Have I mentioned lately that I HATE roller coasters? Sadly, that is what we were on all day yesterday. Roller coasters can tickle your tummy and make you laugh till you cry or, they can scare you to the point of tears. Today has been no different as I have cried tears of fear and of joy. As Blaine is unable to eat yet, they continue to feed him through the G-Tube and are giving him Bolus feedings. For whatever reason, he is not tolerating them and is throwing them up. There was one incident yesterday when he and I were alone in his room when he vomited and even though I raised his bed up and was suctioning him, he was choking and couldnt breathe. I ran out into the hall and yelled to a nearby nurses aid that he was choking and within seconds, I had all the help I needed. I felt so helpless and scared. They assured me I did everything right and within a few additional seconds, he was just fine. Blaine has struggled for the past three days with major amounts of tone/posturing and is simply exhausted because of it.. Fortunately, Dr. LaHolt was on our floor yesterday afternoon so I asked him to come in and see Blaine regarding the tone/posturing and assess him. He said the tone/posturing was very bad and decided to increase his Baclofen, which is a muscle relaxer. Scary thing is this is the same medication that was increased a few weeks back that set Blaine back and even made the doctor fear he had additional brain swelling or another bleed and sent us for a CT scan. Please pray that this increase does not cause issues yet again. I should note that the increase before was doubled and this time it was only increased by 5 mg. Hopefully a small increase with benefit him but will not be too much to cause him issues again. Blaines first increased dose was given along with his pain meds yesterday afternoon and upon receiving the feeding and meds, he threw them up. This proved to be an issue as they had no idea how much of the pain meds or Baclofen remained in his stomach and Blaine had to wait an additional four hours for the pain meds and Baclofen that he needed so desperately. I think it was possibly the longest four hours of my life and possibly his as well. Due to the fact he is not tolerating his Bolus feedings, when they take Blaine down to the gym for PT or OT, he vomits and then PT/OT is over. He hasnt gotten a full session of PT/OT in several days. I plan to speak with the doctor regarding his feedings and am going to inquire as to whether or not we can break the feedings up so that he is not getting such a large volume at any given feeding. If this is shot down, I am going to ask if we can go back to the continuous feed that is given to him 24/7 at a very slow rate via a pump. All I know is they have to figure this out as if he keeps vomiting he will continue to lose weight and if he continues to miss therapy due to the vomiting, he is not going to improve and will not meet the weekly goals they have set for him. Blaine continues to be very uncomfortable with the cast on his right arm and I/we look forward to it being removed on Monday. Hopefully the removal of the cast will decrease some of the pain he is experiencing. For some reason, he is leaning badly to the left when he is in his wheelchair, to the point I worry he is going to tip the chair over and due to the severe lean, his head will not remain in/on the headrest. I spoke with the wheelchair techs and they took Blaines wheelchair and made some alterations to it to adjust for the leaning Blaine is doing. When they brought it back I told Blaine they pimped his ride. It is so much better and I took him for a couple of spins around the quad and he was more relaxed in the chair than I think I have ever seen him. Usually, Blaine postures so bad when he is in the chair that he has even slipped out of the chair and onto the floor and now has a pelvic restraint due to it. They also added a head strap to hold his head in place on the head rest. He doesnt seem to be very happy with this addition but it has to be more comfortable than having his head/neck so bent over and sometimes even stuffed under the headrest. Blaine did do some pretty exciting things yesterday..... The OT therapists came to get him for therapy and guess what, he threw up and had to be changed. OT decided to use this changing time as personal care therapy. They removed his soiled clothing and began to put clean back on him. When they began putting on his shirt and got to the point he needed to put his head in the hole of the shirt, they asked him to do so and he leaned forward and pushed his head through the hole of the shirt!!!! Then they asked him to help them by putting his arm in the sleeve of the shirt and guess what, he did that too!!! Once dressed, they told him they were going to sit him up on the edge of the bed. As soon as they said that, Blaine brought his legs around the side of the bed and placed them on the floor, all by himself. He also tried to sit up but with the full cast on his right arm, there was no way he could push off well enough to get into the upright position. They then manually transitioned Blaine into the wheelchair and when they lifted him off the bed he pushed off with his legs to the standing position as they then lowered him into the wheelchair. The therapists were thrilled in all that he did....as was I. :) Each time he does things like that, I cry tears of joy. I also realize the many things I do each day without thinking that I take for granted. Blaine works and works with all of his might to simply assist in getting his shirt on...something I do each day without even thinking about it. There are so many things I have taken for granted in life....but no longer will I do that. But, the best part of yesterdays roller coaster ride was when my sweet boy called me Mom!! What a glorious sound it was to hear Blaine say that. The flood gates were really opened on that one. The nurse and a nurses aid were in the room when he said this and they cheered as I sobbed. They both said it was a great way to end the week. His nurse then said....Momma, hes coming....hes coming! So, while the roller coaster had some down times yesterday, the up times were glorious and I ask that you join me in thanking God for them. I also ask that you continue to pray for Blaine to wake up and for his continued recovery. We also had another blessing sent to us last night. Ashlee and her Mom, Angela, came to meet and visit us last night. Ashlee was also in an accident resulting in brain trauma and she is doing amazing and is going on to do amazing things. We thank God for sending Ashlee to us and for giving us the hope we needed. Thank you Ashlee and Angela for reaching out to our family. We simply cannot thank you enough. You are truly a blessing to us!! Thank you....each and everyone of you who continue to pray for our Blaine!! Your prayers, love and support surround and hold each of us tight as we proceed with this journey and we cannot thank you enough. We love you ALL!! Have a wonderful and blessed weekend!! Love to all from the Robinsons!!!
Posted on: Sat, 26 Oct 2013 12:48:50 +0000
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