Thursday, April 14, 2005

Day 5 - Anger

I ran out of the shower to answer the phone and it was my husband. They were rolling Jack into surgery. I did not get my questions answered. I did not get to see him off. I was pissed.

After the surgery (he did fine), the nurses in the recovery room were telling me how cute he was etc, but I couldn't say a thing except that the surgeon didn't bother to speak with me before the procedure. They paged the surgeon who amazingly decided to make an appearance. When I reminded him he didn't talk to me, he said he talked to my husband, as if that would be enough. Matt is not a surgeon and he could never answer my questions. I find that excuse to be very weak. How does a surgeon reconcile to himself that it's okay to perform surgery under general anesthesia on a 10 day old baby without first talking to the mother? I felt that I was being punished for pumping. If only I hadn't been pumping I would have been by his bedside at the time the surgeon came around.

So the surgeon, while checking the clock and his beeper all the while, finally started to explain what he did that day, the results of Tuesday's biopsy, and what may come next. This was all in maybe 5 minutes at best, but that's very generous. At the beginning of each thing he would say that it was too complicated and complex but he would try to explain anyway. Like he's repeatedly telling me that I'm too stupid to understand. What makes them complicated is all the stuff he leaves out. He told us that if Jack has HD, then the next surgery will be opening him up, taking multiple biopsies of his large intestine, then routing the end of the small intestine outside the body (stoma). The multiple biopsies are to determine the good and bad parts of the large intestine, but then they end up skipping all that anyway with the stoma. Why?

(I also found out that we may not get the results of this test until Monday or Tuesday. Well you know the pathologists don't work weekends. So I'll have a hungry upset baby on my hands all weekend so that they can have fun. You know, I used to work weekends and I know it sucks but some things need to continue. I think healthcare is too important to just shut down for those days. Why not stagger days off so that someone is always covering the weekend so that kids don't have to suffer through it waiting for Monday?)

Of course the surgeon had to go. And I was still pissed. I didn't get my information and I wasn't near satisfied. I was so angry that I couldn't talk.

We wheeled Jack back into the NICU where every nurse seemed to see my tears and decided to come see how I'm doing. I just shook my head. I didn't want to talk to anyone. Not now. This only spurred them on. Now I've got not only every nurse in the room but the nun and social worker coming to me to try to talk me about my feelings. I'd close my eyes, put my head down and just wait for them to back off. I'm not in the mood to talk about my feelings! What I need is information, not counseling! Why is it that each one has it in her head that she's going to be the one I'm going to want to open up to? Can't they see from my reactions to all the offers that I just want to be left alone with my son and husband for awhile?

I stewed. Just sitting by his bedside. I didn't pick him up because I didn't want to hurt him, or wake him up so that he would remember how he was hungry. At one point Jack was obviously in pain so I got the nurse to get him some morphine. Why do I have to track someone down for this? Why can't it be anticipated that after surgery he would need pain meds?

After about a few hours of silence, Matt and I went to lunch. We didn't talk during the whole lunch. At the end, I finally started talking. I told him how angry I was that they wouldn't give me information. I told him that I wanted them to tell us why we can't try feeding him to see where the blockage is or how he handles it instead of going to surgery. I wanted to know why they would do all the biopsies on his large intestine just to bypass it in the same surgery. Why can't he do the biopsies laproscopically or the POOP procedure where they do the pull-through at the same time so that there is no stoma? Many many such questions. We decided to demand a second opinion, especially from a pediatric GI physician instead of a surgeon.

Back in the NICU we requested as such to the nurse. He told us it was a good decision and then asked us why. We told him and the strangest thing happened. He told us that he had Hirschsprung's and then started giving us more information than we had gotten in all the other days in the hospital from everyone else combined. It was incredible. He explained how feeding him could cause infection or death of intestine and so on that would be dangerous for our boy. How come no one told us this stuff earlier? He gave us first hand information which on such a private matter as a colostomy is a big deal. He also printed out some things for me. He told me that by all indications and early test results my boy probably has HD, but that no one wants to tell us that until they know for sure. I appreciated his truthfulness. It helps me to prepare for these next surgeries which will be even more invasive.

But once I started my rants on not getting information, I couldn't be stopped. The other nurses tried to tell me, "Oh, all surgeons are like that." As if that is good enough. I don't care if all surgeons are like that, I need more. They brought over the neonatologist and I expressed myself. He started explaining things, such as that they would have a pathologist checking the biopsy slides during the next procedure while it was going on so that they would keep as much of the intestine as possible. This is new information too.

