The Aftermath of an Illness

My house has hints of what's transpired over the past few weeks littered about in various rooms. The kitchen has more syringes in the drying rack than usual. The thermometer and small pulse oximeter have taken residence on the kitchen counter. Four extra medications sit beside them. Next to that, a notebook filled with pages of documentation regarding medication administrations, heart rates, and oxygen saturation numbers lays open-ready for more notes to be added.

In the living room, discharge instructions from the hospital lay on my side table. Two sets of nebulizer masks and tubing sit beside family photos.

In Jaycee's bedroom, the familiar bi-pap takes its usual place next to the bed. Added to the mix of equipment is the bigger hospital grade pulse oximeter to monitor Jaycee while she sleeps. It's pointed directly at the video baby monitor, which feeds into my bedroom at night. Tape, to secure the probe, is within an arm's reach.

The last few weeks have revolved around my daughter's respiratory illnesses. Her combination of Down syndrome (narrow airways), asthma, obstructive sleep apnea, and a poor cough response means that a small change in her respiratory status can bring about serious breathing problems. Daily, we do inhalers, hypertonic saline nebulizer treatments, and vest airway clearance to keep her lungs in "best" state. Her interventions increase with the onset of the slightest symptom.

At the beginning of May, Jaycee had a respiratory flare up after flying on an airplane. By the time we flew home from our short trip to Vegas, we were attacking the illness (or whatever you want to call it) with albuterol treatments, steroids, and frequent monitoring. Just as she was starting to improve she caught a cold that my husband and I both had. Her breathing was audible at times as the cold brought on coughing and snot. We made more trips to the doctor, calls to pulmonary, started another round of steroids, and kept on treating her at home. By the end of week three, I was ready for her to be well.

As we came home from grocery shopping, I told my husband, "I think Jaycee is finally getting better. Maybe my stress level will start to decrease." Earlier in the day, she had energy to play with her cousins. She laughed at jokes during a family celebration. She ate the delicious fish and cupcakes.

Ten minutes after I made that statement, everything changed. As I drove home, I said, "Jaycee's breathing sounds weird." I couldn't see her, but my ear is finely tuned to hear the slightest change in her breathing. My husband reported she was fine- simply trying to sleep.

"That's probably a bad sign," I said.

It was. The emergency inhaler and small pulse oximeter we had carried around all day came in handy as we started giving medications and checking her numbers. I pulled off the highway to see that her fingers and lips were blue. I knew the number would be low; it was.

My son sat next to her in the van saying, "I don't understand what's happening."

The day was so ordinary just hours before this occurred. A smile had been on my face where a worried look appeared most days prior. Things were going well until they weren't. My family was shocked as I told them the news. No one could believe the change in her respiratory status, except they could because it's happened in the past.

That led to 48 hours in the hospital over Memorial Day weekend.

It was a short admission for Jaycee. Like usual though, Jaycee needed intense around-the-clock interventions and monitoring once home. Her recovery was slow. At the time of writing this, she's yet to get back to her normal baseline, but she's inching closer.

I see the illness in different parts of my house. I feel the effects of the illness in my own body and mood. I hear the difference in my daughter's breathing. I listen to my son talk about his concerns after witnessing his sister turn blue. This is the aftermath.

If you have read this post and can't relate to any of this, you are blessed. If you have never been through a medical emergency with your child, you are blessed.

Do you want to know something? I'm blessed too. Blessed is a perspective. Yes, in the middle of her respiratory distress, I didn't feel blessed. However, I knew I was, even if I didn't feel it. Stress, fear, worry, and exhaustion are all strongly felt during Jaycee's illnesses. However, I also know that we are in this together as a family. We're looking out for one another. We're carrying each other's burdens and thinking about the needs of someone besides ourselves, which was a bit challenging when this illness was happening during my birthday. Still, I know what's important in the long run.

An illness brings an aftermath. God meets me there helping me through all the cares of this world to more effectively love my children.

If Your Child Gets a Bi-pap

If you are a parent, you have probably read If You Give a Mouse a Cookie or another book from the series. Today, I present to you:

 If Your Child Gets a Bi-pap

If your child gets a bi-pap machine to treat their sleep apnea, you'll have to plug it in to an electrical outlet.

Once it's plugged in, you'll realize the cord may be a tripping hazard, so you'll have to move your child's bed to a safer location.

You can't set the machine on the floor, so you discover you will have to buy a little end table and tuck it in the drawer. This will keep the machine from falling down, but it will also add something else into the room.

Before you turn it on, you'll have to fill it with distilled water. Ever so often you will run out of distilled water, and you'll panic. Then you decide to use tap water just this once or boil some water.

The first night you put the bi-pap mask on your child and turn the machine on, it will be an utter failure. Your child will take the mask off. You will put it back on. Your child will take the mask off again. You will put it back on while sighing or praying or inwardly screaming. And so it will continue as long as you persist. You will get really tired.

After several days of using the machine, you can think of nothing else but of sleep and having peace at night. Eventually, it will happen.

