I'm at RMH tonight to get some sleep for a change! Abby has been extremely needy and I've been basically running on coffee. While I hate leaving her (she was bawling!) :(, this is the last night Matt will be able to be there for a while. It was a good opportunity for me to rest and recharge.
Medically, Abby is doing well today. Plastics is pleased with how the scars look, so their job is pretty much done. The peds team is following her very closely. We usually have multiple visits from them each day, which makes me feel like they really care about her! Her concerning enzyme levels have decreased slightly, so at least they are heading in the right direction.
The thing we are learning about pancreatitis is that if you try to push someone too fast, you can have another attack. There's already a good chance that Abby will have future flare-ups of pancreatitis, so we don't want to push her past her limit. Therefore, every increase will be done very slowly and she will be closely monitored. They just started TPN (artificial nutrition) this afternoon, and she is getting a tiny amount of pedialyte in her gtube to see how she does. So far, so good. They really don't know how long she will be on TPN. It hopefully won't be more than a few weeks, but it could be longer if she isn't tolerating feeds. They have a low threshold right now for stopping anything by gtube if she vomits or has any pain at all.
So since she's going to be on TPN for a while, we will be heading to a rehab facility of some sort until the feeding stuff is straightened out. We found at today that KKI won't have a bed available this week, so the coordinator is now checking with MWPH (where we have been inpatient several times and where we did our feeding program) to see if we can get in there sooner. We know that the hospital setting is not the best for Abby, so getting her to a place that is a bit more homey will be good for her all around. Plus, the therapy here has been less than stellar (very sporadic and not very helpful), so I am anxious to get her in a placement that specializes in rehabilitation. Either place should meet the needs she has at this point, so I think it will come down to which one could take her quicker.
The good news is that the MRI came back clear, which apparently gave Abby permission to talk! ;) She's still only talking on her terms and is very hard to understand, but at least we've got something. Her fine and gross motor skills are better. She's still got a ways to go before she is back to her baseline, but I definitely feel better about her not having lasting effects from a lack of oxygen.
So, we will do an intensive program to work on the feeding issues (I'm not even sure actual oral eating is even a goal right now, but we'll have to see how well she does switching to gtube feds), as well as work hard on fine and gross motor and speech. I'm hopefully that if we get a jumpstart and hit everything hard now, we will be somewhat back to baseline when we go home and can pick up where we left off. Wishful thinking? Perhaps!
When are we coming home? NO idea. I was hoping to be home by Thanksgiving, but I don't think that's a realistic goal. So now I'll just say that we will be home by Christmas and I'll be happy if it's before then! Thankfully, our RMH family is here for us and we can stay as long as we need to.
Regardless of where we are on Thanksgiving, we'll be together as a family and thanking God for bringing our Abby back to us!
Medically, Abby is doing well today. Plastics is pleased with how the scars look, so their job is pretty much done. The peds team is following her very closely. We usually have multiple visits from them each day, which makes me feel like they really care about her! Her concerning enzyme levels have decreased slightly, so at least they are heading in the right direction.
The thing we are learning about pancreatitis is that if you try to push someone too fast, you can have another attack. There's already a good chance that Abby will have future flare-ups of pancreatitis, so we don't want to push her past her limit. Therefore, every increase will be done very slowly and she will be closely monitored. They just started TPN (artificial nutrition) this afternoon, and she is getting a tiny amount of pedialyte in her gtube to see how she does. So far, so good. They really don't know how long she will be on TPN. It hopefully won't be more than a few weeks, but it could be longer if she isn't tolerating feeds. They have a low threshold right now for stopping anything by gtube if she vomits or has any pain at all.
So since she's going to be on TPN for a while, we will be heading to a rehab facility of some sort until the feeding stuff is straightened out. We found at today that KKI won't have a bed available this week, so the coordinator is now checking with MWPH (where we have been inpatient several times and where we did our feeding program) to see if we can get in there sooner. We know that the hospital setting is not the best for Abby, so getting her to a place that is a bit more homey will be good for her all around. Plus, the therapy here has been less than stellar (very sporadic and not very helpful), so I am anxious to get her in a placement that specializes in rehabilitation. Either place should meet the needs she has at this point, so I think it will come down to which one could take her quicker.
The good news is that the MRI came back clear, which apparently gave Abby permission to talk! ;) She's still only talking on her terms and is very hard to understand, but at least we've got something. Her fine and gross motor skills are better. She's still got a ways to go before she is back to her baseline, but I definitely feel better about her not having lasting effects from a lack of oxygen.
So, we will do an intensive program to work on the feeding issues (I'm not even sure actual oral eating is even a goal right now, but we'll have to see how well she does switching to gtube feds), as well as work hard on fine and gross motor and speech. I'm hopefully that if we get a jumpstart and hit everything hard now, we will be somewhat back to baseline when we go home and can pick up where we left off. Wishful thinking? Perhaps!
When are we coming home? NO idea. I was hoping to be home by Thanksgiving, but I don't think that's a realistic goal. So now I'll just say that we will be home by Christmas and I'll be happy if it's before then! Thankfully, our RMH family is here for us and we can stay as long as we need to.
Regardless of where we are on Thanksgiving, we'll be together as a family and thanking God for bringing our Abby back to us!
Comments
"The good news is that the MRI came back clear, which apparently gave Abby permission to talk! She's still only talking on her terms and is very hard to understand, but at least we've got something. Her fine and gross motor skills are better. She's still got a ways to go before she is back to her baseline, but I definitely feel better about her not having lasting effects from a lack of oxygen." Thanks be to God!! ;-D
"Regardless of where we are on Thanksgiving, we'll be together as a family and thanking God for bringing our Abby back to us!" I love, love, love your positive attitude!! It is so very inspiring to me!! ;)
Love you later, Raelyn