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Home again, Home again, Jiggity Jig!

Thursday, February 4, 2016

We are home!

No more masks, no more IVs, no more beeping, no more food trays, no more medical students, no more labs, no more x-rays, no more asking for permission to get medicine, no more waiting all day for the doctor, no more stuck inside, no more interruptions!

We are home - surrounded by people and things that heals a heart!

I took this picture right before we left the hospital. That smile and the sparkles in his eyes speak volumes!
We were discharged around 4pm yesterday.  Our last day out the hospital was relatively peaceful.

I was hopeful we would go home but experience has taught me that you never know you're actually leaving until you have discharge papers in hand.

Yesterday morning, I woke up at 2am with Bennett crying in pain. They had stopped his Tramadol again due to slowed breathing during the night.  So, he was given pain medicine as soon as we asked. I went back to sleep to wake up only 2 hours later to his crying again in pain.  A dose of Hycet made him feel better.  Throughout the day he still needed consistent pain meds.

I was a little disappointed that he seemed to need pain meds more than the day before, since we had had such a good day Tuesday.  But when I told our Pediatric Surgeon that I was disappointed, she said, "oh, don't worry about that.  It's totally normal."  She went on to explain that recovery often works like that: as the patient feels better, they will attempt do do things they wouldn't normally...and then they will often hurt more the next day.  She explained it's part of the process and that this was the very reason she wanted to see Bennett to stay home from school one more week.  Often kids will go to school and forget they need to be careful so that, by days end, they are in a lot of pain.

We waited all day to see the doctor and get the green light to go.  I have found that the more critical of a patient you are, the earlier in the morning the doctors come by.  But the less critical you are, the later they seem to come.  That isn't much fun to anxiously wait all day to be discharged but I was so tired I just packed up and sat around.

We didn't get the thumbs up until after lunch.  But then, after we had packed up all of our stuff (which was enough to fill two little red wagons), Bennett went to the potty and we found a good bit of fresh blood in his stool.

This is the view outside our window into the hallway.  Because we were on reverse isolation, we had to always keep our door closed.  So, I stood here many times looking out past the words that the nurses placed on the window to decorate the door.  The "Quiet Time 1-3pm" sign across the hall made for hospital guests to take note was interesting to see as I would have much rather it have said, "Quiet Time 1-3am" and been for the nurses. ;)
Concerned, I told the nurse who told the resident who told the chief resident who told the Pediatric Surgeon.  Ultimately, everyone agreed that the blood was not concerning.  But is was worth everyone paying attention since Bennett has complained of rectal pain for so long and since he had surgery on his colon.

Finally, we got in the car and took off for home.  Until halfway home, the hospital called.  I thought they were concerned about the blood and wanted me to turn around (which God himself would have had to come down from heaven and forced my van to around at this point).  It was Bennett's nurse that was calling.   Thankfully, it wasn't about the blood, it was about Bennett's Vest...that I had forgotten.  :::Face palm:::

I told her I was headed home and I wouldn't be turning around.  I explained I would come tomorrow or Saturday.  (One could be proud of me for not telling her I was never coming back!) 

So, I will go pick up Bennett's Vest today or tomorrow.  Thankfully, we have the AffloVest that we are able to use until then.

Home has been a wonderful place to be.  Avonlea and Bennett have had the best time together. Bennett was delighted to find several packages that had come in the mail for him.  Brian and I were incredibly touched to find several meals that had come in the mail as well.

Besides seeing my children laugh and play with each other again...and besides being able to go to sleep in my own bed early last of my greatest moments last night was: getting a home-cooked meal, especially when they are served on paper plates that we could just throw away.

No need to prepare a meal and no need to wash dishes - both are gifts from friends near and far who have indicated they are with us in this journey.

This meal is one of the one of the meals mailed to us from dear friends who used the website "Take Them A Meal".  Meals from "Take Them A Meal" apparently show up frozen and ready to put in the oven and come with a card that state directions and offer a picture of the meal.  This meal was delicious!
I am so thankful for the meals we have been given as they have already and will continue to allow us to focus on being with each other, not taking care of dinner each night.

I am also thankful for the grocery supplies that have been dropped off while we were in the hospital - supplies such as toilet paper, milk, paper plates and plastic silverware.  Not having to worry about washing dishes or running to the store for the basics after being in the hospital is like feeling like you've won the lottery (especially when we ran out of toilet paper this morning)!

We have had friends send such creative things that have filled gaps we didn't even know we had.  We are thankful for friends who have offered to drop off Starbucks, who have sent gifts to the children, who have sent gift cards or have picked up our children and allowed them to play at their houses.

It's so hard to ask for help but the overwhelming love and support have made asking for help when we have needed it just a little bit easier.

I asked Bennett a few minutes ago, "I am so glad we are home. What did you miss at the hospital?"

He thought I said 'what do you miss about the hospital'.  His face dropped all expression and he answered, "nothing."

Realizing he had misunderstood me, I said, "No, I said, what did you miss about home while you were at the hospital?"