In the end, we told the neonatologist that there was too much that we didn't know. The current operating procedure of only getting to meet with the surgeon on some wild chance that our paths crossed and he had a spare minute to give us wasn't working. We need a sit down meeting at a set time and I would accept no less.

So we're meeting with the neonatologist and the surgeon together tomorrow at 8am for a sitting meeting. Good.

And I've been writing down my questions. And some of them are with regards to this surgeons experience with HD and proven outcomes. I want him to sell himself to me rather than just expect me to just accept that he's supposed to be fabulous.

I've heard that anger is one of the steps in the grieving process. Maybe this is it. Or maybe I am just angry because I have good reason to be angry. We deserve communication and information, and I sure as hell should be consulted before anyone cuts on my son. I wish I could walk into that meeting tomorrow as a sharp and cool business self, but unfortunately that woman is currently on recess. Instead it will be the emotional near basket-case that all this stress, no sleep, post-partum hormones and possibly pain on my baby have created. It's not fair. It will take all I have to make it not be just a rant session. My goal is information for my son and to see if it's worth it to keep this surgeon. And I'll probably still ask for that second opinion. Insulting to him? Who the hell cares.

27 Comments:

Blogger Jen P said...

Pazel, not only do you and your husband and Jack deserve to be treated with compassion and understanding, but you deserve a second opinion.

Hoping tomorrow's consult brings you the answers you need and that the asshole surgeon is in a better place and can take his head out of his for a few minutes.

Wishing you the best. Take care.

2:13 AM  
Anonymous deborah said...

Here, here to information! And bravo
to you for demanding the respect and understanding you SO deserve.

Fingers crossed for an informative and productive meeting.

3:49 AM  
Anonymous Anna V said...

Second opinion definitely if he cannot deal to your questions respectfully tomorrow morning. And even if he can, then a second opinion is still a good idea if you still need it.

TBH a lot of what he is saying is standard with HD but he needs to explain to you how it relates directly to Jack. I hate dealing with surgeons, it's a lot easier when you are dealing with a gastro, they tend to have better people skills.

As I understand it, they do the biopsies now so that when they do the pullthrough, you skip doing them under GA and having yet another procedure. The stoma is not usually permanent.

The guardian society at yahoo.com is a good list for discussion of HD.

4:57 AM  
Blogger Amy said...

My heart is aching with you and your family as you go through this ordeal. My son - also Jack - was born 16 weeks early, had two surgeries, and spent 104 days in the NICU. I know what you are going through. Your nurses are your best bet for information and support. It you don't like your nurse ask the charge nurse for one you do like. Hopefully, your NICU practices primary nursing and Jack will be assigned a team of nurses who work only with him. This is helpful all around. Jack knows what to expect, you know what to expect, and the nurses know what is going on. We also found the interns and fellows to be extra helpful in providing information. For example, when our son needed heart surgery, the intern (Jonathan – we LOVE you!) took us into a parent room, brought a laptop, and showed us an animation of the fetal circulatory system. Then he explained exactly what would happen in the surgery. We were lucky to have great respiratory therapists too – Kevin came in on Thanksgiving Day – on his day off – to bag and do RT for our son’s surgery. There are people who care – seek them out – and if you don’t like someone for whatever reason – you don’t have to work with them. The charge nurse is your friend. If anyone gives you trouble – tell them – my son CANNOT speak for himself – I am his advocate and I won’t stop until I feel he is receiving the best care. Of course say this nicely and politely. I found it helpful to approach the nurses and other staff by saying, I know you are extremely busy but when you get a moment…or I didn’t notice this before, could you please explain it.

Also, see if you can find nurses who support Developmental Care. This means that they cluster care for you son so that he is bothered the least amount of times during the day. For example, if he needs a diaper change - they should also do his temp, and any other things that need to be done at the same time so that Jack can sleep uninterrupted. The lights should be off or low unless they need to have them on for a procedure. The nurses should announce themselves to Jack, address him by name, and explain what they are going to do to him. If he seems to be stressed, they should take a break and let him recover (watch his monitors to make sure his heart rate doesn’t go up – his O2 levels down). Request Kangaroo Care with him – they should bring a curtain and a comfortable recliner and the two of you should spent some time skin to skin.

You are going through one of the hardest, most stressful experiences of your life, but you will get through it. What helped my husband and I cope was finding the joy in the small things – giving a bath, holding your son, singing or reading to your son. Some days are harder than others, but look for the good – I remember one day the only good I could find was the mother next to us was able to hold her 23 week old daughter for the first time – but it was good. We just keep in mind that we wanted to remember good things about the first days, weeks and months with our son. If you need to talk – please email me (aingalls at gmail.com).

