Trinity got to come home yesterday around 4:00pm. She continues to have some pain, but we are trying to control that with Tylenol and lots of sleep. She had an issue last night before bedtime with vomiting, but so far today she has been doing really good and keeping her food down. The thought has crossed our mind if something might be wrong with her shunt, but we are going to watch her the next couple days and see how she does.
We are all really glad to be home and sleeping in our own beds. As much as we wanted to come home it was also difficult to leave our roommate behind. Aubree wanted to take him home with us, but unfortunately that is not the way it works. Before we headed home we stopped by Shriner's to drop off some pop tabs. They were so happy with the amount that I brought in. "Thank You" to everyone for your help. I think about how much it costs for healthcare for kids with health issues and then to add equipment on top of that, Shriner's makes it possible for those that can not afford to still get good healthcare and I feel like that is something worth supporting. Who knows, someday Trinity might be one of those kids that needs a wheelchair and with your help Shriner's can provide her with one!
Thanks for all the prayers over the last week and last year! I can't believe in a month Trinity is going to be one, it just don't seem possible. What a blessing God gave us!
Have a good week and we will keep you all posted as Trinity continues to recover!
Tuesday, January 27, 2009
Sunday, January 25, 2009
Recovery
It has been a long past three days for Trinity. Friday night Shannon stayed overnight with Trinity so I could get some much needed sleep. On Friday Trinity struggled keeping anything down and as the day and night went on this continued. She became dehydrated which required them to do an IV so they could get some fluids in her. Putting an IV in Trinity does not go real well and with that being said it took a number of people to finally find a good vein to put one in (with the help of an ultrasound machine). So at 9:30 pm they told Shannon she was dehydrated and about 4hrs later they finally got fluids in her, I don't think I have to tell you how unhappy daddy was. Trinity has ran a temp since having surgery until late afternoon on Saturday. I think seeing her big sister Aubree really helped Trinity, because after giving Trinity a bath we started to see the old Trinity. She gave us little smiles and even babbled a little.
Last night I stayed with Trinity. She really had a pretty good night other then her oxygen level would go down into the low 80's when she was sleeping. They think it has to do with the morphine, but just to make sure they blew oxygen on her all night. She slept from 9:00-7:00 besides the few times the nurses had to do the vitals. The little boy next to her was also a good sleeper, he had more things done to him in the night then in the daytime, I don't know how he slept through all the noise the nurses were making. I don't know the boys situation, but I know that he has cancer, is 10months old, and has been here for the last 8 months. The nurses have pretty much raised him and we can see why. We have been his roommate for 2 days and the mom has been here for a total of 15 minutes. When I was calming Trinity down last night and watching her sleep, I just thought of the little boy next to us and how neglected he must feel. It just brought me to tears to think of the love and affection he is missing out on. You can see that the nurses are really good with him. They all take time holding him and he spends most of his time out at the nurses station in his wagon.
As I write this post, Trinity is playing with her balloon that Nana and Papa got her and babbling. It is so nice to see her getting back to her old self. The Neurosurgeons just made their rounds and so far everything looks really good. She is having a little drainage from her incision, but they are going to keep an eye on it. They are also going to lower her fluids through the IV and we might try some baby food tonight for supper. Things are slowly starting to look up for Miss Trinity Sue! Thanks again for your continued prayers. Hopefully our next post will be that Trinity is going home!
Friday, January 23, 2009
Surgery/PICU/Pediatric Unit
Good Evening! Sorry we didn't get you all updated last night, but because of how long it took for her to get out of surgery and recovery we didn't get settled in until late.
We started out the morning at about 3:30am and woke Trinity up around 4:20am to a nice bath with her pre-op shampoo. She did not think this was a very nice way to wake her up. We got to the hospital around 5:30am. They did all the pre-op questions and then took Trinity away to surgery around 6:30am. We waited anxiously to hear something all morning, finally around 11:15 we had made some contact with the nurse. She informed us that surgery did not get started until 10:25 because they had such a hard time getting an IV started in her. So with that being said, what we thought was going to be a 4 hour surgery turned into being almost 8 hours. The doctor came out around 2:00 and told us everything had gone great. They actually had to remove more then they thought they would. They removed the piece of skull that they had planned on and then found that the top two vertabraes were in the way causing a pinch on the stem of the brain. So they had to remove the top two bones to disconnect the brain stem. During the surgery they were fortunate enough to use a machine to scan Trinity after they were done to make sure that they removed everything that was causing interference. This helps to give them an preview of what everything will look like once the surgery is complete. Dr haines did confirm with us that she has one of the more severe cases of chiari malformation that he has seen.
