Tuesday, January 27, 2015

Adenoidectomy Surgery Done

This past Friday we headed down to the U of M Children's Hospital, bright and early, for Olivia's Adenoidectomy surgery. We arrived at 6:00 am with surgery at 7:30 am. Olivia was anxious of course and the anesthesiologist decided to give meds before she was taken back to the OR to calm her down a bit. Once Olivia, I and the OR staff got back to her operating room she was transferred to the operating table while they hooked everything up. After trying 2 different machines, 2 different connectors and finally getting the O2 sensor to read on Olivia's toe, delaying the start of surgery by 15 minutes, we were finally set and the anesthetist was administering Olivia's sleeping medication. We were all glad she had the versed previously as laying on that OR table while still awake as they tried to get the O2 sensor to read, would have been even more anxiety inducing for Olivia. I stayed with her until she was out and then took "White Kitty" and headed to the waiting room to wait with Jeff and Landen. We waited for about an hour and then were called back to recovery.

The worst part of the day was how Olivia reacts to the anesthesia. When it's wearing off she just cries and screams uncontrollably. She's had similar reactions when she underwent infant PFT's and also this past summer wit her g-tube surgery. We could hear her crying out "Mommy", as we neared her room. As painful as it is to see her in that state, try and try as you may there is just no comforting her as she comes out of it. A bit stressful but it didn't take too long, although it felt differently at the time! Once she was finally calmed down a bit and showing improvement and we could all decipher that the screaming out was not from pain, she was given some water and a popsicle and we were being discharged. Olivia and I got a ride out in the wheelchair together to the car and we were on the road back home by 10:30.

All in all, the day went a lot smoother than we had anticipated. Olivia's surgeon said that even though Olivia wasn't suffering from a cold at the time of surgery, Olivia's adenoid was still huge, proving that when she was first seen by Dr. Meyer that the enlarged adenoid wasn't solely the result of being ill, so the surgery was a success and we were told this should help. We were also told that Olivia would have a sore throat for a few days because of the breathing tube, which she did. We were told she'd probably be stuffy and congested which she actually wasn't. Jeff and I figured that since the adenoid was blocking around 75% before, having removed it wouldn't cause near as much stuffiness as it did when she was ill and that proved to be the case. She hasn't been congested at all and has bounced back like a champ. Of course, as we knew, her appetite was null and she didn't want much to do with shakes, popsicles or ice cream so we did what she'd tolerate, gave her zofran to curb the nausea, made sure she was hydrated and got in as much as we could through bolus feeds over the weekend.

Glad that is over and glad that she should benefit greatly from having the surgery. She already is sleeping silently at night which is so wonderful to hear, compared to the snoring and trouble she had breathing through her nose before.

Now . . .

we were instructed to start her nightly feeds back up yesterday by our CF team last week when we met with them on Monday. Olivia, Jeff and I discussed it last night and she agreed to give the g-tube back pack a try rather than using the IV pole. I showed her how to unplug the cord from the feeding pump and carry the bag around if/when she needed to get up. This eased some of her fears and once she fell asleep she did pretty well. I started the feed off at a slow rate as instructed, 35 mL/hour and will increase by 10 mL/hour each day until we are back up to near goal amount. She didn't wake up screaming, just called out to me around 3:00 am to take her tube off, which I did. No need to scare her into something we are just trying to ease back in to. Once I disconnected everything, I told her to try to sleep in her own bed since she doesn't sleep well at all when she crawls in with us and she did until about 5:30. So a big improvement. We'll see how it continues to go.

Her biggest fears aren't so much with the tube it seems but rather she's just so afraid that we are going to leave her. A work in progress. We will continue to try the tube feeds nighlty this week at night and see how they go. We go back in to CF clinic for our 3 month follow up on Monday and we will meet with a psychologist at that time and get a plan put in place on how to proceed.

Tuesday, January 13, 2015

ENT Appt Update

Yesterday afternoon we met with the ENT. My hope and thought going into it was that we would be able to rule out sinus issues as the cause of Olivia'a vomiting and look more toward reflux as the cause of it. As with most things CF, nothing goes according to any sort of plan.

Thankfully, Olivia's ears and throat looked good. She didn't have any polyps in her nose so that was good news. The doctor decided to use the camera/scope to look at her adenoid just to be sure and it was good that she did. She noticed that Olivia's adenoid is so enlarged it's blocking about 75% of the space in there. She said the enlarged adenoid could definitely be contributing to the nausea and vomiting but it could also be reflux related so we are still trying to figure it out.

Regardless the enlarged adenoid is what is causing Olivia to sleep poorly, snore, have trouble breathing through her nose and be congested. We need to take care of the sinus issues to prevent lung damage so it's good that we found this out now. Olivia will undergo adenoidectomy surgery within the next few weeks. Because they do not remove all of the adenoid during the surgery, there is a chance it could grow back but not necessarily and the benefits of having it done far outweigh the risks. The enlarged adenoid could be genetic, hereditary and/or from chronic inflammation related to CF sinus disease.

The surgery itself  should be an outpatient procedure depending on how Olivia does. We are hoping that this is the case since after Olivia's g-tube surgery in August, the last thing she or we want is another hospital stay if we can avoid it. We should be able to have this surgery completed within the next two weeks and in the meantime we are hoping to hear back from our CF team on how and what to do to reduce and eliminate the every morning vomiting and lack of eating problems we are experiencing.

We are on a wait list to meet with GI, otherwise our appointment isn't until February 11th. Olivia has dropped 2 lbs in the past week, so clearly waiting it out until the 11th isn't going to be beneficial at all. I'm hoping we can get some answers and a plan to try in the meantime.

