Archives for posts with tag: antibiotic

img_1506As I write this Grace is sleeping in the tent we use for traveling. We are in a hotel room in Minnesota in December. It turns out all the tricks in the world couldn’t keep Grace from having to have one more surgery in 2016.

We had this really normal weekend at home; birthday cake for Graham, Christmas program practice at church for Grace and Graham, Kevin and I at the Civic Center to see the Carole King Musical, the actual Christmas program at church, and seeing the Nutcracker at Hoyt Sherman, complete with an intermission visit from some of our very favorite dancers.

The second we got home from the Nutcracker it changed a bit. We had to get Graham packed to go home with my mom and dad for a few days because Grace was having surgery. I’m very thankful that Graham hasn’t had to be there the day of any of Grace’s surgeries this year. The rooms where you wait with her before and with her after are small. Waiting rooms are hushed. There is a multitude of instructions. I have a hard enough time with my own feelings- as we wash her with the special soap, get her in the gown, answer the questions, sign the forms, talk to the doctor, the anesthesiologist, the nurse, try to get her to be still enough for the blood pressure machine to work, it’s so much.

While we were doing all of that Graham was building a sled for his Curious George and playing outside in the snow. He was hanging out with his cousins.  He was experiencing five-year-old boy perfection.

We drove north yesterday morning. The roads had been plowed pretty well, the trees were beautiful all covered with snow, the sky bright blue. It was crazy cold when we started and just got colder as got closer to Minnesota. So cold that we drove straight through not giving Grace her customary breaks to stretch her legs along the way. Our girl hates cold. Hates it. We did everything in our power to get her somewhere warm quickly.

When we arrived we hadn’t even checked in yet when Grace’s doctor – all dressed in her surgery garb- greeted us. She greeted us so warmly and told us she wanted to get Grace going early so she could get us home. We’d talk with her two more times – once more before the surgery where we showed her the pictures of everything that’s been going on with Grace’s mitrofanoff and we talked through how Kevin and I would take care of Grace for the next 7-10 days as she healed. We saw her again when it was all done when she explained to us what she’d found and confirmed that we were right to not wait to get the mitrofanoff revised now. It wasn’t going to get any better without a surgical intervention.

Grace took her sweet time waking up. The first time she woke she complained a lot. We asked that she be given some more pain medication. With that on board she slept a bit longer, and the second time she woke up she was pretty good. A bit groggy, but she made an attempt to grab some tubing and play. We got her dressed. Got her some formula in her stomach. Got her in her wheelchair and got her to the hotel. She played for a bit. Then we snuggled. She played a bit longer and then we got her to bed.

We have pain meds to get her home. There are antibiotics we will give her for six more days. There’s a catheter in her that we pray she doesn’t pull out. When everything’s had time to heal (it could take about 10 days) Kevin and I have a special syringe that we’ll use to take the catheter out of her and we will go about our normal business.

So for anyone who’s counting – that’s 4 surgeries in 6 months for our girl. That is way too many.   I for one am hopeful for 2017 that brings: health and strength to our girl, less worry and more together time for our boy, and energy, inspiration, and courage for Kevin and I to take our family out in the world and enjoy it.

Joy

 

 

 

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img_3898This week started out to be the first regularly scheduled week we’ve had in some time; Monday morning it quickly changed.  Shortly before taking Grace to her morning therapies and then school she was showing signs of discomfort and then had a tonic clonic seizure.  We gave her some diazepam (valium) to stop the seizure and called 911.  Her seizure stopped and when the paramedics arrive her oxygen level was low so they started on oxygen.  Grace was still pretty out of it and her temp was up, by the time we reached the hospital it reached 104.5.

In the ER they started checking for infection running blood and urine cultures.  She was started on an antibiotic proactively and the blood culture came back positive for MRSA.  MRSA is a staph infection that is difficult to treat, while it can be a skin infection Grace shows no signs.  MRSA is easily spread in hospitals, nursing homes, etc and considering how much time she has been inpatient these past two months she could have easily acquired it.  MRSA can live on your skin and you will be just fine but when it colonizes the infection occurs; in Grace’s case it could have come in through her central line port when the needle was inserted, but there is no way to verify.

There is a chance that Grace’s port may have to be removed if they infection does not resolve with the antibiotics.  Daily blood cultures are taken and if results are negative two days in a row she could go home and continue with two weeks on IV antibiotics.

