In Case of Emergency

As I write this, I am sitting in a hospital with Jaycee, watching her struggle to breathe. Her asthma, obstructive sleep apnea, and history of heart problems are a bad combination when she gets sick. Simple colds almost always turn into some sort of lung infection. We don't smoke or have pets. We adjust our lives to the point where we feel we are being paranoid to avoid all sorts of triggers that may set off her asthma. Yet, germs are everywhere. They are unavoidable. I know when I first see a snotty nose on her that we are in a potential battle for her health.

In six years, we have rushed her to the hospital several times,  usually for respiratory issues. It has become a familar situation for us. The moment we know we are heading to the hospital, there's a rush to pack everything we need. We live 2 hours from the hospital, so it's not easy to come home for supplies. Last year, I wised up and made a bag of all the bathroom neccessities (shampoo, perfume, toothpaste). This saves a lot of time during the pack rush. It's amazing how well my brain can remember things during the excitement. Phone chargers (check), money (check), movies for Jaycee (check), my schedule (check), clothes of course (check). I can do it all in well under 10 minutes. I once wore sandals to the hospital and regretted it. A week of sandals on hard tile floor was awful. Ever since then, I have remember to wear tennis shoes to the hospital no matter how dorky I will look.

Being in this situation and in the hospital is not easy. I'm not going to pretend like it is. However, we have done this so many times that it almost seems normal. The more we do it, the more familar we are with the system and just knowing what to expect. People usually wonder about how my husband and I cope with it all. We do have different opinions and feelings but in general we are both fairly calm. I'm typically the one who cares for Jaycee at home. I am the one making decisions about her doing her breathing treatments, when to take her to the doc, and trying to monitor her breathing to catch her before she gets really bad. So by the time we get to the hospital, there is almost a sense of relief that I'm not responsible for her care now. I can sit back and let someone else make decisions. My stress level acutally goes down once we arrive safely at the hospital. Sure, there have been scary moments in the hospital that have caused me to be worried and sad. Again, I don't want to make it sound like I'm always walking around the hospital with a smile on my face. That's not true. No one wants to be here or have their kid sick. But, I sometimes get the impression that people think I'm in her hospital room, crying and being depressed. That's just not the case. For me, the most stressful parts of her illnesses are times just before we end up in the hospital or the time we get home from the hospital because I am the one doing medications and not getting sleep due to her monitor beeping. So, that is some thoughts on emergencies that bring us to the hospital. Now, I'm going to try to take a nap!

Trying to stay Afloat

For six years, I have had the privilege of being Jaycee's mom. Together we have experienced things that the majority of people will never experience: open surgeries, heart caths, hospitalizations, being in the intensive care unit, respiratory distress, etc. Every year has had its set of challenges. Some were small (getting ear tubes) and some large (heart stuff). Some things that have happened have been expected. Many were not.

Each health or developmental issue that has come up has elicited a response from me. Some I have met head on, having faith and assurance that things would be fine. Other times, I have felt fear, stress, anxiety, depression, etc. These feelings could last a few minutes to a few days to a few months, depending on the severity. It's not an easy thing for me to admit but it's the reality. There has been health problem after health problem that it sometimes feel like our life is never quite "normal" for very long.

One day I got a mental picture of what this looks like. It's like I'm in an ocean treading water. I'm not drowning nor am I in immediate danger. But, it is taking lots of work to keep myself going. It is exhausting. There are times when I find something to rest on--a piece of debris that I can lean on. That gives me a chance to rest my tired legs and gives me a little support. I mentally and physically feel better but I'm still aware of the water surrounding me. Other times (when Jaycee's completely healthy), I am in a boat safe and secure. I'm completely at rest. I am happy and peaceful. Sometimes, a hole develops in the boat (I learn of a problem) and I begin to fear the time I'll be treading water once again. Other times, the boat simply rips apart (a sudden health crisis). I am suddenly back treading water working to keep myself afloat. Sometimes I am still very tired from the last time I was treading water, but it doesn't matter. I am back in this position and I have to do what needs to be done.

