Wednesday, May 06, 2009

Dear Son in Pediatric Intensive Care

Monday's surgery to replace Dear Son's Vagus Nerve Stimulator went fairly well. The surgery was scheduled for 10:30 a.m. however it did not start until after 1 p.m. Since we don't have a wheelchair van, I have his Dad come along to lift Dear Son into his SUV for transport. Since the incision was under his left arm, he would tear the incision if he did this. I spent the morning of the surgery on the phone with the insurance companies trying to get approval for an ambulance ride home. I contacted Blue Cross Blue Shield, the primary insurance company and explained that it was medically necessary. The benefit plan stated however they would only pay for an ambulance if it was an emergency so they denied it. I was able to get prior approval from the secondary for an ambulance to transport him home. At 3 p.m. he came out of surgery. They explained that he was heavily sedated but that he did well.
Around 5 p.m. or so, they called the ambulance to take him home. Dear Son started choking a bit as if he were going to throw up. They gave him Zofran however some time later, I noticed what appeared to be blood all over his arm, at least from the angle I was sitting at. When I inquired about it, they checked and said it wasn't blood but he had an allergic reaction to the Zofran that turned his skin bright red. Anesthesia was called and the doctor gave him Benadryl for it. I took Dear Son home and things seemed to be going well. To make sure he was o.k. I layed down on the bed across from him when I got home to listen to him breathe. All appeared to be going well. He slept through the night on Monday and all of Tuesday. He never stirred and never woke up.
On Tuesday afternoon, I began to get a little concerned because he hadn't woke up at all. They did explain that he was heavily sedated before I left the hospital, but around 3:30 in the afternoon his breathing became somewhat different and labored. By 6:30 that night, his breathing had deteriorated and he was breathing what seemed to be one breath a second. I don't know how else to describe it, but I know when Dear Son is in trouble. I take his temperature and it's 101.7 however his arms are freezing while his head is hot. Not good. I paged Ped Neuro Doc. He recommended I take Dear Son to Big Academic Medical Center right away. Since I can't transport him on my own, I had to call 911 to get an ambulance to take him to Local Hospital and then Ped Neuro Doc sends transport to Local Hospital for pick up. We agreed on the plan and he began getting the admission to Big Academic Medical Center.
Paramedics arrive and I explain that he'll need oxygen; I give them his history, tell him about his surgery and about the fever. The paramedics take his oxygen saturation and it's 77% with his respiration at 30-33 breaths a minute. They begin oxygen and transport him to Local Hospital. Local Hospital works on him a while and attempts to get an IV in but can't. They have six nurses attempting it and finally use a "quickie ultrasound" machine to locate a vein. Around 9 p.m. the air transport team from Big Academic Medical Center (BAMC) arrives. They explain they need to work fast since they want to get him to BAMC before they need to put a breathing tube in him. I am worried.
Prior to leaving, they ask me to sign a consent form to transport him via the helicopter. Dear Son has been transported five times like this however this consent form is different. Written on the consent form is the fact that I am signing off that I am aware of, "crash and/or death". They've never done that before. I wonder how bad off he really is. As they get ready to leave the room, they turn and ask me if I want to give him a kiss. Things like this make you worry he might die. I kiss Dear Son and they ask me for my cell phone number so they can call me and tell me where to meet him. (I am going home to grab my overnight bag and meet them at the hospital. They have everything they need to treat him. I have an emergency information sheet with diagnosis, meds, contact names, the works.) They said it might be the ER or the Peds Intensive Care Unit (PICU). Usually, this isn't a major concern, since I drive to BAMC and then they just tell me where he's at, not a big deal. So the fact that she is calling me personally, is really worrying me.
They call me on the way down and he's in the PICU. When I get there, they are working on him. I wait for them to vent him however they don't. They've taken a chest x-ray and suspect a right lung pneumonia or an infection from the surgical wound. His wound seemed fine Tueday morning but by afternoon it had started to bruise. He's working awfully hard and I really don't like it. They work on him all night, trying breathing treatments but nothing seems to work. They state the numbers on the monitor aren't bad but what is odd to me is that his physical condition is deteriorating. He is working far too hard and as far as I am concerned, we need to do something. I tell them repeatedly throughout the night that he's working too hard. Interestingly enough, Big Academic Medical Center would tell me later that Local Hospital told them Dear Son was septic and going to die. I am not convinced Local Hospital knows what they are doing. Despite the numbers on the monitor, doctors repeatedly show up throughout the night and finally, around 4 a.m., neurosurgery stops by to check out the incision. They think it's pretty good but everyone is still pretty concerned.
By morning, the Attending Doc comes in and states that Dear Son is still working far too hard. I agree with her. They do a chest ultrasound and she states that they will attempt to run a pigtail catheter into the lung (actually the air space next to the lung) to try and drain the fluid. The lung has partially collapsed and from the looks of the x-ray there is fluid. They attempt that but don't find any fluid. They then put a central line into his groin since the IV's keep blowing. He had an arterial line but in when he came in and that was still o.k. If that doesn't work, they will need to intubate him however the problem is that if they intubate him, they will not be able to extubate him. She asks me how I feel about that and I tell her that I know from the way he is breathing that we need to help him or he'll tire out. I can't worry about not being able to extubate him without doing what we need to do to help him.
On the inside, I feel terrible. I hope Dear Son is strong enough to come through this but I am beginning to wonder. Things don't appear to be going very well. Dear Son has never come to nor opened his eyes since Monday and the prospect of him being on a ventilator forever is humbling.
Ped Neuro Doc comes in to speak with me and says he has reviewed the x-ray with Dr. Y, the radiologist. Apparently, the brochial airway on the right is blocked with a mucus plug and that caused the lung to collapse. The lung collapse is what they saw on the x-ray (meaning it wasn't fluid). They suspect that the sedation from the surgery inhibited Dear Son's ability to move or cough thereby inhibiting his ability to swallow and process his own secretions. As a result, he aspirated his own secretions and developed a mucous plug. (Remember he wears a Scopolamine patch normally to dry up his secretions since he can't process them normally.) This makes sense to me since Dear Son didn't move or stir at all on Monday night or Tuesday.
The Peds team however thinks that chest PT (where they pound on the chest and back) may break up the mucous plug, which will get air into the lung and help him breathe easier. Ped Neuro Doc doesn't think it will work and even if it does, he thinks Dear Son is breathing far too hard and needs assistance. He recommends he be vented but does tell me that he thinks he can be extubated. I am relieved. He knows Dear Son best and has cared for him since he's been ten weeks old. He also functions as Dear Son's primary care doc. He does an outstanding job. I am relieved in some respects that we all agree that Dear Son is working far too hard.
Peds does 40 minutes of chest PT and manages to break up the mucous plug and get air in there. The x-ray looks better and they think he is breathing easier. They show me the x-rays and I have to agree. I still am not comfortable when I look at him and see him breathing so hard but they try to convince me that he is breathing easier. I think it made a slight difference but I still think he's breathing hard enough that I worry it's going to exhaust him. He's been breathing hard since 6:30 Tuesday night and he still isn't much better. He still is not awake.
Overall, I am very concerned. Dear Son had a relatively simple surgery to replace his Vagus Nerve Stimulator and yet he wasn't able to manage it. I still don't believe we are out of the woods but I certainly feel better than I did this morning when they said that he'd never be extubated. After all, this is the PICU at a Level One Trauma Center. They do this every day. If anyone knows, they know.
As for now, I have just left the hospital to come home for a few minutes while Dear Son's Dad is staying there. I'll keep you posted when I get a chance. I don't have pc access there due to contact precautions (Dear Son previously had two MRSA pneumonias there.) Dear Son is on two antibiotics: Vancomycin and Pipercillin. They are checking his blood gases every two hours to see if they will improve. They are moving him over from side to side every two hours so he doesn't have any more lung issues on either side. This is hard for Dear Son since his left side is still bruised and sore from the surgery. I am sure that isn't too comfortable to lie on that side. They continue to treat his fevers. They will continue chest pt in order to avoid intubating him. They expect that we will be there for a few days.
Please pray for Dear Son. I will update you when I can.