Hang in there and there a many people sending good thoughts your way!
Love,
Amy

5:20 AM  
Anonymous Lisa V said...

You are being an excellent advocate for your son. I have found when in crisis situations with my family members that nurses often give the most complete, realisitic and honest infromation. They don't answer questions with "I don't have a crystal ball" like so many doctors do. They tell you what they think the outcome will be based on experience. I have found they are nearly always right. Oh yeah and they will admit they could be wrong.

I am thinking of you and your son. Wishing you luck, good outcomes and a little sleep.

6:49 AM  
Blogger Floyd said...

Way to go. It's a real shame that you have to get so angry and demanding to get the answers you need but BRAVO to you for demanding some results.

Still praying for you all.

6:55 AM  
Anonymous Journeywoman71 said...

Just wanted you to know that you are being an excellent advocate for your son.

Ask for that second opinion.

Best best wishes, and you are in my prayers.

6:56 AM  
Anonymous Anonymous said...

Exactly -- who the hell cares? Insulting to him? Like I care, pffft! I'm so sorry you're going through this Pazel, so very sorry.

Thinking of you and checking back often.

Emily

7:01 AM  
Blogger The Lioness said...

Godd for you! Patients who demand to be treated w respect actually are given better treatment, sadly. You have every right to your anger and your questions and, this not being pro bono work, he's not doing you any favour by answering them, it's his (well-paid) job to do so, and to keep doing so till YOU, the baby's parents, feel you understand enough.

7:17 AM  
Anonymous Lola said...

I agree that a second opinion may be in order, especially when you're talking about such a complicated surgery. I also agree that you need to be an advocate for your son and make sure that he gets the best treatment possible.

I used to work with doctors, and unfortunately I found that they were often eggheads who were completely clueless about how to deal with patients in a kind and compassionate manner. (Which is why they pick specialties like surgery in the first place, the patients are asleep for the vast majority of the time the doctor spends with them.) Hopefully, you will find a second opinion consult who will give you the time and respect that you deserve in getting through this whole ordeal.

Take care, you and your family are in my thoughts.

7:33 AM  
Anonymous Anonymous said...

Pazel, I've been following your story for some months now and I've been thinking of you often.

I'm a doctor (I started out in a surgery residency and decided I wasn't enjoying it...not enough time for PATIENTS) and my husband is a surgery resident (and I hope he takes time to talk to his patients.)

You are doing such a great job being an advocate for your son. I'm so sorry that you are having to work so hard to get the information you deserve. NO doctor should be offended by a request for a second opinion! And every doctor should be willing to sit and explain procedures and answer questions and discuss your fears, concerns, and uncertainties. (You and your husband can refuse to consent to any procedure until all the risks and benefits have been explained and all your questions have been answered.)

It is true that surgeons, especially, are extremely busy, BUT there is no excuse for ignoring a patient or parent or being condescending towards you.

I urge you to continue to openly express to your surgeon, nurses, NICU doctors, and others exactly what your concerns and questions are. Up until recently, medical professionals haven't received any training on how to communicate. It seems basic, doesn't it? But think of all the relationships in this world that fail because people can't communicate.

YOU are doing an excellent job of communicating! Now, I just hope your doctors will do the same for you.

I know this is such a scary experience for you. And I am so impressed by your strength (Do you feel strong? Because you are! You are refusing to be intimidated, refusing to be quieted.) I will be thinking of you and continuing to check in.

Kelly

8:39 AM  
Blogger cat said...

It's really good to hear you have a few answers finally. I hope the meeting goes well and you find a calm space in which to get more answers. You have been wonderful and strong in the face of unimaginable problems. Anger can be a good thing sometimes if it helps you find solutions for Jack then so be it. Sending your whole family my wishes that this will be ok somehow.

8:55 AM  
Anonymous LisaGK said...

You are doing an excellent job. And good for you for standing up for yourself and your son. My daughter was in the NICU for 7 days and I was left out of so much because SO many people were just too busy to talk to me. When she was 16 hours old I was given inconclusive and false test results because the wrong size needle or catheter was used. I was woken up by doctors delivering this -incorrect- news and no one even turned on the light to make sure I was aware of what they were telling me. I'm absolutely FUMING on your behalf. Who the hell do some of these people think they are that they can be so greedy with their time? There is nothing I can say that you have not already said to yourself or your husband that would make it any clearer or any more significant. My heart goes out to you and you can cry and scream and swear and kick all you want, you have every right. I hope the meeting provides you with the answers you need and that you get your second opinion easily and quickly.

