Lessons Learned during hospital stay

I have been compiling a list of lessons I learned in the past week. Please keep in mind that some may be specific to Cincinnati Children's, but most are pretty generic. I tried to separate them into categories for easy viewing. 

What we should have taken, but didn't:

• My own pillow for sleeping in the room, Hospital pillows are awful! 
• A few more bags to take stuff home. It is amazing how much they accumulate. 
• More pairs of underwear for G. I took a few pairs that were getting too small so if she had an accident, I just threw them away.  The laxative worked a little too good and we ran out of underwear. 
• A few cans of Sprite and Ginger Ale. Hospitals are getting away from providing sugary drinks to patients. Sprite was all G would drink for 2 days, so we had to buy bottles at the vending machines. 
• Roll of tape. I had to use some from the nurse's station to tape up G's cards from friends.

What we should have left at home: 

• My laptop. We had our Ipads and phones, and that is all we used. The laptop bag just sat and took up space.
• Movie DVDs. They didn't take up much room, but were never used. We activated our streaming Netflix account before leaving and used the iPad. So we never used any if the movies we brought. The Child Life Specialists had a broad range of movies as well. 

Things we were glad we brought:

• iPad and Netflix subscription
• Snacks
• Extra, empty bags. (Even though we should have brought more)
• Slippers for everyone staying in the hospital room.
• Dirty clothes linen bags. Every couple of days, we would take a linen bag to the car to help with space.
• Sweatshirts. Hospital rooms are cold no matter how much you turn up the thermostat. A zip up sweatshirt is your best friend.
• My own bar of soap. I bought a trial size of the soap we use at home and it was nice to have that little bit of home with me. Sounds odd, but I promise it is true. 
• My USB battery pack. Here is the link to the particular battery pack we use.  This is a handy device no matter where you are, but it especially came in handy at the hospital. I was able to run the iPad off of the power supply when G was watching movie without worry about battery life. I highly recommend one for daily life.

I talked about our "Drive Home" bag in an earlier post. Even though we didn't need it, I am so very glad I had the foresight to gather the stuff together. 

Miscellaneous lessons:

• G benefited greatly from french braiding her hair into pigtails. It gave the ability to shave along the midline without disturbing the braids. And we didn't have to worry about excessively tangled hair during the hospital stay. 
• Defizz the carbonated beverages. We learned to open the sprite as soon as we got it to eliminate the fizz factor. Post op, the carbonation made her cough which was very painful. 
• Make sure you understand what medications are being given and the common side effects. You will be with your child and need to know what to watch for. G was on a variety of meds including strong pain meds, steroids to prevent swelling, prophilactic antibiotics, muscle relaxant, reflux meds, and nausea meds.
• Meds will make them very drowsy. This is a positive short term side effect in my mind. It allows them to relax during the most painful part. But they will be wobbly when walking. 
• During post op days 2&3 is when most of the swelling and stiffness occur. Bare this in mind if you decide to refuse any medications.
• The neuro monitoring used during decompression surgery at Cincinnati can cause bruising at the needle sites. Don't be concerned if you notice small bruises pop up during the days after surgery if neuro monitoring was used. 
• Cincinnati Children's offers meal cards. They are $6 each and allows you to get an entrée, 2 sides, a dessert and drink.  You cannot use them in the cafeteria, rather you need to use the room service number to order your meal.  I typically ordered mine the same time as G's meal.  The other rule is that they will not include a soft drink.  You must get tea, milk, juice, etc. 
• Before leaving for the hospital, I spent a day cooking make ahead freezer meals.  I am so glad I did so that now, I can concentrate on G's needs instead of figuring out the next meal. 

I hope this list helps someone out there to prepare for an upcoming decompression surgery. Feel free to add anything I missed in comments!

Post Op Day 5

Being home is definitely the best medicine. The drive home was very unremarkable. We dosed G with her muscle relaxant, pain medicine and nausea medicine just before leaving the hospital. Within 15 minutes of leaving, she was asleep and stayed asleep the whole 3 hour drive home. So, as predicted, the backpack filled with nausea/vomiting items were not needed. We packed G in her car seat with a blanket around her head to keep the head "flop factor" down. And had a vomit bag and towels on her lap. Thankfully I never had to test either out. 

