care of Dear Son all these years? It's always nice to get a confirmation, isn't it? Plus, sometimes we NEED confirmation that we are doing well... It gives us that "boost" we need to know we are doing the proper things and the confidence to continue. Good for you!

Dream Mom said...

Thanks everyone. Yes, it was nice this time to hear them talk about Dear Son. While typically, they tell how well he's cared for every time, this time they told me what in particular set him apart-meaning how hard it really is to keep a full size person from getting bedsores versus a small child or how important it is to prevent contractures, etc. and that some kids have them as young as 4 or 5 and how painful they are. Seeing these things from their perspective as well as learning the differences for the patient was important.

And certainly it was good to hear this time in particular since I was spending so much time trying to do all of these things, from turning him a lot to massages, etc. It can get tiring especially when I am sleep deprived so it helped hearing these things to reinforce all of my hard work and to give me a boost. Some days, you feel like you do all of these things for nothing and that it doesn't make a difference. You know it does but well, you know, everyone feels that way sometimes.

Gloria-Thanks for the links. I have seen those candles before and I should be just fine without using any candles for my tablescapes, etc. I stopped using candles last year after he came home with pneumonia-after that I spent a lot of time getting rid of anything that might compromise indoor air quality-everything from candles to changing to green cleaning so that I could keep our indoor air quality as clean as it could be to make it easier for him to breathe.

LOL on the hand massage and adding it to my list...I don't mind that at all-it's fun when you see them smile and it's sweet that he loves it so much.

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