Monday, November 29, 2010

Post Op Appointment - 12 Days Post Op

It's been 12 days since Rachel's surgery and today was our second post op appointment.

Our appointment was at 3:00 and we went anticipating a long way as usual. We even had visitors waiting in the waiting room for us - Joy, Aiden, and Lexi! It was great to see them, but our time together was short. We didn't even get a picture for our blogs! We waited 15 minutes in the waiting room and were called back to a room.

Here is one last picture with her nasal stents in. This picture really shows how skinny her face has become. I weighed her while in the office and she's lost 1 1/2 pounds since surgery. That's a lot of on a little body.Dr. Martin was very pleased with how things were healing up on the inside as well as the outside. So much so, that he took the stents out!!! Rachel started crying when he clipped some of the stitches. But she was relieved to have the stents out. We need to continue on a soft food/soft chewing diet, nothing crunchy, until we see him again in two weeks. Dr. Martin reminded us that her nose could swell up a little bit but it'd come back down. Her nostrils have also been stretched because of the stents, but in time they should lessen in size as well.

So our appointment went well, it was record time - in and out in forty minutes! And we return to be seen on December 13th, when perhaps her diet restrictions may be lifted, just in time for Christmas cookies!!!

Saturday, November 27, 2010

10 Days Post Op

Not much is happening in way of Rachel's post op recovery. With the exception of the nasal stents and the modified soft diet, she is totally back to herself!!!

It's been four days since she's had anything for pain.

She's feeding herself now, we were pretty cautious the first week of that bone graft and didn't want her to bump it, etc, so we were feeding her, when she actually ate.

The swelling in her face is completely gone as far as we can tell.

The girls school resumes on Monday after two and a half weeks off track and Rachel can wait to get back to school. She's not bothered by the nasal stents and has no problem going out in public with them in. She has a post op appointment on Monday afternoon, so perhaps she'll only have to go to school one day with them in.

Wednesday, November 24, 2010

1 Week Post Op

It's hard to believe that a week ago, we were sitting in the waiting room of a hospital, waiting for the page that one of us could go see Rachel in the recovery room.

Overall, the first week following surgery has been a good one. There's been a few meltdowns as to not wanting to eat and thus take the nasty tasting pain medication, but other than that, there's been no complications, no major problems. I know recovery has been relatively easy because of all the people still praying for Rachel. Thank You.

I failed to mention in my post following our Post Appointment that we can brush Rachel's bottom teeth and upper back ones. We did just that yesterday. It had to have felt a ton better having a fresh mouth.

This morning, the swelling looks considerably lower. And the bruising seems to be subsiding as well. It's great to see the sparkle back in her eyes and her overall look getting back to normal.

Be sure to scroll down to the next post. I posted pictures, one from everyday of the last week. It's amazing to see the changes from day to day.

The Last Week - In Pictures

Before Surgery
In the Recovery Room
Day After Surgery
2 Days Post Op
3 Days Post Op
4 Days Post Op
5 Days Post Op
6 Days Post Op
1 Week Post Op - Wednesday, 11-23-10

Monday, November 22, 2010

A Divine Appointment

I've mentioned twice before about "Divine Appointments". The first one was years ago when we met a couple at Lowe's who had a son with a cleft lip and palate. I refer to that as our Divine Appointment at Lowe's. And then there was a shift that I was working a few months back whereas I worked with a nurse that had had a cleft lip and palate and numerous surgeries. I refer to that as my "Divine Work Day". Today, while my Mom and I waited in the waiting room for Rachel's Post Op appointment, I had another Divine Appointment.

My Mom and I were sitting, waiting for Rachel's name to be called. Mom was knitting, Rachel was playing on Gramma's iPod Touch. And I noticed a young mom, who was also accompanied by her Mom, sit down across the room with a baby. I whispered to my Mom that the baby appeared to have a cleft. I could tell from across the room that her lip was taped and might have even had a NAM device in her mouth.

It was hard not to stare. Not because the baby had a cleft lip, but because me and that Mama, we shared something. We were walking the same journey of having had a baby born with a cleft.

