Tuesday, May 12, 2009

Dear Son ICU Update IV- Much Improved!

I managed to get home today to post an update. When I was home on Sunday, I turned my furnace on and got nothing but cold air. I called the leasing office of my apartment complex the next day and they came out to fix my furnace. The heat exchanger broke and they needed to replace it. In the meantime, they broke the gas line. A few jumbled messages from the leasing office staff had me worried. Today I got a call from the leasing office saying there was a problem in my master bedroom closet. They said a sprinkler went off in the hallway and water seeped into my closet. They said they had the carpets cleaned and had giant fans in my apartment. I envisioned all of my beautiful floral prints and some decorative mirrors that I store there as damaged. I rushed home to find that wasn't the case.
Instead, I walked into my apartment and the patio door and bedroom window are wide open with these giant turbo fans blowing. The fans are so loud I can't even talk on the phone. All of my furniture has been re-arranged and pretty much, anyone can walk right in the apartment. The maintenance man came and explained that the sprinkler had gone off in the outside closet (where my furnace is located) when they were working there and they had to call the fire department. The water ran down all the walls and into my apartment dining room and into Dear Son's room. They had giant fans running and all of my furniture moved around. They brought in another vendor who will cut out the wet drywall and replace it tomorrow. Once the carpet is dry, they will clean them for me. Yikes!
As for Dear Son, I think we have finally turned the corner. His chest x-ray today was much improved. The chest pt (and albuterol) every three hours seems to be working along with turning him over every two hours. He is still on 4 liters of oxygen but he is on a nasal cannula. They discontinued the Lasix today, which he was on to help pull all of the fluid out of his system. He still has a central line and they are feeding him very slowly, around 40 ccs an hour, which is roughly a half of a cup or so, if I recall.
The Pediatric Intensive Care Attending (PICU) Doc met with me alone today and recommended pallative care. They have a program for kids that is funded through a grant where they provide care and support for weak or "vulnerable" children and she thinks that Dear Son could benefit from that. It's different from your traditional hospice where the patient is only given six months to live. I also reviewed my notes from Dear Son's medical history and informed her that not only did Dear Son have two MRSA pneumonias in 2006, but he had a right lung pneumonia in 2007, 2008 and a right lung collapse in 2009. My concern was how I could deliver the best home care after this hospitalization and what future admissions would look like with these concerns. We will be meeting with a pulmonary specialist to see what else we can do.
She also discussed having a plan in place for the future. I had been worried about a trach however she explained that a trach is only put in kids when they have airway issues or when someone is vented. In Dear Son's case, should he get another pneumonia, there may come a time when we have to decide if they can do a trach and send him home on a ventilator or if
we will refuse that. An ugly decision for sure.
Our greatest challenge now is still feeding, since they are concered about reflux. They need to insure that Dear Son does not aspirate his own saliva nor his food. I asked Ped Neuro Doc if Dear Son needed a Nissen. When he had his g-tube put in many years ago, it was strictly for meds and not used for feeding. As a result, they chose not to do a Nissen. It was less invasive to omit it and it really wasn't needed. It was a good decision at that time and for many years. Now that Dear Son has these issues, they think they want to have him in for surgery to do a Nissen. They would have to wait eight weeks or so or whenever he fully recovers from this hospitalization.
We are still in the ICU and I expect we will be transitioned shortly, maybe even tomorrow, to a regular floor. They are proceeding cautiously and want to see how he does without the intense care of the ICU. Currently, they do chest pt on Dear Son every three hours where they hook up a vibrating pressure vest to break up the fluid in his chest.
I am going back to the hospital now. Thank you all for your continued prayers and support for Dear Son and his mother. I know all of your prayers and good wishes, along with our medical care, has helped Dear Son turn the corner.

10 comments:

Lois Grebowski said...

wonderful news! I checked back again today to see if there was an update.

So glad to hear this. I will still keep y'all in my thoughts and prayers. Big hugs to you both... dad too!

Anonymous said...

Oh, I am so grateful for you both for these positive developments. Like Lois, I was also checking and hoping the news would be good. We know there is still a long road ahead, but please know we are all saying prayers of grateful thanks for this turn of events and wishing you both the best.

Anne K.

PS: The Inclusive Choir performance was tonight, and I silently dedicated our performance to Dear Son - it was great!!!

Catherine said...

I have been thinking about you and Dear Son a lot these couple of days. I am so relieved that he is getting better. Both of you are in my prayers.

Poppy Q said...

Great to hear that there has been some positvie progress, and some doctors are formulating a plan for the future. The palliative care sounds like a good way to go, to give you some much needed help and input into caring for your dear son when you get him home.

We hope the home repairs go well too and everything is all dried out. Poor wiggles, he must be a bit stressed.

Big bear hugs from us.

Julie and Poppy Q

Anonymous said...

A lot of people are on trachs and studies of quality of life show that it isn't that bad. If he will need to be permanently ventilated, it will give him some time. It's another tube, but not so terribly different in quality of life deterioration than the feedings. Doctors often greatly overestimate the negative impact when talking to families - what doctors see as a big loss is not necessarily what patients themselves see.

http://www.ncbi.nlm.nih.gov/pubmed/18280979?ordinalpos=17&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum


http://www.ncbi.nlm.nih.gov/pubmed/17562504?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/16934163?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

There are plenty more, just search for tracheostomy and quality of life. There is hardly any evidence to the other opinion - that it is a horrible disabling procedure. Make sure you get unbiased info. I say this as a doctor - we often misperceive and advise accordingly.
I wouldn't want you to decide based on faulty information.

And I'm glad he's doing better!

Daisy said...

I'm glad to hear that DS is improved!

But grrrrrrrrr! about the water mess. That happened where I lived once and we had to stay in a hotel for 2 days. No fun!

Anne said...

I'm so happy to hear things are getting better for Dear Son!

Emily said...

That is so wonderful!
I used the Vest he is using for many years as a cystic fibrosis kid. In fact, I was one of the first people to use it when it first came out, back in the 1990s. It's a great thing!

Rambling Round said...

Just checked your blog and discovered Dear Son's illness. So glad he is better and so sorry that he has had such a difficult time...you too, especially with house repairs on top of everything else. I will be praying for you both.

Christina said...

So glad to hear that DS is improving!! Maybe it's just the way that you wrote it-- but is the Doc saying that they do not do trachs for kids who have trouble managing secretions? That has not been my experience...
I agree with anon above that although it is of course not ideal, that should he need it a trach may well be helpful and make him more comfortable- esp as he has been choking on his secretions so often. Just something to keep in the back of your head--
Prayers for a speedy recovery for dear son Dream Mom

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