When I started this blog 18 1/2 years ago, the primary reason was to have a central place that could keep friends and family updated on Rachel and how she was doing, surgery dates, recovery, etc.
Because I had found helpful information and encouragement in a blog whereas the little girl was older and ahead of Rachel in her treatments and surgeries, I wanted Rachel's Journey to not only keep our family and friends informed as to Rachel's progress, but I wanted it to be a source of information and encouragement for others who were also on this journey of having a cleft affected child.
Since keeping this blog, we have made many "cleft friends" via Rachel's Journey. While we've never met in real life, our hearts are all tied together having had a child born with some sort of a cleft and all that entails.
I know many of my posts through the years have been helpful in sharing what to expect, some tips we found helpful for Rachel, as well as offering some hope and encouragement, I wanted nothing different when it came to sharing about this surgery, Rachel's biggest surgery in her journey.
Therefore I have constructed the following information and things we found helpful through this recent surgery.
Every child is different.
Every Surgeon is different in how they do things.
Every outcome is different.
The following information and tips are things that pertain to Rachel and her surgery and what worked for her recovery. Hoping that once again, some of this information is helpful to our cleft friends.
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Length of Surgery
The length of surgery will depend on if the upper jaw and the lower jaw are being repositioned.
Rachel had only the top jaw repositioned. We were originally told surgery could last 4-5 hours, however surgery lasted just shy of 3 hours.
Hospital Admission
Rachel's surgery was the first one of the day for our plastic surgeon. She spent a quite a few hours in recovery while waiting for her to come out of anesthesia and then waiting for a hospital bed to open up. It was early evening by the time she actually got to a room. She ended up spending two nights in the hospital.
Being discharged home all was dependent on:
1) Her ability to take in liquids. They want to make sure dehydration wouldn't become an issue and land you back in the ER.
2) Her ability to take oral pain meds. I don't think Rachel received any IV pain meds after the first night. She was on liquid Oxycodone and Tylenol.
3) Her ability to be up and walking and moving about. The morning after surgery, Rachel was in her own comfy clothes, and was up and about. Going to the restroom herself, walking the halls, and drinking, drinking, drinking.
They kept her a second night to watch for any signs of respiratory distress that could surface due to all the swelling. Respiratory distress was not an issue for Rachel.
Dietary Restrictions
At Rachel’s Pre-Op, we were told she would be on liquids only for 2 weeks, but she was actually placed on a “soft mechanical diet.” Meaning anything soft that requires NO chewing.
Protein is a huge aid in healing, so we really pushed (and still are at 3 weeks post op) the protein. Drinking at least 3 protein shakes a day, applesauce, pudding, mashed potatoes, refried beans, greek yogurt, juices, milk shakes, frappacinos (double blended worked out great). One day I even cooked up glazes carrots in the instant pot really soft and kinda mushed them, she was in heaven with something different.
Rachel had done some research ahead of surgery and one of the things another cleftie recommended was to have baby spoons. We bought some and they have been most helpful!! They are small, and soft and have worked out great!
Buy the multiple pack as you’ll be using them a lot! And be sure to pack one in your hospital bag in the event your child is put on a soft food diet following surgery.
Rachel was not allowed straws or any drinking that required slurping. She used spoons for milk shakes and frappacinos. She used a paper cup and drank her water from that.
Talking/ Communicating
Prior to surgery, we bought a white board from The Dollar Tree. Rachel packed it in her hospital bag if she needed to write on it to communicate with the nurses in the event we were not there.
Because of the internal swelling, pain, and splint, her speech was hard to understand, especially the first few days. Quite a few times we had her text out what she was saying/needed those first few days.
She became easier to understand as the days went by and she’s able to open her mouth more. She's been a lot easier to understand since the splint came out.
Pain Management
Rachel received Oxycodone and Tylenol while in the hospital. She was discharged with those meds as well.
On Day 3 Post Op, we were told Advil was acceptable for stacking with Tylenol as they would not refill the Oxycodone.
The white board we bought for taking to the hospital, we used for keeping track of her meds once home. I set up this little spot on our kitchen counter with everything we needed.