We got the sleep study results back this week and the results indicated her apnea is getting worse. So, I am treading water right now. I don't know how long I'll feel that way. I will pray, read scriptures, and do whatever it takes to help me find that boat so I can be in a better place for my family.

A Sleep Study

No, Jaycee did not fall into a pile of wires. This is a picture of her all hooked up for her yearly sleep study.  Jaycee has obstructive sleep apnea, which is common with individuals with Down syndrome.

Her apnea was discovered around age 3. Her enlarged tonsils and adenoids were taken out in an attempt to fix her apnea. However, it still remained. That's when we entered the fabulous world of c-paps and bi-paps. She wears these machines at night to help force air in to keep her airway open. Getting her to wear her c-pap and bi-pap masks has been a challenge at times. Maybe I'll get into all of that in another post.

Every year, Jaycee gets a sleep study done to determine if her bi-pap machine needs to be adjusted and if her apnea is better/worse. Sunday night we made our way to the hospital for her sleep study. We drove most of the way over to the hospital earlier in the day in order to keep her awake for the study. I took her shopping and had a fun afternoon out. I have learned that getting her a little more tired than usual helps the study go easier.

When we check in at the hospital at 7:30, Jaycee is excited to get into the bed and watch tv. She is familiar with this place now, but her first sleep study (when she was under age 2) did not go this smoothly. I get her pjs on and I feel out a large stack of papers. They contain lots of questions: Does she have a tv in her room? Does she sweat during her sleep? Does she sleep walk? Does she have nightmares? What are her medications?

Then the sleep technician comes in to start the hook up. There are several electrodes glued in her hair. She gets things placed on her leg, around her chest, and face. There is stuff everywhere it seems. They measure all kinds of things: snoring, leg movements, brain activity, oxygen saturation, etc. There is a lot to these tests! I have to hold Jaycee's arms down a few times, but overall she does ok with the hook up. This process takes about 30-45 minutes. Jaycee is tired after all of this. It's time for bed. She falls asleep really quick, which means I did a good job of wearing her out. After she falls asleep, a nasal cannula is put on. It annoys Jaycee. I have to sleep with her for the next 2 hours holding her arms down so she won't rip it off. Halfway through the test, the tech put Jaycee's bi-pap mask on. The doctors will later compare all of her numbers looking at no support and with bi-pap support to see how she did.

Morning comes and it's time to unhook. This process if faster. After several hair washings over several days, the glue will be completely out. Jaycee did great and is ready to start the day. I, on the other hand, am exhausted. I spend the rest of the day on the couch.

Look at all the wires. How can anyone sleep with that on?

In a few weeks, we'll get a phone call which will tell us the results. Hopefully we'll get a good report and we won't have to see the sleep lab for awhile!

Waiting Game

Yesterday, I took Jaycee to a doctor's appointment. That appointment was just like so many other ones. It started off with a long wait. 45 minutes to be exact. I often wonder if telling time or keeping a schedule is something taught in medical school. I believe most professionals skipped those days in school. If doctors and hospitals were a rare occurrence, then waiting wouldn't be a big deal. But, Jaycee averages 1-2 appointments a month now and goes more often when she's sick. So we have come understand why that room before you see the doctor is called a waiting room. You wait and wait. 

In six years, we have learned the ropes of the wait game. We know that if she gets labs we can expect a long wait there. Her cardiologist and pulmonologist is generally right on time. Her genetics doc usually doesn't involve too long of a wait. We need snacks and toys for the wait for the ENT and eye doctor. If she has to get an x-ray, that's always a toss up. Her regular doc could go either way too.

When Jaycee was first born and we started experiencing hospital life, we were quite frustrated with the process. I felt like I wasted so much time waiting. The really aggravating thing is I'll spend about 2 hours driving to the hospital (& a good 2 hours home) to wait for a long time to see a doctor for 15 minutes.  But...I have learned the process now. It is what it is. I can't fight it. For my sanity, I have to accept it.

In those waiting rooms, I think about the status of my patience level. It has improved over the years. There are times though when it becomes clear that my patience is really lacking. I make excuses for myself on why I have a right to be impatient but the reality is my impatience is a reflection of my heart and spirit. So yes, God can show us our heart and our attitude in a waiting room.