Each week, you'll have to disassemble the hose, mask, filters, and water chamber. You'll fill the sink up with hot soapy water and wash these parts. You'll replace the filters as needed. Your dish drain will be used to dry the parts, and it will feel strange that the bi-pap is invading your kitchen space.

After a few months, you'll realize you need to replace some of the bi-pap parts. You'll call your medical supplier and wait on hold a ridiculous amount of time. You order the parts and wait for them to arrive.

In a few days, a large box comes. You'll open it up to find filters, cushions, head gear, a mask, a water chamber, and miscellaneous items. You'll be excited to switch the parts out but notice there is a surplus to be used later. You need somewhere to store these items. You'll go to the store and pick out a plastic storage cart that seems large enough. (Eventually, it won't be, but you'll keep cramming things inside of it.)

One day, you might notice your child's face getting red from the mask. You ask the doctor about it and are told to purchase a barrier cream. You try to rub the thick lotion on your child's face and then try to scrub it off your hands. You slide the mask on your child and notice you completely misjudged where the cream needed to go. You take the mask off and try again. This time you get it right.

When your child is older, she will want to spend the night somewhere else (probably grandma's house). You'll pack up all the bi-pap supplies in a travel bag. You'll have to train the new person on what to do. Few people are up for this challenge, and you are grateful for those that are.

If your child gets a bi-pap, be ready for several changes. Have patience for the process. Take courage knowing that everything you are doing will help your child's health. Don't be afraid. You will know what to do if your child gets a bi-pap.

By: The mother of a child bi-pap user for 9 years and counting

Sleep Apnea Surgery: 1 Year Later

Last year, my daughter had a multi-level surgery to help treat her obstructive sleep apnea (OSA). This wasn't a surgery we ever thought we'd consider, but it was one that came after 8 years of struggling.

When my daughter was 3 years old, a sleep study indicated Jaycee had OSA. It is a diagnosis that is quite common for individuals with Down syndrome. The first line of treatment was to remove her huge tonsils and enlarged adenoids. I thought that the OSA would be "fixed" after the surgery. To my surprise, the follow-up sleep study showed the OSA was still present. The c-pap entered our home shortly after the study. Getting Jaycee to tolerate the c-pap machine was a long, arduous task that frankly took years.

Since her diagnosis, Jaycee has had sleep studies completed every 1-2 years. Nearly every study showed worsening apnea, which meant her c-pap support was increased more and more. Eventually, Jaycee switched to a bi-pap to make the higher pressures more comfortable for her. It worked for awhile, but the pressures kept getting higher making the bi-pap uncomfortable. If you are familiar with pressure settings, then you'll know that 19/15 with a rate of 15 is pretty high (and hard to tolerate). When she was no longer wanting to wear her bi-pap on this high rate, we started considering alternatives that we had been offered before but never considered.

I'm trying to sum up 8 years of Jaycee's OSA and machine treatments in two paragraphs. There's so much to say. If you want to read more on her background, I've written previously about her journey towards the surgery on this post.

After seeking several opinions and going through several diagnostic tests, my husband and I consented to a multi-level surgery performed by an ENT last year. A sleep endoscopy test showed exactly where Jaycee was obstructing while she was sleeping. This test allowed her team of doctors to develop a surgical plan for treatment. This website gives some information on the surgery in general. Basically, Jaycee had a total of 5 spots in her nose, throat, and mouth that would be operated on in order to create more room in her airway.

Prior to the surgery, we were told what to expect with her recovery and the risks. After surgery, they thought Jaycee would need a night or two in the hospital to be monitored. After that, Jaycee would need around 10 more days of recovery time at home. Her diet would need to be softened (much like after a tonsillectomy) during her recovery. Also like a tonsillectomy, the main risk was the small chance of a bleed post-surgery.

The benefits of the surgery would hopefully be that Jaycee's pressures could be decreased significantly. The surgeon reported that this surgery eliminated the need for a c-pap or bi-pap machine for some patients but didn't expect that result for Jaycee given her severity.

Roughly one year ago, Jaycee went in for surgery. At the time of the surgery, Jaycee was 11 years old and minimally verbal. My husband and I were nervous, but hopeful she would do well. But, the recovery was worse than I could have imagined. My body tenses up again just thinking about it. She was in a tremendous amount of pain. Jaycee has a high tolerance for pain, so I knew she must have felt horrible. But really, the doctor didn't prepared me for the pain. I suppose I should have known, but it was hard to watch her feel so bad.

Jaycee spent the first night after surgery in the ICU as planned. Then she spent the next couple of nights on the hospital recovery floor. The main issue after surgery was her pain that kept her from being able to/wanting to swallow. At first, she couldn't manage swallowing her own saliva. It took her some time to swallow enough liquids to go home safely. We eventually got there! I could write several paragraphs on how the nurses didn't seem to know how to handle Jaycee and her recovery but I'll stop myself. (Sigh)

Once we were home, Jaycee wasn't doing great. She was barely taking enough liquids and soft foods. Normally, Jaycee wants to eat and drink all day long. She had to almost be forced to eat yogurt or drink a Kool-Aid jammer. Jaycee sat around and looked pretty miserable most of the time.

