Caution.....

I feel like the word that best describes our world right now is CAUTIOUS. We are cautious about every move we make with Danielle and our days revolve around what is best for her, being cautious about what specific care is involved in her days.
Last week she began having therapy in our home. Grant Wood came out and started working with her. The very best part of this is that it is her actual therapists that she works with at school. In addition to her Bowman Woods therapists, we also have the Speech Therapist from Springville who worked with Danielle for the previous couple of years in our home and really knows her well. 3 of the therapists came last week to reacquaint with her and see how she is doing now. To say she was excited is a bit of an understatement. I wasn't able to be here but Brad was and her nurse was and they both agreed she was extremely thrilled to have familiar visitors who did nothing but play with her!
Colleen the PT brought a couple pieces of equipment which we can use here at home. A wedge, which is great for her during tummy time, working on stretching out her tight little pelvis and pushing up with her arms and working on those arm muscles and head control. The tumble form chair is great because it can be used for feeding etc and she loves it. She will have therapy 2 days a week, plus her preschool teacher will start tomorrow, one day per week, so that will be really fun for her also!

We are still extremely cautious about Danielle's incisions, how they look, how much time she is on her back, etc and we always make sure she has something extra cushy under her head. Whether it is her boppy she is laying on, or her nest, or blanket, we are extremely cautious about protecting her as much as possible. I am pretty sure that if I could put her in a bubble right now I probably would!! Well that being said; you can imagine how extremely cautious we ask her nursing staff to be as well. So when I came home from a very hectic dayon Thursday, and saw that Danielle's top incision appeared to be very red and have a puss pocket under it, I freaked out. There are no other words to describe how extremely panicked I was and very frustrated. I noticed this no more than 10 minutes after our secondary nurse left for the day and I was livid. I immediately called the company and left a message with our case manager. Right after I was on the phone with Neurosurgery asking what I should do. The doctor that was on call happened to be the doc that took her stitches out and he was also in the OR for Danielle's surgery with her primary Neurosurgeon, so he knows Danielle. He told me to bring her in to the University Emergency Room immediately.

Brad wasn't home yet and of course Dylan was in the bath tub. I immediately got on the phone and Brad asked our sister in law to come over so I could leave. I am thankful for my brother in law and sister in law for living down the street, she literally came to my rescue. I hauled Danielle to the U, ER, and we waited and waited. The placed was PACKED. It was 9pm before we even saw the ER doc. I was mad. Danielle is priority but so are people who come via ambulance and life lite plus others with serious conditions. But she had a really good size lump under her incision and it was flaming red and you could see the puss pocket so based on the conversation I had on the phone with the Neurosurgeon, I was pretty irritated the ER did not act faster. And we couldn't see the Neurosurgeon until we saw the ER doc first.

We finally saw the ER doc and he immediately paged Neurosurgery. The same doc I spoke to on the phone came up just over an hour later and said indeed it was an infection. They would not drain it, rather give her an antibiotic for 10 days and recheck in a week. The infection was in one of the layers of stitches underneath her skin. 130 AM Friday we finally arrived home. Poor Danielle was fussy, tired and hungry and in pain. She has such a high pain tolerance that her being a little fussy told me she was pretty uncomfortable. We sat in the ER for 6 hours and in a room holding her she even tossed and turned. Poor lil peanut. She managed a few tiny smiles but nothing like normal.

So after picking up her prescription we arrived home and zonked out. Friday we snuggled in the morning and in the afternoon the Director of Care for her nursing company came out and talked about the incident and took some pictures. This was out of character for her company and I did agree, but again we are overly cautious and this was inexcusable and can NOT ever happen again. After all, that is why we have in home nursing care.
The weekend was spent with extra Daddy snuggles. Her incision did end up breaking open on Friday evening so the puss began to drain. It was very tender so Neurosurgery said that if it breaks open that we should cover it immediately with a bandaid or bandage. We opted for the bandaid because it is smaller and won't pull as much hair taking it off.

This is her absolute favorite place to play. She scoots there on her back every time we put her on her blanket. And she manages to do it with a toy right within reach also. She's a smart cookie and a manipulator too :-)

There is nothing worse as a mother than feeling like you can't protect your child every minute of the day. That is why we try so hard to instill our trust in the best caregivers around to fill in while we are away working for our family. It is a shame we had the experience we did with one of our providers, although it made us question for a bit, we will no longer have that nurse and it was not our primary nurse anyway. So our daughter is still in the best of hands, and now even moreso she is protected. We are extra cautious... for our girl is the most valuable piece of us and always will be.