The first night after surgery was a long one for Mirands. Once again Trinity was sharing a room with two other girls. Very ironicly, same as the last surgery, we shared a room with a 15 year girl with a rair disease that I had never heard of. Along with the disease she had a severe case of scoliosis. She has recently had a surgery to correct the 75 degree bend in her back. To put this in perspective, Trinity has a 38 degree bend in her back and looking at this on an x-ray it looks like a lazy letter C. At the age of 15 she weighed 59 pounds. The bend in her back was so severe she could eat very little because of the pressure her rib cage put on her stomach. Needless to say, she could use some prayers.
Today has been a fairly good day. Trinity was able to get out of ICU at about 1:00 today. She has been running a fever off and on all day and she has not been eating real well, but the doctor said that was to be expected. Dr. Haines stopped by this evening and said he thought everything was looking good, and he was pleased with her progression. Tonight I finally made Miranda go home to sleep and T sue and I are hanging out here in the hospital and life is good. Thanks to everyone for your thoughts and prayers. God has one again blessed us and we have so much to be thankful for.
Monday, January 12, 2009
Shriner's Hospital
As I am sitting here writing this post we are getting a ton of snow and I have a little helper sitting in my lap, Trinity! She wanted in on the comments I made about our visit on Friday to Shriner's.
As most of you know we had our first appointment with Shriner's last Friday. It was a long day of seeing many doctors, but it was a refreshing day for us also. I really don't know where to begin. We had our first appointment at 9:00 am where Trinity had an x-ray and ultrasound done. After we were done with this we were called into a long hallway with about 6 different patient rooms. We were one of about 8 families that were being seen that day. I don't know that all of them were spina bifida, but we did meet one family that has a 2 year old son that has spina bifida and it is the same location as Trinity's (L5-S1). We got to spend some time talking to them between appointments. I don't want to drag this out any longer then it needs to be so I am only going to give you the highlights of the day. The x-ray showed that Trinity has a severe curvature to her spine (scoliosis). Her curvature is about 38%, not real good. For most of you that have spent some time with Trinity you will notice that she tends to lean to the right a lot and that is why. Nothing will be done about this right now because of her upcoming surgery, but we go back in 3 months and they may look at putting her in an upperbody brace. The ultrasound looked great. Trinity is voiding like she should be and her kidneys look good. We have an appointment scheduled in February where they would do some different test on her bladder and bowels, but the Urologist that we seen said he didn't see any reason for the test to be done and that they would do some testing in about 3 months. So Shannon and I are going to pray about this, but we feel pretty good about listening to the doctor at Shriner's and waiting 3 months. We will keep her on the Bactrim (anti-biotic for her bladder) for now, but he hopes to get her off of it so she can get her immune system up. We also met with a Neurologist, Neurosurgeon, and an Orthopedic Surgeon. We plan to keep Dr. Haines, from the UofM for now. We feel more comfortable with him and the fact that Dr. Gilmer referred us to him.
An exciting point in our day was meeting with the PT and OT. They are having a chair made for Trinity where she will be able to situp in her highchair and her stroller! We are really excited for this because we feel like Trinity spends a lot of time having to be on her back since she can not situp. They also gave us a chair that can go in the tub so Trinity can take baths and we can also use it in our family room and she can watch some cartoons with Aubree while being strapped in her chair. I will be sure to take some pictures of these so you can see what I am talking about. They have to make the other chair and it will be done in about a month.
We were searching all week for a place for Aubree to go so we didn't have to take her with us, but God knew what he was doing. We were glad that Aubree was there. She got to see kids of all different needs and made some friends along the way. I can say that for once I felt like we were not a minority and we fit right in with all the other families. I really wish I could have had a video camera so you could have seen how our day went. It was a GREAT day! I felt renewed and refreshed! How great is it that we have hospitals in this world that help little kids that are in need of so much and do it at no cost to the patient. You don't have to worry about if your insurance company is going to pay for it, you just go with the piece of mind that they are going to give you the best care for your precious child.
I got the chance to drop of some pop tabs and I talked to the guy about where the money goes for this. The Women's Auxiliary takes them to a donation center where they get money for them. They then use the money to help buy wheelchairs for kids. How great is that! So don't throw those tabs away, SAVE, SAVE, SAVE!!!!
I know this is a pretty long post, but I wanted to fill you in on our day. I know there is still a ton I want to say, but I will save it for another post. Have a great week!