Poppy Q said...

Ohh Dream mom, you and dear son are in our prayers and thoughts. Keep holding his hand and giving him kisses.

Julie and Poppy Q

Anonymous said...

Dream mom,

I am a long time reader. I found your site when my son was diagnosed with infantile spasms. I pray for you and Dear Son often, but will be sending up extra special prayers in the coming days. Please, update as you are able.

Anonymous said...

You and Dear Son are in my thoughts.

Kathryn said... are both in my prayers. Sending you love and hugs. :(

Connie said...

You, too, must be exhausted. You and Dear Son are in our thoughts...

AJ and Adam said...

You and your son are in my thoughts and prayers.

deb said...

Praying for healing for Dear Son, and for strength and comfort for you, Dream Mom.


Anonymous said...

You are in my prayers.

Remember to rest and take care of yourself too.

Update when you can.

Anonymous said...

I'm tearing up as I read this. Most definitely, y'all are in my thoughts and prayers.

Sending hugs and love from across the internet, too.

Leslie said...

Lots of prayers to you and Dear Son + a Rosary or two. Sending HUGS across the internet.

Anonymous said...

I'm a long time lurker- I just wanted to lend my prayers! I hope dear son gets well soon!

Sara said...

Thinking about you and praying for you both to be able to be well.

Anonymous said...

I, too, am a long-time lurker and special needs mom. I have been praying for you and your Dear Son every day. Wish there was something more I could do to help; you must be exhausted. May all the thoughts & prayers offered here bring you encouragement & strength.

Karen in WI

Anonymous said...

Long-time reader of your blog. You and your Dear Son are regularly in my thoughts.

Anne said...

I will be sending all of you many positive thoughts and prayers.

Anonymous said...

Another long-time reader here. You will both be in my thoughts.

Lori x

Anonymous said...

Sending my prayers to both of you.

Dream Mom said...

Thank you all so much for all of your thoughts and prayers. I appreciate your continued support of my darling son.

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