He said, "I missed being together.  I missed old my toys.  And I missed the noise.  Being at the hospital is quiet and that is lonely."

Then, he interjected, "...but that's what Daddy said home was like.  Daddy said it was quiet here without me."

So, cheers to noise of home - the laughing, the crying, the banging, the shouting.  Home is where my heart is.

Our best day yet!

Wednesday, February 3, 2016

Yesterday was a very good day! Bennett was able to start his chest percussion treatments, the Vest again. The picture above shows just how well he is doing. He was being very silly and decided to pose like this on his own. When I tried to adjust his mask, he cocked his head and said, "I know what I'm doin' lady" and then cut up laughing. Clearly our old Bennett is back!

Our morning started out with an X-ray, which came to his room. Everything seems to show his abdomen is doing well.  After our Pediatric Surgeon came by for a visit, Bennett was untethered from his IV fluids, placed on a normal diet and encouraged to go outside and play.

We had a mid-morning visit from a dear friend from Waco who brought breakfast and goodies (speaking of goodies, we have received so many gestures of kindness in the last two weeks - we are hopeful that those who have showered us with love would know just how appreciative we are - our hearts are full of gratitude!).  

It was nice to have a few minutes to chat with another adult.  We have had two other visits from close friends since we have been in the hospital whose pictures I forgot to capture.  I was thankful to have my friend Rachel come today, on a good day, as it is easy to enjoy friendship when one's heart is happy.  

Bennett was able to go outside today. His first time since his surgery two weeks ago.  The Texas warmth in January was glorious. 

As a precaution, when Bennett is outside of his room at the hospital, Bennett has to wear his mask to prevent his getting any bad germs that would hurt his lungs. He can take the mask off outside but his light blue eyes actually tolerated the sun better with the mask.

Bennett's pain gradually went down throughout the day, eventually moving to a "0" by noon. This is the chart that I had originally placed on the wall across from his hospital bed for us to use to identify his pain.  This was particularly important when I felt the doctors were dismissive of his pain.  The more he could quantify how he felt, the better it was for everyone. 

I overheard Bennett tell our friend today: "At first, I was a 10. Then I was a 9 and then an 8. I stayed an 8 for a while. Then 7 and 6 then 5 and 4, lots of 6s and 4s. Then I was a 2 and now I am a 0!" It was great to hear him articulate what life has been like for him.  

Bennett was able to go most of the day with no pain medicine, although we used Hycet and Tramadol to address any breakthrough pain. 

This picture is of Bennett trying to run in his hospital gown. He is holding his little finger out because it has tape and numbing cream on it as he was supposed to have blood work done once we returned to the room. 

I loved seeing Bennett have enough energy to run. I was surprised to see how much energy he has since the child has not eaten much in the last two weeks. (I dread to know how much weight he has lost.) But thankfully, we have started back his normal g-tube regimen so hopefully we can get his nutritional status improved.

Yesterday afternoon, my mom came again to watch Bennett for me. I could have driven home but I've banned myself from driving as I am too sleep deprived. 

Instead I asked the social worker to arrange a room at the Ronald McDonald House here in Temple. There, I was able to get a free room to sleep for a few hours and a bathroom to shower. 

I am so very thankful for Ronald McDonald Houses. Brian and I stayed in this very same Ronald McDonald House six years ago when Bennett was born. It was strange to go back...yet it was very familiar.  I so appreciated the rest so that I could come back and take care of Bennett at night.  I seem to be averaging about 3 1-hour naps per night.

Yesterday afternoon, Avonlea's preschool teacher texted me that Avonlea had woken from her nap at school screaming, "Bennett!"  I almost couldn't believe her.  It's hard to realize that even a child as little as 2 can have anxiety over her brother's well-being.  

I will sadly admit that she and Oliver had to witness at home Bennett's screams when he was in excruciating pain before this hospital admission.  We tried to shield Oliver and Avonlea the best we could but his cries could be heard throughout the house and they went on for much too long.  

I found Avonlea's teacher's text to me to be bittersweet. How thankful I am to hear her tiny heart is with her brother, even when they are separated.  But how sad I am to know that she has not gotten through this experience unscathed, either.  I will be particularly attentive to her needs and feelings of safety when we return home.

I don't know what today will hold but I'm hoping our successful day might be enough to allow us to go home. I'm feeling ready. I think Bennett is ready. Now we wait to hear if the doctor agrees.

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.

Improvement...but docs take the pain meds away again...

Monday, February 1, 2016

Brian slept on the couch.  I curled in a ball in the chair.  Bennett slept soundly in his bed nearby.  We waited for the doctors to arrive.  Hours went by. 

Finally, around 9:30am, we asked the nurse to call the On-Call Attending Physician, the doctor ultimately responsible for Bennett's care this weekend.  I was fired up to talk to this doctor about the train-wreck of a protocol that was given Saturday night.

The On-Call Pediatric Surgeon, who is not our primary pediatric surgeon, but a colleague who was on call for her at the hospital this weekend, came in with two Medical school residents trailing behind him.  He is a big tall bald man who ironically has the last name of Little.

