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Definitely feeling better!

Tuesday, February 2, 2016

I apologize for the delay in updating the blog.  The good news is Bennett is getting better.  The bad news is, as Bennett gets better and I feel less stressed, the adrenaline is moving out and making way for exhaustion.  Almost a week of no sleep is catching up to me big time.  Last night, I couldn't see straight or think straight enough to type.  But it's 4:47am now so here's what happened yesterday.






We are finally seeing some sustained pain relief for Bennett!

Bennett was taken off his pain meds early yesterday morning because of concerns his respiratory rate and heart rate had dropped.  Typically, Bennett breathes 22 breaths per minute.  But while he was sleeping, he began breathing only 10.  Bennett's heart rate is typically 80 beats per minute.  When he was sleeping, they dropped to 50.

I was definitely worried to see Bennett breathe so slowly.  Waiting to see when your son's chest rise is a slightly frightening feeling, even if you know he is ok.  This slowed breathing happened last night as well.

The good thing is, even when Bennett's heart rate and breath are slow, Bennett looks great, easily awakes and gets back to his normal breathing patterns within a few hours of being off his pain meds.  The pulmonologist who saw Bennett yesterday agreed that his slowed breathing may be a combination of having pain meds on board and feeling relaxed enough in the absence of pain.

Thankfully, Bennett's pain meds were reestablished once his pain began to kick back up a few hours later.  Once Bennett was put back on his meds yesterday, his demeanor changed and his personality came back.  We had a great day of playing with toys and even sitting up to color!


Midday, I was super relieved to get a visit from our favorite Pediatric Surgeon who had returned to the hospital after having the weekend off.  It was great to see her, even though she hated to see us back in the hospital again.  Our Pediatric Surgeon and I had been in touch throughout the weekend so our re-admission was not a total surprise.

What was a surprise, according to our Pediatric Surgeon, was the fact that Bennett was so backed up when he came in.  The Ped Surgeon apologized for not having recognized that Bennett might have needed an Xray over the weekend when I spoke with her over the phone about Bennett's inability to benefit from pain meds.  The doctor explained she had not even imagined that he would be getting backed up in his colon so quickly after surgery.  She explained that what she thinks happened is that we thought he was pooping normally, when in reality, the liquid stool was going around the hard stool which was building up in Bennett's system.  We agreed that a colon clean out after surgery was a significant improvement in his care.

The Pediatric Surgeon and I talked about Bennett's current pain regimen.  She didn't seem bothered by the amount of meds he was on.  She suggested we stay on Tramadol and Hycet but start weaning off the IV meds first, since our plan is to go home on an oral pain medicine regimen.  No longer afraid that a doctor would allow my child to anguish in pain, I agreed with the Pediatric Surgeon about stopping Dilaudid, a fast acting IV pain med.

We talked about starting up Bennett's feeds again and ways to keep Bennett's gut moving.  We are going to start trying to give Bennett a gentle laxative and stool softener in order to keep him working well in the GI area.  I think this is going to be our personal challenge and something that I will continue to need to work with our Cystic Fibrosis team, GI doctor and surgeon regarding...getting Bennett's GI system working efficiently so that he is neither constipated nor loose in his stool so that rectal prolapse does not happen.

The issue with CF is that there is thick mucus build up in the GI track.  So, it's easy to get constipated and find oneself with a bowel obstruction.

As far as why Bennett screams over pain in his rectum, the Pediatric Surgeon feels like there may be a tear, anal fissure or ulcer inside Bennett's rectum causing his pain.  She does not want to try exploratory surgery because there isn't anything they can do about it but said if we keep him comfortable and his stools soft, time should heal it.

It's so strange to talk to two doctors about the same issue, helping Bennett and keeping him comfortable, and feel like the conversations are so different.  With the On-Call Pediatric Surgeon, there is such a feeling of defensiveness on both sides - he doesn't trust me and I don't trust him.  With our favorite Pediatric Surgeon there is such a sense of trust and teamwork.  I feel like my Pediatric Surgeon trusts me as a mother and trusts Bennett as a patient.  I put a lot of trust in her as the doctor.  She is good at what she does and she takes seriously my own concerns and suggestions on ways to improve Bennett's health.  That inherent trust between doctor and patient goes a long way in working together.  The other is also true.

Yesterday afternoon, I went back up to Waco for a few hours to get a shower and to go to therapy.  I very much looked forward to having a hour dedicated time to just process what has been happening.  My mom came to town this weekend so that has been a big help for us to have another adult who can drive and watch the children, especially as Brian continues to work.