My Mom encouraged me to go and talk to her. I couldn't at that point. All the emotions of last weeks surgery was too fresh. The emotions of knowing this was a Divine Appointment was almost too much to handle.

Shortly thereafter, some seats opened up right across from us. I watched the Mom holding her precious cargo motion to her Mom that they should move seats. I whispered to my Mom that it looked like they were moving over, and she referred to it as a "Divine Set Up." The Lord was going to open up the doors to talk this Mama after all.

And that's what happened. We made eye contact and started talking. Turns out, she had recognized me and Rachel from having visited this blog!

Her baby girl is six months old and has a bilateral cleft lip, and Is currently driving over 75 miles one way every week to the dental school to have her NAM adjusted. She was seeing Dr. Martin today in hopes of getting surgery scheduled for her lip repair. She's been told Dr. Martin's surgery schedule it full until March.

The other thing I shared with this Mama - she and her husband did not learn of their baby's cleft until her OB was performing a C-Section! None of her ultrasounds done through her pregnancy ever focused on the baby's face, only her major organs and measurements. Her story was like ours.

It's always nice to meet other Mom's traveling the same journey. Makes our little 'cleft world' seem a lot smaller than it is. And I'm always thankful for the divine appointments the Lord sends my way.

It's always been my goal in keeping this blog to offer hope to parents just starting out on their journey, to help give information from a family that's already walked the stretch of journey they are currently walking. And today, with meeting Melissa and Aubrianna, it gave me great pleasure to know my blog had done just that once again...

Post Op Appointment

This morning, Rachel had her first post op appointment.

Our appointment was at 10:45 and we were in a room by 11:25 (not bad!!!). We ended up arriving a half hour early because we thought parking was going to be more of an issue. But it turns out the Lord had another Divine Appointment for us and I'll share that in another blog post.

It's a beautiful day and I thought this made for a cool picture. The building is Loma Linda University Medical Center and Children's Hospital, which is where Rachel's surgery was done.Dr. Martin was very pleased with how Rachel was looking on the outside as well as on the inside (her bone graft).

Rachel had a tooth that had grown in sideways in the cleft of her gum and I asked if he had to remove that. He did not. But what he did remove as a decayed and rotten tooth that had grown up into her nasal cavity (common in cleft children). He said this was the cause for the horrible smell we'd been noticing coming from her nose the last six to eight months, which was one of our concerns when we saw him in August.

The nasal stents need to stay in place for at least another week. Dr. Martin explained that there was a lot of scar tissue in her nose and scar tissue has the tendency to go back to how it was. Typically, stents stay in place for 1-3 weeks to keep the scar tissue from going back to how it was prior to surgery. So she has the nasal stents at least for another week. He also said it could take up to six months for her nose to become her 'new normal' look. Her diet has been changed from a no chew diet to a soft food/no chew diet for example scrambled eggs, mac and cheese, etc. When I told him I considered those things to be a chewy food, he said she could have soft foods that didn't require chewing in the front, because of her bone graft.

After a few pictures were taken for her chart, and an appointment made for next Monday we were done. We went to Baker's for lunch where Rachel feasted on broken/bite sized pieces of french fries, a chocolate milkshake, and some bites of a bean cup!! She was loving it!

Sunday, November 21, 2010

Post Op Day 4 - Rachel's BACK!

Rachel is back! And back full force! LOL.

Last night we gave her pain meds at 8:30 and then decided to see how she did through the night. She slept the night through and did not take any more pain meds until 7:30 this morning. She was going to be spending the morning with my Mom while I went to church, so I gave Rachel some pain meds just in case. I've decided to start weaning her off the strong pain meds and will give her regular Tylenol this afternoon if she says something hurts.

Today, the bruising in Rachel's face really surfaced. It started to surface a little bit last night when I was cleaning up Rachel's nose. I thought it was Bentadine left from the surgery. When it wouldn't wash off, I knew it wasn't Bentadine. LOL. Rachel did a great job at eating for my Mom this morning. They made chocolate pudding with whip cream and she ate that. Gramma made her some mashed potatoes and she ate those. And she took a few glasses of White Grape Juice. Ahhh, the magic of Gramma!

