The tapestry of the life of a medically complex family

Archive for May, 2011

Children who wait

Have YOU ever thought about adoption from foster care? It isn’t always easy but I highly recommend it to anyone who is considering adoption. There are challenges with the children, the workers, the process and within our own lives. BUT it is the single most rewarding thing you can do if it is in your heart to become a parent through adoption.

The US Department of Health and Human Services compiles statistics on foster care and foster adoption for every calendar year. Last year’s data indicates that 115,000 children were waiting in foster care to be adopted as of the last day of Fiscal Year 2009  http://www.acf.hhs.gov/programs/cb/stats_research/afcars/trends.htm . Although 57,000 children were adopted during FY 2009, nearly TWICE that many live in a non-permanent placement awaiting placement with their forever Mom and Dad.

Children who grow up in foster care suffer repeated upheaval of their home-base & other significant losses. When these children age out of foster care, even if they are dedicated enough to go to college, rarely have a place to call home for Thanksgiving break or a winter holiday. Is it any wonder that the statistics show that greater than 3/4 of them “fail” in future life challenges- going to prison or dying young? Recently,  former foster children have overtaken war veterans as the single largest population in homeless shelters in the State of California.

If it is in your heart to foster a child, or to pursue adoption through foster care, please go to http://www.adoptuskids.org and click on the link to find information on foster-adoption in your State. “You don’t have to be perfect to be a perfect parent.”

Baseline at Basekamp, 5-22-2011

DATESTAMP: 05-22-2011

Meds across the Ward:
Pulmicort, Hypertonic Saline  5% (blend of 3% & 7%), Albuterol PRN,  Combi nebs PRN, Atrovent PRN, Miralax, Prevacid, Nexium, Singulair, Vitamin D, Ferrous Sulfate (Iron), Loratadine.

TRACHS [change]:  Tav  3.5 Neo [Tues];  Adrien  4.0 Neo Shiley [Wed]

Scheduled nebs per day: 12

Average nebs per day (past week): 13

Nurse shifts (last week): Overnight: 5; Day: 4.5; Evening: 2; Full days alone: 2

Oximeters: 2, working through skin breakdown and burn issues

Mist Compressors: 2

Neb machines: 3

Suction machines: 2 portable

Oxygen tanks: Liquid: 2 lge., 80% Tav, 90% Adrien

Ambu bags: 2, 1 in nursery & 1 for travel

Medical Cribs with climb guard toppers: 2

Doctor appointments scheduled this week: cancelled 1, 2 @ CHB North

OT: 2×45

PT: 1×60

SLP: 0

Nights requiring oxygen past week: 0 Tav ; 0 Adrien

3 for 3

Sometimes life looks bleak and things are over-whelming when reviewed in their entirety. Other days the smile keeps spreading and won’t leave your face. So goes parenthood and this week has become one of the latter types of weeks.

All 3 of my kids have had sleep studies in the past month. My daughter with a trach went first and had a difficult experience with the monitors but a wonderful study in terms of positive data on her sleep-breathing patterns and conditions (as expected). The sleep pulmonologist said her study was “completely normal” and “amazing for a child with her birth & health history”. The day of results was a smile day for sure.

With my youngest daughter, her sleep studies have always shown concerning results. She had her first study in June after she turned one, resulting in emergency scheduling with an ENT & having her tonsils & adenoids removed. A repeat study that summer noted continuing obstructive and central apnea, so a 3rd was scheduled for titrating CPAP just after her second birthday. CPAP seemed effective for a year and then the bags under her eyes returned, warranting another sleep study- whose results of “central apnea” were most concerning of all. Finally got in to see the sleep pulmo specialist with her and he ordered another baseline study. He reviewed her results soon after the study and said the most beautiful words to be heard by a parent: I would not call her pauses “central apnea”. He said they were pauses during her transition from day-time breathing to night-time breathing patterns. He notes there seems to be good recovery and once she makes the transition, she breathes normally until the transition back to more rapid awake breathing. Supposedly, a majority of preschoolers breathes this way so it’s not even just because she was a preemie! HURRAY #2!!!

Last, but not least, was my son with a trach. He has been having such a difficult time maintaining oxygen saturation at night that we did concurrent oral steroids, oral antibiotics [abx] & an inhaled antibiotic during the month before his sleep study to try to bring him back to baseline. As the steroid course took effect, he improved. The oral antibiotic course lasted two weeks and without side effect. The inhaled antibiotic [TOBI] improved his sleep oxygen saturation back to over 95% on almost every night of that month- as opposed to only 2 nights the month before. He had an occasional low oxygen night since the TOBI ended but I was confident going into his sleep study that he was remarkably close to his old baseline. The sleep pulmo set up the study in the ICU and placed a vent at bedside to titrate in the event he had any sign of needing it. And the results: AWESOME study. NO vent. NO desaturations. No unusual sleeping/breathing patterns. The sleep pulmonologist wants us to be sure to treat any desaturation events as a sign of illness that should be treated to keep him at this new baseline.

3 for 3- absolutely amazing!

Location

It is amazing to me how some minds work. I received a plea from a “caring grandmother” to consider adding another child to my family. I considered it, looked at how our family was doing, where we were headed, and whether she would fit. I said yes because I want more children. I said yes because my children are doing well. I said yes & she discussed this child with my children the last time she visited. We spoke of her & including her several times.

Then the games began. Sudden avoidance of phone calls, no calls back. I found out yesterday that someone who is a distant relative, but who lives nearby to the grandmother, has stepped forward. A single man in his 40s with no other children is going to try his first parenting with a 24-week preemie with multiple IVH resulting in a shunt. I honestly hope for the best for him- the child is most important in this. But the game played by the grandmother, it’s not for me. I will leave her a message- short, clear – telling her that games are not to be played with us, especially not my children.

I hope for the best for the child & her new family, but we will never know her. This baby has helped me to learn that I am ready for more children. She has helped to weed out friends who are un-true. She has exposed the game of her “enabler” family. Quite a lot of work for an innocent child.

Awaiting our next chapter.

Apple Blossoms 5-14-2011

Saturday we went to the farm where we will be getting fruit & vegetables every week. They were having a “Meet & Greet” for all of the people who have signed up for a farm share. The kids enjoyed running in the apple tree orchards but especially loved meeting the farmers new chocolate lab puppy, ‘Bamboo’. Hoping we enjoy many more trips there this growing season.

Baseline at Basekamp, 5-18-2011

DATESTAMP: 05-18-2011

Meds across the Ward:
Pulmicort, Hypertonic Saline  5% (blend of 3% & 7%), Albuterol PRN,  Combi nebs PRN, Atrovent PRN, Miralax, Prevacid, Nexium, Singulair, Vitamin D, Ferrous Sulfate (Iron).

TRACHS [change]:  Tav  3.5 Neo [Tues];  Adrien  4.0 Neo Shiley [Wed]

Scheduled nebs per day: 12

Average nebs per day (past week): 16

Nurse shifts (last week): Overnight: 5; Day: 4.5; Evening: 2; Full days alone: 2

Oximeters: 2 (down from 3)

Mist Compressors: 2

Neb machines: 3

Suction machines: 2 portable

Oxygen tanks: Liquid: 2 lge., 80% Tav, 90% Adrien

Ambu bags: 2, 1 in nursery & 1 for travel

Back up trachs, suction catheter, HME locations: “nursery”, “study” & “kitchen”

Medical Cribs with climb guard toppers: 2

Doctor appointments scheduled this week: 1 sleep study

OT: 2×45

PT: 1×60

SLP: 0

Nights requiring oxygen past week: 1 Tav ; 0 Adrien

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