Thursday, May 26, 2011

Too Naval Hospital or not to

Abe has had diarrhea on and off since Saturday evening, well subsided today. This week has been so stressful. he just wants me to hold him all night and day. I took him to Naval ER Tuesday since peds had no openings and urgent care felt he was too complex for them. His physical exam was great, alert, not fussy, stable vital signs and fever so we went home. At the EFM meeting he was so cranky but we stayed there any ways. he calmed down on the car ride. He saw a PNP at Naval on Wednesday, my birthday, and felt it was beyond her expertise so off to Seattle ER we went. They also felt his physical examination was great but wanted additional testing of his stool like for c-diff and rotovirus plus stool culture if not already ordered. We really miss Dr. Gist and with Dr. Wilde retiring this summer I think it is time to switch him to a pediatrician outside of the Naval Hospital. Yes it is convenient, has xray, pharmacy,lab ect however all this is usually repeated at Children's any ways so why put my kid thru extra painful medical interventions if Seattle Children's repeats it any ways; like chest x-ray, blood cultures, ect. I got concerned about his VP shunt since he went from extreme constipation to diarrhea. He has been a little more clingy and irritable but other times is laughing and giggling. He might be losing weight too. Tricare would need to approve him getting switched to a provider in town if we stay prime. I really feel he needs a consistent provider or group of providers that can handle the level of care he requires. I don't expect them to manage everything like VP shunt, chronic lung, hypothyrodism, potential seizures, CP,ect but feel comfortable caring for him and feel comfortable making primary care decisions with parent input and make referral and write prescriptions. I asked for a few things at primary care for Abe and provider refused and my requests were basic things: rectal Tylenol since he has been so irritable and I can't get oral Tylenol in and triple diaper mix since the diarrhea has made his bottom red. I did not think my requests were too much to ask however we saw a PNP and not Dr. Wilde. As a former FNP student I always thought NPs were more likely to listen and order what the patients need unless it is an usual request but not in this case. We made a long trip to Seattle Wednesday, no hospital admission which I am thankful for. I guess it was better to have him checked out my experts that be at home not knowing what is causing his diarrhea. If he was a healthy 2 year old I probably would have not brought in to ER 2x this week but he is not a typical 2 year old and I would hate to miss something urgent. If this post does not make sense he has been waking up a lot more than usual and just wants me to hold him most of the day and night. I don't know how many times this past week I have woke up holding him. I only have a few respite hours left for this month. When he is 100% better I will be taking him back to the pool however him drinking the pool water or eating the dirt on the beach may have caused his problem. Yes I let him lick a toy that had been in the dirt on the beach. Who knows what all was in the water. We were searching for sea creatures. He enjoyed touching the sea weed but not the crabs. Once I mentioned "do they bite" he did not want to touch them. I think he touched the sea weed because I did. I was scared to touch the crabs. he won't go to sleep and after midnight. Still waiting for speech therapy referral too. I spoke with Children's over month ago about it and they want him to have weekly speech therapy. Oh well guess it will have to be added to IFSP after the fact since the meeting is next week and I doubt we will have the referral in place. It is hard work being a mom but throw in special needs and the job description increases.

Friday, May 20, 2011

Video script

this is a rough draft of what I might include in the video.We still need someone to help us do the video since it requires the people to be in the video and Glenn is out to sea. Deadline is May 30 so we would need to get it done this week.
Video part:

Introduction: Hi ABC we are the Goddard family. I am Karen I am 37 (well almost, a few more days until I am), this is Abraham he is 2 years old and Glenn also 37. Glenn is currently deployed with the United States Navy on with (name of boat) I left this out on the blog for safety reasons.

Two years ago Glenn and I moved back to our home in (city, state, again left out for safety reasons on blog). I was six months pregnant at this time. We had no idea that I would go into full blown labor at 26 weeks gestation and have to be faced with decisions to about continuing life support for our son Abraham. Abraham was flown to a hospital with the neonatal intensive care unit. His breathing tube dislodged so he was oxygen deprived which caused brain bleeds and later the development of hydrocephalus and cerebral palsy. He has had several surgeries and hospital admissions.