I ran to the store for a few things and came back with whip cream since she liked it at Gramma's. Who needs chocolate pudding or pumpkin pie when you can make whip cream snakes!Tomorrow we have a post op appointment with Rachel's plastic surgeon. It'll be good to see him and have her check out Rachel and hear again how the surgery went, etc.

Saturday, November 20, 2010

Post Op - Day 3

We are now three days Post Op and Rachel just keeps getting better and better as the hours pass. We once again set the alarm for a middle of the night pain med. After a cup of applesauce and Tylenol taken, we were all back in our cozy beds within ten minutes, where we slept until after 7:00, when Rachel came in to snuggle with us.

We were able to stretch the next dose of pain medication to six hours. She wasn't saying she was in pain, but again, we're trying to stay atop of the pain cycle for a couple of days. Just the fact that she went that long without getting grumpy was awesome. Yesterday she would start melting and become grumpy about 5 - 5 1/2 hours. This was a great accomplishment.

This morning, for the last several hours, she's been on the floor playing with Lego's, putting together a new set. She's talking more and even trying to smile the best she can. I noticed she has a little bit of her sassiness back here and there. Post Op instructions were "No Baths" but showers were okay, this is because of the incision above her hip bone. With some hesitation on her part, we proceeded with a modified bath whereas I only filled the tub about 3 inches. She admitted it did feel better to get a little bath. Now we just have to convince her to let one of us wash her face.

This is the incision from where the bone graft was harvested from her hip bone. When she came out of surgery, there were no bandages, no stitches. They closed her up using a superglue-like substance. The swelling around the area continues to go down with each passing day. There's really no evidence of it slowing her down, or being a hindrance to her. You do have to be careful with side hugs and squeezes, as she sometimes grimaces if you squeeze too hard. Rachel received a package in the mail this morning and inside was this cuddly bear. I convinced her to let me take a picture of her with her bear in hopes of getting another shot of her face. It worked. The swelling is really down from yesterday.This morning Hannah told me what Rachel had told her. Rachel told her that she didn't like looking at herself in the mirror because she was ugly. That broke my heart. It's hard for her to comprehend that in a few days, everything will be back to normal and she'll look like the usual cute Rachel. We've spent the last six years telling her how cute she is and building up her self esteem. It's sad to know she thinking this way. Last night, she mentioned wanting to go to church on Sunday, but after hearing what she thinks of herself, and how self conscious she is right now, I think it'll be better to not take her to church. There'll be kids that ask her what's wrong with her face, or what are the things in her nose. Forget the kids, there will be adults that will stare and make a big deal of her face. Better for them to do that next week when she's feeling better about herself.

Things are going great and we only anticipate it to continue to go well! Thank You again for praying for Rachel.

Friday, November 19, 2010

Mug Shot

Rachel's taken a great turn in the last hour. She's asked to get dressed, is being silly in a non talkative way, and has been trying to tickle me. LOL. It's soooo good to see her taking this turn.

There's a lot of swelling up around her left eye. But it's much better now than it was earlier today. Her mouth is still too sore for a smile, so this mug shot picture will have to do!

Thank You

Over the last few days there have been countless numbers of people coming to Rachel's Journey to check up on her progress, sometimes several times a day.

Some of you are family, some our friends, some are complete strangers who've never even met us, but continue to check in on Rachel.

Thank You. Thank You for all your thoughts and prayers said on behalf of Rachel, for our family.

Thank You for the kind emails, Facebook comments, guestbook comments, and texts.

We are truly honored and blessed to have had Rachel touch so many lives.

Friday Morning Update

We had a good night.

Rachel was so cute last night, I was in our room putting some things away and she wandered into our room, crawled up into our bed, and snuggled beneath the covers. We watched TV in our bed for a while and just let her sleep with us for a while. We set the alarm for 1:00 which was when she could have her next dose of pain medication.

