Tuesday, May 31, 2011

Never ask. Insist

Evie, at therapy today, ate over and above what she has been eating for the last several weeks, and for the First time today, I understand why. The therapist does not ask if Evie wants a bite. Our therapist simply says "Open your mouth, take a bite". Amazing how 6 words change my feeding technique at home. I usually ask "Do you want a bite?" and she will ALWAYS, shake her head "no". Well, duh, Mom, don't ask. Demand. not force, but Insist. It made a total difference. Throughout the course of the day, She ate 2/3 of the baby food we gave her. She also played with 98% FF turkey slices, and fed that to the dogs. She also took a sip of water, when I said "Take a drink". I was not mean. I did not make her cry. But I did insist and did not take "No" for an answer. It was not an option. Non-negotiable.

We are planning on taking Evie to Baylor's feeding clinic as soon as we can get an appt. But I am hoping that we can somehow manage to help her eat at home, instead of having to be inpatient at a hospital, more than 3 hrs away. The feeding clinic would teach her to eat, and essentially wean her off the tube. We are still a ways away from weaning, but today's experience with food was a huge step for Evie. And for me too. I have learned that if you don't make her eat, she won't. And, unfortunately, food is something she has to have to live. And if I don't force her, then she will always be tube fed.

Its not that I want her to have the love of food that I have, on the contrary, I just want her to eat to sustain her life. I feel that maybe, if she can eat a whole baby food container by th4 end of the week, then maybe by next week, she will be eating 1.5 baby food containers. And the 2, and so forth. It is the beginning of the end, I am hoping.

Please be praying for us, as tomorrow she is going to see an Infectious Diseases Dr about the Pseudamonis in her stool. Pseudamonis is a bacteria that causes ear infections, and trace amounts can be found in your stool, however, the amount that Evie has in hers is very dangerous. And from what I understand, if not treated, then it can get into your blood stream causing toxicity. Too, we are having an issue with lots of retching due to high amounts of bile in her stomach. So, we were told today that her Jtube may have gotten out of place. We rushed her to the ER, and thankfully it is in the right spot, however, that means that we now have to find out the reason why there is so much bile being excreted into her stomach. Please, too, keep in your prayers some friends of mine who went to Rwanda for a mission's trip. They left today, and will be back in a week. We love you, and will always keep you, the masses, informed.

Wednesday, May 11, 2011

Possible Big Changes

So, all of my life I have wanted nothing more than to teach and perform music. I have a degree in music performance. I currently teach a 31 min preschool class once a week, and have worked at a fabulous private school using the Montessori method of teaching. I also teach Children's music at a church in Greenwood, and help lead worship on Sunday mornings. Also, Patrick and I sing in the choir on Sundays at Brookwood. I love it all!!

However, today our home health nurse brought over some VERY interesting information about a 2 yr nursing degree. Apparently, I lack only 3 classes, (one of which is a Speech class that may be able to be substituted for another humanity I have already taken.) Then, I can get into clinicals, which would be for 3 semesters. Amazing. It requires less hours/time than going back and getting my Music Ed degree.

Here are my thoughts:

After having taught at a wonderful Montessori school, I see where I could have big problems managing a public school classroom. Music or not. I firmly believe in the Montessori method, and KNOW that it works. So, I don't really see me teaching in a public school where I have personally observed many problems. I also don't even want to put my own child in a public school. So why would I want to place myself in that situation? I have the deepest respect for public school teachers. Heck, my husband is currently one. However, that does not mean that I have the ability to teach in one. So, that being said, private school would be an option. But, as most of you know, music is highly specialized. There isn't often a chance to be a music teacher in a private school. Once someone gets the position, they often stay there until retirement.

So, this has been my desire all my life, so why change it?

Having a child changes you. Having a special needs child changes you. I have already learned way more about caring for the sick than most nurses know. I can place an NG tube, I can change out a G-Tube. I know how to work most pump systems, I know how to work an IV machine.I can administer meds, I know about special formulas, reflux, most metabolic diseases, and am familiar with many meds and their side affects. All of this any Mito Mom wil be able to do. But, I see what parents go through when living in the hospital. I honestly care about other sick kids. Not to mention I already am in good with the local hospital staff. I need a goal. Caring for Evie has changed my whole perspective on life. I am not only her Mom, but I am her nurse. I am her advocate.

I can be that for other kids too. I know many kids don't have loving parents like Evie does. I know that other kids get left in hospitals to fend for themselves and their nurses are their only caregivers. This breaks my heart. If I can help ease the pain of being sick, maybe I can make a difference, somehow.

Now, I am just thinking about all of this. I haven't decided to take the plunge yet. But if it is in God's will, then I want to. I am praying and seeking him about it.
Its hard to believe that all of my life's goals can change in a day. But, I can still do church choir. I can still sing on Sundays, and make a difference musically too. I am, obviously, a patron of the Arts. And I still can make sure that music is not forgotten. But I can be a nurse too. Please be praying with me about this. I am going to speak with an adviser next week. If God leads me to do this, then hopefully I can get into 2 of the classes I need this summer. Maybe then I can get into clinicals in the fall. One of the good things about being a nurse is that I can work the hours that I want and still care for Evie the way I need to. It is very versatile and flexible. From what I understand, clinicals is 2 days a week, 8 hrs a day. For 3 semesters. I can handle that. I am scared to make this change, but I think it may be good for me too. For a long time now, I have been in a rut and I have not been this excited in a long time.

But, again, still have not made any big decisions. I really do want this to be from God and not from me, so please be praying with me so that God's hand can lead me. Thankyou for your never ending support!

Thursday, May 5, 2011

6th Hospital Visit

We just completed out 6th hospital stay since Evie has been born. That is including the NICU, so, I guess thats not too bad, considering how often other children in similar situations have to stay. Thankfully, this time was very short: a mere 3 day, 2 night stay. We are quite adjusted to life on the inside. We know the cafeteria hours, we know the rules of both the peds floor and the PICU. We have gotten to be very well acquainted with all 3 hospitalists. Its kinda nice walking into a big hospital, knowing she will receive the care that she needs. We even have a schedule that we follow while there. Evie and I wake up, play until 9. I let her play on her own while I eat a cold breakfast, then we meander down to the playroom, and I let her crawl around for a while. Then, we return, and she naps, while I attempt to find something decent to watch on TV. By then its lunch time! After lunch I usually nap, while holding Evie. Then, awaken to watch the most ridiculous show in the history of shows: Lets make a Deal. By then she usually wakes up and we play and read. It wasn't too bad this time. Really.

I just hope someday soon, our life won't be so, day to day. I feel like thats how we have to live. We never know what tomorrow will hold. Its hard to make commitments. Its hard to make plans. We can't go out of town. Heck, on Patrick's days off we usually end up staying at home to catch up with one another. Last week I intended to clean both the laundry room and our back porch. Neither got done. Its not for lack of trying, I assure you. Its just that hard with Evie.

I am so thankful to announce, if you don't already know, that we got medicaid back. It is such a relief. We no longer have to worry about enteral feeding supplies, or lack home health. Too, we don't have to pay out the wazzoo for this past hospital stay. It is just a HUGE sigh of relief.

Well, I am going to go to bed. In my own bed. With my 2 snuggly puppies, under my own sheets. I may just sink into the mattress.