Then another problem happened. Shortly after being home, Jaycee developed thrush, which was most likely a side effect of one of her post surgical medications and her decreased oral intake. Thrush made eating and drinking even more painful for her. We begged her to drink and take her medicines. It was extremely stressful! I had a plan in my head of how her recovery would go based upon her doctor's warnings, and the reality was much different.

Then, Jaycee had a post surgical bleed. And then another. That's right- two. She had to be admitted each time for the bleeds. I could write 500 words describing the bleeds, but I'll spare you. In total, it took 25 days for Jaycee to make a full recovery. Up until that point, she needed some type of pain medication each day or needed to be encouraged to eat or drink. Twenty five days is a long time when you are trying to give medications and drinks to a patient that is unwilling! After all her bleeds and complications, we were slow to let her eat foods with rough edges and allow her a full diet. We finally let her eat almost anything about day 35-40. (Jagged chips were offered later than that.)

Some thoughts for those considering a multi-level surgery:
1. Plan on more recovery time than the doctor suggests!
2. If you wear a bi-pap, make sure your team has a plan in place for safe sleeping post surgery. For Jaycee, her airways were swollen and sore as expected right afterwords. No one wanted her to wear her bi-pap right after surgery. However, she was dropping her oxygen saturation levels at night in the hospital. There didn't seem to be any thought about what we would do during this post-surgical time. When the concern came up in the hospital, members of the team had differences of opinion. We ended up using oxygen, which we had at home anyway, while she slept at night for several weeks.
3. Consider having a humidifier ready for after surgery, especially if using oxygen. We purchased a good humidifier after Jaycee's first bleed. We were doing frequent saline sprays to keep her nasal passages moistened, but we decided to use a humidifier too for another layer of comfort.
4. Be prepared. Have soft foods, lots of liquid options, and over the counter pain medications at home for discharge. We tried to avoid foods and drinks that were red, which was the hospital's suggestion so that we wouldn't mistake red food or drinks for blood in the event of a bleed. Although, Jaycee's bleeds were so significant that it wasn't questionable.

A year later, here's what we have noticed with Jaycee:
-We were told that we'd see the full effect of surgery on a sleep study within 6 months. Jaycee, because of her nighttime sleeping issues and inability to use her high pressure settings after surgery, had a sleep study completed 6 weeks after the surgery. It wasn't completed at the optimal time, but it was necessary for her situation. Even in that short amount of time, Jaycee's pressure was decreased to 15/11 and the rate was dropped. We were pleased with those results. Because Jaycee has been tolerating this setting, her team has decided to not repeat a costly sleep study yet.

-She can burp now. The surgeon thinks we are crazy and insists this surgery has nothing to do with burping, but something changed. Jaycee never burped prior to the surgery. We had never really thought about it before, but it was obvious after the surgery. Once she was recovered, Jaycee would burp and cover her mouth in surprise. She thought it was so funny and odd. A year later, she is still surprised by burps. Apparently, no one can explain this burping phenomenon but we insist it happened because of the surgery.

-Jaycee can literally cough out mucus. Jaycee never coughed up mucus prior to the surgery. She's sick with respiratory infections often, so this was a big change we noticed shortly after surgery. She would cough the mucus up and not know what to do because it had never happened before. It was another change in her body that she was surprised by. This, the surgeon agreed, is something that could have been changed by her surgery.

In all, I can look back at the surgery now and be thankful that we did it for the positive changes Jaycee has experienced. However, I was really regretting our decision while we were in the middle of her extreme pain, bleeds, and inability to drink. Last summer was quite brutal, and I was sorry that Jaycee felt bad for the majority of her summer break. But, I am glad today that the surgery is behind her, and it was beneficial.

Love is...Consenting to a Surgery

The monitor beeps as numbers are displayed. 

There's constant scurrying outside the doors of the room.

My eyes strain to stay open after a grueling night. 

A whimper comes from my daughter's mouth. 

I take her hand, kiss her forehead, and say, "I love you, Jaycee." 

She says immediately, "Uh-uh!" (As in No!)

"Yes, I do. Mama loves you," I say with conviction. 

"Uh-uh," she retorts. 

I felt broken. 

She's miserable, and she blames me. 

She's partially correct. I consented to all this madness. My husband and I both did. 

Like many people with Down syndrome, obstructive sleep apnea (OSA) has been an issue for Jaycee since she was 3 years old. Having her tonsils and adenoids removed shortly after her OSA was diagnosed did not "fix" her apnea. Thus, treatment with c-pap started on my skinny, little 3 year old child. 

Over the years, her OSA has gotten worse. Some of it can be blamed on her weight gain (which has definitely been impacted by her health issues, hospital admissions, and prednisone use several times a year), but not all of it can. 

