Thursday, January 3, 2008
Feeling Better - FINALLY
Yes, you read that correctly! Ben is feeling better today. Hooray! No more vomitting and he is now playing with his toys (well, we hold them for him and he pushing the button to activate them). It was either the pain meds that were making him sick or a touch of the flu he possibly caught in the hospital. Regardless, it warms my heart to see him somewhat back to his old self now. It's amazing how much your mood and spirit is dictated by your child's health and happiness. Thank you to everyone for all of your support, words of encouragement and offers of help. We appreciate it!
Wednesday, January 2, 2008
Can't Keep Anything Down
Ben is having a rough day today. He woke up vomitting and hasn't been able to keep anything down all day - food or med's. We can't figure out why either. The doctor thinks he is getting sick from constipation, but I think it has more to do with the pain med's (they have him on Valium and Tylenol with codeine). We have tried EVERYTHING to get him to go the bathroom and so far nothing. In the meantime, we've switched to straight pedialyte and stopped all med's into his stomach. And to help with pain, I am just giving him a regular Children's Tylenol suppository - it isn't much, but I'm hoping it takes the edge off. My mom and I are keeping a close eye on him and suctioning his mouth and trach very frequently whenever he starts to look like he might vomit. So far, we've been able to keep it under control and he has only been gagging every 15 minutes. Ugh, I wish I knew what to do!
Sad News
On New Year's Day, we learned that Mike's dear grandfather had passed away unexpectedly. He was an amazing man, a wonderful grandfather/father/husband/great grandfather. We will miss him tremendously. Mike will be heading to Youngstown later today for the viewing and mass on Thursday and Friday. Please pray for him and his entire family during this difficult time.
Tuesday, January 1, 2008
Worst New Year's Eve Ever
Ben had a horrible, horrible day yesterday. A terrible accident happened at 9:30 a.m. while the physical therapist was working with Ben. Instantly, I knew something really serious was wrong, so we called his doctor and rushed him to Children's Hospital. Ben's right femur was completely fractured in half (his thigh bone). Because of the severity of the injury and his age, he was admitted to the orthopedic floor while we waited for an opening in the OR. I have never seen Ben in so much pain before. I can't even begin to describe how horrible it was as a parent not to be able to help your child feel better.
We are home from the hospital now and Ben is doing well considering (he is such a trooper). He is in a Spica cast, which is also referred to as a body cast. They were able to dip it down in the front to expose his g-tube, but the rest of his body is cast from his armpits down. There is also a metal rod cast between his legs separating them. He has to wear the cast for 6-weeks and I was told that kids with other issues tend to take longer to heal. He can't move and we need to reposition him every 2-4 hours to avoid sores - which is basically tilting him a little to the right, then to the left, etc. Diapering is a bit challenging. We have to tuck these pads into the cast opening they left between his legs, then tuck a diaper in, then wrap a diaper two sizes larger around the whole thing. Every 10 days Ben will need to get x-rays to make sure he doesn't have to be recast or manipulated again (which would have to occur in the OR so I'm praying that doesn't happen).
And as if our day wasn't bad enough, a deer ran into our car on the way home from the hospital with Ben. Luckily, it only left a small dent.
Hopefully we've already been through the worst of it and these next six weeks will go by quickly.
We are home from the hospital now and Ben is doing well considering (he is such a trooper). He is in a Spica cast, which is also referred to as a body cast. They were able to dip it down in the front to expose his g-tube, but the rest of his body is cast from his armpits down. There is also a metal rod cast between his legs separating them. He has to wear the cast for 6-weeks and I was told that kids with other issues tend to take longer to heal. He can't move and we need to reposition him every 2-4 hours to avoid sores - which is basically tilting him a little to the right, then to the left, etc. Diapering is a bit challenging. We have to tuck these pads into the cast opening they left between his legs, then tuck a diaper in, then wrap a diaper two sizes larger around the whole thing. Every 10 days Ben will need to get x-rays to make sure he doesn't have to be recast or manipulated again (which would have to occur in the OR so I'm praying that doesn't happen).
And as if our day wasn't bad enough, a deer ran into our car on the way home from the hospital with Ben. Luckily, it only left a small dent.
Hopefully we've already been through the worst of it and these next six weeks will go by quickly.
Tuesday, December 18, 2007
Ben Is Catching On To Sign Language - Kind Of
We continue to sign to Ben every day and for the longest time, the only sign he did back to us was "up" - and he used it when he wanted picked up. We have been working really hard on a lot of other signs, but specially the sign for "more". I noticed about a week ago that Ben was doing this shirt flick sometimes when I asked him if he wanted more. Ben's therapists have told me to be on the lookout for any signs that he seem to be using consistently even if they aren't the real sign (kids sometimes develop their own signs and as long as we can figure out what they mean, we can communicate with them). I'm happy to report that Ben's shirt flick has now consistently become his sign for more. He even does it when he wants more without me initiating it. It's GREAT! I feel like I am finally starting to communicate with him in some way. The only downside is that people who don't know us might think Ben is telling me off when he signs his version of "more".
