It has been hard to do updates on here because the hospital doesn’t have internet access, so I can only connect via my phone! So it is easier for me to share my mobile facebook updates and elaborate…
Tuesday, Oct 4, at 7:30 am: Hannah was increasingly restless last night, but that was okay because she was becoming more responsive as the sedation wore off. Only had to do a half dose of versed when she was starting to get over agitated. Even got some smiles a bit ago! Surgery at 1 pm today.
Tuesday, October 4, at 1:48 pm: Hannah was taken into surgery. Was told by the attending that they wanted to do a central line because they are going to start her on TPN and aren’t sure how long until she gets up to full feeds. I agreed. Get down to surgery and find out that they want to do a PERMANENT central line (Broviac). That was NOT what was discussed with me! We agreed that it will be done but it can be taken out easily upon discharge.
Yeah, I was really pissed about this at first. We have worked so hard to keep Hannah port-free because of all the problems with sepsis and infection that we have seen with other kids. She is a good IV stick, and in the 2-1/2 years of her Cerezyme treatments, she has always gotten an IV really easy.
After I calmed down and asked my friends on facebook about their experiences, I realized that this might not be a bad thing. It isn’t an actual port, and the risk of infection and sepsis is much less (although not gone). The surgeon after surgery told me that we could have it removed very easily once we get her feedings under control, but the more Daddy and I thought about it after the fact, it might not be a bad thing to keep.
Tuesday, October 4, at 4:57 pm: Hannah is out of surgery. Did great in recovery. Back upstairs in her room. Was in lots of pain when she woke up so we are starting the pain meds, and she is out again. Hopefully start TPN nutrition tonight. Not sure when they are going to try and restart G-tube feeds.
Tuesday, October 4, 8:27 pm: Problems with Hannah’s pain management. Even with versed, chloral, and morphine, she hyperventilated again and had to be bagged. Fever rising up to 102.2 after Tylenol an hour ago. Waiting to hear from doc.
Ugh, last night sucked! She had a post-surgical fever, thrashed around violently and hyperventilated. Because she was moving around so much, her new broviac catheter site started bleeding and we were so afraid that she was going to pull it out somehow or dislodge it. The versed only worked for less than an hour, and the morphine did absolutely nothing for her. The chloral hydrate, which usually hits at about 30 minutes, didn’t even seem to kick in for 90 minutes.
Tuesday, October 4, 8:35 pm: Going to versed IV drip for sedation control. Almost ripped out her broviac twice with her episodes. Changing to PICU status for closer monitoring tonight.
Once they got her calm with her third dose of versed in 2 hours (she was only supposed to get 1 every 2 hours), her doc decided to get her on an IV drip overnight to keep her calm. At first her respirations started getting really low, averaging around 11 but dropping to 8 or 9 per minute, so they did a CO2 blood test to make sure her carbon dioxide wasn’t high. Fortunately, her CO2 was perfect, so it was okay to have her breathing at that level. Eventually, they were able to cut the dose rate in half to a very low dose of versed.
Today, October 5, 7:53 am: Hannah was comfortable last night (sedated). She finally got her Cerezyme that was due last Friday since didn’t make her clinic appt. Tolerating TPN well.
Because we missed her Cerezyme last Friday, we finally got it last night. We were at 2-1/2 weeks since her last infusion, so the timing was perfect. It was at the clinic where we usually go for infusions, so it had to be delivered from there to here. And then there were the policies and paperwork to get it approved…at least it is done!
TPN (IV nutrition) was started after the Cerezyme, and she has tolerated that really well. Hannah hasn’t had anything in her stomach for a few days, so I was so relieved to see that started.
Tuesday, October 5, 9:03 am: So the fun begins — they are taking Hannah off the versed drip and other sedatives so we can see where her pain level is this morning. Hoping to be able to control her pain with as-needed sedatives and pain meds instead of a drip. Waiting to see when they are going to start tube feeds.
They stopped the IV versed drip, and they are now giving her low doses of Ativan around the clock with some chloral hydrate on order if needed.
Tuesday, October 5, 1:30 pm: Having a good mellow day. Sedated, but awake. EEG done, on her way to xray just to rule out any long bone fractures maybe causing pain ( long shot )
She really is doing well today. She is sedated still, but she has been awake and responding to our voices and our touch. We aren’t seeing any pain issues right now, which is great, but the question is if the sedation could be masking the pain or is the pain just manageable now. She had her skeletal survey done, and we are waiting for the results. Although I don’t think they will find anything, it was great that they were willing to try long-shots to help us figure out this pain.
We also had her EEG done. It was actually scheduled for this week at her neuro’s office to see where we are with her questionable seizure disorder since we have been a month or so off Keppra. Since we were already here, her neuro decided to get it done as well as a brain MRI tomorrow that we will send to the movement disorder specialist in Los Angeles who requested an updated MRI.
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