The first few years Jaycee had sleep studies, I prayed we would see improvements, and I prayed with confidence. Every time in the past 8 years of studies, it showed she was getting worse and needed higher pressures to force air in to keep her airway open as she slept. Eventually, she was switched to a bi-pap and on high levels of pressure. (19/15 with a rate of 15) I was told her pressures were so high that it was like driving down the highway and sticking your head out the window. More than one medical professional remarked how incredibly high her pressures were and wondered how she tolerated it. That fact is that she didn't tolerate the high pressures. She wasn't keeping her mask on at night. She was also beyond tired and ready for bed by 8 pm each night. 

In the last couple of years, several tests were conducted. Opinions were sought out. Options were made available. 

One professional nonchalantly suggested the best course of action would be to do a tracheotomy, which would bypass all the possible obstructions in the nose and the mouth. When I told this well-respected professional how I shocked I was by this option, he responded, "I don't see why you are so surprised. Your child is severely disabled. She doesn't even talk." 

As if that was a reason to do it? I never saw that "professional" again. A tracheotomy may have solved one problem, but it would have caused many new ones. It wasn't an option for us. 

And so we found ourselves going back to something offered 2 years prior, a multi-level surgery to address her obstructions. The first time the surgical option was offered, I said I would never do the surgery on my child. Things changed though, something needed to be done since Jaycee was no longer able to tolerate her pressures. Never say never! After a sleep endoscopy test which absolutely showed what was collapsing in her mouth and throat causing the obstructions, a plan was developed. 

We knew going in to this surgery that it was going to be hard as there were 5 places in her nose, mouth, and throat area that would be operated on. Jaycee's recovery was gruesome after her tonsil and adenoidectomy when she was 3. But, she was 11 now...older, stronger, and a much better eater. I was cautiously optimistic about her recovery. 

The surgery was absolutely worse than her tonsillectomy. Jaycee was older, but her response to pain was similar. As long as she felt pain, she refused to eat and drink. One night in the hospital was expected, but Jaycee needed a couple more. When we came home from the hospital, I tracked every ounce and she was barely meeting the daily goal to stay hydrated. Then she developed thrush- most likely due to the medications she was on post surgery coupled with the fact that she wasn't eating or drinking well. The thrush added to her pain and discomfort. The word stressful doesn't begin to describe the situation but it's the best word I have. (Other than horrible and terrible) She was in a lot of pain and had to be encouraged (often forced) to take anything by mouth including her pain medications. 

Then it got worse. Through the baby monitor one night, I heard Jaycee coughing. I went to her room to check on her and found she was coughing on blood coming from somewhere in her mouth. This is a long story, but I'll skip ahead to the part where Jaycee ended up back in the hospital for observation. 

About a week later, we awoke to Jaycee covered in blood again. A second bleed! Ugh! This time, the bleed had stopped by the time we discovered it. (Jaycee apparently woke up, took off her blood covered nightgown, changed into a new nightgown, and put herself back to bed!!!) Again...long story that picks up where this blog post began....

...in the emergency room with Jaycee arguing with me when I told her I loved her. 

I'm sure the surgery was confusing. I'm sure she didn't understand her pain. I'm sure it was all mentally and physically exhausting for her. It certainly was for my husband and I, and we didn't experience the pain of the surgery. I'm sure at that moment Jaycee wondered why her mother and father had allowed this to be done to her. 

Parenting is hard. Deciding what to do for your child with health problems is extremely complex as you must weigh risks and benefits. The decision to do the surgery was done with prayer, research, thoughts, worries, and hope for a better future. 

That surgery was 4 1/2 months ago. I still hate the thoughts of Jaycee's recovery and could talk to you for an hour about everything that didn't go as planned. I'll just say this. A sleep study just 6 weeks post surgery (which was only conducted so she could safely restart her bi-pap as we were using oxygen only after surgery) showed improvements already! The full effect isn't seen until 6 months post, but just 6 weeks later, Jaycee's pressures were dropped to a more tolerable level. We knew this surgery wouldn't get rid of her bi-pap machine. We were hoping for the result that occurred just 6 weeks later. Plus, Jaycee can now cough up mucus. She's never been able to do that! 

And so...

I sat in that emergency room feeling crushed from Jaycee's complications and her doubting my love. I wished for a time machine. I wanted to go back before the surgery and opt out of it to spare her of this pain. At the same time, I knew it would be better in the future after she was completely healed up. I had to simply give it time.

When I tell my daughter that I love her now, she says it back to me. 💓

Irritating Things I'm Thankful For

I don't like writing when I'm given a topic. I like to just write about whatever I have been thinking about for the past week. With Thanksgiving being this week, what kind of a person would I be if I didn't do a post about what I'm grateful for? I'm not even doing daily post on Facebook about what I'm grateful for. If I didn't write about thankfulness, it would just be a slap in the face to Thanksgiving.

I said a prayer asking God to show me what to write. This post was the response.


The NDSS reports, the life expectancy of a person with Down syndrome was just 25 years old in 1983. Today, the age has increased to age 60. Medical advancements have helped make this possible.

There are times when I get upset about the daily medical interventions we must do with Jaycee. But, God reminded me that the very things that sometimes feel irritating are the things I should be grateful for. They are helping to keep Jaycee healthy and alive.