Day 5 started after a very, very good night's sleep for all. DH was kicked out of the bedroom and is sleeping in the guest room until further notice. G is sleeping on a sleep wedge in our bed with me.  She is used to sleeping on the sleep wedge due to her reflux but, it gets double duty now. NS suggests sleeping at an incline to help limit swelling at the incision site.  

The rest on the day was filled with lots of movies and crafts. We setup a section of the couch to cater to G. She has a small basket filled with her crafts and a TV tray on which to set her drinks.  I can tell that keeping her occupied will be a chore the next couple of weeks. She feels very good and doesn't understand why she cannot self regulate her play. We caught her running down the hall toward her room without thinking about it. My biggest fear now, is that her great recovery experience thus far will be her worst enemy. 

One part of discharge instructions called for incisional care and daily hair washing and shower. We did this in the hospital before leaving and it was quite the fiasco. G was terrified about getting her incision wet.  We finally accomplished the task, and I'm not clear if her hair got all that clean. Today's shower went much better. No tears or anxiety which helps the anxiety level for both of us!

Incision care seems pretty easy. We wet a surgical hand brush with warm water mixed with Johnson's baby shampoo. Then gently sponge the incision for about a minute. It is slightly painful, but not too bad.  I ensure that G receives pain Meds about 30 minutes prior to the bath.

After her bath this evening, she began shaking and couldn't stop for about an hour. G said that she didn't feel cold but couldn't stop it. I placed her on the couch, put her robe on, and wrapped in a blanket while I got the thermometer. She had a slight fever that we will watch closely. 100.5 is the magic number to call the NS. We are currently at 99.7. Slight fevers are common post op, but still worries a mom during recovery!  Hopefully by morning her temperature will return to normal.

Post Op Day 4 and Home Bound!

NS was in this morning and very happy with progress! As far as they are concerned, she can head home. My only concern is eating. Once she shows me that she can can eat a decent amount and keep it down, I will sign off on discharge as well. 

I am quite amazed how well she can move her neck. I had not expected this much progression this quickly. I suppose that speaks to the necessity of the at home PT exercises.

Her pain seems to be very well controlled with the oral pain meds, incision looks wonderful and her spirits are high. For breakfast, we ordered a variety of food. Evidently her appetite has somewhat returned. She ate a whole donut, 1.5 sausage links and some cereal. That made me feel so much more comfortable!  Now, as long as she can keep it down we will head home.

A shower is in order so we know how to wash her hair and around her incision. Then lunch, then home!

Oh yeah, we promised one more trip to the playroom on the way out. That will be where we can be found while DH is stuck packing the car. :)

Post Op Day 3

Today was a wonderfully progressive day. G has walked the hall multiple times with rare difficulty. She has a bit of a tightrope walker gait that she didn't have before. So PT is working with her on that. She is to continue neck exercises prescribed by her therapist.

Her left wrist IV was removed this morning. G was freaking out slightly due to the arterial line incident in ICU. But once it was done, she couldn't believe how little it hurt. Her IV fluids were discontinued but her saline lock will stay in until we leave. Once she was free of cords and tubes, she was much more free to move around. Plus, she has a free hand to eat and drink. I think this helped her emotionally.

PT was very a positive experience today. There are various milestones that Chiari/neuro patients must do before they are discharged. Some are bodily functions, some are pertinent negatives and others are PT related. G has now checked all PT items off.  The last of which is to walk up and down some stairs. One slightly odd thing did happened during her last PT session. After stopping to rest, she reported moderate pain in each foot. It only improved when she stood up. Laying in bed and sitting with feet dangling off a chair made it return and get worse. To the point of her body shaking and an 8 on a pain scale. NS was consulted and they are not too concerned. If it continues, then they will look into it more. 

Eating has continued to be a struggle. Stomach pain and nausea continues as well. It is better, but not gone. However pain the the neck is better. To the point that we spent about 30 minutes in the playroom at the hospital. She accomplished her goal of playing pool on the kids sized pool table in the playroom. The true turning point this morning was a FaceTime session with two good friends of G's. She was so close to being herself during the conversation, it was pretty amazing. She was very animated and talkative. 

