Sunday, November 22, 2009

Dear Son Medical Update #8: Do or Die

Dear Son-Marks on his chest are from the central line. Bruises on his inner arms are from trying to locate a vein for the IV.

Things have gone south since I last wrote. On Friday or so, Dear Son began running a fever. He ran a fever for over 24 hours and yet they were unable to determine the source of the fever. They did some blood tests and a blood culture however no bacteria grew so the good news, if any, was that we didn't have a bacterial pneumonia. They did however start an antibiotic for 48 hours to cover it.

The lungs continue to get worse. On Saturday, Ped Neuro Doc told me that he was approached by the ICU Attending Doc and the Pulmonary Section Chief and they were worried Dear Son is not getting better. They are not sure what more they could do. He told me the odds that Dear Son will survive are around 50%. He states that they really need to do some deep suctioning on Dear Son, something that I had been quite opposed to. I have a rather weak stomach and the main reason is that deep suctioning requires a tube be placed up Dear Son's nose and then down to remove the fluid from the lungs. Bottom line it hurts. I have never met anyone who has ever recommended it nor anyone that does it that ever had it done. I can't condone something that will hurt like that for a child that can not speak, can not push someone away when something hurts, etc. I had a similar test done once and I couldn't complete the test because it felt like someone sticking a needle up my nose. It was intense pain and I would not do it for Dear Son. I had made that pretty clear.

Ped Neuro Doc felt however that based on his conversations with these physicians it was something that needed to be done. I reluctantly agreed to let them do it however I did not feel great about that decision.

What was also troubling to me is all of the different messages that I receive there. Because Big Academic Medical Center is a teaching hospital, the Attending Docs do rounds with the residents. The problem this week was that the Attending Doc never once came to Dear Son's room and had a conversation with me. Yes, I have made it know that I expect to be there for the rounds but the rounds forum and purpose is for teaching. I don't feel it's private and I don't care to ask questions regarding life issues while standing in the hallway with the cleaning people, reception people, people faxing, every nurse standing in the hallway and anyone else. That's not fair to Dear Son or to me. It amazes me in this day of HIPPA how a patient's privacy is not respected.

I told Ped Neuro Doc that it is troubling to hear things that they don't know what else to do when the Attending Doc and Pulmonary Doc never even stepped a foot in Dear Son's room all week despite the fact that I have been here 24/7. He said that the Attending Doc is timid and I said that was a personality trait and that he needs to do his job. It is costing over $100k per week in the ICU and at that rate, I felt I deserved at least a knock on the door and two minutes of face time or more to have them express their concerns and to answer any questions I may have. I also told him that we began seeing Pulmonary Doc in clinic after his May hospitalization. We saw her in August and have a follow up appointment in December. If she can't come around when Dear Son is sick and make a visit, then I won't need to see her when he's well. The entire purpose of having a doc and having them follow your child in clinic is so they know the patient and better decisions can be made.

Throughout the day, I also have multiple nurses, respiratory therapists and residents come by to check out Dear Son and listen to him. They all say, "he sounds great". Now at some point, these types of conversations and lies have to stop. If the patient isn't doing well, it does no good to have multiple messengers relay the fact that they "sound great". It isn't doing anyone any favors. And to have the Attending and Pulmonary Doc not show up at all is unacceptable. To be fair, the two prior weeks Attending Docs did come to Dear Son's room every day and talk and answer questions. As for residents, the rounds are interesting as well. It was amazing how many times they relayed inaccurate information about the patient during the rounds. In cases where the Attending never bothered to come in the room, who would have been there to correct the information had I not bothered to participate?

Late last night, they began deep suctioning. I didn't watch the first one but remained in the room. During the second deep suctioning, just two hours later, I stood up to see and was horrified at the amount of blood that was suctioned. In addition, Dear Son bled for an hour later and some 90 minutes later, this is what his face looked like. I requested to speak with Attending Doc but got on a Fellow. I stopped the deep suctioning. Dear Son looked like a boxer had smashed him in the face. I felt good about stopping that.
Photo of Dear Son's face 90 minutes "after" deep suctioning. They planned on doing this every two hours.

This morning however Ped Neuro Doc came by. He said the chest x-ray is much worse and there isn't any choice but deep suctioning or he'll die. He told me to leave the room and I told him that I worry about the pain from the suctioning for Dear Son-it doesn't matter if the leave the room or not if I know Dear Son is in pain. Despite the fact that we don't agree on this matter, I do have tremendous respect for him and he always does a great job following up on Dear Son, taking time to see us while he's in the hospital and always giving his best in making sure that Dear Son gets the best care he can. Not only is he a good neurologist but he is a good primary doc as well. I am lucky to have such a great advocate for Dear Son.
Dear Son's Dad was scheduled to arrive at noon and was going to stay through Tuesday. I told him he needs to call off work and stay with Dear Son all week since I can't be there for that deep suctioning. We argued a bit about that. I told him he had to stay with Dear Son since I did not want Dear Son to die alone.