I also looked very forward to seeing Oliver and Avonlea.  Oliver's sleep is being impacted by our family being separated.  He is really sad that he is getting his mom in short rationed moments.  I called him at school yesterday just to check in with him and let him know I am thinking about him.  But I know there is no real way to soothe his loss in this situation - not having his mom and brother there.  I remind him regularly that Dad and I are working as hard as possible to get us all home and back together.

Avonlea has also been impacted by mom and dad not being home regularly.  She has been punishing us by refusing to hug us when she sees us or not wanting to be around us when we are home.  When Bennett was born and our family went through a very similar situation as this one, I had a child life specialist tell me that toddlers, in their anger and disappointment over what is going on, will try to punish their parents by refusing to go near them when they are reunited.  She taught me, and I remember this even today, that I should take seriously 2 year old's feelings.  I need to respect that she feels anger towards me for leaving her and sadness for feeling abandoned and that the best thing I can do is to not take it personally.  Instead, I am to love on her when she is ready.  It definitely hurts to have my 2 year old reject me when I have such little time with her.  But I also have the confidence that just as 2 year old Oliver recovered from our first trauma with Bennett, so too will 2 year old Avonlea.


Bennett and I Facetimed Avonlea tonight before bed.  At first, she wouldn't talk to me.  But then, I pulled out the ace card: I asked her to sing songs with me.  We sang Wheels on the Bus and Old McDonald which was a special bonding moment for both of us.

So, now having had some time to reflect on what just transpired these last weeks, I think this is how we got here:

Last week, Bennett had surgery and was in the hospital to recover.  We struggled to get his pain under control.  (We don't think it's that Bennett's pain was more than normal but that Bennett's resistance to pain medicine helping is higher as he as been given a lot of pain medicine over the course of his life due to the number of surgeries he has had.)

Bennett ended up getting too much morphine built up in his system.  This caused an allergic-like reaction that made morphine intolerable.  This took a full day to figure out and then resolve with some really powerful medication.  Once off morphine, Bennett began to thrive on his new pain regimen.

Bennett's IVs kept stop working (he had 3 in 36 hours) so eventually I requested that we try to go to oral pain meds only (to prevent having to have more IVs).  The doctor, seeing we were anxious to go and that Bennett was feeling well, allowed us to discharge from the hospital.  But what we didn't know was he was becoming severely constipated.

So, instead of healing and feeling better each day, we were finding Bennett's pain could not be covered by his pain meds.  We kept trying to give him more pain medicine but we couldn't seem to control the pain.  It turns out we were probably adding to the problem, not helping.  But nobody knew that.

Eventually, we were readmitted to the hospital.  Bennett's pain, now having not been adequately controlled for some time was unbearable.  Bennett was given a colon cleanout to relieve a potential source of his pain.  Bennett was taken off his meds to prevent further constipation.

When immediate overnight intervention required Bennett's pain to be appropriately controlled and when Bennett's colon was cleared of stool, we saw Bennett's personality begin to emerge again.  All of the sudden he was now feeling good enough to play and eat.

Those two things allowed a break in the pain cycle which seemed to be exactly what Bennett needed to begin to have sustained relief.  Now, even with no or few pain meds (which happens when pain meds are not given on time), Bennett's pain is staying at a much tolerable level (we're talking worst pain is an 8, rather than off the charts).

Having now addressed the cause of Bennett's pain and having stopped the pain cycle which made every thing Bennett did intolerable, we are seeing Bennett improve.  He is moving easier, eating more and caring for his lungs better.  Rectal pain that may have once been unbearable is still painful but now bearable.

In the coming days, his body should heal, his pain should subside even more and his behavior should become more normal to his daily life.  We have also seen a continence to his bowels that we weren't seeing before.

This morning will begin with new bloodwork and X-rays.  We are continuing to monitor Bennett's bowels.  (Gosh, I hate the amount of radiation this child has had at only age 6.  But what else do we do?!)

I am hoping we can start bolus feeding Bennett, instead of keeping him on a continuous feeding drip. I think we have pain medication worked out so we will stay on that regimen for now.  And I am hoping to get Bennett outside today.  I'd love to see him walking around more.  We also want to try to get him to wear his Vest for his treatments.

We are making big improvements so I am hopeful we will be home soon.

One Response to “Definitely feeling better!”

  1. We've been following and thinking about you all here in Cincinnati! I'm glad to see Bennett is doing better, I hope that he continues to improve and that you all can go home soon.

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