Here's Jaycee's medications. Recently, medication number 10 was added. Instead of being upset that her medications keep increasing, I'm going to be grateful that there are treatments available for Jaycee.

Jaycee's vest airway clearance machine is next on my list. Twice a day for 20 minutes each, Jaycee uses this machine. I am thankful there is a machine that can help Jaycee's cough when her lungs are getting filled with mucus. I'm thankful this helps treat her lung cyst. I was thankful the day that our insurance approved this expensive machine, and I want to remain thankful.

 

This is Jaycee's nebulizer machine. When Jaycee started using a nebulizer as a toddler, I erroneously thought it would be temporary. It wasn't. Jaycees still uses this a minimum of twice a day. This little machine has become an important part of keeping Jaycee's lungs healthy. I'm thankful that Jaycee has this machine even though it eats up time every day.

Finally, this is Jaycee's bi-pap machine for treatment of her obstructive sleep apnea. Jaycee was just 3 years old when this machine came in our lives. For the last 6 years, this machine has dictated many things in her life in regards to when and where she can sleep. Yet, I should be thankful that Jaycee has a machine that gives her a way to breathe at night.

 

 

These medications and machines seem to limit our lives at time. Decisions about where we go and what we do cannot be made without factoring in these four items. Sometimes, this irritates me. But this Thanksgiving, I want to be grateful. I'm grateful these interventions are available to Jaycee to give her a better and longer life. 

 

Here's my challenge to you. Do you have something in your life that you need to have a different perspective about? Maybe something that irritates you is actually something you should be grateful for. 



31 for 21: Packing Up

31 for 21 challenge continues with photo Friday. Here's a picture and the story behind it.

 

Question. How many nights do you think I packed for Jaycee and I in this picture? 

 

Answer: 2 nights

 

 

The plastic bag on the table held snacks, distilled water for the bi-pap, and toys for our trip. The green cooler bag had juice and her medication that needed to be refridgerated. The red bag is the diaper bag used for public outings during the day. The small black bag directly in front of the red bag is Jaycee's bi-pap. The taller black suitcase is Jaycee's vest airway clearance machine. The purple suitcase had Jaycee's clothes, the nebulizer, and night time diapers. Finally, the navy blue bag had my clothes.

 

Question: How did I get all these bags in to the hotel with Jaycee?

 

Answer: Not very quickly or easily. Ha!



31 for 21: When Your Child Wears A Bi-Pap

Welcome to Throwback blog Thursday for Down syndrome Awareness Month, which is a repost of a previous entry.

When your child wears a Bi-pap....

...there are certain things you can and cannot do. The other day I realized that Jaycee has worn a c-pap or a bi-pap for most of her life now due to obstructive sleep apnea. For the last 4 years, Jaycee and I have had this love/hate relationship with her machine. She hates wearing it. I hate making her wear it. But, it's helping her breathe better at night, so we must do it. She's gotten more accustomed to her bi-pap over the years but some nights it's still a struggle to get it on perfectly (with no air leaks) and to keep it on her.

Here are some ways your life as a parent is affected when your child wears a bi-pap:

-There are no more spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!? Apparently just my mom, since that's the only person she's ever stayed.

-When you travel, you have to pack your machine up in a little bag. You also have to make sure you have distilled water to put into it.

-If you go on a rare date with your spouse, the date must end early before your child might fall asleep. You have to be home to put your child on their bi-pap.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or sometimes dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. In our case, we put the bi-pap on after she's fallen asleep, which can take 20-60 minutes.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls.

-You have to clean the parts weekly and remember when it's time to reorder new parts.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information.

 

 

***UPDATE: Jaycee has now used her machine for 6 years and no longer hates her bi-pap! I think she knows she rests better with it. For the first year or two on it, I dreamed of the day that Jaycee would no longer need it. I have resigned to the fact that Jaycee is probably going to need it forever.

Obstructive sleep apnea is common with Down syndrome due to the low muscle tone and smaller airways. Often removing the tonsils and adenoids will help. In Jaycee's case, it didn't.

Surprise: You're having a date!

I have many excuses for not going on a date with my husband:
-We have a very limited number of people who can babysit Jaycee.
-Jaycee requires 50 minutes of medicine and airway clearance every morning and every night.
-Jaycee sleeps with a bi-pap every night and goes to bed at 8 pm, so that makes evening dates next to impossible.
-If she is even a tiny bit sick, she is usually home bound and requires even more medicines and airway clearance.
-Jaycee is very routine oriented. If I change her evening routine, she can get extremely uncooperative.
-Gosh, I'll admit it! I like routines too. Planning a date around our schedule requires too much thought and effort.

This year, these excuses have resulted in one magical date night for our anniversary. Yes, one. Any date that includes seeing the Godzilla movie must be special! We sort of had one more date night if you count the dinner we had while we attended a Down syndrome conference. My husband said the hours of classes we took before we got to that dinner made it not count. There have been several short lunch dates at local restaurants during the week while the kids were in school. So, we do go out just not anywhere special or the slightest bit romantic.

Last week, we had date night number 2 for the year.