Right before I left the room today, I asked the nurse to give me a minute or two to say good-bye to Dear Son. He left the room and I kissed Dear Son and told him I loved him. I told him that I was sorry I had to leave but that I didn't agree with them putting the tube up his nose and that they think it will make him better. I said his Daddy will be here with him. As I turned around I saw the door to our room was left open and the nurse was standing right outside the door. I was really angry. I have sat in that room for three weeks now with tight infection control procedures and the door was never allowed to be open for more than a few seconds to go in/out and here this nurse couldn't have the courtesy to give me a few private moments with my son. Outrageous.

I left the hospital today and was beside myself. I have spent the last eighteen years taking good care of Dear Son and looking out for him. I never dreamed that as things get down to the wire that I couldn't be there. I just can't stomach the fact that he can be hurting. Being your child's best advocate isn't always pretty and it can be uncomfortable at times but you have to do it.

After I left, I called Dad several times to see how things were going. After Ped Neuro's Doc pleas to me for deep suctioning, not once in the last ten hours have they asked about deep suctioning Dear Son.

This has really been a nasty hospitalization. I doubt we will ever come here again should he survive this. The conditions here have also made it challenging. The room is extremely hot at night, freezing in the morning, there is no air circulation and it's noisy. The pressurized bed is loud and blows dust around the room. With the infection control procedures, I am not allowed to go anywhere but the bathroom. So I can't buy any meals in the cafeteria or restaurant nor can I use the microwave or even heat up a cup of water for a cup of tea. It's like being in an airplane for three weeks. If that weren't enough, the public bathroom and shower are about a quarter of a mile down the hall. There are only two public bathrooms on the ICU floor and when you try to take a shower, people knock on the door for you to hurry up. I am not showering very much.

I guess I am also a bit angry. We were scheduled to get the swine flu vaccine and they ran out. Had Dear Son had the vaccine, the Section Chief of Infectious Diseases said he'd most likely be home with a cold and not here. It's really hard when I worked so hard to get him that vaccine (I was able to get the seasonal and pneumonia vaccine though.) and then to have this type of hospitalization. Missing the Make a Wish trip just bothers me to no end-I so wanted to see him happy. We went from planning the best birthday ever to him having the worst birthday ever and being on a ventilator. You wonder sometimes in the big scheme of things, why the hospitalization couldn't have happened after the trip. This is our 60th hospitalization. People have fun every day and you wonder sometimes why it couldn't happen for Dear Son.

In addition, my sister's birthday is tomorrow. She died from colon cancer on March 1st of this year. My mother had colon cancer and was cancer free for six years and now they think it's back. My aunt died from her second bout of colon cancer two years ago. As a result, my mother's physician wants all of us siblings to go for genetic testing. I told my mother that I wasn't interested since I have enough on my plate right now.

At this point, I just want to bring my son home. If there is nothing more they can do, then I'd like to take him home and love and care for him until it's time.
In summary, Dear Son has been in the ICU at Big Academic Medical Center for over three weeks now. He suffered from the Swine Flu and a viral pneumonia. He lungs have collapsed (addelectisis) from the pneumonia and they are doing chest pt, nebulizer treatments and vest therapy to help clear the airways. Yesterday they switched him from the non-rebreather (12 liters of oxygen) to the high humidity face mask to see if that would help.

Thank you for your continued prayers for Dear Son.

Note: Dear Son is eighteen years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a mutation of the ARX gene. He also suffers from a progressive neurological disease.


Anonymous said...

I really applaud you for complaining that being timid is no excuse for a doctor to avoid coming around. A ridiculous personality trait like that should not prevent him from doing his job and being a responsive doctor. It really annoys me too when things that seem so normal and simple seem beyond people's grasp.

So sorry you have having such a difficult and stressful time.

Susan said...

I have been following your blog for quite a while but this is the first time i have written. I find your blog very inspiring and I have recommended it to a dear friend who just had a baby that has some severe health issues that they have not diagnosed yet.

I am also a nurse. I worked for many years in an ICU and most recently worked with organ donation. The work we did with the families, in many cases, was to support them and help them understand what was going on and be an advocate for them. It distresses me to hear that you don't have that right now (an advocate) and I think that is something you could really use. I have a few suggestions.