He shook our hands and then asked how the night went.  We explained it had not gone well. But, we explained, things turned around once pain meds were given.  The doctor seemed uninterested.

The doctor brought us over to the computer to show us Bennett's CT scan.  He seemed to want to prove to us that Bennett had a belly full of stool - a fact that neither Brian nor I disputed.

After spending a lot of time explaining how much bowel was in Bennett's tummy, the On-Call Attending Physician made his case, repeating what the Medical Resident had told to me the morning before: Bennett's pain problem is his ultimately pain meds - pain meds caused slowed gut, backed up gut is causing pain.  

I said, "we agree that Bennett was backed up and needed to be emptied.  I'm with you on that.  But the reality is we don't necessarily know if his constipation is due to the pain meds.  He may also be backed up because the pain in his rectum is so intense that his bowel muscles are refusing to push the stool through."

The On-Call Pediatric Surgeon surprised me when he acknowledged that I had a point.  But then he repeated: pain meds cause constipation - we need to stop Bennett's pain meds for him to get better.  

I told him again that I understood that pain meds slow the gut.  But I also explained that we have witnessed our child in excruciating pain over the last 11 days and that I was unwilling to allow it to go on any more.  I explained that I could get on board moving away from opiates, if that was possible.  But, what I would not get on board with is my child being left to needlessly anguish in pain again.

I offered multiple other ideas to the doctor in my effort to think outside the box: what about an epidural? What about a shot to numb the rectum area? What about the new pain medicine Relistor?

The doctor shot down each idea in a way that made me feel that the only thing he was interested in was hearing me agree with his plan.  His plan was to stop the opiates but start a new pain medicine called Tramadol.  He also wanted to start Bennett up on continuous tube feeds at 25 ml/hr and give a stool softener.  I was fine with all of that, except pulling him off the pain meds.

I said, "so, let me make sure I understand, is the next 24 hours basically a dance?  Are we basically going to try to get his gut moving while also trying to keep him comfortable?  So, you tell me if we are where we need to be on the gut and I tell you where we are with his pain?"

The doctor looked straight at me and said dismissively, "yeah, maybe you should be more mother and less doctor, work with Bennett on some calming exercises and leave the doctor stuff to me."

I looked him back square in the eyes hidden behind his thin glasses and said as clearly as possible: "I'm fine with whatever we do as long as he does not suffer.  I will not watch my child in pain any longer."

And off he went, with his medical students trailing behind him.

We waited for some time to see what orders the doctor would put in.  Would he take away all our pain meds?  Was I going to have another day to watch Bennett struggle?  Was I going to fight this team of doctors all day long?  I was fully prepared to be the biggest thorn in their side.

The nurse came in shortly after the doctor's and my conversation and helped me see what orders might have changed.  If the doctor orders meds, they can be given.  If he doesn't, then we can't give pain relif.

Thankfully, we realized they had not adjusted his pain medication, they had only added two new medicines and a tube feed.  The nurse was allowed to give the pain meds PRN (which is "as needed").  I made sure to ask to get the pain meds every time it was available in order to stay on top of the pain.  But I was full of anxiety all day.  When would they pull the order and stop his pain meds completely?

Thankfully, they didn't.  And so, we continued the day as normal.  The nurse and I worked as a team to keep Bennett comfortable.  He received all of his pain meds on time, except Hycet which we gave to Bennett only twice in the day, in the moments when his pain could not be controlled.  For the most part, his pain was much better.

This was a smile I was able to capture today while Bennett was playing with his Power Rangers, something he hasn't felt well enough to do since his surgery.

The colon clean out had been very successful.  Bennett was starting to feel hungry throughout the day and started asking for food.  By the end of yesterday afternoon, he was beginning to smile and play with his toys.  (His playing with his toys, I have realized, is a gold standard of how Bennett is feeling.) Bennett even felt good enough to Skype one of his buddies at the end of the night.

I could tell I was going to finally be able to sleep.  Around 10pm, Bennett and I turned off the lights and both fell to sleep.  Of course, I knew we'd be up early for a 4am X-ray and bloodwork.  But for now, I could sleep knowing Bennett was happy.

So, imagine my surprise at 3am this morning when I see a medical resident standing silently over my child's bedside, his nurse standing still near by.  They were counting his breaths.  "We are concerned about his breathing," the doctor explained.  "We aren't going to give him any more narcotics because they supress his breathing."

No meds again?!  I can't do this.  I won't do this.

I explained I didn't want him to be pulled from his meds because then the pain gets out of control and we must spend hours trying to catch up.

The nurse explained that yesterday he was breathing comfortably at 22 breaths per minute, now it's 10.  Yesterday, his heart rate was, at the lowest, 71 beats per minute, now it was 50.

Obviously I was concerned as well.  Surely I didn't want to see something happen to Bennett.  I didn't blame the doctors, I just felt scared.  We had had such a good day yesterday.  Why this?!

I quickly consulted a doctor friend: "should I be concerned??  Is he now having lung issues?"

