Jordan's Surgery

Yesterday Jordan had a Tonsillectomy, Adenoidectomy, Microlaryngoscopy and Brochoscopy!!  We knew that her tonsils were quite large and almost touching in the back of her throat and the ENT said that her adenoids were also large and it was a good thing to get them out now since she's not in any feeding therapy program.  The scopes were an opportunity to see if there was an anatomical difference that could be causing her to aspirate or have difficulty swallowing.  There was nothing found that would be causing problems so we continue to see her complications related to her lack of oral motor skills and dysphagia.  However, the scopes did show that Jordan has some damage to her esophagus all the way up past her vocal chords due to reflux.

A year and a half ago, when Jordan had her G-tube placed, they also performed a Nissen Fundoplication.  This procedure essentially takes the top portion of the stomach and wraps it around the bottom of the esophagus forming a one-way valve.  The result is that food can go into her stomach but that it blocks stomach contents from coming back up.  It also won't allow her to vomit or burp or anything.  The winter following her Nissen, she was sick quite often and although the first several times, she was only wretching and gagging, eventually she was able to fully vomit.  Then last summer during feeding therapy it was noted that she was able to burp and we even noticed reflux a few times.  We just had no idea how much reflux she was having and the damage it was causing...but now we do.

Jordan's stay at the hospital was fairly uneventful.  After her surgery, she was admitted to the Pediatric Intensive Care Unit.  Although she probably would have been fine in the general peds unit, due to her history of aspiration, her ENT was being overly careful.  The nurses were all great and we felt that she was well cared for during her stay.  The only complaint I have of the entire hospital stay was the bed I was expected to sleep on was HORRIBLE!!!!  The nurse ended up bringing me a couple of extra pillows and I layed them on the mattress and slept on them!!  Well, I use the word "slept" very lightly since Jordan only slept in short segments all night.  I don't think she ever slept over an hour and so I was up frequently to console her, cuddle her, change her diaper, or get her more meds.  It was great when the ENT stopped by for rounds at 6:30 am and filed discharge paperwork so we could get home early!!  By 9:30 we were in the van on the way home!

She played around the house for an hour or so and then after her 11am feeding, she and I both took a nice, long nap!!  This afternoon she was very cuddly, but also enjoyed some time running around and playing.  After her bath tonight she cuddled up with me on the bed and fell asleep.  I'm hoping that as long as I keep her comfortable with her pain meds, she should sleep quite well tonight.

Today after we got home from the hospital I called Jordan's Neurodevelopmental Specialist who originally ordered the G-tube/Nissen to see what they want to do following the information we learned yesterday.  I am waiting to hear back from them.  I'm assuming they will start her on some meds right away and then I requested a consult with a gastroenterologist to evaluate her digestive situation before just going back in and redoing the Nissen.

Surgery - Tonsillectomy, Adenoidectomy, Microlaryngoscopy and Brochoscopy

A few months ago, Jordan was evaluated by an Ear, Nose and Throat specialist and it was determined that she needed surgery.  She is scheduled for Monday, February 22 at 9:45am.  We are less than 2 days away and I am preparing myself physically, mentally, and spiritually for all that it entails.  The procedures are considered outpatient (for insurance reasons) but then she will be admitted to the Pediatric Intensive Care Unit at DeVos Children's Hospital for a minimum of 24 hours.  I am trying to process through all of what is going to happen.

The ENT found that her tonsils are almost touching in the back of her throat and need to be removed in hopes to provide a clear path for her swallowing in the future.  It's kinda funny because about 6 months ago, I called the peds office because during one of her screaming episodes, I saw how huge her tonsils looked and they told me that unless they were red and inflamed or she was showing signs of discomfort, large tonsils are common with young children.  I guess they are larger than they should be so out they go!!!  It is fairly common practice to remove the adenoids when they remove the tonsils so she is having that done as well.  The other procedures are scopes they are doing in order to see what her esophagus and trachea area look like.  They are looking for damage from reflux as well as any malformations that may be causing the difficulty swallowing and/or the aspiration.

The Tonsillectomy and Adenoidectomy, or T & A as the medical people refer to it, is a very standard and common procedure so we feel confident that this will benefit her in the long run and hopefully make it somewhat easier for her to swallow.  The doctor was very glad that Jordan was not currently in a treatment program for swallowing as the surgery could be a significant setback.  As frustrated and disappointed as I was that they were stopping feeding therapy for a year, it might be the best opportunity for us to take care of some of these other obstacles that stand in her way for swallowing.

The Microlaryngoscopy and Brochoscopy are the procedures we are more anxious about.  They will use a scope to look at her vocal chords and airway.  There is a huge part of me that is hoping they find some malformation that can be repaired and hopefully increase her chances of effective swallowing without aspiration.  I know it seems crazy to want them to find something, but since we have spent almost 2 years trying to figure out why she can't swallow and getting her to try to learn with no success, I just want to fix it for her!!  I am also preparing myself to hear that everything looks normal and that we are no closer to a solution than we were before.  It's hard sometimes to not get my hopes up, but I have to in order to avoid heartbreak and disappointment in the long run.

My biggest concern is that they told me she will be miserable for 2 weeks!!!  That's a long time with a little one!!  I know that I have heard so much about how people say Popsicles and ice cream and cold foods in general feel so good on their throat when they have their tonsils out.  Unfortunately, Jordan is NPO (nothing by mouth) and therefore can't enjoy any of the things that are often used to help soothe the sore throat.  I will have her cold, thickened water available, but she is not supposed to have large amounts of it - only small sips.  Hopefully, they will be generous with her pain meds to get her through the worst of it.