We were stacking meds. First few days it was the Oxycodone and Tylenol and then it was Advil and Tylenol. We were evenly spacing apart the two pain relievers so she constantly had some sort of pain relief in her system. We kept track of “Last Dose” and “Next Dose” which made it easier to keep things straight. It also allowed her Rachel to know when she could have something in the event she was up at night and didn’t feel the need to wake one of us.
Rachel also had an antibacterial mouth she uses twice a day. The first couple of days home, she was also on Colace, as pain meds and anesthesia can make you consitipated.
Swelling/Bruising
Rachel’s swelling was probably the worst around Day 4-5. And the only bruising she really had was on Day 3 just under her eyes, but it went away over night.
At our 1 week Post Op appointment, even our plastic surgeon was not impressed with her swelling. Apparently it can be pretty bad!
We were not given any discharge instructions to put on ice packs. I did do it one day, and Rachel actually said she felt like it made the pain worse.
The first 72 hours, they want you sleeping upright, which is easy in a hospital bed. Once home, they suggested the head staying at a 45 degree angle propped up on pillows.
Our plastic surgeon said the more upright and walking about you can do following surgery, the better it is for keeping the swelling down.
One week post op and our plastic surgeon said she can’t undo thing is she chooses to sleep flat in bed, but she could wake up a little swollen. So it all depends on if you want to be totally comfortable and are okay with some increased swelling, etc.
We moved a recliner into Rachel’s room and she slept every night in the recliner for the first 3 weeks.
Breathing
Because there is so much swelling, it is possible to have some difficulty breathing, especially out the nose following surgery. The nasal passage will also be irritated and swollen as they will do a nasal intubation during surgery for an airway. Be prepared for bloody noses and a lot of dried blood following surgery.
In Rachel’s research, she also read it was good to have some Breath Right Strips on hand to put on the bridge of the nose in the event of a lot of swelling and congestion. Rachel didn’t end up using these.
Following surgery, one of the things prescribed was a saline mist nasal spray. It was given to her every 2 hours in the hospital. Sometimes they’d forget to give it to her, so she would ask. She also came home on this and it helped tremendously the first week!!
Rachel also had read that having a humidifier going in the room helps with easier breathing and making the nose moist. We bought a new filter and pulled out that humidifier from the toddler days (yes! I still had it!…LOL). Rachel said the humidifier helped a ton that first week!
Physical/Activity Restrictions
Only restriction Rachel was given was to not bend over to avoid pressure in her head. This was just the first few days.
Mouth Splint
Rachel came out of surgery with a splint attached to her upper braces. Everyday, throughout the day, she had to practice putting her teeth into that splint. The splint affected her speech quite a bit. And made it hard what she was saying at times.
Rachel had her splint in for 3 weeks. Dr. Martin said it's normal to be in for 3-4 weeks.
Misc Other Tips and Advice
* Rachel was given an ointment to put on her lips a couple times a day. Her lips looked pretty bad from all the swelling and stretching of the lips. We also bought a package of Aquaphor Lip Repair Sticks. She applies it constantly to her lips.
* Buy a baby tooth brush. They will tell you oral hygiene is still very important. The oral mouth wash will help some. But a baby tooth brush has a much tinier head and can brush some of the teeth a lot easier than a normal size tooth brush.
* One of the other things Rachel learned in her research was having squeezable condiment bottles on hand. This was going to be more helpful when we thought 1) she’d only be on liquids and 2) her mouth would be banded tighter, making it harder to open her mouth. We have only used one once so far and that was to fill with warm water and Rachel kinda just rinsed her mouth out.
* This time around, Rachel had terrible time with the anesthesia making her nauseous, which resulting in throwing up a few times. Rachel was given Zophran and Compazine. One of the recovery room nurses gave us some alcohol wipes to open and wave just under her nose. It's suppose to help ease nauseousness. The other thing that also helps is peppermint. So if you have any peppermint essential oils, remember to bring that in your hospital bag, just in case.
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These were the things that I felt were the most important to share and give advice and tips for.
However, if you are reading this post, and you have questions, perhaps something I might not have covered, please leave a comment on this post, or even sign Rachel's Guestbook, leaving your email, and I will email back!
I would love to answer any questions and offer and support and encouragement to help ease any fears you might have if your child is on the brink of having this surgery!
