Saturday, August 4, 2007

When Drs give up hope

What do you do when the Drs, those who hold the earthy key to Reuben's health, give up on him?

Following endless persuasion, Reuben was taken off his feed at 4am, and patiently waited til 4pm for a scope by the Ears Nose & Throat (ENT) surgeon, Dr Krishnan. Reuben was wheeled away to the operating room.

Dr A, cardiologist, came in to say the aorta balloon heart operation last Friday may have been more successful than he initially thought and then he confirmed that the head cardiac surgeon not only did not want to do the VSD (ventricular septal defect, a large lower ventricular hole/murmur), ASD (upper hole) and PS (pulminary stenosis/narrowing) operations now because of Reuben's size, but... he was rejecting Reuben as a patient. Full stop. It seems Dr Starnes thinks Reuben is deaf/blind and that the unknown complexities of Charge make the heart surgery too risky, that perhaps we're best to let him be. But if you were to accept that, what does that mean? We let him slip gently into heart failure, then cardiac or respiratory arrest and passing?

We sat in the garden with this heavy news in our hearts. The sun was blazing down and yet I was shaking with the cold. Dr Krishnan then came out with the ENT scope photos from the inside of Reuben's throat and said that despite granulomas (nodules causing by friction from the intubation tube he's had for 3 weeks) and lots of secretions, nothing had changed anatomically since his last ENT scope on May 25th.

This was great news, oh and by the way, the MRI scans showing no auditary nerves (total deafness), need not necessarily be conclusive. The scans are better done when he's about 2!

We walked back up to the PICU and saw a host of Drs around Reuben. Suddenly things were changing. Dr D was speaking bleakly to us for half an hour, confirming that Dr St has no interest in meeting Reuben, will not perform cardio surgery, neither now nor later, would not perform surgery if Reuben is trached, and that the upper airway obstruction is not secretion related, but due to floppy tissue, generically put under the category of CHARGE, as these Drs so often do. Bedside manner is not something becoming Dr D. I was unable to stand as I listened to him. The issue of performing open heart surgery with a trach: the trach leaves a hole in his throat which is open to infection. By opening up the sternum for open heart surgery, infection can be passed into the heart.

Yuka has already posted and lovely CHARGE mums already replied to give us some hope. Erika is now 12 after cardiac arrest during and after similar heart surgery. Her parents did not give up hope. Kennedy was given an oral airway (must learn more) and we were introduced to her at the CHARGE conference, a happy smiling girl.

Yuka has told me I need to hold onto a place where the Drs cannot touch us, and that's our love for Reuben.


MK said...

crying for you here in arkansas..people come from all over the world to arkansas childrens hospital b/c of their care ability to heal. that is where lucas was..i believe in the power of a praying mother so from one charge mom to another i am breathing for you in the moments you slide down the wall and find that the world has grown strangly dim.... the miracle of standing in the gap for loved one is so personal and we are doing this for reuben and believe that he will receive the breath to breath resesitation he needs to come full circle in this..we are holding your arms up

mog-aj said...

Catherine, Jason and of course Reuben Jack.

You must only listen to your hearts and those of the people who truly care about you. Not the ones who are willing to give in. Reuben is such a fighter and not ready to give in so why should anyone else. Yoiu must take your strength from him and those of us around you.

I just read the song your mum and dad sent, it made me laugh and cry at the same time. Your little boy has so much love surrounding him as so you.

Alfie whistles hello down his trachy in between purple spells!

much love, S, S and A xxx

Lisa said...

I know I mentioned this to you earlier but I would get another cardiac consult ASAP - these kids often get these horrendous predictions at birth (we did) and Kennedy has done AMAZINGLY well, she had a more complicated heart condition than Reuben and look at her now. Reuben deserves better than those doctors are giving him; it makes me downright ANGRY. These kids have a will to fight & live, they need people on their team who understand and believe in them. Have you had any luck finding anyone else? Yuka or Wendy or someone must be able to help find you someone else down there.

skeybunny said...


We just got back home today. I am sorry to read that Reuben has had a rough week. I agree with Lisa--you need to get a second opinion on the heart surgery. Surgeons may not "like" to perform heart surgery on kids with trachs, but often times circumstances for surgery are not ideal. When Evan was at Children's in Seattle, his roommate was a baby girl with VACTRL (I don't know what all the letters stand for, but it is also a genetic syndrome with multiple birth defects)--she had a trach and her open-heart surgery for tetrology of Fallot was performed emergently. Not only did she survive this surgery, she is doing well. She and Evan by coincidence were "roomies" again last summer, and she was so big, sitting up by herself! Just a few months back, I ran into her mom in the elevator and she was doing well (just in for another planned surgery).

If you run into a Dr. that gives up hope just because Reuben has CHARGE...that isn't acceptable, and that Dr. doesn't deserve to have the privilege of having Reuben as a patient. If the Dr. can give you a concrete reason for not wanting to proceed, then that's one thing. But the way you have described the conversation, it doesn't sound like that's what is going on. I would ask for a second opinion.

We will continue to keep you family in our thoughts and prayers.

Sarah, Jeremy, and Evan

Kristi said...