Some thoughtful people from our church proved they could be private detectives by secretly gathering information about us, planning a date based around our interests, and a big surprise reveal for us.

The date plans were revealed in the middle of a fake interview at our home for what we thought was a video for church. It was clever. It was surprising.

I have had many surprises the past few years, the majority of which have been bad and negative. I honestly forgot how nice a good surprise felt. The kids received several presents. We received tickets to see our favorite Christian artist, Toby Mac, a hotel room, gas money, and a restaurant gift certificate.

I couldn't believe that our family was picked to receive a blessing like this. And I couldn't believe our church, which is attended by hundreds of people, thought of us and our family. The night we received the gifts, I couldn't sleep from excitement.

A few days later, I was still excited as we made our way to the concert. It was fun and uplifting. We got hours to talk to each other without interruption or thoughts of medicines. We stayed out until 11 pm; that's rare for us! We slept in until 8:30 in the morning (also rare). We traveled with 1 suitcase and no medical equipment! I missed my kids but enjoyed the time with the man who stands by me during all of our crazy ups and downs.

It was a date night that neither one of us will forget for a long time!

Thanks Crossroads Bible Church!

My Special Chores

My Special Chores.......A peek into the life of a mom caring for a child with special needs:

• Once a week, clean Jaycee's bi-pap parts. This involves taking the hose off, disconnecting the mask, taking off the air filter, taking out the water chamber and submerging all in soapy water.
• Clean the AFO braces once a week with soapy water.
• Clean the inhaler aerochamber once a week. This involves soaking the chamber in soapy water for 15 minutes and air drying overnight.
• Once a week, I clean the nebulizer mask. Periodically, I change the tubing on the nebulizer.
• Once a month, check Jaycee's night diaper supply & reorder if necessary.
• Once a week, check the medications to see if any need reordered. Go to the pharmacy if needed.
• Schedule doctor's appointments and move things around at work to adjust for them.
• Dust the house regularly to prevent allergens from building up.
• Monthly, check the stock pile of various medical supplies like oxygen tubing and saturation monitor probes.
• Regularly change messages or add pictures to Jaycee's communication device A.K.A the talker.
• Every couple of months, change the filter on Jaycee's airway clearance machine.
• At the end of the week, I plan my meals for the next week. Ever since we learned Jaycee has severe acid reflux, I do my best to only have 1 or 2 meals a week that could possibly be triggers for her reflux. I make sure I have the foods available that are good for Jaycee to eat that won't cause her reflux. This does take some planning and thinking!

When Jaycee's Tonsils Came Out

Whenever someone tells me their child is getting their tonsils taken out, I cringe. If they ask, I tell them our story.

Back in 2009, Jaycee's cardiologist noticed she had some high pulmonary pressures. "This could be caused from sleep apnea. Has she ever had a sleep study?"

She hadn't but one was scheduled soon afterwards. That first sleep study was torture for me, her, and the sleep lab technician but she did get enough hours of sleep recorded in order for a determination to be made.

Sure enough, she had obstructive sleep apnea.

Since her tonsils were so large that they were "kissing," it was no surprise that her Ear Nose & Throat doctor (ENT) wanted to perform a tonsil and adenoidectomy. This is a fairly common issue with Down syndrome. The surgery was discussed and explained. A surgery was scheduled.

Prior to the surgery, I was nervous. Jaycee was 3 years old. She had a high pain tolerance and wasn't able to communicate pain well. She was a poor drinker on a good day. I had to often sit with Jaycee and make her drink from a soft top sippy cup a few times a day much like you do a baby. After the surgery, she would need to stay hydrated and I feared this would be hard. I was also in my last trimester of my pregnancy, so that probably contributed to some of my pre-surgery anxiety.

The surgery date came. Things were removed in the hope that her sleep apnea would be cured. I believe she spent a night in the hospital before being discharged home. The recovery at home was brutal. She refused to eat or drink. I took syringes of liquid and pleaded with her to drink a teaspoon or less every hour. I tried every drink and liquid I could think of. There were moments when I was really successfully, but mainly I was not. She started getting dehydrated. I think we went to the emergency room twice, once for fluids and once for a stronger pain medication. 

About 10 days after her surgery, we were trying to get Jaycee to bed. She kept getting up and opening her door. I finally got really frustrated and went to her room determined to get her to sleep. When I opened the door, there was blood on Jaycee, the wall, her carpet. It looked like a crime scene. We were warned prior to the surgery that a post-surgical hemorrhage rarely happens but if it does, it can be deadly. Go to the emergency room immediately. I remember those words of warning.

We quickly loaded her in the car and drove to the nearest emergency room. Fortunately, Jaycee's bleeding stopped spontaneously before we got to the hospital. That was a blessing! As a result of the stress and panic, I started having contractions. I was 37 weeks pregnant and soon became concerned that I was going to be in a hospital bed too. We spent all night in the emergency room waiting to be admitted for a full 24 hour observation. Thankfully, there was no more bleeding. In fact, she finally started eating and drinking. It seemed that she was finally recovering from the surgery.