Wednesday, January 7, 2015

So long 2014

I'm not one to wish time away, far from it. I get how precious time is; each and every day is a gift and we are blessed if we are gifted a tomorrow . . . but I'll be the first to admit and say, that I sure am glad that 2014 is over. I hope that 2015 is a better year for our family.

As I looked over our photos from 2014, I didn't have as many as in years past, probably for many different reasons: too busy doing the fun instead of snapping photos of it, no big vacations or fancy trips, both my camera and the laptop were on the fritz for awhile . . . the list could go on and on. In hindsight, I'm sure I had plenty of reasons, or maybe it was laziness, but as it goes with most things, I wish I'd have gotten more pictures of just the day to day stuff. I'll try to do better in 2015, especially since I have a new laptop and camera!

I digress, but still, I was glad to say goodbye to 2014. I wish we could say we went out with a bang, I wish I had a whole bunch of fun photos from our annual New Year's eve dance bash here at home but I don't. Olivia was sick. We didn't do much dancing. I did make up all the fun appetizers that are a tradition now but this year it just wasn't a big hoopla like in years past. We are all tired, exhausted and just trying to muddle through one day to the next.

I don't think Olivia nor I have gotten a good solid night of sleep since pre-g-tube days. It's exhausting for both of us. Some nights are better than others, but it is a give-in that we will be up at least twice (if it's a good night) to as many as five times or more, if it's a bad night. I feel like I'm raising an infant rather than a 5 year old.

Since Olivia's g-tube placement, there hasn't been one good night of uninterrupted sleep, and that is no exaggeration. It's so difficult to figure out that which is true of what a 5 year old says, but from the best Jeff and I can figure, Olivia's lack of sleep is directly correlated to the g-tube. At night, she is hooked up to the feeding pump that is housed on a iv pole, plugged into the wall. She feels trapped, locked, stuck in her bed. She feels like if she needs me she can't get to me.

She's terrified.

I get it.

I'd be afraid too if I felt locked in my bed. Jeff and I have tried using the g-tube backpack instead of the pole to make it more mobile for her. Jeff's showed her how to unplug the machine so that she can wheel herself down to our room if needed. We've skipped the nightly g-tube feed altogether. We've exhausted so many options, tried so many different things and yet here we are over 3 months later and her sleep continues to get worse, not better.

I don't enjoy getting only a few hours of sleep per night. I don't enjoy getting woken up to blood curdling screams, but honestly I can deal with that, really I can. What I can't deal with and what I can't seem to fix is the thoughts rolling around in Olivia's head. We can't for the life of us, ease her fears that we are going to be here, that we aren't going to leave the house, that if she needs us at night we'll come to her, those thoughts which can terrify her so much that she makes herself vomit, repeatedly during her nightly feeds. Regardless of what Jeff and I say or do, for whatever reason, Olivia can't seem to believe us that it's going to be okay, that we are here to take care of her and get to her when she needs us during the night. It's painstakingly awful that she doesn't trust us and that we can't comfort her to ease her fears. The only way her fears are lessened is if she's right beside me, my shadow. If she can't see me, she's terrified.

When Olivia's ill, it's ten times worse. Thus, for the past week now, things have been hard. Olivia has a "cold". Even though she has cf, this cold shouldn't be this bad for her. She'll run around and play and act fine and yet she won't eat by mouth, if we try to get her to she'll gag and vomit. She'll wake up in the middle of the night and throw up all of her g-tube feed. She's done fine overcoming worse illnesses. For whatever reason, she gets herself so worked up repeatedly when she's sick to the point of gagging and vomiting. She's scared to eat because she believes she'll puke. It's as if she wills herself to puke. I can pump 60 mL or more of blended food into her belly in a few minutes and she has no problem. Try to get her to swallow a bite of the food, she'll gag, chew on it forever, refuse . . . it's difficult.

For the past 3 months since this has been the course, Jeff and I thought these issues might be GI related. We thought maybe her sinuses are causing the issues but there is no consistency to any of it. The only consistent thing is Olivia's fears and those thoughts she has stuck in her head that she is going to puke and then she does.

It's so hard to gain ground. We are thankful we have the g-tube, but nothing is gained when she vomits up all of her nightly feed and won't eat during the day. Thankfully, we can pump food directly into her belly during the day to get her fluids and calories, but her lack of weight gain remains a huge struggle.

Jeff and I have no idea what it is like to have cf, what it feels like for her, the mucus that builds up and clogs her throat. No idea at all and we try so very hard to be compassionate and understanding and do everything we can to help her but how in the world do we change her thoughts, get her to trust and believe us? No matter what we say or do, her night terrors about not being able to get to me are there and she wakes up repeatedly screaming.

It's exhausting, terrifying, heart wrenching, so many things.

Going forward, we meet with the CF team in February, followed by a meeting with GI and now we will also make an appointment with ENT to go over all areas. We hope to rule out some issues and if needed fix or work on those that are present. We will continue to try to ease her nightly fears and hope things get better for her and do what we can to continue to work on her weight gain struggle and hope that as a whole 2015 will be better than 2014.

A few photos from Christmas:

Olivia's 1D bedding and pj's. She loved the bedding so much but after just 2 days and a nightly episode of puking and having to wash it, the comforter tore itself to shreds in the washing machine and just like that, the gift Santa brought was ruined. So very disappointed but thankfully we have a different bedding set on the way. When it rains it pours.

1D Harry Doll - her absolute favorite. Olivia got so many 1D things, she's so in love with them all. I wish I could somehow use Harry as a reason to calm herself down and not puke.

Grandma Pam even found 1D wrapping paper!

Christmas morning: gifts from Santa. Olivia's much loved 1D bedding set and Landen's Zoomer the Boomer Dino Robot pet.