THe days following surgery were not and are not always easy, but I hope by trying to type out the (sometimes fuzzy) details of the last week or so will help families and their little ones in the future. Our journey wasn't and isn't perfect, so this is by no means a guide book of what you should or shouldn't do. We're just one little family making our way through life together and sharing our experience.
Day 2
Our first full day at home was a good one. FL's pain was under control and she slept fairly well. She was running a small fever in the hospital, but that seems to have subsided. She was calm and willing to eat most anything that she was allowed to eat. Food is sticking to her mouth and to the surgical sites, but other cleft moms have assured me that this is normal. Some moms clean the palate off and some don't.
I was very thankful for putting a beach towel over her sheets and two pillowcases on her pillow. The amount of blood and discharge from her nose is unreal! The towel soaks it up well so that she isn't in a wet bed and I think we'll still be able to use the pillow when all of this is over. FL's breathing when asleep sounds really scary. She sounds like a big, old man with a cold the way she snores! Part of this is because she is still trying to breathe through her open palate that is no longer open. She wakes herself up often when her body is fighting the new way of getting air. Unfortunately, she's not getting good sleep because of this and because we wake her every four hours to give her medicine.
She's drooling heavily and as neat and clean as she is, she is letting it fall from her mouth when she's awake. Normally this would really bother her, but she's relearning how to swallow and I'm sure it is painful and swollen.
Her runny nose is bothering her when awake, but she hates to stop play and come to me from a nose wipe or pick up a wipe herself and do it. She is rubbing her bloody nose on her sleeve. To make her (and me!) feel better about that, I made "Magic Sleeves." I cut off the foot part of some old socks and left the ankle and cuff part. The cuff/ankle covers FL from the wrist to almost the elbow, giving her plenty of "wiping room." : ) This way I don't have to worry about stains and she doesn't have to stop playing and wipe her nose. C was a little envious, so I made her some, too. They'll be great for the next cold season!
You can see a little blood on FL's Magic Sleeves. Don't ask me what C was trying to do in the picture! I have no idea!
I'm still wearing dark clothing as well. This way I don't have to worry what she gets on me.
Day 3
Another pretty good day! We played outside and enjoyed catching up on our rest. FL is doing well, painwise and we are tearing up prunes very finely to help with constipation. The blood and drool are still coming steadily and heavily. Her breathing at night is still loud and seemingly labored. She is not sleeping on her back at all (this is how she falls asleep and usually stays asleep most of the night). I think it helps her to sleep on her tummy and let the fluids drain by force of gravity. When we wake her at night to give her pain meds she seems to be in a deep sleep. I HATE waking her!!! She gets a little upset and I know she's tired. Thankfully, she settles back down quickly and comfortably and doesn't wake C.
She still prefers me to do most of the care, and not her usual favorite, Sam. She is a little edgy (understandable) and does NOT want any affection from C (they hug and kiss all of the time) and is showing a little animosity towards her. C is confused and wants to comfort her and play with her. I mentioned to FL that C loved her VERY much and FL made a huge angry sweeping/knock your block off motion with her arm. She usually only does that when she is very mad at Sam or myself and in the middle of a temper tantrum. I know she's feeling badly and is trying to hold it in.
We had to stop all sippy cups and bottles today. I was sqeezing the bottle for FL, but it was just too hard for her to lay back and milk was going everywhere. Her normal sippy cup that she can just dump in water into her mouth easily is too much for her. We are giving her liquids by 10 cc syringe exclusively. I am thankful that I asked the nurses at the hospital for the syringes and managed to keep one or two that we used for medicine! The prunes, however finely shredded, where a bad idea. we think a tiny bit made its way through the break in the gumline and into her nose. I'm so sorry Flora Lin! : ( She's still on ibuprofen every four hours (per discharge instructions) and I know that's hard on her little tummy, so that's why we were giving her the prunes (she also had trouble in the hospital with constipation that required intervention, if you know what I mean...). No more prunes. She's also showing more sensitivity to foods, so we are sticking with yogurt and the wonderful purees that our friends made for us (thank you!). If you have a child preparing for this surgery, MAKE FOOD FOR THEM AND YOURSELF AHEAD OF TIME or have someone do it for you. Our goal is to give her filling, fatty foods, some with high nutrition and high in protein that she will be willing to eat. We don't want her to lose weight or let the progress we've made in better health backslide. She's taking a liquid immunity supplement instead of her chewable multivitamin and omega 3s. It's not the best choice, but an easy one to carry out.