We took Jaycee home, I was exhausted and still having contractions. A few hours after we got home from the hospital, we decided to take me to my hospital. The next day, Elijah came into the world. So the story of Jaycee's tonsillectomy is coincidentally the beginning of Elijah's birth story.

And in the end.... She had a follow up sleep study to make sure the surgery "cured" her obstructive sleep apnea. Surprisingly, she still had obstructive sleep apnea and at 3.5 years old, Jaycee started using a bi-pap machine.

When I tell my story, I don't want people to be afraid or to talk them out of it. But, I try to remind them that sometimes things go wrong, that the recovery may not be "routine," and the result may not be what you expect.

When your child wears a Bi-pap....

...there are certain things you can and cannot do. The other day I realized that Jaycee has worn a c-pap or a bi-pap for most of her life now due to obstructive sleep apnea. For the last 4 years, Jaycee and I have had this love/hate relationship with her machine. She hates wearing it. I hate making her wear it. But, it's helping her breathe better at night, so we must do it. She's gotten more accustomed to her bi-pap over the years but some nights it's still a struggle to get it on perfectly (with no air leaks) and to keep it on her.

Here are some ways your life as a parent is affected when your child wears a bi-pap:

-There are no more spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!?

-When you travel, you have to pack your machine up in a little bag. You also have to make sure you have distilled water to put into it.

-If you go on a rare date with your spouse, the date must end early before your child might fall asleep. You have to be home to put your child on their bi-pap.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. In our case, we put the bi-pap on after she's fallen asleep, which can take 20-60 minutes.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls.

-You have to clean the parts weekly and remember when it's time to reorder new parts.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information.

A bi-pap has changed my daughter's childhood, and it has changed some aspects of my life. Still, I'm thankful that there's a solution to her sleep apnea problem even if it life altering at times.

The Monitor Effect

The last few weeks I have spent too much time staring at a screen. Not a fun screen, like a television or a computer. It's a necessary but annoying screen. It is the dreaded......oxygen saturation monitor.

If you have been reading my blog, you know Jaycee's been battling respiratory issues for literally 2 months now. She already has obstructive sleep apnea, which is treated with a bi-pap, and has asthma, so any hiccup with her respiratory system can turn into something serious or something that lingers on and on. We've had 3 trips to the hospital in the past 2 months. There are times in her life when things are crazy like this. But, she did have 10 healthy, hospital free months prior to all of this.

Back to the monitor, I have a love/hate relationship with this monitor. We got it a few years ago when she was having so many breathing issues. It was hard to be at home with her wheezing and deciding on if she was truly bad or if she just sounded bad. The oxygen saturation monitor has helped us easily decide whether or not we need to take her to the hospital. Under 90% (the red number), she needs oxygen and we need to get to the hospital. For that part, I'm thankful to have the monitor.

In 2011, this monitor probably saved her life. Jaycee was acting weird and we didn't know what was wrong. I hooked her up to the monitor just to help try to figure out what was wrong. Her heart rate (the green number) which is set to alarm when it hits 140, read 220! This monitor caught her tachycardia and we immediately rushed her to the ER where she was transported by helicopter to a children's hospital.

Sometimes, the monitor drives me insane though. If I see 91 or 92% during the day, it starts to worry me. I see that she's getting close to the 90% cutoff and I get nervous. Sometimes, a spot check to see where her oxygen level is leads to me checking her too often because I'm nervous.

Jaycee has been having trouble breathing at night lately, so she wears this monitor while she's asleep. Typically, the monitor is in her room next to a baby monitor. The receiver is in our bedroom. Throughout the night I'll hear the beeping. Sometimes, she alarms because the sensor isn't reading. Sometimes, it alarms because Jaycee has thrown the bi-pap off and her levels have dropped to 89%. I hate the 89% alarms when everything is fine yet she's dropped for an unknown reason. Fortunately, repositioning usually helps the number to go up and all is well.

Last weekend, we spent a couple of nights in a hotel. By the time, I lugged up the monitor, bi-pap, and meds, I was rethinking the trip. Since our beds were close together, her monitor was placed on my nightstand. Bad idea! Jaycee had a rough night. She started out at 90% with her bi-pap on. Not good... I just kept staring at the monitor wondering if she'd worked her way back up to the upper 90s or if she would dip lower and we'd have to go the hospital. It's hard to fall asleep when 90% is staring me in the face. I wanted to shove my husband who was peacefully snoring next to me knowing what her oxygen level was. Maybe his 13 hour shift at work helped him. Maybe that's what I needed!

Actually, what I need to do is to have faith and calm down. Monitoring her to keep her healthy is great. But if the monitoring is causing me stress (and it is), then it's not a good thing. I need to be able to separate the two and not get so emotional when things look shaky. Fear causes me to assume the worst will happen. Why can't I assume she'll get better and her numbers will improve? Why does my mind instantly go to the negative? That's the million dollar question. And that's what I'm trying to work on right now.