My doctor friend asked how he looked and what his pulse ox looked like. I told him Bennett looked great. He was alert and talking, albeit sleepy.  His blood oxygen was 99.

My doctor friend reassured me these signs are not likely respiratory distress due to pain meds but signs that we are finally controlling pain well.  The reason his breaths are slowed?...because he is finally relaxed.  The reason his heartrate has slowed?...because his body is not feeling pain.  Anesthesiologists actually use both of these signs are measurement of patient's pain - if, under anesthesia, a patient's heart rate and breaths per minute go up, the anesthesiologist actually knows it is the patient's body's indicating there is pain.  My friend who is a doctor reassured me that Bennett's stats, even though they were lower than usual, were nothing to worry about.

I presented this perspective to the 5 Medical Students who just came in the room about 10 minutes ago.  The lead Medical Student agreed I had a point.  But he explained neither he nor I had the power to change what was.  (He alluded to the On-Call Pediatric Surgeon whose orders everyone was having to obey).  The lead Medical Student said, let's "see how he does this morning with his pain."

I can't help but feel a bit manipulated by the doctor.  Was this the plan all along, to keep the meds for a day and then just take him off of them?

I am trying to remind myself that people would never be manipulative with my child's health or well being.  I am trying to remind myself to trust the people who are charged with caring for him, not distrust them.  But it's hard.  Sometimes, I feel like I have to spend my time fighting against providers at times, rather than working with them.  This On-Call Pediatric Surgeon has shown me no different.

When I asked the doctor, "is this a dance," what I was asking is, "are we working together as a team - are we depending on each other - I depend on you as an expert of post-operative care.  And you depend on me as an expert of my son's well-being?"

Instead, of working with me, this doctor decided to insult me - to invalidate my knowledge, experience and power as a mother and to discount my pleas to relieve my son's pain (calming exercises!?).

No, dear sir, I am not going to leave the "doctor" things to you.

I am not a doctor.  I am so much more.  I am the coordinator of my son's care.  I am the one who birthed him. I am the one who has been at his bedside through every one of his 7 surgeries.  I am the one who has the most complete picture of his medical history.  I am the one who knows more about his life-threatening disease than you do. I am the one who recognizes his emotional, physical and educational needs.  I am the one who is responsible for his success in life.  I am the one who loves him and will fight fiercely for him.

I am not going to leave things to you.  To get to him, you must go through me.

I don't know what's going to happen today.  Bennett has not had a bowel movement since his colon clean out.  I know that is to come.  I worry that he is going to struggle with that if he doesn't have pain under control.  But I also know that he is lying next to me still sleeping soundly.  So, for now, I wait...I wait until the On Call Pediatric Surgeon arrives (which I doubt he will any time soon, if at all) and I wait for Bennett to indicate when he needs relief from pain.  Maybe, maybe, neither is to be feared.  Only time will tell.

But I will risk being labeled a hysterical mother.  I will risk being perceived as a mother who can't bear to let her child cry.  But I will not risk my kid going back through the hell from which he just came.

This is not just about Bennett's pain anymore.  It is my own pain that I will not tolerate bearing any longer.

Bennett's Colon Clean Out, My Despair and Rage

Sunday, January 31, 2016

Yesterday afternoon, I came home to rest.  But instead, I just cried.  I cried and cried and cried until my cheeks were sunburned with tears and I was utterly exhausted.

My quiet tears moved to audible moans and eventually to inconsolable screams.

Brian and I had dreaded all day what was going to be happening that night to Bennett, our six year old having to endure a colon clean-out with very little pain meds while his rectum suffered excruciating pain still healing from rectal surgery.

How does a mother even comprehend and cope with that amount of pain?!  Surely, there is no pain relief for me either.

My anguish was overwhelming.  At first I felt anxiety and then sadness, helplessness and then anger...not just anger but rage.  Why was this happening?  Why has CF pushed our backs up against the wall like this?  Why has God abandoned us - abandoned Bennett?!

Last night, Brian stayed at the hospital with Bennett while he was undergoing the colon clean out.  I stayed at home, partly because I needed to rest and partly because I was in no emotional place to cope with Bennett's uncontrolled pain.

Brian texted me throughout the night.  For a long time, Brian kept texting that Bennett was doing fine, resting peacefully under the control of a muscle relaxer.

Maybe he was peaceful but I was not.  My heart was being torn in to a million pieces and I didn't know what to do.  I texted Brian about how angry I am at God.

