"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -Isaiah 41:10
When you live in the inpatient therapy unit at Akron Children's Hospital, you find that you don't have much control over things. Most decisions about your child's care is made by doctors and nurses. Suggestions are made about what time your child should go to bed and wake up. You must get permission to take your child to the toy room, on a walk, etc. You may not get your own water or take your food to the refrigerator. You have to ask permission for the nurse to give your child Tylenol. There is nothing to do except feed your child and play with her if she is not in therapy, eating, or sleeping. The hospital staff do a great job taking care of their patients. My problem is that I am a rigid mom of five and am used to caring for my family by myself.
Today was frustrating for this rigid mom. It seemed like things started 'going wrong' from the moment I tried to wake Haven. First of all, because her feeding tube was irritating her throat all night she didn't sleep well Monday evening. As a result, she did not want to wake up at 8 for her 9 a.m. therapy session. Secondly, I had a disagreement with two doctors about Haven's feeding tube. Basically Aaron and I feel it should be removed, but the doctors want to spend several days cautiously counting her calories, measuring fluid intake and out take, etc. before we remove it. Their argument is that they don't want to remove it prematurely and then have to put it back in for whatever reason. I get it. Really, I do. However, Aaron and I have noticed that Haven's belly looks quite large due to the fact that she is eating large meals and getting a full day's calories through her tube feedings. Thankfully someone thought it was a good idea to check Haven's weight today. Guess what! She's put on FOUR pounds in about a week. A week!!! Guess she's getting enough caloric intake. Thankfully, the new psysiatrist in charge this week decided to discontinue all tube feedings! Praise the Lord! The bad news is that they feel the tube should stay in for now. Bummer!
Next, we were met by a new physical therapist (PT) and a psychologist (why is she even involved in the first place?!?) today who were obviously unfamiliar with Haven and the significant stranger anxiety that she experiences. In addition to the two new personnel working with our nervous daughter, Haven was introduced to the therapy unit on the second floor. This was the first time she has gone off of the seventh floor for therapy. I'm no psychologist, but even I know that's a TON of changes for a extremely excitable toddler. In defense of the therapist, I'm sure she is very good at her job. She seemed to have a plan and knew how she wanted to implement it. In addition, she did a fab job at keeping her cool. I'm not going to go into too many details here, but let's just say that her hour long PT session was a non stop screaming, crying, snotty, slobbering, sweat drenching, ugly mess.
As we were heading back to our room following PT, my intention was to put Haven in bed, shut the door and cry it out together in private. When I arrived in Haven's room, I was so blessed to see one of our amazing home school friends waiting for us. Thanks, Karla!!! I should have known that in our despair God would send a comforter. That seems to be how He is caring for us best these days. Karla spent the afternoon with Haven and me, and I was so grateful to not have the afternoon of silence to listen to my own thoughts and self doubting about how I handled the morning.
Later in the afternoon, I learned that Haven's target fluid intake is 30 ounces per day. Once again I was discouraged. I explained to the nurses and doctors that NEVER since we've had Haven has she EVER drank that much fluid in one day. None the less, the target was set at 30 oz. Again, I felt my blood pressure rising and that familiar out of control feeling that has been creeping up on me for the past week. Incidentally, like most toddlers, Haven proved me wrong and drank all 30 oz. of fluid today. Don't I feel like a fool!
There were other 'moments' today. I prayed often for help dealing with my frustrated attitude and that I would be a great advocate for Haven.
Once again our OT session went smoothly. Wow! I'm going to miss Haven's inpatient therapists once we move to outpatient therapy.
Speech continues to improve little by little. We are all very encouraged. Haven spoke a few new words today and continues to work diligently at perfecting the word no. I believe, Nelson family, that is a direct answer to our prayers.
Do blessings still come during out of control, crazy days like today? I believe they do! Today's blessing was knowing that even when I'm obviously not in control, God is! He has this entire situation in His capable hands and He's not going to give me more than I can handle. Thank goodness! I have a great deal of praying and meditating to do tonight about my attitude and witness. I so desire to honor Him throughout our time at Akron Children's Hospital, but on days like today I feel like I am failing.
Please pray for Haven as she prepares to work with new therapists in the near future. It looks like we'll be moving onto the next phase of recovery sooner than we thought...more on that later this week. Pray for us as we prepare to transition to the Ronald McDonald house in the near future. Lastly pray for our four children at home. This has been very difficult for them, especially our little Levi. Pray that they would have peace in this situation and that Aaron and I would know how to help them during this difficult time.
May His name be praised!
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