Oh Catherine... my heart aches for all three of you. I send you strength through this computer... if only you can feel it. I remember all too well the countless times it felt like the world was crashing in around me as I watched Gracie fight for her life. What gave me strength was her fighting spirit... she is perseverance defined as is Reuben, I'm sure.
I had hoped that the fact your Dr. was "scared" was because he was a Dr. who cared and showed it, but I am incredibly concerned that you have a team who is overlooking the fact that Reuben has NOT thrown in the towel... why are they? I do not think that the "team" is really proceeding as such if the Head of the PICU is telling you one thing about Reuben's airway and the ENT is telling you another. The lack of consensus and the lack of concrete reasoning is alarming. I find myself so angry as I read your words and Yuka's on the list-serve. From your description of the conversations, you haven't been really been given an answer as to why they are not willing to proceed with Reuben's care.
I agree with the posts here... you really do need a second opinion. There was a post on the list-serve from Corrie - I know Yuka will forward to you. It's really good advice - all the posts are. Another suggestion is a med Gracie's ENT used in her airway - Mytomycin (I might be misspelling/slightly misnaming... it's been a while). It's a med used in cancer treatment - the ENT used it to minimize the granulomas in her airway and used it in her choanae at the time of atresia surgery.
As you know, Gracie ended up with a trach despite numerous efforts to avoid it... but that has NOT stopped needed heart surgeries. Gracie just had full open heart with a trach in December. It was her 3rd open heart. We were advised of the extra dangers of infection due to the trach itself, the fact that any stoma is a risk for infection, especially an airway stoma, and yet the surgery was still done. Her surgeon would never have said "it's too risky because of infection possibilities." I urge you to have others brought in to discuss... we are in No. CA... our surgeon is with the Stanford Pediatric CardioThoracic program. He used to work in San Diego... perhaps he can be utilized somehow for a second opinion or can help connect you with someone? I am happy to inquire...
Also, because of her trach (and because if it's possible, he uses this incision for girls) her surgeon has always gone in an upside down "v" shape under the breast bone. Gracie has had a dual ASD repair, two mitral valve repairs and a pacemaker placed - - all with this incision. She will later have a mitral valve replacement. Using that incision helps keep the risk for infection lower as the trach stoma is not so close to the surgery site. Additionally, he appreciated the fact that with this latest surgery she had a stable airway to work with and expected her recovery to be far better than previous surgeries because she wouldn't have to struggle to breathe... She met his expectations.
So much food for thought... I hope we all have armed you well for the next round of talks with the Doctors.
May you feel the love and support that surrounds you, Jason and Reuben from all over the world.
We hold you in our thoughts and prayers.
Kristi, John, Gracie and Preston

Martin said...

Thinking of you three. Take care. Martin

mighty max and mommy amy said...

Oh how my heart ached to learn from the listserv that this was sweet lil' Reuben enduring such difficult circumstances. I was so hoping it wasn't your family...but sure enough, it is. You are a lovely, beautiful, loving family and the entire CHARGE family is lifting you up in prayer and sending love and comfort to you.

I cannot imagine how you felt during that conversation with the hear such negative "giving up" mentality from the medical team.

Please keep us posted as you move forward and let us know if there is anything at all we can do to help.

It was an honor to meet you and I will be following your blog closely to keep updated on your beautiful, precious son.

Love, Amy and Maxwell

Catherine said...

From: Mary, Maya, Dean
Hi Catherine-
I apoligize for not emailing sooner, as Reuben is heavy on my heart this morning after reading your blog. We just returned from CA Conference and are now battling a cold, but hanging in there. I can NOT believe the Doctors and the bad luck you have had with the hospital you are at. I do know of people who have been told many of the horrible things you have heard, but I do not know what I would have done had someone told ME those things about Maya. Actually, I think everyone thought Maya would be healthier than she turned out to be and NO ONE wanted to diagnose her with CHARGE...which I know is not necissarily a bad thing. I do get comments like, she is the healthiest CHARGE kid I ever saw from Doctors, and that makes me realize that they never see the really healthy CHARGE kids who are rarely in and out of the hospital, or they just have never met as many wonderfully successful and happy CHARGE kids like I have. I know you have a lot of support from the list serv...that is wonderful...they were a huge support for me as well...I may rejoin the list serve when my life is less absorbed by my 11month old who is destructing my house when she is not asleep. Maya on the other hand is so wonderfully content and rarely does anything naughty...she is SO SWEET!

Maya has a trach and hoepfully will be getting it out soon. I need to tell you that there are some great benefits to having the trach especially if Reuben has a lot of secretions. With the trach came nursing care, and nights of good sleep for me and my husband. I do not always get along perfectly with my nurses, but it was essential for me to have nursing early on so I could do normal stuff like grocery shop, work out, meet a friend for coffee, etc. PLUS, even if I do NOT love my nurses, they all LOVE and ADORE Maya...which is the most important thing. The trach made Maya able to breathe, and as a result she starting developeing (at her own special rate) and gaining wait very quickly. It was so wonderful to see her not struggle anymore to breathe, and we had some VERY SCARY re-intubation experiences...and finally we made the call that we no longer wanted to intubate and re-intubate over and over, but that we wanted Maya to grow and be happy, AND SHE IS!!! She took her first steps at 2, she is now starting to use sign language a ton, and will start pre-school in the fall, and we hope she will get her trach out this year! The trach was essential to Maya's ability to grow, and I have never regretted the decision (except maybe at first because the secretions were still very challenging, but they did get better). Also, if Rueben needs more surgeries, the trach is a great way to keep him safe during surgeries. I do not have to worry about whether or not Maya will extubate successfully or if she will get more scarring from a breathing tube to swell up her airway. Sure the trach causes a lot of people to stare at Maya and kids ask questions all the time, but for the most part people are nice to Maya and she would probably get stares anyway!

FEel free to call anytime, we are up from aroun 8AM-11PM and I would be happy to I know are kids are very similar.

mom to Maya CHARGE age 3
Addy 11months today
wife to Dean (super dad in my books!)