In response, Brian sent me several verses from Job and Psalm that spoke the words we feel:

"If only my anguish could be weighed and all my misery be placed on the scales! It would surely outweigh the sand of the seas— no wonder my words have been impetuous. The arrows of the Almighty are in me, my spirit drinks in their poison; God’s terrors are marshaled against me.” Job 6:2-4 NIV

“Hear me, Lord, and answer me, for I am poor and needy. Guard my life, for I am faithful to you; save your servant who trusts in you. You are my God; have mercy on me, Lord, for I call to you all day long. Bring joy to your servant, Lord, for I put my trust in you. You, Lord, are forgiving and good, abounding in love to all who call to you. Hear my prayer, Lord; listen to my cry for mercy. When I am in distress, I call to you, because you answer me. Among the gods there is none like you, Lord; no deeds can compare with yours. All the nations you have made will come and worship before you, Lord; they will bring glory to your name. For you are great and do marvelous deeds; you alone are God.” Psalm 86:1-10 NIV 

“Lord, you are the God who saves me; day and night I cry out to you. May my prayer come before you; turn your ear to my cry. I am overwhelmed with troubles and my life draws near to death. I am counted among those who go down to the pit; I am like one without strength. I am set apart with the dead, like the slain who lie in the grave, whom you remember no more, who are cut off from your care. You have put me in the lowest pit, in the darkest depths. Your wrath lies heavily on me; you have overwhelmed me with all your waves. You have taken from me my closest friends and have made me repulsive to them. I am confined and cannot escape; my eyes are dim with grief. I call to you, Lord, every day; I spread out my hands to you. Do you show your wonders to the dead? Do their spirits rise up and praise you? Is your love declared in the grave, your faithfulness in Destruction? Are your wonders known in the place of darkness, or your righteous deeds in the land of oblivion? But I cry to you for help, Lord; in the morning my prayer comes before you. Why, Lord, do you reject me and hide your face from me?”  Psalm 88:1-14 NIV 

Once Bennett's colon clean out began, Brian and I decided we could no longer tolerate what was happening. Bennett needed pain medication and we resolved to do whatever it took to get it.

I called from home the charge nurse and asked for her to page the doctor on call to give me an immediate call back.  Brian also asked Bennett's nurse who was supporting him through this clean out to get the doctor to come asap.

The doctor on call came and watched what was happening.  She could see Bennett was agonizing in pain and, with some pushing, agreed to care for his pain appropriately.  Within a short bit of being given pain med, Bennett was calm and in deep sleep.

It was all too much for me to handle to be far away from Bennett who was helplessly hurting and to be away from Brian who was having to absorb Bennett's pain alone.  I couldn't stay at home.

Our dear babysitter Peyton had come to spend the night last night to watch Oliver and Avonlea so I could rest and be ready for the next few nights at the hospital.  But I could not rest at all.  I decided to grab my stuff and drive the thirty minutes to the hospital at 1:30am.

Brian was shocked to see me at the hospital in the middle of the night.  I hadn't told him I was coming.  He was also sad because he had really wanted me to stay at home and get rest.  He had really wanted to protect me from seeing Bennett's suffering.

But after the inner desperation and rage that built inside me earlier in the day and after the overwhelming helplessness that overcame me as Bennett's colon clean out began to kick in from afar, I could not stand to be separated from my son and my husband.

I was so angry at the team's absurd approach to allow a child to suffer that I also came down because I couldn't miss a meeting with the Attending physician/Pediatric Surgeon who had made this call and would be visiting Bennett's room the next morning.

I will blog about that meeting and how our day went today soon.  But I wanted to share something that was comforting to me even in the midst of utter despair at seeing my child suffer last night.

Yesterday during my moments alone in grief, I asked my friend, Emily, who is an adult with CF, how those with CF cope with these kinds of terrible personal hells.  I asked, "Will Bennett suffer forever because of this? How much can one person handle?!"

She wrote words that I will forever hold on to...words every parent of a child with Cystic Fibrosis or any chronic disease should hear.  She wrote:

"Will it affect him? Yea.

What will he remember? How in the horror of the hospital experience, you and his dad were his relentless comforters and companions and advocates -- and never left his side. How he wasn't in any of this alone. How it was a family journey. How home is where the family is. How through the worst pain and fear and agony, we can survive... and rise and thrive again.

You have to keep just putting one foot in front of the other right now, in autopilot mode, until you get through the sludge and see the light again.

But you have to remember, this will be just one memory of one experience in a quilt of many more. And most of those other ones will be wonderful patches."

Bennett has been re-admitted.

Saturday, January 30, 2016

I have dreaded writing this post.  It makes me SO sad, so hurt, so angry, so disappointed.

We were simply not been able to get Bennett's pain under control while we were at home, despite that we were giving him more and more narcotics.  So, this morning, I went to the ER where they decided to admit him back in to the hospital.

Initially, this morning, the doctors were concerned about an infection (a very real risk after bowel surgery). So, we did a CT scan and blood work, which showed there was no infection.

However, the CT showed Bennett had a lot of backed up stool - backed up stool possibly irritated by the surgery but most likely made worse by a combination of pain meds (pain meds slow the bowel) and cystic fibrosis (thick mucus in the bowels negatively affects bowel function).

The surgeons have two working theories on what is going on with his pain:

1.) his pain may be being caused by a suture that is too low in the rectum area and will eventually be absorbed by the body...but not for several pain just may not be controllable or

2.) his pain may be being caused by or exacerbated by poop that has has built up at the resection point where they did surgery and is pushing on the smaller piece of colon causing pain.

If the pain is being caused by the first, they don't know what to do.  If the pain is being caused by the second, they think "cleaning him out" will help.