Around 11:00, she was moaning and tossing about a lot. When the alarm went off at 1:00 we got up. It was a bit of a struggle to get her to eat, but she gave up and sat smack dab in the middle of the kitchen floor and that is where Steven fed her some applesauce and we gave her some medicine. From that point, she went into her own bed and we all slept until close to 6:30am.

She did well at eating something this morning and taking more pain meds. We are trying to break her pain cycle and stay on top of giving her pain meds every 4-6 hours. Especially since her pain was so uncontrolled the first night.

The swelling around her hip incision is going down quite nicely. But her face continues to swell. Just below her right eye is so swollen it's almost shut. Her little face has gone through so much, it's no wonder it's as swollen as it is.

As for her nasal stents, she's stopped complaining about them!!! I know it's a result of all the prayers specifically for that. Thank You!

Thursday, November 18, 2010

Home Sweet Home

After a trip to Golden Spoon for some yogurt to bring home, and a stop at the pharmacy for Rachel's pain meds, and a stop off at Gramma and Papa's house, we are home!

Rachel has eaten a rather good size bowl of graham crackers and milk and has drank a good amount of water. She is now comfortably sitting in the recliner watching a new movie that Gramma and Papa bought her. Here's hoping and praying for a good night's sleep for all of us!

Going Home!!!!

Rachel was pretty much over having her picture taken by this point, thus the reason she's hiding behind her bear. But it was so nice to be going home! I can't imagine the families who spent countless days, weeks, and some even months in the hospital.

The Afternoon Update / Good News

After our visit to the classroom downstairs, the afternoon continued to go well. She drank a little bit more and felt well enough to be wheeled downstairs to an event going on for the children. They had policemen and firemen and crafts to do. It was a nice diversion to sitting in her room and despite not feeling 100%, I think she enjoyed the difference in scenery. Especially when Gramma and Hannah came by for a visit. This was the first that Hannah had seen Rachel in person and I think it did them both good. After our outside diversion and visit from Gramma and Hannah, it was time for some more juice and pain meds. It was a bit of a struggle as Rachel does not like the taste of the medicine, but we eventually got it down her. But only after being told I was "the meanest mom in the world". She fell asleep shortly after that.Rachel was napping and Steven and I were each on our own electronic entertainment of our choice and we'd pretty much resigned ourselves to staying late into the evening, if not overnight once more. It was just after 4:30 that the Chief Resident who assisted Dr. Martin in surgery came by. He said since she was drinking more and eating some, we were welcome to go home if we wanted. Um YEAH! As long as we were sent home with Tylenol with Codeine. The orders were written and Steven started taking things to the car. It wasn't long after that that I signed discharge papers and the nurse removed the heplock. And we were outta there!!!

A Turn for the Better

It's amazing what the proper dosage of pain meds will do for a person.

After getting Rachel to take the correct dosage of pain med, she fell asleep for about an hour.

After her nap, she was visited by a hospital person who invited her to the school room downstairs. Having had the pain meds kick in, she wanted to give it a try. So we put on her jammie pants, combed her hair, and dawned her boogie shoes (new crocs that Gramma and Rachel have named her 'boogie shoes'). Daddy found a wheelchair and off we went, downstairs to the school room where Rachel made a Thanksgiving card craft and then worked a puzzle. We saw sparks of our Rachel coming through. The pain meds definitely worked. Upon coming back to her room, she ate an entire applesauce cup and the rest of her pudding cup that she'd started earlier!! She's not due for any more pain meds until 3:30. So hopefully she'll continue to be on the up swing and will continue to eat and drink as the afternoon continues.

Morning Update

The residents came in earlier this morning. We need Rachel to be drinking more and eating before we can go home today.

Since they left, and the change in nursing shifts has occurred, we discovered Rachel had been under medicated in her pain meds all night long.

To give an idea as to how under medicated she was, she was getting 2 ml when she should have been getting 10 ml.

And then to top it off, to avoid the nasty tasting medicine, she wasn't being truthful when asked about her pain. Grrr.