Day 4
Flora Lin is DONE. She is done with her mouth feeling different. She is done with not being able to sleep well. She is done with feeling pain. She is done being patient. She is done with her tummy hurting. She is done with having to think of how to breathe. She is done being handfed every. little. thing. SHE IS DONE. And she let us know that today with her emotions. I know that feeling and I hate it for her. We are being patient with her and trying to help C be patient with her. C is done with FL getting special food and special treatment and having to share/give up her time with her mama. It is hard to balance both of their needs, but I have to lean towards what FL needs most at this time. It hurts C's feelings so badly and that makes it even harder.
FL got an early nap today, but not by choice! She was outside playing with C and I. She kept saying she was done and wanted to go inside and help Papa with lunch. As soon as we got close to the door she would sign "play" and "more." When we went to do that, she would change her mind again! I finally just gave her to Sam and she screamed with him on the couch for two minutes and promptly fell asleep. Morning snack was the first time she has ever pushed away food, so we decided for just this once, sleep was more important than waking her to eat when she hurts. Poor girl.
Day 5
Sam is back at work and I have decided it is best just to jump back into our routine and give FL the structure that makes her feel safe. It was a pretty good day, except FL had a morning meltdown at snack time again. I decided a short morning nap would be best for everyone, as I know she's not sleeping. We got her up for lunch and then back down for a normal naptime at 1. We didn't get much done today, as I am feeling a little run down, but we all just needed rest and routine. Did I mention there's a time change, too?!
The bloody discharge has FINALLY stopped. Her nose is still runny and there is some drool, but it is so much better. I washed her bedding today and it was amazing the amount of "stuff" that was on it. I strongly encourage you to put anything away that you don't want stained (though it all came out fine in the wash) and put down something soft and absorbent for your child to sleep on. I'm still wearing dark clothes with no zippers and no necklaces so that FL can comfortably sleep and drool on me. : )
And there are tissues and nose rags in every area of my house and in every pocket available! : )
A fellow cleft mom suggested "boogie wipes" to me and they have been the most effective in wiping painlessly and keeping FL clean. Baby washcloths would be a runner up with the thick towelettes the hospital gave us at a distant third. There are many other random napkins and rags that we use and if is the closest, cleanest thing available, we use it!!! : )
Day 6
Very little discharge from the nose (none of it bloody) and her breathing at night has really improved. She still snores, but I can't hear it unless I am in her room or in the hallway. Before, I could hear it across the house in my bedroom!
Again, I am thankful for the meals prepared and the special food that were pureed and put together in small containers for my daughter. I'm not sure I would be getting much of anything done if I was having to specially make food and come up with new recipies everyday!!!
A small morning nap was called for again, today. FL is just so tired with all of the broken sleep she has been getting, she's not well rested.
Day 7
I panicked! FL was really seeming painful at morning snack, so I decided to take a good look in her mouth. I had mashed and added water to a banana to make it very soft, so I was surprised by her reaction. I noticed a lot of the banana stuck to the place where the packing in her mouth was, so I squirted a little water on it with the syringe. There was nothing there but a long hole! If you know anything about palate surgery, hole and fistula are two words that you NEVER want to associate with your child's surgery! I called friends, posted on line and called the surgeon's office. The nurse assured me that it was ok, but the new tissue started to grow from the area that they took from to make the palate. The new tissue growth causes the packing to fall out. I had NO IDEA they took that much tissue from the two sides of her mouth to make a new palate. I remembered other parents talking about the space that was left once the packing came out, but I was really unprepared for what I saw. Apparently, it's normal! This day also began "The Change" that everyone talks about in recovery time from this surgery. FL truthfully had done very well, and her upsets and pain had been quite manageable, but a different child came out this day. She was fussy, touchy and just not happy. They think this is from regrowth of the nerves (can you imagine the pain?! my mouth hurts after eating chips!) in the place where the tissue was removed. Poor girl. So FL had had enough. C was emotionally upset from my panic, afraid FL was going to have to go back to the hospital (she is such a sensitive child!)) and having a breakdown. I was tired and just tired. So Sam came home to three girls that had each had enough!
Day 8
Still fussy, no discharge. FL became increasingly upset and not finishing her meals/snacks (so not like her!). Sam came home a little early from work. At afternoon snack, FL couldn't handle applesauce and was covering her face with her hands and asking for hugs. She hurt. I looked into her mouth to see if I could notice anything wrong, not that I would know what wrong or right would look like! I saw a long string hanging down. It was part of the stiches in the donor area of her mouth! I called a friend in desperation and she told me this was normal and I could cut the string. FL was pulling on the string as she was chewing and tugging on her mouth with each movement of her tongue! Poor girl! It was over an inch and a half long! She still chose not to finish her snack (I couldn't blame her), but ate well at dinner time.
