Home from the Hospital

[Chelsea]

The surgery went well despite last minute changes and the surgeon getting chewed out by me the last minute (I will explain). We are home now and Gllianne is recovering very well. She is very uncomfortable but the pain is managed with meds, which of course she is just chewing and then swallowing with a bite of jello. So now that the good stuff is out of the way, here is what didn't go as planned.

We arrived at 615 AM, the surgery team couldn't find the surgical consent forms so both surgeons had to come in and re consent us. She had the biopsy as well as an ear tag removed by the plastic surgeon.

I asked the general surgeon if he has the info from the Biochemical geneticist regarding the testing at Duke, sample size, etc. His response was he was going to let him handle that part of it, he was just the technician retrieving the sample. That didn't fly with me as I understand the sample needed to be the correct size and handling technique was imperative as the enzyme can quickly degrade.

I then took Gillianne back to the OR. We had an issue because of a family history with Malignant Hypothermia. This changed the course of anesthesia which meant 100% IV sedation. I took her back placed nitrous mask on her to keep her calm while they gave her a shot of cetamine. This is rare but with the MH complication this was what the Dr felt was best. She did amazing, even anesthesia was impressed at her ability to cope with it all and our connection as a mother / daughter team.

20 minutes after I left the OR the surgeon paged, which scared the poopy out of me. He then told me that he spoke with the pathologist and they agreed they could get the needed sample with a needle biopsy.

So here I am, my child is under, plastics already started on her ear and they are telling me they want to do a needle biopsy. I asked what the geneticist had said and the surgeon said he deferred them to the Duke website. Well, my better judgment and my knowledge from reading here and elsewhere, I insisted on the open biopsy. I was so angry! I was crying and yelling, and so mad that here I am the mother of this little girl already in surgery, and I am making a decision that the only Dr that knows HFI should have made and didn't.

As soon as Gillianne was in recovery the Dr came and got me. Because of the cetamine, she woke a little worse than most because it can cause such vivid dreams. It's very rare they let parents into the recovery but the anesthesiologist felt because of our bond and how calm she was in the OR with me there, it would aid in PACU recovery. It did too! 5 minutes after my arrival her heart rate was down and B stabilizing. She still wasn't coherent but she knew I was there and when I walk more than 5 feet away she would whimper, despite her eyes being closed.

I spoke with the genetic counselor, whom I love and adore, she followed up on th biopsy for me to ensure everything was done properly. It had been and left for Duke last night.

That was my short story. I tell the whole thing in hopes those that may face it soon have an idea of things that may happen. It's difficult when so many people in the plan no nothing about what we are doing. In the end, everything is fine and I feel much better.

[Tammy]

I'm glad everything went well as far as the end result. It is soooooooo frustrating to have to tell the Drs what they need to do.
Good job. And hopefully now you will get some answers.
Tammy

[Chelsea]

Hey Kristen!

We are hanging in there. I was reading your novel in the other thread and I cannot tell you how much of what you described happened with us this weekend. My power is flickering on & off so I have to keep everything brief.

Gillianne hasn't had more than a handful of food in the past 3 days. Her pain is well under control, she is happy and playing, just not eating. She is down 1 lb from her weigh in 2 weeks ago. She is drinking and staying well hydrated and as long as I can keep that up with her bicarb meds we won't have the acidosis. BUT, she is still ketotic, I am assuming now from the lack of food and her body is simply eating itself (not that there is much there to begin with).

She is checking in to nurse about every hour, this is always a sign she doesn't feel well but it's not related to pain from the biopsy. I know we have had a bad flu bug going around and most of my family, myself included has had it already. I am wondering if her body is fighting it off or if her lack of appetite is related.

She also seems to be in a bad arthritic flare, at least I am going to guess. Since she cannot have her motrin or anti inflammatory for her JRA she has become "I tired" she calls it. Then just lays down.

We have also noticed a major backstep in her physical development, she will no longer do the stairs which was something we had just accomplished a few months ago but now she insists on being carried.

I am still awaiting results. 2 weeks was the estimated time frame though my fingers are crossed for earlier news. I may call the genetic counselor on Friday just to check on progress.

I am off to take Aiden to preschool, if I have power I will come back later and reply to the novel .

Thanks for thinking of us.