My family is unique because are a family that has faced life and death situations with our son from the first day of his life. In addition we are a military family which means my husband has been away from our home for fifteen months. This has left me here alone in Washington to care for our special needs son, getting him to and from his appointments and therapies, manage our home and the difficulties it has while Glenn is away serving our country for the Navy.

When Abraham came home from the NICU Glenn did some volunteer work with the State Liquor patrol to monitor for people that are driving under the influence. I help women learn to care for their skin and make up application tips at no cost with Mary Kay Cosmetics.

My family has over came adversity by making our home

Our life would improve if our house is made over because I would no longer have to worry about how a wheelchair and other medical equipment will fit in our home. In addition it would give Abe the freedom and space he needs to explore his environment so he can develop.

Monday, May 16, 2011

Proudest acheivement for home make over application

Prior to Abraham's extremely premature birth, I would have described earning my Masters in Nursing and Glenn's advancement to Chief in the United States Navy as the two things we are most proud of. Now achievements are measured in milestones and periods of no inpatient hospital stays. These milestones including: living through the airlift to Madigan neonatal intensive care unit (NICU), enduring hours of CPR on arrival there, coming home for the first time after one hundred and seven days in the hospital. Abe over came a lot before he even left the hospital but he still had much to learn. He learned to breastfeed after months of tube feeding, lift his head, roll and now army crawls. Abe is also learning to communicate through simple signs and words. These moments fill our hearts with joy and pride that our miracle son survived. We are also proud that we stayed strong as a couple during the roller coaster of emotions and medical status changes that are part of NICU life. Our desire to work together as a couple to provide the best life for our son is our proudest achievement. In order to provide for our family Glenn has spent fifteen months away from our family serving our country in the United States Navy. I have been here to manage the house, the numerous medical appointments and therapies, the pets, and the upkeep of the house. Our proudest achievement simply stated is making our world a place where our son can grow and thrive.

Wednesday, May 11, 2011

MRI results

I called last week to get my results. I actually spoke directly to the urologist. The MRI did not show cancer but I do have a dilation of the urethra which might require surgical intervention if bladder infections are too problematic. The dilation can cause urine and bacteria to collect there and cause an infection that does not always show up on UA or cultures. Hopefully if I have symptoms I will be taken care even with negative UAs and cultures. I prefer to not take antibiotics all the time but I really don't like bladder infection symptoms. It is especially difficult when you have a small kid that does not walk. I have been better at drinking water and not holding it even if that means I have to unload a stroller on the ferry and go upstairs. I am so happy no cancer. I worried so much about how would Glenn care for Abe alone if it were a fast acting cancer but I don't have that stress now. I will know further details if I truly have a heart shaped uterus at my appointment in June. If I don't have a heart shaped uterus then I am not sure why I delivered Abe at 26 weeks gestation. I took him swimming today and he loved it. Believe it or not it is 9pm and he is fast asleep in his crib. I think the days he does not nap he actually sleeps better at night than the days he does nap. There is no hard and fast rule that every 2 year must nap at the exact same time for the exact same number of hours. Every kid and situation is different. I bet he is so tired from swimming. Too bad I can't take him every single day but he already has a lot going on. Still waiting on speech therapy referral since Neurodevelopmental ARNP wants weekly instead of monthly.

Tuesday, May 10, 2011

Nominate information

For blog readers that don't follow us on Face Book. If you want to nominate my family for Extreme Home Make over please see the following:

The producers of ABC's "Extreme Makeover: Home Edition" are seeking people involved in the military whose home deserves an extreme makeover. Interested military families or people who wish to nominate a military family should e-mail a short description of the family's story to The e-mail should include the names and ages of household members, a description of the family's challenges, an explanation of why the family is deserving of a makeover or is a positive role model in the community, photos of the family and their home, and contact numbers. The deadline for nominations is May 30, but people should send submissions early. For more information on the application process, visit the ABC website.