I'm sure Jordan will be strong, just as she always is; I'm just praying that I can be as strong as she is.  I was supposed to go on a winter retreat with our youth group this weekend while Conner and Jordan stayed with some relatives.  However, on Thursday night I completely fell apart and could not find the strength to leave Jordan!  Partly, because they had not babysat her before and there is so much information to cover with daily routines but also because of the possibility of something going wrong and I'm not there to take care of her.  With her surgery the day after I was to return, I was just overwhelmed with the emotions of leaving her.  I was disappointed that I wasn't able to have fun on the retreat with Derrick, Mak and the kids from church, but I am thankful to have this weekend to spend with my little's!!

Delinquent Blogger Update

I feel like I have been a delinquent blogger lately. There has been so much going on and so much I want to share, but I never seem to find the time to sit and write it all out. I do think that posting little status updates on Facebook seems to have replaced some of my fuller blog entries. Unfortunately, those are so short, they don't always tell the whole story.

Christmas morning, Jordan received a Jump-O-Lene!! This is an inflatable trampoline measuring 8 feet across. We had to move some toys out of the basement and rearrange things to make it fit, but it's a great addition to our playroom!! It's a great way for Jordan and Conner to both get their exercise! Therapeutically, it's great for Jordan to work on her core strength and balance and well as her sensory stimulation.




Since Derrick and I spent last fall attending a class called It Takes Two to Talk to help us learn how to work with Jordan to encourage communication, she was not in a group class. However, in January she started in the toddler class. The first class was a complete disaster - she cried during every transition!!! They did some fun stuff with the kids - they brought in bins full of snow and let them dig in it with shovels!! I really need to do this with the kids here at home - what a great way for them to play in the snow without having to bundle up and go out into it! Since then, Jordan has done great in the class and we love it!! There is talk of them starting a speech/language class so we are currently waiting to hear when that will start.

Jordan had her calories increased in November after her appointment at the Gerber Center because they didn't think she was gaining weight fast enough (1 pound in 6 months). After 2 months at the increased calories, she was gaining a pound a month!!!! They agreed that this was much too fast as it put her over the 50th percentile for her body mass!! They decreased her calories (although they were slightly above what they had been before) and after a month she is gaining slowly. She is now up to 23 lbs. 15 oz - almost 24 lbs!!!!

Jordan still has a tendency to put all sorts of things in her mouth - particularly small things she finds laying around (crumbs on the table, stickers Conner has put on things, etc...) In the end of January, we had a big scare with Jordan! She was up in Conner's room playing while I made lunch when I heard her start gagging. I ran up and found her standing there with a mouthful of white paste. I realized that she had taken a bite of sidewalk chalk and had chewed it up and now had no idea what to do with it!! I grabbed her and ran down the stairs while sweeping her mouth and then rinsing it out with water. She was still gagging and so I dialed 911. While on the phone with them, she cleared most of what was obstructing her breathing and I gave her some sips of her thickened water. She seemed okay so they never dispatched anyone. However, we then had to face the possibility that she may have aspirated some of the chalk so I made a call to poison control to talk with them about the signs to watch for. She seemed fine at that point and never did show any complications but it was a HUGE wake-up call for me!!! I have been trying to be diligent about watching her and keeping things out of reach that are not safe for her. Unfortunately, with a 4 year old in the house, sometimes things get left out. We are all working hard on this.

This event was extremely emotional for me! Not only was the concern for Jordan's safety a major part, I had to once again face the fact that my baby girl just can't do things like most kids her age. At 2 1/2 I am still worrying about her putting things in her mouth the way a 6 month old does. We don't know how long she will continue to put things in her mouth and we don't know if at any point she will learn to swallow so that even if the things are in her mouth, at least she will not gag on them. It makes me sad to see her strong desire to be oral and yet have to constantly tell her "not in!" We know that she has some understanding of this and yet sometimes she is just curious and sometimes she is a defiant 2 year old!! My prayer is that she will come to an understanding and acceptance that she cannot put things in her mouth. However, I don't want this to create an oral aversion so that when she is capable of swallowing she won't put things in her mouth (at least the food we want her to!)

Last week Jordan went to Mary Free Bed to be evaluated for new thumb splints. She had received some neoprene ones through Ken-O-Sha last fall, but the Occupational Therapist at the Gerber Center thought she might benefit from some with hard plastic supports to stabilize the thumbs more effectively. The therapists evaluating her were amazed at how unstable her thumbs were! They are constantly hyper-extending backwards but she doesn't bend her thumb to compensate for it's position so they end up just looking weird!! The discussed several options and narrowed it down to 2 designs that they thought would work best for her. One was a very simple design and they made it and fit it right there. It is a white hard material that circles her thumb and part way across her palm and then has a strip that wraps around the back of her hand and connects with a neoprene velcro strap to the part on the palm. Due to the extreme malformation of her right thumb they almost splint the entire thumb in order to stabilize it. The left one is a bit more open for movement. Jordan has done pretty well with them, but she takes them off quite a bit more than the previous ones. I suspect that they aren't very comfortable and since she can't move them and many fine motor tasks are quite difficult, she would rather go without them. The second design is on order and should be in sometime next week. We will go in and have them form the hard part around her thumb, but the majority of the splint is neoprene and should be much more comfortable for her. We had fun picking out colors!!! At first, I avoided the bright pink because it was so bright, but then when I showed her the options, it was the one she picked out. However, after remembering how dirty her tan one got, I decided that it would look awful if her bright pink splint was covered with dirty spots so we settled for a dark purple :)

Well, that pretty much gets everything up to date!! I will post more later on her upcoming surgery.