Some Down, Some Up

Well today was a day that started out pretty bad and looks to have gotten a little better at the end. When we got there, Mia's nurse Patricia said that Mia was desating really bad in the morning. Her conclusion was that the seizure medicine dosage they were giving her was starting to become ineffective for her size. For most of the time we were there Mia was going up and down on a roller coaster and it didn't seem like much would help her stabilize. The doctor then ordered in increase in her seizure medicine and it looked like once it started to kick in that it did the trick and Mia's O2 stats started to be a little more consistent. We had to leave just about the time that she started to stabalize so we won't know until tomorrow if that is really what the issue is.

In a way, we are praying that it was the issue because that would explain a lot of why Mia has had such a poor week. It would make sense because there has been several times this week that Mia started to desat and she is usually pretty stable. It also might explain why she did so well last Saturday but was poor for the rest of the week. Hopefully this was the issue and we can get her back on track with trying to get her off of the ventilator.

With that said, we had a conversation with Dr. Miller today regarding Mia. He is a very nice doctor but is also pretty straight forward. He said that all of the doctors had spoken together and they all feel that it is time that Mia needs to start moving forward. He said that at this point, it would be best to go ahead and have the trache put it in so that she can be handled more comfortably and stimulated in an easier method. His own feeling was that at this point, he doesn't see Mia being weaned off of the ventilator in the short term and that it would be best for everyone to proceed to the next step. We told him that we were fine with a trache if it was going to be easier for everyone involved but that we didn't necesarily want to trache her and then have her sent home right away. We told him that we would want to give her at least a month if not two months to see what she is really capable of on the trache. I think he listened and understood our position and we will have to see how things play out.

Rachael and I are very accepting of the fact that Mia might be on a vent much longer (hopefully not forever) than we had initially hoped and we have strived to make sure the doctors know that we can accept it if thats what it comes too. However, we just want to make sure Mia isn't set on any short time tables. Basically, if she is not weaned after having the trache for two months and being in the NICU then we will go to plan B with Mia. For those of you that aren't familiar, plan B is looking for a long term care facility somewhere hopefully in the Bay Area that we can give her several months of extra care and continued weaning in a facility that is able to handle her special needs. At this moment, given the amount of care that Mia requires and how things change on a day to day basis Rachael and I would be very stressed out trying to take care of her at home. The other issue is that Rachael and I are very limited in the amount of support that our extended family can provide for us here. If we are able to find a facility in the Bay Area then we will be able to lean on the support of both our parents and extended families.

So some continued prayer requests...

1. Pray that the appropriate dosage of seizure medicine can be found that is both effective but doesn't knock Mia out.

2. Pray for wisdom for Rachael and I as we try to balance the timing of putting in the trache.

3. Pray that if we do have to go to plan B that we will be able to find a facility in the Bay Area that will be able to work with Mia and provide the care she needs as well as having the expertise in weaning her off of the vent.

4. Continue to pray for her lungs because every breath from the vent does do damage to her lungs.

That is all I have for now. Thanks again for all of your thoughts and prayers.

Robert