So, we were readmitted this morning.

They have decided to give him GoLightly, which will clean him out. However, they do not want him to get constipated again so they don't want to give him many pain meds.

Imagine if the pain wasn't controlled on a LOT of pain meds, how hard the experience of having a colon cleanout on almost no pain meds is going to be - I have to believe this is going to be torturous for him.

The doctors have said that if this "clean out" works and yet he is still hurting, they have no backup plan.  They said they will start making calls and start researching to see what our options are.  But they said they don't know what to do about uncontrolled rectum pain.  But they agree it's excruciating to experience.

I tried to understand why we are having such a hard time right now.  Why is this so terrible?  The doctors said his CF, his age and this being his 4th rectal prolapse surgery are all making this harder and more awful.

On top of that, in a separate conversation, the doctor explained to me that the poop accidents we are seeing in Bennett's pants are because Bennett is going to have to relearn to some of this bowel control again.  Apparently, and nobody told me this before now, whenenver you mess with the bowels and rectum muscles, some portion of that control has to be relearned.  So, until he does, he will need to wear pull-ups. It may take 6 weeks to gain back function.

My kindergartner could eat and poop on his own two weeks ago now has to be tube-fed around the clock and has to wear pull ups.  It makes me so so sad.

I was able to get only 2 hours of sleep last night due to Bennett's pain med schedule and his screaming/moaning all night.  So, Brian met me at the hospital this morning with his bags packed and asked me to go home and sleep.  He asked me to let him absorb what happens with Bennett when he has a colon clean out after having bowel surgery with no pain meds.  

I have this terrible feeling of relief and guilt.  I am thankful I do not have to watch my son suffer today.  I have been doing it for more than a week and I'm at a point in which it is intolerable.  But it's a terrible feeling as a mother to know I get to walk away when Bennett cannot.

What was awful just got worse.

I don't want decorate another hospital room.  I don't want to open the drapes and see the sunshine Bennett can't enjoy.  I don't want bring my other two kids to see their brother who still cannot get relief.  I don't want spend another night on a too-small plastic couch being interrupted by annoying beeps and footsteps of strangers.

This is what it's like to live with Cystic Fibrosis: to dread every single day a day like today, and then to find yourself on a day like you dreaded, and realize, it really is as bad as you thought it was going to be.

We will get through it.  But my heart is broken.

Pain Control

Unfortunately, Bennett's last two days at home have been equally hard as those in the hospital. 

We have still not been able to get Bennett's pain under control.

Yesterday afternoon, about 24 hours after we had returned home from the hospital, while giving Bennett a dose of his Hycet, I realized half of the bottle was gone. 

It turns out that during the discharge process when we were given a pain med prescription, the script was accidentally written to cover pain lasting 2-4 days. Since we were using the higher amount prescribed, that meant we would be out of pain medicine by 48 hours of discharge. 

I was so upset. I knew it wasn't done on purpose, it was a genuine mistake. But pain med prescriptions are such a pain. By law, prescriptions for narcotics must picked up in person (no having your doctor "call it in") and there is never an option for a refill. This meant that my only option was to drive back down to Temple (1.5 hour round trip) to get more pain meds before the weekend.

I called Bennett's local Pediatrician (who is a godsend) and asked for help in getting a prescription for Bennett to get us through the weekend. Knowing our family and Bennett well, she was happy to help.  She actually raised a concern on the amount of Tylenol and Motrin he was receiving, particularly in light of how Bennett's liver is already compromised by CF.  (At that time, Bennett was already taking 1/3rd more Hycet than is typically recommended per day for kids. And we didn't see any end in sight as this medicine wasn't controlling his pain.)

The Pediatrician, Surgeon and I agreed that Bennett needed a pain med that we could continue to be dosaged up and be give more frequently but without the risk of overdosing him on Tylenol. Our only option was to stop giving Bennett Hycet and compound Hydrocodone separately instead.

So, yesterday morning I ran across town to pick up the prescription (which was significantly closer to our house than having to drive back down to Temple 30 miles away) and took it to a local compounding pharmacy in town.  

Compounding pharmacies are pharmacies that can basically make any med they want the want it. They can make meds in different forms and in different dosages. 

We needed a pediatric dose of hydrocodone without Tylenol.  I picked up and took home.

The sweet pharmacist who helped me is amazing. I will forever be grateful for the way she cared for me yesterday. She encouraged me to call with questions and explained that she would work with my Pediatrician to help us find a solution to get Bennett's pain under control. 

With her help throughout the day, we titrated the med until we could find an amount that gave Bennett comfort. 

It seems we have found a comfortable spot with pain meds, except that every time Bennett goes to the bathroom, he screams and kicks as though he is pooping pieces of glass. I'm not even kidding. Brian describes it as his responding as though he had been shot and or been stabbed and someone is continuing to move the knife around. It's been excruciating to watch.

When I spoke with his surgeon yesterday morning, she explained there could be pain due to suctures near the rectum where the resection of the bowel took place. But it seems like any passing of poop is intolerable to Bennett.