The meeds have been adjusted and she received a dose about half an hour ago and she is now sleeping. Our hope is that once the pain is under control, she'll feel more like eating and drinking!!

Our Night

Our night is winding down and soon the unit will be filled with the hustle and bustle of the changing of the nursing shift and doctors coming in to make rounds, etc.

Rachel's night over all went well.

She woke up shortly after Daddy, crying and asking for him to come back, she wanted both of us here and she didn't understand why we both couldn't stay. She eventually calmed down and went back to sleep for a while.

She was up around midnight with a trip to the bathroom, a dose of Tylenol, and the nurse attempting to clean around her nose. The nasal stents are a complete bothersome to Rachel and it's hard to tell if her pain is as bad as it really is, or it's the extreme discomfort of the stents in her nose. Trying anything to soothe her, I suggested a walk around the unit. A few steps out her door, she said it hurt too much to walk and requested a wheelchair. So the nurse found one. But pushing the wheelchair and an IV pole was too much of a challenge so we called it quits and went back to bed. She calmed down and drifted to sleep.Around 4:00, I heard Rachel whimpering in her sleep and I went to get the nurse. It was time for another dose of Tylenol with Coedine. After a trip to the bathroom and an attempt at cleaning up her nose, she was comfortable sitting up for a while. So at 4:30 this morning, she sat cross legged on her bed, sorting through the Silly Bandz that Uncle Robbie and Auntie brought her and the gift bag of things our friends brought to her last night and even colored for a while.We snuggled for a while in her bed for a while and fell asleep shortly thereafter. Her IV alarm went off a while ago, and I had to go get the nurse, so I decided to just stay up.

The nasal stents are a huge bothersome to her. She detests them and wants them out NOW! Unfortunately they have to stay put for a week. She's peeing, taking water, and has walked. But she hasn't had any juice or soft foods. So before we get the word of getting to go home today, she has to do those.

Please be praying for the stents to not be so bothersome and that she decides to drink and eat.

Wednesday, November 17, 2010

In A Room...Finally

After nearly four hours in recovery, waiting for a bed on one of the units, Rachel was finally moved to a room just before 7:00 this evening. She's in a regular bed, and has already been up and walking to the restroom.

Once settled, Uncle Robbie and Auntie were able to come up and say "Hi". Gramma and Papa were the next to come up and visit. They had a present for Rachel, a Pediatrician Barbie Doll. Unfortunately, Hannah is too young to come up on the patient floor, but thanks to modern technology, she was able to video chat with Rachel with the help of our laptop and Gramma's iPod Touch!! Rachel also got to see her cousins that way as well. A friend of the family is a Pediatric nurse here at Loma Linda and she was a huge help this evening in many ways. Rachel had been frustrated that she had to stay in her hospital gown and not change into her new jammies that friends had brought her last night. Wanda stopped her IV, took off the pulse ox, and got her changed into her jammie top and underwear. That made Rachel happy.Wanda also made Steven and I dinner - chicken noodle soup! She made it from scratch and brought it work and warmed it up for us and served it to us in Rachel's room. We were both pretty starving by then and the soup tasted so good! She also made us homemade brownies. It was so appreciated and tasted better than any fast food that we'd have gotten.

After a visit to the restroom and some pain meds, Rachel has fallen back asleep and appears to maybe be out for the night.
The stents in Rachel's nose must stay in for the next week. She hates them and continually is asking to have them out. Right now, in addition to her sore hip (from where they took the tissue for her gum), the nasal stents appear to be the main source of discomfort for her.

In Recovery

Shortly after 1:30 we got the page that surgery was winding down and Rachel was continuing to do well. It was minutes later that we got the page to have the surgery hostess call the surgical unit.

Surgery was done (lasting a little over 2 1/2 hours).

Steven talked to Dr. Martin, Rachel's plastic surgeon, and all went well with surgery.

They took tissue from her left hip and the grafting went well. Once in there, he discovered a hole in her hard palate right behind her aveolar ridge (the gum) and he fixed that. The nose revision also went well. They said it would be another hour or so before we could see her in recovery.

