A Bit Of Good News

These are pictures of Lizzie in her new bath chair that we prayed for! Becca loves to help give Lizzie her "tubby".

A Bit Of Disappointing News

Last week Lizzie had a study performed on her called a pH probe. They put a plastic coated wire down her nose, through her esophagus, and into the top of her stomach. The opposite end was attached to a metal box thing as you can see in the picture. We had to leave it in for 24 hours while we went through her normal daily routine. The wire and box recorded the pH levels in her esophagus to help determine if it is GERD (gastroesophogeal reflux disorder) causing her to vomit.

I went this morning to get the test results. The doctor told me that the pH levels remained well within normal range. This means that she does not have GERD and the Nissen surgery that I described earlier will not help her. It will keep food from coming all the way up, but she will still wrench and dry heave. He told me that she would be even more miserable than she is already. He also said that it is a brain issue. Something in her brain randomly triggers causing her to vomit, or so was his best guess.

I asked the doctor what to do next. He said that he would let her other doctors and specialists know, and someone should give me a call back in a few days. This did not settle well with me. I cried for about half an hour. My always optimistic husband was a big comfort to me.

Our next plan of action to talk to her neurologist about this issue. I’ve never mentioned it to him in the past because I thought it was a digestive issue not a neurological one. We already had a follow up appointment with him scheduled within the next two weeks to make sure her anti-seizure medication is still at the correct level. I will discuss it with him then.

Please continue to pray for healing. I have these awful images in my mind of trying to send Lizzie off to school one day with a vomit bucket. I just don’t think that would work. Or trying to go to a restaurant one day with her and having her vomiting set off a chain reaction among all the costumers and wait staff. (Okay, that one actually makes me chuckle a little. I have to find some humor in this or else I’ll loose my mind.)

Please pray for peace in our hearts as we trust the Lord in this situation. He has taken care of so much for us already, and I know he can handle this one too.

Please pray for wisdom as we continue on seeking solutions.

The Nurse Thing

People ask me all the time how the nursing thing works. So, I decided to explain in this post.

We have 12 hours of nursing care for Lizzie everyday, seven days a week, and access to extra hours when we need them, like if we are going on a date night or out of town or something. So, when David and I go out, just the two of us, we leave four people in our house, Becca and her sitter, and Lizzie and her nurse. Our home is always full, and I kind of like it that way.

No, Lizzie is not portable at this point, meaning I really can’t take her places with me. This is due to three main reasons.
1. She has to be cathed and fed every three hours.
2. Her reflux requires us to hold her still and upright for at least 30 minutes after each feeding. So, by the time we cath her, feed her slowly, hold her upright for that 30 minute window after her feeding, pack her up and leave . . . well, it’s practically time to start all over again.
3. Her trach makes her extremely vulnerable to infection.

I do on occasion take her to church during the third service on Sunday morning. However, the timing fits in between cath and feeding times, and I only take her when it is not cold and flu season. Our church is really unique in that they have a classroom designed just for special needs children. This is where I put Lizzie, and her nurse stays in there with her to help her play and tend to her needs.

It is really sad that she does not get to go to many places. And as she gets older and more aware, she is starting to realize this fact and gets board and frustrated. For this reason, it is very important that Lizzie’s nurses do more than just come in to do the job and leave. They have to be caring and find creative ways to stimulate her mind and keep her happy.

Most of the nurses from the nursing agency that come to my house do a great job at this. We have one nurse, Deborah, who is here four and sometimes five days a week, and a couple of other regulars who fill in on the days that she is not here. Deborah is by far Lizzie’s favorite nurse, and I call her my personal Mary Poppins. She is a really neat older Christian lady who not only takes wonderful care of Lizzie, but also encourages and prays with me. I turn to her a lot for advice not only on Lizzie, but also about everything from organization to politics to life. The Lord sent her to us at just the right time, and I am extremely grateful.

What if a scheduled nurse can’t come that day, like, they call in sick that morning or something? Well, one of three things happens on those days.
1. If there is enough advanced warning, like a couple of days, the agency will call one of Lizzie’s other regular nurses to fill in on that date.
2. If none of her regular nurses can sub on that day, they will call a different nurse, and send them to our house a couple of days ahead of time to train on Lizzie’s care. Then they will come back on the available date.
3. If there is not enough advance notice, the agency will either do option one or two above minus the training time, or I can choose to not have a nurse that day. At which point I call my family and friends to come take care of Becca while I do Lizzie, because I can’t do both at the same time.

So, what do I do if a nurse does not do a very good job? Well, the nursing agency we use is also very caring and understanding. All I have to do is call them and ask them to please not send that nurse to my house again. And they say okay with no questions asked, or they will listen and take into consideration my concerns about a particular nurse is I have any.

What do the nurses do all day at my house? A lot! They take care of Lizzie as much or as little as I need them to. Meaning, they can do everything for her or just assist me. This way I can leave the house to run errands or work a side job, or just stay at home all day to care for and play with my girls. It’s kind of like having my own nanny. The nurses also keep track of and maintain Lizzie’s medical equipment. Deborah, aka Mary Poppins, even does Lizzie’s laundry and vacuums and dusts her room!

It really is a great set up, and there is no way I could do it without them!