This is challenging considering we are also trying to tube feed Bennett every few hours (his appetite and interest in food have not returned). Every time he eats, he needs to poop. Every time he poops, he screams blooding murder.

So, we are monitoring the situation but leaning towards returning to the hospital if we can't control it soon. Between this and the morphine issues in the hospital, I would say Bennett has really been tortured through this ordeal. 

Brian and I are desperate for him to have relief. We don't understand the severe acute pain - why it's really happening, how long it's going to continue to last or how to stop it. But he needs a break. 

Bennett describes these poop episodes as being 10 and 11 on the pain scale. And we regularly hear him moan in pain saying, "I just want to feel better. Please make me feel better."

We keep upping his medicine dose again and again but, still, he describes his pain as being unbelievable and, still, we see his toes curl, his legs move about and his face turn red in anger. I have said too many times: "just be patient, it will get better." It's not getting better. We need to do something more.

If we go to the hospital, it will be to get IV drugs for pain that oral meds just can't address. We worry about increasing the oral meds so much that we may be making Bennett nauseated. 

We have not been able to start back his cystic fibrosis lung hygiene routine. This is of paramount importance. But it comes after making sure he is comfortable. 

Even as I write this, it's 3:25am. I am waking to give Bennett pain med every two hours. But between his pain and having to go to the bathroom, I have slept only one hour.

I will update as I know more.

We are going home!

Wednesday, January 27, 2016

I can't keep from singing the lyrics from the Imagine Dragons song, "On Top of the World": "I'm on top of the world, hey! I'm on top of the world, hey!"

We are headed home today after 7 days in the hospital! Wahoo!!!!

Bennett will likely be out of school for the next two weeks due to pain. He has been told not participate in sports or P.E. for 6 weeks.

But we will soon be home to rest and recover among the people and things that make us the most happy.

I have already warned Brian that I'm going to need to be out of commission for a few days just to recover from the lack of sleep and emotional toll this has taken. But he has reassured me he will take care of the mommy duties while I'm down just as he has while I was away. He is a great husband.

We are thankful for all of the love, support and prayers sent our way this last week.  Our hearts are full!!

Oliver and a nurse who made a difference

Tuesday, January 26, 2016

Each day since Bennett was admitted, Brian and I have made sure that Oliver and Avonlea travel the 30 miles south to visit their brother in the hospital.  We know it lifts their spirits (and ours) to be together as a family and know each other is doing well.
Avonlea knows no other world than one with Bennett suffering from CF.  However, Oliver has been there since before the beginning of our CF journey.  Oliver was Avonlea's age (2 years old) when Bennett was born.  So Oliver has essentially been along the ride for every one of the 7 surgeries and multiple hospitalizations Bennett has endured.

Because of this, we are especially attentive to Oliver's emotional needs, knowing that he is helpless in his watching his little brother undergo painful and challenging experiences.  Like Bennett, Oliver is in play therapy so that he can work through the myriad of feelings that comes with having a brother with an incurable chronic disease.  Oliver has known since preschool that Cystic Fibrosis is fatal.

Brian and I are acutely aware Oliver absorbs a lot in regard to Bennett's health.  We know Oliver often worries more and carries more than we wish he would.  There are moments when this especially peeks through.

An example of this was this weekend at the hospital.  At the time, Bennett was still regularly being hooked up to supplemental oxygen due to low oxygen saturation in his blood.  Bennett's blood oxygen rate and heart rate was reguarly being monitored through a pulse oximeter machine on the wall.  At times when Bennett's rates were high enough, he could take off his mask.  But if they dropped, we were asked to help him get more oxygen by wearing his mask.  

I hadn't thought much about the situation until Oliver came to visit that evening.  Every time Bennett's monitor would alarm, Oliver would chastise me for not paying attention to Bennett.  The first few times, I would calmly explain that Bennett was ok and Oliver should not worry.  But after a while, I began to notice true panic and fear in Oliver's eyes. 

I eventually asked enough questions to be able to understand Oliver's fear was that ignoring the alarms would mean Bennett was going to die. Oliver hardly stand the blinking lights and alarms. He told me, "I get scared when Bennett begins to cry."

I knew I needed to slow down and really help address Oliver's fears.

I would have called Child Life Specialists to help Oliver cope with everything he was seeing.  But they do not work at the hospital on the weekend.  

Instead, I turned to our nurse, a really sweet woman who has taken the very best care of us several times during our stay. 

I explained to our nurse, Allison, that Oliver has been very concerned about Bennett's health and might do well to learn more about how the machines Bennett was connected to help him stay well. 

Allison was a natural.  She turned to Oliver and in a very grown up but understandable way and explained to him how the oximeter worked (see the small machine on the right-hand corner of picture).  

Allison put both of her hands on Oliver's shoulder and said, "Oliver, the first and most important thing you need to know when working this machine always must start by looking at the patient."  

She gently turned Oliver's head towards Bennett.  She said, "you always start with the patient.  If they look good, that gives you important information." This was really great for Allison to say to Oliver because, despite that Bennett was awake, moving and talking, Oliver wasn't convinced he wasn't in dire need.