When the call came that one of us could go to recovery, I went.She's doing good. Wasn't complaining of any pain. Was taking water. Talking a little. The recovery nurse pulled a DVD player over and she had a movie she was watching bedside.

After a while, she asked for her Daddy, so we paged him and him and I switched. I am now in the lobby with our family, and Steven is with Rachel in recovery, we are waiting for a bed to open up on a unit and then she'll be moved to a room where then Gramma and Papa and Uncle Robbie and Auntie will be able to go and see her.

Before Surgery

Our arrival time to the hospital was 9:45 with a scheduled surgery start time of 11:45. Upon arriving, the previous surgery went quicker than expected and they were ready for Rachel. Things moved rather quickly than we expected. They got her into a gown, took her vitals, and gave her a dose of versed and tylenol to help her forget anything she was about to encounter until they got her under general anesthesia. The nurses issued her new teddy bear an ID bracelet and even said she could take her bear with her to surgery! She was happy about that.

By 10:30, they were wheeling her off to surgery. Just a few tears shed on Mom's part when saying goodbye, but by then Rachel was pretty much glazed over from the Versed. Steven and I came down to the lobby and checked in with the information desk where they issue you a pager that texts you with updates straight from the Scrub Nurse.

The first update came at 11:02 stating that surgery had officially started and Rachel was doing well. The next update came at noon saying things are moving along as expected and Rachel was continuing to do well. That was our last update.

Thank you to everyone who is praying and thinking of us. We can feel your prayers and they are much appreciated.

Tuesday, November 16, 2010

Surgery Time

I just called the surgery scheduler to get the time for surgery tomorrow.

Rachel's surgery is scheduled for 11:45am. We'll need to be there at 9:45 am.
Rachel's in good spirits today. Talking excessively, not sure if it's more than usual and it's just underlying nerves making her talk so much or if it's me just being overly sensitive to how much she's chattering. LOL.

We got groceries this morning and she was very helpful in picking out a few things she'd like to have once we're home and the recovery process has started.

And she has a friend coming over this evening to visit and bring her a little something and she's excited about that as well.

Monday, November 15, 2010

Guest Book

We would love to know that you've stopped by to see Rachel and how she's doing on this journey.

Please take just a minute to sign her guestbook so we know you were here! Click on the "POST" option, once you arrive to the guestbook.

Pre-Op Appointments

Rachel had two pre-op appointments today.

The first one was 8:00 with Dr. Martin's resident. She went over the procedure, over all the risks and benefits, had me sign the consents, and answered my long list of questions. She also took a listen to Rachel's lungs and heart along with the other basic vitals and snapped a before picture of Rachel for her chart. The resident was extremely friendly, reassuring, and showed compassion when after I welled up in tears she reached her hand out to mine and even had tears of her own welled up. She was a mother of young children and could identity with being a mother and that personal touch made MY morning. While she's not sure if she'll be the resident assigned to the surgery on Wednesday morning, she assured me we would see her the morning after surgery.

We saw Dr. Martin in the hall and he said he'd see us Wednesday. I made it a point to tell Rachel that he was Dr. Martin and he'd be the one fixing her nose and inside her mouth.

Next appointment was the "Pre-Anestheisia Consultation and Education" appointment where we basically did all the pre-admission stuff. My Mom went with us to these appointments this morning and I'm so thankful she did, she kept Rachel busy while I filled out numerous amounts of paperwork, and was the second set of ears to hear anything and everything everybody had to say. Thanks Mom!! :) After meeting with the 'financial planner', Rachel was taken back to an exam room where she was once again weighed (53lbs), measured (46.2 inches), as well as her blood pressure and pulse ox was taken.We then met with the nurse practitioner for the anesthesiologist department where we went over medical history, concerns about anesthesia, etc. It was at this time that she informed me Rachel needed a finger stick to check her iron level. I told Rachel what they were going to do, she looked away, and never even batted an eye. She said it hurt only after she'd received her super cool bandaid. So Rachel is all set to go. I'll need to call the hospital tomorrow afternoon to get a surgery time. But other than that, she's ready to go!