Saturday, August 16, 2014

Torn Heart

Yesterday I had a doctor's appointment for the pain I had been enduring on and off the past several days that is also accompanied by nausea and vomiting.  It most likely was a kidney stone because the pain comes and goes, causes other urinary symptoms including bleeding then completely goes away. Think about this a large piece of a hard sharp, most likely not smooth, calcium carbonate deposit  scraping the side of a tiny tube, ureters as it moves in the urinary system, yeah that is kidney stone pain. Worse than labor in my opinion because my labor was not very painful (non medicated birth for Luke) except the vacuum extraction part but it was short lived.   My urine analysis showed no evidence of a UTI or kidney infection. I had pain for several hours so did not see Abe. My heart felt torn because it was a nice break away from the hospital but I missed Abe. Luke and I took a nap once my pain subsided, it was quite, dark, comfortable and peaceful compared to hospital life. After I felt better and had an appetite back Luke and I enjoyed Taco Time for dinner and a trip to Costco to get ready to eat foods. We also did some laundry then loaded back up to head to Seattle. Since respite was scheduled today Luke and I enjoyed another day to take a break and I was pain free. I took time to make a real breakfast, well scrambled eggs and toast. Then we went to Green Lake park and Starbucks. Luke ran around for awhile then we kept on walking. We walked the whole length of the park and an event was going on. I was super excited to get Luke a beach ball that will entertain him for hours while in the hospital so he can burn off some energy. We also entered a Spring free trampoline drawing. It would be super cool to win this. Although Abe can't walk without assistance he enjoys bouncing on non crowded trampolines. Luke would enjoy it too. Only 2 families win per year so doubtful but you never know. Home Depot gave us from wood kits, Gymboree some balls and bubbles and Seattle Children's a first aid kit. We did not hit every booth because they were closing down but we went to a few that is exactly what we needed right now, some bubbles, a few play balls and a reusable grocery sack (by the way Seattle charges .05 to .10 per bag). It was a nice break from the hospital and honestly I enjoyed being away from the hospital.  Walking around Green  Lake brought back memories because when I moved to Seattle 10 years ago I would roller blade, walk and ride my bike there when I had time. It was a great place to do this. I wish Kitsap county had a similar park that is good for bike rides. My heart is torn because my 5 year old was in the hospital and I enjoyed being able to nap Friday and being at the park today. I also know that to be the best mom and caregiver of a special needs kid you must care for yourself. I want to sign up for a 15 minute massage here but I don't typically have respite care on the days and times it typically would be available. Yesterday respite came for only 4 hours but today she came all day so it made it a little more bearable for me to be away. I was in too much pain to be driving back and the Flomax the doctor gave me can cause drowsiness so I wanted wait several hours to drive back. Flomax is used for prostate problems however it also relaxes the urinary system so kidney stones can pass easier. I have only required one dose so far and none of the stronger medication or antibiotics. Abe is doing pretty good but is exhausted. Today he had only a few hours of therapy but is very moody and very tired. He is being weaned off the Baclofen. Tomorrow is his last dose. We are hoping he won't need it any longer because it can cause constipation, drooling, foggy brain and many other side effects. He has been pedaling a trike and the therapists are all impressed with his skill with this even with the casts on his feet. He has casts on his feet to lengthen his tendons. He seems to be tolerating this without difficultly. He loves the attention from the nurses, volunteers and therapists. We are getting both kids car seat checks next weekend since kids grow and car seats might not always be appropriate. I have been told in Arizona and Washington 80% of people improperly install and use car seats. We get these checks so often at Naval Hospital Bremerton that was we have been teased about becoming car seat specialists ourselves. Abe is probably close to out growing his car seat so he might need a special needs one. I figured the best place for a car seat check for a special needs kid with mobility impairment, CP, is Seattle Children's. Abe is finally 35 lbs.  We are also having Luke's car seat checked since his last check with in April and he has grown. I would recommend other parents get car seat checks as well. It is a free service and better safe than sorry. I am thankful Glenn gave me a break yesterday evening and today he took a break today while Luke and I went to the park. I am also thankful that Abe seems to being doing well, for additional respite hours and for friends. I will update more most likely Monday or Wednesday.

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