Allison she continued by telling Oliver about how the machine is hooked to a very small monitor with a light on the tip of Bennett's finger.  She explained that this tiny finger monitor can often get moved causing interference and therefore a poor read.  Then, she explained what each of the lights and sounds meant.

I didn't hear all the words she spoke.  I was too busy watching Oliver's face.  I could literally see his anxiety melt away, his shoulders begin to fall and a slight smile take over his grimace.

"...But remember, the very most important thing you need to know about working this machine is..." Allison started.
" always look at the patient," Oliver replied. Then Oliver sighed. "Oh ok.  I was just worried." 

This moment between Oliver and Allison was one of those moments you take a picture of in your head and you know something really important happened.  

A shift happened for me in that moment as I recognized the power of knowledge.  The more Oliver knows about the machines, the treatments, the medicines that Bennett is undergoing, the more likely he is to feel peaceful about Bennett's care.  

I also think something shifted in Oliver in that moment.  Allison had just calmed my son in a very important way - a way that will be lasting.  Oliver now understands that while machines are important, it is interpreting them correctly that is most vital - and sometimes it's not the machines that we use to tell us how things are going, it is our eyes.

Going forward, I am going to always request that we have someone (a nurse or child life specialist) walk around the room with Oliver and explain things to him.  I think it will help significantly.  

Oliver knows he should be worried.  He just doesn't know exactly what he should worry about.  I think this will help calm his heart.

I wanted to mention a few other things about what Allison did for our family while we are here.   

Allison always gave Bennett his meds on time and she fought consistently with the medical staff for Bennett to have relief when Bennett was going through the morphine withdrawal and intense reaction. 

Allison also heard me on the first day of our stay talk about how concerned I was that certain hospital staff were not abiding by the infection control protocol, even as signs were approrpiately posted and we were placed in the infection control room.  

Allison heard my concerns, reported it to her supervisor and then took it to the nurses' safety huddle.  Then, before Allison left from her shift, she created a sign and put in on the door. 

We literally have had not even one issue ever since.  Doctors to Housekeeping to Dining staff have all abided by her new sign.  I am incredibly grateful for her leadership in this area and her efforts to keep Bennett safe.  I love that I didn't have to make this sign - Allison advocated for us before I even had the time to think to do it.  That's an excellent nurse. How grateful we are to have had her as our nurse three separate times during our stay.

One other thing Allison did to make our experience easier was to design this little contraption on our bed.  She placed a tongue depressor wrapped in tape on Bennett's bed to keep all of the cords from getting tangled.  I cannot even express how ingenious and helpful this was for us, especially Bennett.

Unable to break out of the hospital to grab a little thank you gift for the way Allison went above and beyond for us, this weekend, my sister helped us grab a cookie tray at McAllister's when she picked dinner for us one night while Allison was working.  We have it to her to share our gratitude to Allison for the way she went above and beyond to care for Bennett. (Oliver, also wanting to give Allison something of intramural but also having little to give, gave her his chips from his dinner. Allison took it graciously which made Oliver proud.)

Although this hospitalization has been a painful one, Allison's initiative and tender care for my children made a difficult situation just a tad bit less painful. 

A little less worry for Oliver. A little less concern for mom. A little easier time with cords for Bennett. Nurses have the ability to change lives sometimes in big ways and sometimes in little ones. We are thankful Allison is one who helped change ours.

Monday Night Update

I am listening the sounds of Bennett breathing deeply next to me under the glow of colored Christmas lights. Bennett has been asleep for two hours now, despite multiple visits and vital-taking from doctors and nurses who have come in an out.  

As soon as the sun went down, so did he.  Bennett was given back his narcotic drip this evening to soothe the residual pain in his abdomen the other medicines just could not pacify today.  I was really appreciative his pediatric surgeon was so sensitive to his pain management and replaced the drip as soon as she realized how uncomfortable he was.  

Tonight I learned that if we can lessen the need for the pain med pump within the next 36 hours, we may be able to go home on Wednesday.  Of course, outside of controlling the pain, we still have to get Bennett's nutrition going again.  He has not been interested in eating so we decided to begin his gastric tube feeds again in order to move him forward in this area. Hopefully he will handle these feeds well.  Bennett's lungs are looking good.  We are trying to help him get back in to his cystic fibrosis lung care regimen but it might be a while before that happens.  He is off of supplemental oxygen and beginning to take deeper breaths, which are great signs.

One thing that might delay us is a possible infection of one of his incisions.  If it turns out to be infected, we will have to sedate him to allow the doctor to go in and clean out the infected site.  But, the Pediatric Surgeon isn't sure whether or not it's infected.  Blood work and further observation is necessary to determine this.

I am so thankful Bennett is sleeping.  I am hopeful I can sleep soon.  But the fear of someone walking in the room and walking my sleeping baby keeps me awake.  Once I am home, I will crash.  For now, I sleep as my body, my son and the nurses let me.  

One way or the other we will be home soon,