Wolff-Parkinson-White Syndrome: 1 year later

Last year a friend of mine warned about not sharing your testimony until your test is over. A few days from now marks the 1 year anniversary of Jaycee's heart ablation that "fixed" her Wolff-Parkinson-White syndrome (WPW). With that test over, here's the story:

It started in January 2011. Jaycee was home sick from school with her daddy. One of my clients wasn't home so I went home to eat lunch. I checked on Jaycee. She looked horrible and was acting strange. She was laying on her bed trying to fall asleep at 11 am. This was not typical! She was really pale. Thinking she was having an asthma issue, I hooked her up to her oxygen saturation machine. Her heart rate was 230. I thought it was broken or not reading right because that number was unbelievable. Jason and I checked her over and determined it was working and things were not good. 

We found ourselves in our local ER. I believe every doctor that worked there was in our room. I realized that it was suddenly very serious when they brought the crash cart in. Because Jaycee doesn't speak, I had no idea how long she had been in the fast heart rate they called a tachycardia. Phone calls to St Louis Children's hospital were made. A helicopter was in route. Medicine was given to stop the tachycardia. The first dose did nothing. The people in the room looked nervous. I thought "God is this how it's going to end." I was in shock. The bad part is that I sent my husband home to pack our suitcase. When he left, we didn't know it was that bad. We just wanted to be ready when the helicopter got there.

Another dose of medicine was given. Her heart rate immediately dropped too low and I remember the groans from everyone as we stared at the numbers. But as fast as it dropped, it came back up to 180. This was fast but acceptable. The crisis was over. I sat in a chair and did everything I could to keep my lunch in my stomach.

The next day at Children's we were told this was a rare, isolated event that probably would never happen again. We were confused but glad to hear that it was just a once in a lifetime thing.

A few weeks later, we saw her regular cardiologist though. After reviewing all the tests, he told us the alarming news that Jaycee had WPW. She had an extra electrical pathway in her heart. When it fired, her heart would do the same thing. It may be 2 weeks or 10 years before it fired again but it would happen. Her age of onset and tachycardia was unique. But the bombshell was that there is a risk of sudden death with WPW.

We have gotten a lot of bad news with Jaycee over the years but that was shocking. I cried and cried some more. Fear tried to creep in. I understood that the possibility of her dieing from it was small but it was still there. Every time I left her, there was that nagging thought that started with "What if...." It was a challenging time. If I would have listened to my fears, I would have quit my job and stayed with her 24 hours a day. I tried my hardest to stay positive and not worry. But I knew it was affecting me. I could tell it the most at work. I would be in a session and find myself struggling to keep my mind focused on what I was doing. I felt like a crummy therapist then.

Four months with this diagnosis felt like an eternity. We arrived at the hospital for her heart ablation that would "fix" her WPW. The doctors did their jobs. They were confident they got it and she was fine now. There is a small percentage of kids whose WPW heals itself and comes back. If we made it a year, we were good forever. I felt so relieved to have it over. I was relaxed for the first time in months. I figured she was fine.

A month after the ablation, we saw the cardiologist for her follow up testing. When he walked in our room and shut the door, we knew the cardiologist had bad news. Sure enough, she was in the small percentage of kids whose WPW came back. We had to wait a few months before doing another ablation. The waiting and wondering would have to continue.

August couldn't come fast enough. The ablation was repeated. The electrical cardiologist assured us that this time it was over. I was relieved again. The tension that had built for about 7 months was finally over. I can't fully describe how WPW affected our lives during that time. We tried to avoid sick people to keep her healthy for her ablations. We tried to avoid things that would increase her heart rate like carnival rides. That meant we didn't go to our usual state and county fairs. The emotional toll on me was indescribable. There was constantly a battle between having faith that things would be ok and being fearful of something that might happen.

It's been a year later; I can say that 2011 was the most difficult year we have had with Jaycee. (There were other things beside the WPW.) But we made it. It's one of those situations you find yourself in when you must rely on God to get through the minutes and days. So, here's to Jaycee's heart health for a year!