I think (although I may be wrong about this) that there is a small soft plastic tube that could be inserted into DS's nose and left in place. When they suction him, they then could put the catheter through that and there would be somewhat less discomfort and trauma when they do suction him. The device I am thinking of is called an Iowa trumpet and I think it can be used for that. It would be worth asking about because I may be wrong about that.

I agree with you that the attending physician's should be speaking with you daily. To help with that, I would suggest a meeting with a physician, the nursing manager, you, respiratory therapist and any involved in his care. Is there a Case Manager or Social Worker that is assigned to the ICU that can also work with you. You should be able to address your concerns and listen to them and develop a plan of care.

Another question I have is does the hospital have a Palliative Care Team? If so, what is the policy about when they get involved in the care of a patient. Having the Palliative Care Team involved should not mean that you are no longer going to actively treat DS but they should be able to assist with making sure that all comfort measures are being done. If the time comes that you make a decision to take him home and take care of him and love him and care for him until it is time, they can assist with that as well. Hospice care would also be a good advocate for DS at this time.

My last suggestion/concern is the care and support that you are receiving. You have taken such wonderful care of DS all of his life and to see him not getting the same level of care right now must be heart wrenching. To be strong and to be able to continue to be a strong advocate for DS, you must be able to get your needs met. The hospital has to have a better system to allow you to have the basic things you need without having to go through what you are to eat or shower or do the basics you need. Many of the hospitals in the area that I live will order a meal for the family of a patient that is staying there. Especially if the patient is in the pediatric ICU.

I hope that knowing that you have touched a lot of people throughout the country with DS's story gives you some comfort in knowing the support you have through the blog. You have a lot of people praying for you and your family.

If there is anything I can help with or questions I can answer, please don't hesitate to ask.


Anonymous said...

I am so sorry for you and for your beautiful son.

In my experience, even the best doctors can fall into the mindset of "winning" at all costs, with winning being defined as avoiding death with very little regard to quality of life. If you can, consulting with a palative care team can help clarify what is possible.

The bottom line is that this is your child, you should be able to be with him and your wishes should prevail. Doctors are wonderful but they are not the parents of their patients.

I also know how teaching hospitals are; please do talk to the doctors even if it's in a hallway. Waiting for a certain kind of doctor to do the right thing in terms of private visits can be a fruitless task, I'm sad to say.

I'm holding you, Dear Son and his dad in my heart.


Donna said...

I know that deep suctioning is unpleasant, but I also know that it was a huge part of my DD surviving her last ICU visit, and we now do it at home once a week or so.
I would second what Susan suggested and ask about the Trumpet for his nose. It does help a lot.
Will continue to think of you all.

Anonymous said...

Dream Mom, I have been following your blog for a long time and been so moved by your devotion to him. I am praying for the peace of God to hold you through whatever comes next, and I hope the deep suctioning will help Dear Son. We've also experienced the inexcusable behavior of attending docs failing to visit the patient every day or at all, and I really don't understand how they can keep their medical licenses, even in a big academic medical center. Much love and hugs to you.


Michelle said...

I looked at the picture of his beautiful bloody face and wanted to cry, Dream Mom, I know this has to be the most awful time. we are so much alike in this kind of thing, for me lumbar punctures are tough. That is the one place I always draw a line in the sand, only if it is ABSOLUTELY necessary. and yet, one of my kids had to have repeated punctures as na infant. I still to this day, and she is 20, hurt for her and worry about the effects of that pain on her little psyche. I know that you have always been so gentle and tender with Dear Son, (it is hard to still call him that, I have to correct myself when I write his real name) I am hurting for you, and have been for weeks. This post...this one I guess leaves me with a deeper awareness than even those early days...this might be it for our boy. I have watched him grow from a little boy to a big boy, and watched the love and care you give him. and I cant stop these damn tears from falling today. all I can do is pray that if this is the time, that that precious boy and his mom are allowed some gentleness and kindness, and time to be together when the moment comes. and yet in my mind I cannot see you hlding him while he struggles, not able to help him. In my heart I want him to go gently, with your arms around him. and soon. and that sucks to write. I hope you know me enough to know the way I mean that. we love you guys. Know that we are here.

Claire said...
This comment has been removed by the author.
Dream Mom said...

Such wonderful comments and suggestions. I really appreciate it when many of you validate the same experiences. Some days we have a long way to go in healthcare.

