Nine weeks ago we came home from the hospital exhausted and fed up with our experience at Kaiser in Hollywood. I was done. I had had it with the lack of good care and lack of a coordinated effort to help my daughter. She was my daughter after all, I could get up with her and feed her in the middle of the night if she needed it, couldn't I? I could bath her and take care of her, she was and always will be my little baby, right? Knowing that we would have help from therapists and in home health care, dietitian and speech therapy and the list goes on. We would be fine!
Low and behold after almost a week at home the phone hadn't rang from all those promised services. Where was everyone? As it turned out our discharge paperwork was never sent out of the hospital. No one knew we even existed. Shortly thereafter ensued the plethora of therapies, doctor visits, etc. all but the much needed speech therapy and dietitian intervention. Jaimee had been receiving daily therapy and review of her diet in the hospital. She did after all pass the swallow test and was sent home on a pured diet. Well after 8 weeks, it finally took filing a formal complaint with Kaiser to get anyones attention. That along with the 5 page letter I sent regarding our actual stay at Kaiser (perhaps I'll share that another time).
So we went for the speech therapy evaluation about a week ago and the therapist didn't think she needed her feeding tube any longer (G tube). So a new swallow test was ordered for mid July. My nurse and I decided that that just wasn't good enough. We had been waiting weeks for help. I alone had been pushing Jaimee to see how much she would let me ween her off the G tube. Each week she ate a little better, her tastes came back, her jaws got stronger and as of last week I had given her only one feeding in the G tube (She started with 5 a day the amount needed to sustain her daily caloric intake).
It wasn't easy, feeding Jaimee in the beginning was painful-it took literally hours to get through one meal of 250 calories so I had to split up that one meal, half in the morning and half at night, each one alone could take an hour. Eventually she could eat all of her one meal at one setting within 30-45 minutes so onward I continued to ween her and add back in more food. Today, I am happy to say she is G-tube Free and 100% on solid foods!!!
She finally got that speech therapy appointment, the swallow test was ordered, after two sips of soy milk, two bites of applesauce and one bite of a cookie all with barium I might add, she was considered 150% NORMAL! No weakness whatsoever! TRIUMPHANT was all that came to me over and over again. I had never felt the full effect of that word more than at that moment. My adrenaline was pumping, tears began to flow, Jaimee and I rejoiced in our success. We then walked across the street to see her G.I. doctor and out came the tube in one quick snip with the scissors and we were on our way. I was so happy to share all of this with my cousin Shelby who was visiting from Utah and also with Madi her daughter, it was a great day!
I started this post the day after this event about ten days ago and I can only say there has been even more improvements. Jaimee can prop herself up on her forearms and then push up on her hands into a sitting position. She can't stay up for more than a few seconds on her own but she is making consistent improvements each day. She can not only hold her cup if she drops it she can now find it and pick it up. She is now saying "AH" and "M". She is learning to communicate better by nodding her head for yes and side to side for no-the head control is a bit difficult but I see some improvements there too. She can raise her hands for "up" and when she is hungry she just makes chomping gestures with her mouth which is adorable. She is also learning to walk better. Each day we walk her up and down the hallways from one place to another. She really loves to walk. She struggles and it will be some time perhaps a year before she gets the hang of it but she is learning to keep her feet flat right now and gaining strength in her legs. She can stand on flat feet for about a half a minute with little support. Sitting up is becoming old hat almost. She can't quite do it all herself but if you hold her ankles or legs on the bed it's a cinch. She is learning still to keep her legs down when she tries to sit. She can sit in Jeff's recliner and just hang out watching a movie. When you look at her you can't see that there's anything wrong with her at all.
Yesterday Jaimee was given her new wheel chair along with a gift of Becky the Par-Olympian friend of Barbie. She sits in a wheel chair too. Jaimee seems to be getting use to her new chair and we couldn't be happier to have her up higher than her car seat on the floor-now she sits at the table with us for breakfast, lunch and dinner. She has a whole new found freedom and much better posture-her chair is even sparkly blue but we might need to put a little girl power into it with a little pink somewhere. HUGE thanks to the Rice family for the many weeks of letting us borrow their jogging stroller-you are the best! We love you guys!
Jaimee has made so many great improvements that as of next week she will be discharged from Kaiser In Home Health Care and sent to out patient therapy. This means progress for her and more driving for Mom but I'm happy to do it. I want to thank George, Lori Ann and Tammy for doing such an excellent job with Jaimee. For using their talent and gifts to reach Jaimee, push her and make her work hard for each and every improvement. George and Lori Ann have withstood all of Jaimee's flailing arms and legs, felt every slice and dice to the body and other tender areas, took every slap and kick to the face and gut without complaint (not much anyway) and just loved her better. Thanks again to our friends at Kaiser Home Health-you're the best. Lori Ann, we will keep praying that the doors will open for you to pursue your education and become the Pediatric PT you were born to be! Tammy you helped me so much with Jaimee and reassured me in all my nursing efforts with her. George, there's nothing better than having a friend from church show up at my door to be my daughter's therapist it was a joy to have you around-thanks for passing on your "toy-junk" (wink, wink).
We have some special prayer requests as this month will be a pivotal one in which many decisions will need to be made over the next month. We will be moving to Simi Valley in August and will need a home to rent. Our one and only working car broke down today and we are trying to find a used car that will fit our 6 person family, Jaimee's wheel chair and our "stuff". All of the efforts to get the care Jaimee has received so far will all need to be moved to all new Doctors, Nurses, Therapists, etc. etc. and we are praying for an easy and smooth transition as we move her care to Simi Valley/ Woodland Hills Kaiser. For Jaimee we are praying that strength continues to come to her arms and hands as she learns to sit up on her own and learns to feed herself again. Thank you all for taking the time and effort to pray on our behalf. WE FEEL IT!!! We couldn't have felt so sustained otherwise. Love and blessings to you all and your families.
Mardee