11:13 AM  
Blogger Marianita said...

I can't give you any advice or add to the many things already said, but from what I have read from you, you are mostly just being a FANTASTIC MOM and your anger is completely justified. If mothers aren't meant to fight like hell for their kids, what exactly are they for?

God, there is something SO MESSED UP about our healthcare system when the people whose job it is to care for us consistently act in such an uncaring way. Best heathcare system in the world? I sure HOPE not.

11:14 AM  
Anonymous Anonymous said...

Pazel, If anyone thinks that you are a basket-case because you want as much information about your son's options, then they are nuts. You ARE being a good mom by exactly what you are doing: Getting Information. Having dealt with the health care system with my own genetic disorders since I was born, you are exactly what it takes to make those decisions for your son. You should be so proud of yourself for not accepting anything less than knowing exactly what is going on. Some parents don't need that, but I think that MOST parents would want that exactly information but wouldn't want to rock the boat to get it. Even if you don't feel like it, I think you are doing an excellent job advocating for Jack. Sending all positive thoughts your way. Also, my best friend's mother has an ileostomy, so if you ever want to email someone, just contact me and I'll give you her info.

-Jen jenbuster@gmail.com

11:22 AM  
Blogger obabe said...

Definitely get a second opinion, preferably from a pediatric surgeon. The moment people said the word surgery to us, my husband and i were on the phone with two siblings who are doctors, asking them about who to go to to get that second opinion, since our surgeon at the time was a total stranger. we found out two hours later that our surgeon was a world reknown expert in the field of HD, and good friends with friends of our family. only then did it make sense why every doctor who walked into our room looked at us like we were crazy when we told them we were getting a second opinion before moving forward.

i hope you get the answers you are looking for, and that second opinion. my prayers are with you, and i think of your family often.
(complete stranger nonetheless)

this is our surgeon:
General Pediatric Surgery: Juda Jona, MD, offers expert pediatric surgical care for neonates, infants, and children. He is an international authority on the laparascopic ‘pull-through’ procedure for Hirschprung’s Disease. 847-570-2284. Although he is in Chicago, he may have contacts in your area.

12:39 PM  
Blogger Stolidoli said...

Pazel - you are doing a fantastic job as an advocate, and if I haven't said so before, congrats on the birth of your baby!

But if you'd like help in that arena, I'd suggest that you lean on the social worker. I am a SW and have worked in a hospital - the SW's job is not just to provide comfort and talk about feelings with. They advocate with the medical staff on behalf of the patients, usually participate in rounds (so they are given the medical info too and are often as well versed as the docs and nurses themselves in tx protocols), and will see you through the variety of docs and nurses that you are seeing (they can be the one constant in your baby's care). Plus, they can coordinate family meetings with the docs and are trained in working with families, so their bedside manner should be a vast improvement than what you're getting now.

Plus, if you had a SW as an advocate, maybe you could rest a bit more, which I'm sure you could appreciate.

Anyway, thinking of you, praying for you, and wishing you well.

12:50 PM  
Anonymous Louise said...

A social worker helping you act as an advocate for Jack is a good idea. I had a social worker who helped me make decisions through my treatment, and it made things easier.

As for the second opinion, it is a great idea. It doesn't mean you will get a different opinion, or that you will like a different opinion better, but it does give you a better idea of what option are out there for treatments and surgeons.

Good luck with everything, it sounds like you are doing things right, and as frustrating as it may feel, keep pushing for answers.

Take care.

3:40 PM  
Anonymous Anonymous said...

You are advocating for your son-- which is great hospital mommy. Try, if at all possible, to be cool tomorrow as you'll most likely get more out of him, and that's the goal (at least that has been my experience with my first daughter). And yes, regardless, I would get a second opinion.

Marla

3:46 PM  
Anonymous Anonymous said...

Suggestion...bring a close friend or family member along to take copious notes during the consult. That way, you can focus completely on what's being said, ask as many questions as you want, etc. without worrying you'll forget something later. I was the designated note-taker for my best friend during her cancer dx and treatment, and she found it very helpful (and I was so very happy to have something concrete I could do for her).

Oh, best wishes tomorrow. My heart goes out to you all.

-Shelley

3:56 PM  
Blogger L said...