 We hope with all the improvements today, we will be discharged to go home tomorrow. Fingers crossed!

Post Op Day 2

Today has been a bit more rocky. G slept well overnight, but is in more pain today. NS stopped in and commented on the fact that she looked too good yesterday and had expected a small slide backwards today.  We are trying to push food a little harder today, and G has been able to get down some melon and 4 teddy grahams. So far, so good. 

By far, the worst part of the day was when the bandage was taken off. Imagine a 4 inch piece of tape on top of a very sore incision and your hair along the midline of the back of your head. Now imagine yanking that off 2 days after surgery. YIPES! I knew it wasn't going to be pleasant and I was right. It took about 20 minutes to get the pain under control after that. The good part is, that we can see the incision and it looks great. No swelling, puffiness or drainage. 

Physical therapy came in today and was able to talk G into walking down the hallway and back. She was in tears by the end, but was proud of herself for accomplishing her goal. 

Pain meds were changed overnight and then again during the day given the nausea and vomiting. She seems to have moved past these symptoms for the most part but she has continued stomach pain. We hope the more she moves, the better this will become. As of this afternoon, her pain pump has been discontinued and is now taking oral meds. Hopefully she can continue the upward trend of eating.

We have had such an unexpected number of well wishes sent via text, call, FB, smoke signal etc. G is such a loved little girl. If you are a family/friend reading this, please know we appreciate all of your thoughts, prayers and love.

Regular room, here we come

G has officially graduated to a regular room on the neuro/trauma floor. I cannot express the sheer amazement I am in. Within 90 minutes of getting to the regular room, she had gone from sitting up in bed to walking to the bathroom and back.  Very wobbly and not without help, but still completed the task without so much as a complaint. (Thanks fentanyl) After walking to the bathroom, she was able to sit in a chair for 20 minutes and do a partial craft. All within 21 hours of surgery.  

When the occupational therapist was attempting to show her how to pull herself up to a sitting position, G shocked her by saying "Wait, can I show you how I do it?". And then proceeded to sit Indian style on her bed. Then gave the biggest "AHA gotcha" smile she has. 

We finally discovered the culprit of G's vomiting. Originally, we thought it was the fentanyl infusion, but discovered it has been the steroid given via IV. We are approaching the next dose of the steroid, and hopefully the anti nausea medication has been increased enough to help. 

Eating has been a challenge. We finally started her on a sprite and has been able to keep it down between steroid doses. The green Popsicle from this afternoon has also not made a reappearance.  Hopefully by tomorrow, we can start some solid food. 

What hasn't been a challenge is finding the talkative G. If she is not in pain or sleeping, she is talking the nurse/MA/therapist's arm off. Then a switch is flipped and she is asleep. I'm glad to see her able to rest comfortably. 

Here is hoping for a quiet night. 

Some symptoms...Gone!!!!!!!!

First thing is first.... When asked about her two constant symptoms this morning, (arm tingling and ear ringing) she pauses and with a big, drugged smile says "They are gone!" 

As parents, we are elated, but know not to get completely sold until a few weeks and months go by. It is possible for symptoms to return but for now, we will revel in their disappearance. 

Overnight went extremely well all things considering. G continued to vomit occasionally through the night. However, during one vomiting episode, she hit her arterial line located in her wrist against something. This pushed the line into a kink. Despite the nurses efforts to salvage the line, it ended up needing to be taken out.

During this scene, it was causing some severe pain locally at the site. Once the line was pulled, G was asleep within minutes.  I am fearful this will cause sone anxiety for future blood draw and IV needs. Only time will tell. The biggest draw back to losing the arterial line is the ability to pull blood from it. But, our wonderful overnight nurse attempted to pull blood from the IV and it worked! We hope there will not be a further need for blood draws while here. 

The NS team rounded this morning and they were absolutely amazed at her current state. She is able to sit up and help with her assessments. It seems unbelievable that she was exiting surgery only 12 hours ago.