Some Great Progress
Ben has been making some great progress lately. He is spending more time on his belly playing with his toys... which is HUGE for him. He hates belly time because up until recently he wasn't able to do anything once he was on his stomach and I think he also didn't like the feel of the trach being pushed on. Now he is strong enough to prop himself up for short periods of time and play with his toys. I feel like he is getting much closer to being able to push up into sitting on his own.
"I can even balance on one arm."
"Come on mom, just take the picture already!"
Sunday, December 16, 2007
Not The Wake Up Call We Were Hoping For...
This morning, our nurse woke us by pounding on the door and hollering for help because Ben's trach had come out. This is something that we were trained to handle, knew could happen, but thankfully hasn't happened - until today (this instance is a perfect example of why Ben needs a trach and CPR trained caregiver or nurse by his side 24 hours a day, even when he is sleeping). As soon as I heard the words "trach out", I darted from my bed and ran into Ben's room - Mike was right behind me and for those of you who know what a heavy sleeper Mike is can appreciate how amazing it was that his fatherly instinct overrode his heavy sleeping habits.
As soon as I approached the hall, I could hear Ben struggling to breath - I don't think I will ever forget that noise. It was louder than I would have thought and it sounded like someone having a bad asthma attack. His trach was lying in his bed next to him with his trach ties attached, Ben was starting to turn blue and he was thrashing around in a panic. I grabbed the trach and restrained him the best I could and pushed it in. I asked the nurse to suction and she said the catheter wouldn't go in. Ben was now dusky gray and lethargic. I checked the trach and realized it wasn't in right. I tried again and got it in this time - thank you God! The nurse suctioned while I held the trach and Mike pulled out the oxygen. Luckily, we have a high flow oxygen meter in case of emergency and we started give him 8 liters of O2. We didn't need to give Ben CPR, he was able to come back with the high flow oxygen. He needed O2 for about an hour, but was able to get back to room air after that.
This incident was a reminder to us of how precious every day with Ben is and how quickly something horrible can happen - and not due to neglect or anything on our part... just due to the fact that Ben has to wear a trach to survive and with wearing an external piece of medical equipment to breathe, life or death accidents can happen at any minute. I'm so glad our nurse didn't waste any time and just ran in and got us because she figured we could handle the situation the best. Our hearts go out to those families who have lost loved ones because of accidents with the trach. It only takes a few seconds for a trach to slip out and not all kids make a noise to let you know it is out.
This morning was a reality check for us that maybe we needed. I always take Ben's suction and emergency trach bag with me when we go out - but I don't always take his oxygen... now I will. I am now going to insist any day nurse who may be alone with Ben do a trach change with me so they can see how Ben's trach goes in.
We have no idea how Ben's trach came out. Either the Velcro on his ties got caught on his shirt and pulled apart, or Ben's little busy fingers found them. Either way, we are keeping a even closer eye on him.
As soon as I approached the hall, I could hear Ben struggling to breath - I don't think I will ever forget that noise. It was louder than I would have thought and it sounded like someone having a bad asthma attack. His trach was lying in his bed next to him with his trach ties attached, Ben was starting to turn blue and he was thrashing around in a panic. I grabbed the trach and restrained him the best I could and pushed it in. I asked the nurse to suction and she said the catheter wouldn't go in. Ben was now dusky gray and lethargic. I checked the trach and realized it wasn't in right. I tried again and got it in this time - thank you God! The nurse suctioned while I held the trach and Mike pulled out the oxygen. Luckily, we have a high flow oxygen meter in case of emergency and we started give him 8 liters of O2. We didn't need to give Ben CPR, he was able to come back with the high flow oxygen. He needed O2 for about an hour, but was able to get back to room air after that.
This incident was a reminder to us of how precious every day with Ben is and how quickly something horrible can happen - and not due to neglect or anything on our part... just due to the fact that Ben has to wear a trach to survive and with wearing an external piece of medical equipment to breathe, life or death accidents can happen at any minute. I'm so glad our nurse didn't waste any time and just ran in and got us because she figured we could handle the situation the best. Our hearts go out to those families who have lost loved ones because of accidents with the trach. It only takes a few seconds for a trach to slip out and not all kids make a noise to let you know it is out.
This morning was a reality check for us that maybe we needed. I always take Ben's suction and emergency trach bag with me when we go out - but I don't always take his oxygen... now I will. I am now going to insist any day nurse who may be alone with Ben do a trach change with me so they can see how Ben's trach goes in.
We have no idea how Ben's trach came out. Either the Velcro on his ties got caught on his shirt and pulled apart, or Ben's little busy fingers found them. Either way, we are keeping a even closer eye on him.
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