Updates to Date

In case you don't have the whole story of Trinity, here are Autumn's
updates. She's great about sending them out:
Hello, We are now connected to the internet right here in Trinity's room! We thought maybe we'd find a library or something to check our email and send out an update but when we asked one of the nurses about this they said we could connect to a line right here in the room and they even had a laptop we could use. The circumstances might not be great but the staff here at St. Lukes sure are! I think this may end up being a long email just to summarize what's happened over the past few days because I know some people have more information than others so here goes... On Friday, I took a very happy and healthy appearing Trinity to daycare and at noon I received a call from 911 saying that they had our daycare provider on the line and she was having trouble waking Trinity up from her nap and the ambulance was on the way. My heart stills skips a beat when I think back to that call. When I walked into the ER I was just so thankful that she was breathing and making some noises though she definitely wasn't looking 'normal'. They did labs, a head CT and a lumbar puncture and there were some lab changes indicating that she may have had a febrile seizure, a seizure that is not that uncommon in children who have a rapid change in their temperature such as with an illness. She was pretty worn out on Friday and definitely not 'all there' but by the evening she would smile if I tickled her feet and was coming around slowly. The doc thought we'd probably be able to go home on Saturday but when Saturday morning rolled around Trinity was still not doing great. She started vomiting that morning and continued through the morning but then seemed to be doing fairly well in the afternoon playing on the hospital bed--weak and wobbly but definitely our Trinity. She started vomiting again during the night and on Sunday all she wanted to do was sleep. It just didn't seem like she was getting any better and actually a little worse but the doctor really felt that all her symptoms fit into those of viral gastroenteritis and her labs looked better on Saturday and looked okay on Sunday afternoon too. As Sunday rolled on we were getting more and more concerned and the doctor came in around 9 pm to look at her and once again reassured us. About 5 minutes later I had just laid her back down in the crib when it sounded like she was vomiting again and when I picked her up her stomach was kind of sucked in and her eyes were wide open and it didn't look like she was breathing. The nurse grabbed her, laid her down on the chair and was able to get her breathing again fairly quickly. They called a code blue and the ER doctor, respiratory therapist and nurses came running to stabilize her breathing. They then wanted to get us flown to St. Lukes as soon as possible so they actually let Trinity have the helicopter that was flying in for another patient. After Dr. Hutnak intubated her we hopped on the helicopter for a very long 52 minute flight to Boise. Once here we went directly to radiology for a head CT and I met the doctor that would be taking care of Trinity that night (more precisely morning since it was 2 a.m.). After the head CT we were taken to the PICU and they started a central line and then sent her for an MRI. The CT and MRI showed a little swelling of the brain consistent with a period of hypoxia (low oxygen levels) but otherwise no other signficant changes. On Monday morning they did an EEG checking her brain waves and this was a little slowed as would be expected with the meds she had been given to relax her on the ventilator. The EEG showed no evidence of active seizure activity. Yesterday afternoon she had her first witnessed seizure as I was standing next to her (also hard on a moms heart) but they were still hoping she'd be able to come off the vent this morning. They had started to wean her off the vent during the middle of the night and by this morning she was breathing on her own. Around 8 a.m. she had another seizure so they have decided to keep her on the vent for now until hopefully they find out why she is having the seizures. The doctors feel as though the seizures are just a symptom and they are still working to try to find the cause but are quite baffled. They think possibly it could be a metabolic disorder in which Trinity doesn't have a specific enzyme to help her metabolize sugars or proteins or something and they can build up in her system and become toxic. Unfortunately the tests for these disorders can take 2 weeks so they've asked it to be expedited but it still may be a week or so. In the meantime, they repeated the EEG this morning and were going to keep her hooked up for 8 hours or until she had another seizure which she did. That is good news in the fact that maybe
that may somehow help identify the seizure activity but not necessarily good because they've given her several different anti-seizure medicines and she's still seizing through these. They are going to send the infectious disease specialist in to see her but that is low on their list of suspicions but the reality is they are completely perplexed and are just looking at everything at this point. We, the proud parents, once again have proof our daughter is an overachiever :) I think that summarizes where we're at right now. We are generally doing well ourselves and are really just trying to live in the moment and not think too much about the past or the future as it all seems so unknown and out of our control. We do believe that God is ever present and we find great peace in knowing he deeply cares for us and will be with us as we
walk through this. Thank you all for your prayers. Love, Autumn,
Aaron and Trinity

That was last night, and now here is the morning update:

Good morning, We have a little encouraging news to share this morning. As I had mentioned yesterday, the primary hypothesis behind what has happened to Trinity is possibly a metabolic disorder. They drew labs for many of these disorders on Monday morning and the doctor said it could be up to 2 weeks before the results returned. He was hoping to get the tests expedited so we'd get them back hopefully in a week. The tests were sent to Oregon Health and Science University and Dr. McConnell (the pediatric hospitalist here at St. Luke's) talked to them yesterday and they said they'd work hard to get us some results in the next day or two! Dr. McConnell said he'd probably have to buy the docs at OHSU pizza or something and I told him we'd throw in the soda pop :) The plan for today is to get Trinity off the ventilator. They are tapering her off some of the meds they use while she's on the vent to keep her relaxed and these medications also can help prevent seizures. So, as they taper off we are praying she does not experience anymore seizures and after she has been off the meds for 4-6 hours they will try to remove the breathing tube. They say her lungs are strong and she should do well off the vent but I admit I'm still a little nervous about her having another seizure and not breathing. It just feels safe on the vent but I know she has to come off in order for me to hold her again and see that amazing smile. So, that is the update for the morning. I did want to add one thing to the email I sent out yesterday. I didn't really go back through and edit it after I typed it and I just wanted to make sure the way it was written couldn't be misinterpreted. I think the doctors, nurses and entire medical staff at St. Elizabeth did a great job with Trinity. I know how confusing medicine can be and she had all the symptoms consistent with her diagnosis of a viral infection and when it was time to be shipped out that's exactly what they did. I think we are fortunate to have the facility that we do in Baker and I'm honestly not just saying that because I work there :) Thank you everyone for your prayers and words of encouragement. Love, Autumn, Aaron and Trinity

So now you are up to date. We'll post the e-mail updates to the blog from now on. Thank you so much for your love and support!


Popular posts from this blog

Too Much Information...and some advice from what I've learned

I Love S'mores!

Read this if you want, but it probably won't make sense...