Harper: 1, Pseudomonas: 0
The rare germ that landed Harper in the hospital earlier this week was called pseudomonas….a mean little bug for someone like Harper. After having to research what could kill it, Harper was given clindamycin through IV and it worked to kill this rare germ. She would get something rare! Ha
As I review the last few days in my mind, I have such appreciation for her doctors. We were able to keep her at Plano Presbyterian… a smaller hospital with no PICU (Pediatric Intensive Care). However, Harper was the only patient on her floor until today. She had a nurse all to herself all day and all night. In a PICU it’s one nurse for every two very sick kids. Her team of doctors provided beyond excellent care for her. AND the hospital allowed me to continue to give all her at home supplements during her stay, which although long would have been longer if we were dealing with PICU.
Harper glad to be home…and Daddy glad to have her home too!
Candidly, it just stinks that something such as a bladder infection, minor for you or I, turns into such a difficulty for Harper’s system. We are so very blessed for the team of care we have been able to build for her over the years. It makes my life and hers so much better.
There was so much I didn’t have to do
- There was no having to educate doctors/nurses/staff on her condition…because they already know Harper and they know the complications she has as a result of CDKL5.
- There was no stopping any of her routine supplements including her High CBD Hemp Oil because they know how beneficial it has been for her and they don’t question it. (HempMedsPx)
On Tuesday morning after Harper’s condition became very unstable, I admit I was nervous about whether or not we were in the right hospital for what was going on with her which at this point was still unknown. But I don’t know why I ever doubted her doctors. They kept Harper here to maintain the best level of control over her care. We LOVE them and they very much care about her!
The doctors and the hospital would have transferred her if she had gotten too bad to care for there. And now I can confidently tell you that if we had not been in Plano Presbyterian, we’d still be in the hospital elsewhere with her Doctors have zero control over care provided. Once in a PICU situation, you have to “step down” to a busy floor (with lots of other nasty germs that are hard to avoid) for at least two days, sometimes three. I am so glad it didn’t have to come to that.
Visitors
Being the only one on the pediatric floor, Lily got to come visit Harper every day. We also had a visit today from Shop Thru the Heart founders Kurt Wall (of TX) and Karl Wall (of NC). It’s amazing to think that a random meeting at a hot dog stand in 2012 led us to the place that’s “changing the way America gives” You know that little heart on harpers home page? Anytime you want to purchase anything from online stores such as Amazon, BestBuy, Walmart, etc…if you go through Harper’s Heart to access your accounts you will benefit seizure research rather than google with NO ADDED expense to you!
Treatments for home
We are going gone with deep suction orders and supplies, as well as 3% saline nebulizer treatments. The deep suction is not her favorite but it’s a good treatment that will keep her on the right track because Harper doesn’t blow her nose or cough well.
Petey is glad to have his Mommy back too.
And we keep on going…there is so much to do!
February is Rare Disease Month, and Feb. 28th is Rare Disease Day. If you’d like to help Harper bring awareness to the over 7000 rare diseases (80% of which are caused by faulty genes), consider changing your profile pic on Facebook to one with Harper’s picture. You can copy them from this post or copy it from Facebook. Then, wear your jeans/genes on February 28
I need your stuff!
Harper’s 3rd Annual Hoarding 4 Hope indoor garage sale fundraiser is the last weekend in May. Beginning April 1st (no foolin’) we will have our donated store space open to take in donations for the sale. So get to that spring cleaning and set aside your pre-loved unwanted stuff to help us fund Harper’s seizure research.