Day 9
FL is still in a more fussy/difficult stage (again, understandable), so Sam stayed home today as he was feeling a little under the weather and also wanted to be able to assist me here and there. I can tell when FL's pain medicine starts to wain. She gets fussy and wants to be held during activities that she would normally enjoy. She was in a lot of pain at breakfast, so we examined her mouth again and saw more of the same string hanging down! She's been great at letting me cut it (we reassure her that it won't hurt) and I know it must be a little scary to have a pair of scissors in your mouth!
She's still snoring and having broken sleep. The discharge is all but gone, but she is having a little bit of food come out of her nose here and there. Not much, though.
Day 10
FL is still so tired in the mornings. She easily loses interest in eating and is having a hard time finishing her morning snack, eventhough it is puréed. She usually melts down at the end of morning snack, so she gets a morning nap. Pain seems to be a little bit more under control today. I'm thankful for that. I'm hoping we're on the upswing!
Day 11
Today was a better day. I can still tell when her ibuprofen is starting to wear off, and we had a BIG evening meltdown , but other than that, we're good!
Day 12
Today went so well that I am thinking of tapering her meds. We'll stick with it a little longer because we have a happy, silly girl that's gobbling down her food again! : ) The snoring has stopped! I know C is happy, as they share a room! ; )
The Smell
People often talk about the smell that comes from their child's mouth after a palate repair... and everything they say is true! The smells change and sometimes it would fill up the whole room!
for us, the smells are as follows:
Day 1 - dirty socks (I can handle this!)
Day 2 - dirty socks dipped in vinegar (still handling this!)
Day 3 - dirty socks dipped in vinegar and rubbed with dead fish (ok... I'm ok.)
Day 4 - a cow pattie in the southern humidity in the middle of August (ugh... but I think I'm ok... maybe)
Day 5 - One thousand fresh cow patties in the southern heat and humidity of August (gag!)
Day 6 - No words! (someone once described it as death warmed in a microwave...)
Day 7 - Mothballs in granny's closet. Wet, moldy mothballs (packing fell out causing a smell change - I can take mothballs over cow patties, though)
Day 8 - Mothballs in granny's closet with a dead rat (just breathe! Or not!)
Day 9 - Sam's home! Love on your daughter please!
Day 10 - Mothballs and poop ( ok, maybe this is improvement...)
Day 11 - Poop
Day 12 - I'm either getting used to it, or it's getting less and less noticeable! Yay!
Things I'm Glad I Did Post Op
- Put a thick towel and extra pillowcase on FL's crib and change out the blankets
- Wore dark, comfortable clothing the first few days home
- Had NOTHING planned the first few days and week home
- Had my husband with us Wednesday through Sunday. We all needed to be together!
- Had meals prepared by friends and family when we arrived home and throughout the week
- Had friends and family willing to go pick up groceries and extra medicine
- Had someone in place to feed the animals the first day home
- Took time to rest the first few days home
- Had new, quiet activities that would hold the girls' interests (thanks to C's birthday!). We all needed a break.
- Had a "Been There, Done That" mom to reach out to!
Things I Wish I'd Done Post Op
- Have my pantry stocked before I left for surgery
- Have the house clean before I left for surgery
- Have rested up well before surgery
- Have post op questions written down and answered before surgery (what to expect after, what problems to look for, when to expect stiches to dissolve and packing to come out, etc.).
- Have plenty of extra bottles of Tylenol and Ibuprofen on hand.
- Have a puréed form of prunes, etc. on hand for those types of situations.
Random Notes
- We were only told to give ibuprofen after surgery every four hours for four days, then cut back
- When I called about the possible fistula on day 7, the nurse I spoke with contradicted our discharge instructions and told us to give medicine every 3 hours, alternating Tylenol and Ibuprofen. I don't think Tylenol helps much with FLs pain.
- We were not offered "no nos" for FL's arms. I have no idea why, but we also haven't really needed them.
- FL sleeps with socks on her hands at night for different reasons, but this gave me peace about not having "no nos." She can't stick her fingers in her mouth while she's asleep with socks on. Something to think about as I caught her putting her fingers in her mouth once or twice over the past few days.
- Take time to take care of yourself and set up some margin in your days. Even when things go as well as ours did it is still tiring. Especially when you are getting up twice each night to administer medicine!
This is really all I can think of for now. Hope it helps!