As most of you know we had our first appointment with Shriner's last Friday. It was a long day of seeing many doctors, but it was a refreshing day for us also. I really don't know where to begin. We had our first appointment at 9:00 am where Trinity had an x-ray and ultrasound done. After we were done with this we were called into a long hallway with about 6 different patient rooms. We were one of about 8 families that were being seen that day. I don't know that all of them were spina bifida, but we did meet one family that has a 2 year old son that has spina bifida and it is the same location as Trinity's (L5-S1). We got to spend some time talking to them between appointments. I don't want to drag this out any longer then it needs to be so I am only going to give you the highlights of the day. The x-ray showed that Trinity has a severe curvature to her spine (scoliosis). Her curvature is about 38%, not real good. For most of you that have spent some time with Trinity you will notice that she tends to lean to the right a lot and that is why. Nothing will be done about this right now because of her upcoming surgery, but we go back in 3 months and they may look at putting her in an upperbody brace. The ultrasound looked great. Trinity is voiding like she should be and her kidneys look good. We have an appointment scheduled in February where they would do some different test on her bladder and bowels, but the Urologist that we seen said he didn't see any reason for the test to be done and that they would do some testing in about 3 months. So Shannon and I are going to pray about this, but we feel pretty good about listening to the doctor at Shriner's and waiting 3 months. We will keep her on the Bactrim (anti-biotic for her bladder) for now, but he hopes to get her off of it so she can get her immune system up. We also met with a Neurologist, Neurosurgeon, and an Orthopedic Surgeon. We plan to keep Dr. Haines, from the UofM for now. We feel more comfortable with him and the fact that Dr. Gilmer referred us to him.
An exciting point in our day was meeting with the PT and OT. They are having a chair made for Trinity where she will be able to situp in her highchair and her stroller! We are really excited for this because we feel like Trinity spends a lot of time having to be on her back since she can not situp. They also gave us a chair that can go in the tub so Trinity can take baths and we can also use it in our family room and she can watch some cartoons with Aubree while being strapped in her chair. I will be sure to take some pictures of these so you can see what I am talking about. They have to make the other chair and it will be done in about a month.
We were searching all week for a place for Aubree to go so we didn't have to take her with us, but God knew what he was doing. We were glad that Aubree was there. She got to see kids of all different needs and made some friends along the way. I can say that for once I felt like we were not a minority and we fit right in with all the other families. I really wish I could have had a video camera so you could have seen how our day went. It was a GREAT day! I felt renewed and refreshed! How great is it that we have hospitals in this world that help little kids that are in need of so much and do it at no cost to the patient. You don't have to worry about if your insurance company is going to pay for it, you just go with the piece of mind that they are going to give you the best care for your precious child.
I got the chance to drop of some pop tabs and I talked to the guy about where the money goes for this. The Women's Auxiliary takes them to a donation center where they get money for them. They then use the money to help buy wheelchairs for kids. How great is that! So don't throw those tabs away, SAVE, SAVE, SAVE!!!!
I know this is a pretty long post, but I wanted to fill you in on our day. I know there is still a ton I want to say, but I will save it for another post. Have a great week!
Monday, January 5, 2009
Happy New Year!!
We made it home last night from our week and a half vacation in Iowa! We had a good time with family and friends, but are excited to get back home and get into our normal routine. We had a GREAT Christmas and came home with a packed vehicle of toys for the girls (I am still trying to make room for them all). We also enjoyed celebrating the New Year with Shannon's sisters and their families. The adults got to go out to eat with no kids, thanks to a daring teenage girl, Liz (she is still probably trying to recover from the evening). We didn't have reservations until later in the evening so Trinity was in bed the whole time we were gone!
I realized today that I have not told you the date of Trinity's surgery. It is scheduled for January 22nd @ 7:30 am. We will have to be there at 5:30 am so it is going to be a long day for us. The surgery should take about 4hrs and we are guessing that she will be in the hospital about the same amount of time she was the last surgery.
We also get to go to Shriner's this Friday. Shannon and I are both excited to have Trinity evaluated there. This will be a full day of seeing different doctors.
I want to share with you the pictures I had taken of the girls. My good friend Sarah took the pictures. She is such a huge help when it comes to posing Trinity for photographs. The website is
http://www.photoreflect.com/pr3/store.aspx?p=36274
and the password is arthur
We pray that you had a Blessed Christmas and have a Happy New Year!!
I realized today that I have not told you the date of Trinity's surgery. It is scheduled for January 22nd @ 7:30 am. We will have to be there at 5:30 am so it is going to be a long day for us. The surgery should take about 4hrs and we are guessing that she will be in the hospital about the same amount of time she was the last surgery.
We also get to go to Shriner's this Friday. Shannon and I are both excited to have Trinity evaluated there. This will be a full day of seeing different doctors.
I want to share with you the pictures I had taken of the girls. My good friend Sarah took the pictures. She is such a huge help when it comes to posing Trinity for photographs. The website is
http://www.photoreflect.com/pr3/store.aspx?p=36274
and the password is arthur
We pray that you had a Blessed Christmas and have a Happy New Year!!
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