We have been having extensive conversations with infectious disease, interventional radiology (who put in Grace’s port) and nursing supervisors as there has not been a clearly documented, communicated, or followed port protocol for Grace.  We have found that health organizations have different port protocols and there can be differences within one organization.  We continued to push for clarification so we know when to ask or question if we feel that the protocol is not being followed.  All parties are now in agreeance that Grace should follow the same hematology/oncology protocols used with other children at Blank and we should defer to hematology/oncology or the Blank Infusion Center for her port cares at any time we desire.  Grace again falls in her own category and without standards to base her treatment on we have to push the envelope to establish our own protocols.

Between the home and work needs, port issues, learning about MRSA and conversations around the potential removal of her port that was put in just two months ago we have been a bit overwhelmed.

Grace has been showing signs of more energy and is sitting up and playing on her own.  Based on past sicknesses this is a really good sign.  Now we just wait for the culture results.

Grimes/Johnston EMT staff were excellent and took great care of Grace and we got to meet one of our neighbors who is an EMT.

Kevin

UPDATE 9/29 11:10 – Blood cultures drawn on yesterday are negative!  It will continue to be cultured as will the draws from this morning; if they come back negative tomorrow Grace will likely be discharged Friday.

FullSizeRenderGrace will be undergoing a surgery to have a Mitrofanoff that will create a tunnel using her appendix between the bladder and outside of her abdomen. This will allow for us to easily empty her bladder with a catheter making her personal cares easier as she continues to grow and will help prevent UTIs which she has been prone to over the years.

This week was meticulously planned in prep for Grace to have the surgery tomorrow.   Joy was traveling for work and we worked out the details of managing everything that needed to be done in prep. All systems were go. I was wrapping up my time at work yesterday and ready to be off for a week and a half when I got the call. The surgeon’s office called to tell us that bacteria showed up in Grace’s urine culture on the sixth day and we need to treat it ASAP along with getting another urine culture if there was any hope of still having the surgery.

I raced home to meet Grace and her nurse, collected the sample and headed off to the lab. Dropped off the sample and stopped by two pharmacies on the way home to pick up prescriptions we would need for our time away and the antibiotic she needed to start. In between numerous text messages with Joy and Grace’s nurse along with phone calls with Joy, the surgical clinic and the pediatrician’s office we seemed to be back on track.   Although peculiar questions were asked like has ‘Grace been to Wisconsin?’ and there appeared to be disbelief that she was content and her health status was normal.

The bacteria found is named Elizabethkingia Anophelis a bacteria string recently discovered where 69 people in three states have confirmed cases, 26 that have been fatal. According to the Center of Disease Control (CDC) most of the patients were over 65, had serious health conditions and it is has not been determined if the bacteria or the other health conditions were the cause of the deaths. Grace would be the first documented case in Iowa and we joke that she now is the dot in Iowa on a CDC map. We have to laugh as Grace continues to teach us new things.

This bacterium can be found in the earth and water worldwide and transmission is unknown. No need to worry there are no men in black suits outside or an ET bubble tent going up over our house. The bacteria could very well be living in many of us but without other health issues be inert and there is so little known about it that the infectious disease department at the hospital canceled the surgery as a precaution.

We have started Grace on an antibiotic that is the preferred treatment option and will be following up with two additional urine cultures on top of the one currently in process. Surgery has been rescheduled, nursing schedules are being adjusted to cover the some of days we planned to be away, life has shifted and we have regained the next week and a half that we essentially carved out from all existence. In my mind time stopped today and would not resume until for another week and a half, everything would halt.

The strangest thing that I had to do today was to go to daycare, still in disbelief myself and tell Graham that Grace was not going to have her surgery. Graham was painting and was not expecting me; he was expecting Grandma Choo Choo to pick him up and didn’t understand why I was there. I told him that I needed to talk to him and tell his 4-year-old brain that Grace was not going to have her surgery and we would not be going to the hospital. I felt like I was telling him someone died, perhaps because that was the mental state that I was in. He thought it would still be a good idea if he went to Grandma and Grandpas “for four days.” Turns out he really just wanted to convince Grandma to take him to ‘Old McDonalds’ on the way. Graham is always thinking, making lemonade out of lemons and he loves lemonade.

So far we know that the preliminary culture is negative of the second sample prior to starting antibiotics. Now we wait.

Kevin