Good for you for pushing for more information. This is your baby and you deserve to know everything that is going on. I am glad the nurse took some time to give you information. It doesn't matter if surgeons are "just like that". They shouldn't be. I bet if it were there own child they would not be so flippant. I hope you find the answers you need.

The picture of your son is so beautiful. He looks like he's flexing some muscle :)

4:22 PM  
Blogger Cricket said...

Anger is justified. I say go for it. You have to advocate for your son and you must be heard. Bottom line.

As far as pain goes, I had no idea they did that to babies, but I knew they did it to adults. I spent a week in the hospital once (endo pain, cysts bursting, CMV fevers, digestive issues, the works) and I was told they would only give me pain meds once I expressed a need, i.e. I was in pain again. So then a pharmacy order would be put in and the pain med would arrive say an hour later.

Including the time to track down a nurse at the outset, I would be in pain well over an hour each time. I decided I would not play their way and I didn't care if my chart was correct or not. I'd brought my own handy bottle of Advil and said the hell with them. They knew I had it and I would report if asked. Gotta fend for yourself, I say.

Wishing you something so simple as Advil instead of morphine... Most all surgeons are assholes, so don't let him be condescending to you or dismissive in the least. Good job doing the list and being prepared. As you know, angry doesn't have to translate into unfocused emotional.

You might also try to get the hospital's patient advocate there with you, too, as a sort of 3rd party witness.

4:48 PM  
Blogger Indigo Wolf said...

You have every right to be pissed. And you should never feel guilty about geting a second opinion. Seriously, the doctor's feeling don't matter when it comes to the health, safety and wel-being of your child. Good for you for demanding a sit-down meeting. The docs will probably take you more seriously. And if the surgeon doesn't still, getting a 2nd opinion might be the best thing after all because you might feel like switching surgeons. I hope it all goes smoothly...I'm so glad you finally got some answers.
-Carrie Jo

5:05 PM  
Blogger Moxie said...

I'm amazed you're not bringing a lawyer with you to the meeting! The way they're treating you sounds like borderline malpractice, and absolutely bad customer service. Definitely ask for the second opinion, and don't feel bad for being a Tiger Mama. If they try to push you off, speak with the head of the hospital.

I'm so sorry you're having to go through this.

9:06 PM  
Anonymous Anonymous said...

I stmbled on this by accident. Our son, Anthony Joseph, popped into our world on 5-14-1992 and joined his sisters aged 13 and 22 months(it's a spread but that's another story). Tony sounds so much like your little guy. In the hospital he wouldn't eat(he'll catch on),diapers with crystals(the nurse said oh those are uric acid crystals those are common), no stool no gas(breastfeeding can do that). Saw the lactation specialist. Got the little guy home Still wouldn't feed, started to become lethargic. no stool, slightly damp diapers, getting yellow and distended. The pediatricians nurse blew me off as a nervous new mother. Brought him in anyway. I remember laying this 6 day old infant on a freezing cold xray table and he didn't even react. Our pediatrician says--off to Children's Hospital. They say he needs fluids and he will be okay. They tell me to go home and get some rest(we live 10 blocks away) I need to see our daughters. Got the call from the hospital--they did a contrast dye xray and surprise--tony has no colon!! He had a small anus that ended about an inch into his body and was connected to nothing at all. We were told he would not have been discharged from the hospital without passing meconium--but he was. On his one week birthday he had surgery-- a double barrell colostomy and he opened his
eyes and cried and ate. If I was a first time mother he would have died because I wouldn't have known what was normal and would have kept struggling with him. Your instincts will always be your best guide. A mother knows her child. Period.

I want to make 2 points. Someone referred you to Juda Jona,MD in chicago. He was Tony's surgeon-in milwaukee, wi at the time. I hated all his partners in his office but he was wonderful. He would drop the siderails of the crib and practically crawl in the bed with Tony to hold and play with him. And he guided our hands in the subsequent care of him. I hope you get to work with someone like him. I can't even begin to say enough about him.

The second point. Tony celebrated his 13th birthday last week. He went paintballing with 9 of his buddies. He snowboards and skateboards. He does well in his school and yells "love ya" everyday before he goes out the door to school and before he goes to bed at night. His colostomy was reversed at age 1 after seven reconstructive surgeries. I was never so happy to have poopy diapers to change!!!!

You will look back and wonder how you managed it all--but you do and you will. I will be thinking of you and your family.
Susan from Wauwatosa, WI

7:12 AM  
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John

9:32 PM  
Blogger Adult Personals said...

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5:50 PM  

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