Susan-I will ask about the Iowa trumpet. I think they use something like this when he was on the vent and it made it a lot less traumatic for him and for me. They had suctioned him a few times before inserting that sleeve in the plastic tubing and then they would just pull the string and pull the stuff up. (Sorry, I don't look too close and it's all a little icky for me personally.) But I do remember that it was a lot easier and stressful than the old way. Dear Son seemed a lot more comfortable and so did I.

I have already addressed some of the issue previously and had the ICU Director involved and they had a meeting with the ICU Managers, the Attendings, the Director of Nursing and the Nursing Managers so I am sure they are aware.

I am pretty comfortable speaking up so I don't feel as if I need an Advocate at this time. I think they probably wish I wasn't as outspoken. I think the best solution is just getting the heck out of there.

At our last admission, they did ask me about the Pediatric Hospice program and if I had an interest in that. At that time I didn't but we'll see how things progress this time. I need a little more time to wrap my brain around all of this stuff before I start moving in any one direction and asking for pallative care however of all the times I have been there, I am probably more ready for it this time than in the past.

Anonymous said...

Dream Mom-I am so sorry. I can't even imagine what it must be like. I am crossing everything for the deep suctioning to work and for Dear Son to recover with absolutely no memory of it.

Mary said...

Dream Mom...there isn't anything I can add to what has been said, except that I understand what you're going through. When I think about my daughter being in pain or discomfort, or not getting everything she needs, I can't deal with are doing quite well with the circumstances dealt to you. I so agree that it isn't fair to have lost the opportunity for the Make A Wish trip. I can't tell you how many times I have cried out "It isn't fair!". Knowing that I, too, may face something like this some day, makes me want to put my head in the sand, and pretend that everything will be okay...I know it won't. Ever since we started communicating about our kids, I have been fearful that I would get an email from you with bad news...partly because I can't admit that we could lose our children, partly because I don't how to comfort you when it does happen. All I can do is pray for you during this time, and let you know that I care very much, and I wish I could help in some way. You are such a good mom, and have given so much.

Keeping you and DS in my prayers.


Christina said...

oh Dream Mom- I am so sorry this is all happening like this. I would be so angry too. The Dr is "timid" so he can't talk to a parent whose child is critically ill?!?!?! I have no words for that.
I worry though that you will regret not staying with Dear Son during this time.
I don't know how far you are from the hospital but I think you should maybe try to go home each evening, eat a nice meal and take a walk or try to stretch or something but then spend your days there if you can...I know the suctioning is awful but I think it would be such a comfort for him to feel your presence there. In my experience, no matter what horrible thing they have to go through children seem to instinctively know their parents aren't sanctioning the procedure- even though the parents might be there when it is happening.
Continued prayers for you both.

Mr. Bailey Jackson said...

Dream Mom,
My thoughts and prayers are with you. But please do not ever apologise or question being your child's best advocate. You are! And at the end of the day the fact that you stood up for him will be your comfort, that YES, you did EVERYTHING that you could.

Anonymous said...

We continue to pray for you & Dear Son every day. May the knowledge that you are in the thoughts and prayers of so many people bring you hope and strength during this difficult time. God bless you all!

Canucker said...

Dream Mom, I've been in tears too, reading about DS's ordeal. I'm torn between wanting to write words of encouragement that things are going to get better, to wanting to let you know that you will be ok if this does turn out to be DS's time.

So please read this post as a little bit of both. Prayers for DS, that he turns the corner on this illness. That if he can't, that he be spared any more suffering. But prayers also for you, for strength to get through everything that you are enduring.

Emily said...

Oh, Dear Mom, am praying hard for you, DS and DS's dad.
I once spent two weeks in the ICU, but as a patient, not a parent. I can't imagine how hard this must be to watch.

Anonymous said...

I'm so sorry to hear about the trouble you've been having at the hospital but I echo what's been said above about how lucky Dear Son is to have you fighting for him. He will feel the love and strength coming out of you as you're by his side and this will be so soothing to him.

My loving thoughts and wishes are with you and Dear Son, and his dad.

deb said...

Dream Mom, We are continuing prayers and loving thoughts, for you, Dear Son, Dear Son's Dad, and his medical team. The prayers for you and DS Dad are for strength, for dear son for healing and peace, and wisdom for his medical team. My heart breaks for you all.
Thank you for the update. I wish I was there to hug all of you.

Dream Mom, you are an amazing mother. I am humbled, and in awe of you.

Love to all-

Anonymous said...

Still keeping y'all close to my heart and in my prayers

Anonymous said...

Palliative Care does not mean the same thing as hospice! You can have the palliative team involved while still seeking treatment! What they will do though is address his comfort--pain, anxiety, etc--and optimize interventions for those things. Should you at some point be ready to talk about hospice they CAN be a nice bridge, but it's isn't by any means a slippery slope to hospice!