Ripping up Pictures

My pastor talked about something at church Sunday that I'm still pondering. He talked about the pictures we create about a subject and how that leads us to pray a certain way. He gave the example of revival. Ten different people have 10 different pictures of what revival looks like. Some may think it's when dozens get saved, some view it as happening when big miracles take place, and others will picture revival as long wild services that last hours. He said that people will pray for whatever their vision of revival is instead of praying for what God wants to do. Then people will judge whether or not revival has come based upon those pictures we have. So he went on to talk about how we should rip up some pictures we have in our minds that prevent us from seeing God and praying the right way.

I started thinking about some pictures I have had to mentally rip up over the years. I had to rip these pictures up so I wouldn't be upset and bitter. I had to rip up the picture I had of a healthy baby that I prayed for during my pregnancy. If I hung on to that picture, I'd still be upset. I had to rip up the picture of the house I  thought I'd be living in. This may sound really trivial but when we got our house we thought it was our starter house. Yet 10 years later, we are still here with no thoughts of leaving. Jaycee's medical expenses have erased plans for something different. Our house isn't terrible but it's small. Every drawer, corner, and both closets are packed full. I'm not a collector or hoarder but it feels like it in this house! For awhile I got really agitated when I would put laundry away and would have to cram it in the drawers. I just got upset because reality was not matching up with my picture. Somewhere along the way, I ripped that picture up and became content with where I was. I don't have a picture of a different house now. If it happens, it happens; if not, that's fine.

This week I was thinking about the picture I have of Jaycee's health. I pray often for her lungs (asthma and sleep apnea) to be strong and have good breathing. This week God started dealing with me about my picture of her health. I have this fantasy picture that Jaycee's "good" health would mean there's no bi-pap needed for her apnea and there's no more inhalers for her asthma. My picture of a healthy Jaycee hasn't happened yet because she still needs meds and a machine to help her breathe well. There's still oxygen in her room for when she's having an attack. I look around and see she's not "healthy." But God has showed me that my picture is wrong. I'll never be thankful and grateful if that's the picture I've set for her. It's not that I can't prayer for her to be medicine and machine free one day but I can't let that prevent me from seeing what's happening now. Jaycee has had 2 colds this year and it never went to her lungs. That is highly unusual. I can always count on a cold to turn into more than just a cold. She has been hospital free for almost 10 months. That's the longest stretch she's had in 2 years. God is answering my prayer for her lungs to be strong and for her to be healthy. I just couldn't acknowledge God working because my picture wouldn't allow it. 

So I encourage you to think about those mental pictures you have and decide if you need to rip them up so you can see God moving in your life.

Sleeping Beauty & her Bi-pap

Since 2009, Jaycee's obstructive sleep apnea has been treated with a c-pap or a bi-pap machine. People with Down syndrome are more at risk for sleep apnea due to their smaller airways and low muscle tone. Usually with children, removing tonsils and adenoids fixes the problem. Jaycee did have this procedure but her apnea persisted. I'm not sure how many young children with Down syndrome use bi-pap machines to treat sleep apnea. I personally do not know of any. Jaycee started using hers at age 3.

For the last few years, our nights have looked pretty similar. First, her daddy tucks her into bed. She signs "dad" if I try to take her to bed. They do a whole routine now featuring her Olivia the pig dolls. Then, I wait on her to fall asleep. When she's good and asleep, I attempt to put her bi-pap mask on. The mask actually fits over her entire face-eyes and everything. We searched for years for this mask and was so happy to have found it. When we first started using these machines, she would hit, slap, or swat at me in her sleep when I tried to put the mask on. She would scream or cry. It may have taken a couple of hours each night for me to actually get the mask on her. Over the years, she has gotten use to it. Most nights, she lifts her head up to assist in the mask application. Thank goodness it is much easier now!

I always check on her before I go to bed. If she's pulled the mask off in her sleep, I put it back on again.

Here she is asleep with it on. Notice how she is laying. She is laying kind of hunched over with her legs sort of under her. Weird sleeping positions are associated with sleep apnea because they are trying to get good air in. I've also just heard that kids with Down syndrome sleep in strange positions because their low muscle tone gives them more flexibility. I don't think I could sleep like that if I tried!

One important thing we have learned is that the placement of the machine is important. Because the machine has a water chamber to humidify it's air, the placement is critical. If it gets knocked over and the water spills, that would be very bad for the machine. Here is where we keep her machine:

It just so happens my mother-in-law picked out the perfect bed for Jaycee without her even knowing it. She got this bed pre-sleep apnea but it's worked out great. The bed has drawers underneath it. We put her machine the drawer and she can flop around all she wants without turning the machine over. I forgot to tell my parents about this during Jaycee's last sleep over at their house. When they checked on her, her machine was upside down. Fortunately, the water did not escape and ruin the machine. This is something we have to think about when we are away from home.

Jaycee's tolerance to her bi-pap has greatly improved over the years. I always have hope that her yearly sleep study will show improvement and will say that she no longer needs her machine. However, that moment hasn't came yet. I still have hope. It would be such a huge thing for her if she ever got to the point that she didn't need her bi-pap. Maybe one day....A girl can dream!