Thursday, May 14, 2009

Dear Son Update-Out of the ICU

Dear Son was transitioned last night to a regular Peds floor. They want to see how he will do with less care. Currently, he is still on 3 liters of oxygen via a nasal canula, receives chest pt via the vibrating vest along with albuteral every three hours. What is still problematic is the chest x-ray. Monday, Dear Son had perked up and on Tuesday, they didn't feel he needed a chest x-ray. I wasn't comfortable because I hadn't see consistency in the chest x-rays and asked if they could do one. They did it and the findings (Findings are the clinical impression by the radiologist.)came back unchanged, but in viewing it, I thought it looked worse because the left lung fluid had increased and the right lung fluid was down whereas the prior day's x-ray showed similar amounts of fluid in the left and right lung. Yesterday they did a chest x-ray (without my prompting, lol!) and the findings on the chest x-ray were worse than the previous chest x-ray. The left lung showed increased collapse and fluid and the right lung still was a bit worse as well. I typically ask to see the chest x-rays every day and I always read the impressions and the findings as well as listen to what the Attending Doc tells me. I would like to see some stability in them with the chest x-rays being the same or better on a daily basis and they agree. Also, while he seemed himself on Monday, he was more subdued on Tuesday. He did have his eyes open but was very quiet. Yesterday, he slept virtually the entire day and opened his eyes only a few times. I would have preferred to see him more alert and active on Tuesday and Wednesday however his behavior seemed to mimic the trend of the chest x-rays. They were concerned as well which they verbalized to me which is why they kept him in the ICU a bit longer. They still were unsure up to last night as to whether he could manage with less nursing care on a regular peds floor and were debating a "step down" (A step down floor is a step down from the intense nursing care of the ICU but more care than a general pediatric floor.). Going forward, they are content to do chest x-rays as needed. They also feel sitting him up would help with the fluid. Since I can't lift him into a chair, Dad came down to lift him into the chair. The hospital has difficulty locating their hoyer lift and while they do have a four man "lift team", the last time I tried to use them to lift Dear Son into his wheelchair for discharge, they couldn't locate the team and only one guy showed up. Some time later a second guy showed up and they said they couldn't lift him and asked me for help. Still unbelievable that in 2009, a level one trauma center for peds, that cares for medically complex children like Dear son, doesn't have hoyer lifts on every floor or even the ability to locate one.
On a better note, the central line has been removed and he has completed his course of Zosyn (Last week, he was on Vancomycin as well but that was discontinued).
Today, we have our follow up appointment with the Neurosurgeon that was scheduled at the time of the operation. He never came to see me after the surgery or while I was there which would have been nice. I think in light of the situation, a little face time with me would have gone a long way. He did show up briefly last week, when Dad was there, and stated it wasn't as bad as he was told, which probably wasn't the best statement to make in light of Dear Son's fragile condition. The fact that he remained in ICU for ten days and the endless discussions over the intubation and whether or not they could extubate, along with everything else, including the recommendation for pallative care, would be very hard to make a case that he wasn't "that bad". On the flip side, showing up and having a conversation with me over the surgery, would have gone a long way. I don't expect things to be perfect, but I do think in this situation, that while a neurosurgeon may not have been able to predict the mucous plug and lung collapse, I do think he could have made a better decision regarding the general anesthesia versus the heavy sedation which prompted the lung collapse.
Next steps are to get an extended EEG, seizure labs, see if he can manage with less care on a regular peds floor and to meet with the pulmonary specialist to see what is needed so we can go home. Ped Neuro Doc mentioned the possibility of being released on Sunday but I'll have a better idea when he gets back in town tomorrow. Dear Son will probably get a Nissen done in about two months or so, or whenever he had recovered.
Thank you again for the good comments and information on the last post and for your continued prayers and support.


Billie said...

Glad to hear things are improving. Thinking of you guys.

Anonymous said...

All the best to you, as always. Hang in there.

Anne K.

Poppy Q said...

Ohh my gosh dream mom. We are glad you are out of the ICU, as sometimes things can be a bit hectic and noisy in there.

I hope dear son continues to make improvements and the x-rays get better. Certainly you will want them to be much better before they discharge him.

I still can't get over the issue with lifting your son and the unavailablity of a hoist. Shocking. Are the physiotherapists/physical therapists able to assist with this issue? Usually they are experts on moving patients. Our own 300 bed hospital has manual handling reps in every department, and we all have training in moving patients every year and it is a requirement of our job to attend this and a compulsory CPR course.

Anway, big hugs to you. We hope you are getting some rest.

Julie and Poppy Q

Ashley's Mom said...

Lots of hugs and thoughts and prayers still coming your way. Hang in there - it does sound like things are looking up a bit.

Anonymous said...

I'm out of town at my brother's school for a family weekend. Just checking in to see how Dear Son is doing. Sounds like he's improving... wonderful news!

Continued hugs, thoughts, and prayers!

Lois Grebowski

Anonymous said...

I'm so glad Dear Son's condition is improving. I have been thinking of you these last few days. I hope you can relax slightly now and get some rest.

Lori x

canucker said...

Dream Mom, I am very glad to hear that dear son has turned the corner on this illness and is out of the ICU. My son Joe had a mucus plug one time as well, so I completely understand what you both have been through.

Re: trachs
I also had made the difficult decision to not trach Joe. It was offered as an option when he was in the ICU, to make it easier to suction out his secretions. It is a personal decision, but it wasn't a road I was prepared to go down.

Part of my decision was based on my home support set up. With a trach, Joe would have needed 24 hr nursing care and that was beyond the scope of what my local support providers would allow for services at home.

He would have needed to be moved to a nursing home and that was NOT going to happen. I knew in my gut he would never survive there.

Things may be different where you are, but I was determined to care for Joe at home.

Hoping for even more improvement in the days to come, so you both can get home. Nothing more exhausting than a lengthy hospitalization.


Dream Mom said...

Thank you all for your support.

Canucker-I appreciate your comments, as always. I would like to have a conversation via e-mail with you if you are interested. There aren't many people I know who have been down this path and I know from many of your previous comments that you are someone I'd want to know. My e-mail is I would be interested in hearing more from you although I would not be available until the end of the week. Dear Son should be released on Tuesday if all goes well and then I would be home. I can't respond at the hospital.

I agree with you on the nursing home issue. I'd never place Dear Son anywhere but home.

Lois Grebowski said...

just checking back in to see hwo Dear Son is doing....HUGS!

Rambling Round said...

I've been away for a few days. We took our own Dear Son to the beach for a little vacation. So glad that yours is doing better and almost ready to come home. Incredible that the hospital did not have an available lift...almost as incredible that the Big Academic Med Center our son was in a few years ago only had one pediatric bath chair that we had to borrow from physical therapy. It's also incredible that your son was sent home while still under heavy sedation. Even outpatients deserve to be fully awake before going home, especially ones that are medically fragile, and to be really safe, if they don't respond within a reasonable time, they should be admitted under observation at least overnight. It could save insurance companies tons of $ and perhaps prevent patients from becoming so critically ill to begin with. Hugs to you both.

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