That said, it troubles me that they were so insistent on the deep suctioning but have stopped since you left the hospital. Unless his condition has changed significantly in one way or another, that just makes no sense to me.

And absolutely, 100% agree that the Attending needs to spend a few minutes with you daily at least. If you are uncomfortable (and I don't blame you) chatting in the hall, then ask that they plan to meet in a conference room or office on the floor.

Praying for you and DS and his dad.I hope that it is not his time to go, and that he recovers to get his Make a Wish trip. If that is not to be, then I wish him peace and comfort, and dignity. You are an amazing advocate for him. You ALWAYS know what is best for him, always. Trust that. It has never served you wrong and it will not now.


Anne in NY said...

Aching for you all -

With love and prayers,


Anonymous said...

Thinking of you, your dear son and his father often.

Donna Karis said...

Dream Mom, I am in tears reading your last post. My son was in PICU for more than 5 weeks, with one virus or infection and pneumonia, one after another, all the while in status epilepticus. He had a 50-50 chance of living too. Oh, how I feel for you and your son. I hope in a small way our posts will help you cope. I am praying for your son and you.

Ashley said...

Thinking and praying for you, Dream Mom and for your son. May God give you strength to continue.

Liz said...

All my love and prayers to you and Dear Son. You are an amazing person. Dear Son is gorgeous and such a stronger fighter.

Mary said...

Thinking of you and your Dear Son and wishing for you both peace.

Stephany said...

I understand your frustration dealing with the teams of people and the lack of time alone to say good bye that day the nurse held the door open.

I have a high need daughter and the stories are not the same, but the dealing with staff is a lot of burden in a very hard time, I understand your grief and complaints are totally valid.

I am very sorry to read about your son here, I found it via another blog, and just wanted to say you aren't alone, in this world.

What you have said here about being an advocate and mom and how it's not always easy or pleasant, but we have to do it, is what I say too, and yet recently have been very worn down by a current hospitalization of my 21 year old daughter, and reading your blog entry here has helped me remind myself we are our children's best advocates and love them so much.
Sending your peace and strength.

Anonymous said...

I'm continuing to pray for dear son and you and his Dad. Please try to get some rest, and I hope you can get back to be near your dear son. I am following another blog where a child has H1N1 flu, is in a coma, and is also having a problem with bleeding around his tubes and in his lungs. I hope some healing can start soon.

Billie said...

I don't know what to say except that I care deeply, and you are in my thoughts. The whole available vaccine, 18th bday, make-a-wish trip, stressful and less-than-optimal all just sucks so badly and my heart breaks for Dear Son, and for you guys as you struggle to deal with all of these things that no parent should ever have to endure.

I have shed many tears as I have read about your journey over the years. Especially now. But I appreciate the way that you have shared your story and the inspiration you have given me as a mother.

Thinking of you...

JGH said...

I'll be thinking of you and Dear Son and wishing you strength, Dream Mom. I think it's terrible that you haven't gotten adequate attention from the doctors - you are doing all the right things. I know it is hard for you not to be with him, but even harder to see him in pain.

The Keeper said...

Thank you for sharing all of this on your blog. Thank you for being there for your son. Thank you for hanging in there.

erika said...

I have no words. But my heart is aching for you and I'm carrying you in my prayers.

Anonymous said...

I'm so sorry this is happening to DS and to you. I just can't imagine the suffering and frustration. Will continue to pray for all three of you.

Anonymous said...

Dream Mom -

My brother has cerebral palsy and is very much like Dear Son. He cannot walk, talk, eat by mouth and all we rely on is his constant smiles when times are tough. He, as a baby, had extremely severe epilepsy. So much so that he had a left hemispherectomy completed. Not only was his life changed, but my family's as well. I'm sure that Dear Son has greatly impacted your life. He made you become a better person.

I just wanted to let you know that you remind me very much of my mother. When my brother was born I was about 1 year old, and ever since that day she has continuously fought for him. Every hospital visit, every phone call with the insurance company, every day of her life. She is his voice. I very much enjoy reading your blog, for it makes me feel as if I am not alone in this world.. so thank you. And just remember that whenever times are tough, you are not alone either. You are Dear Son's voice and someday, you will be rewarded for that.

-Anonymous (16)

Dream Mom said...

Thank you so much for such a thoughtful and lovely comment. It does feel like a big responsibility some days but I've grown into the role. What never wavers is the love and commitment for children like Dear Son and your brother. Thank you again.

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