Cuffs and Suctioning

Well, too much of a good thing can be a bad thing!! Ryan had a couple of great days and then, he bottomed out!!! Yesterday, he just couldn’t go anymore and about 2:30 during his “Tetra Topics” class, he had to leave and be transferred back to bed. Tetraplegic is the same as quadriplegic; therefore, Tetra Topics – aren’t’ they clever? It sounds better than Quad Topics! He started getting chills (his temp was at 95) so we covered him with blankets then not to much later, he was burning up (temp of 100.8); so here come the ice packs! He couldn’t get comfortable and we had to suction him more than we have had to in weeks. Dean and I are getting pretty good at suctioning. Last night was the worst night he has had since we have been here. I asked him if it would be ok if I stayed and slept in the recliner chair because I was worried about him (we are trying to find ways that he can give him some control – so we try and ask for permission to do things!). He said, “No mom, you need to go with dad and get some sleep.” I said, “Well, let me stay just until you go into a deep sleep,” he then closed his eyes really tight and said, “OK mom, I’m asleep!!” As the sweet nurse in ICU at Eastern Idaho Regional Medical Center said, “He carries you when you are weak and accompanies you when you are strong.” He has such a fun sense of humor even when he feels terrible!! I guess I didn’t give him as much control as we had talked about, since I ended up in the recliner all night. Ryan made me go take a nap this afternoon!! I don’t know if we have talked about suctioning before or not, if so just close the website, NOW! Because Ryan can’t cough or get the “junk” out of his lungs we have to suction him. This involves taking a rubber catheter (⅛” – ¼” in diameter, sewing terms, or as Dean says, 14 gauge in man terms!). It is open at the end and has a small opening or hole on the side near the bottom. It is about twelve to fourteen inches in length.
We “glove up” keeping one of our hands as the dominate one. This hand is supposed to touch only the catheter. We use the dominate hand to hold the catheter which eliminates (or at least we try) the introduction of any germs or contaminants into his trachea. We push it thru the trach until we hit “bottom”, which can be at the base of the lungs or where the “secretion” plug is located, depending on how thick or thin the secretion plug is. The catheter is connected to a suction hose. There is a valve in the catheter that we cover with our non-dominate hand to create the suction. As we withdraw the catheter we twist it as we slowly pull it out, while creating suction by covering the valve; hopefully getting some of the mucus. We usually do this two or three times during one suctioning. Last night he was suctioned about five times from 5:30 to 10:00 p.m. and again from 3:30 pm to about 6:00 a.m. (long night)! When we do the suctioning, not only are we trying to get the secretions out, but we also pull all the oxygen from his lungs so it is very uncomfortable – he says it doesn’t hurt, but it takes him a second or two to catch a breath! The docs ordered that if Ryan’s temperature rises above 100.5 then they need to figure out what is causing it. Because he was having such a bad time, early this morning at about 6:30, they came in and took x-rays of his lungs, blood samples, urine samples and some kind of sample from his IV. By the way, I think I said the IV was gone, I meant the machine and pole, he still has the IV in his arm (called a pic line) which will remain in the event they need to use it – which we did today! Bingo, the x-rays of his lungs showed that he has pneumonia in his right lung. So, here come the antibiotics, saline to help flush his system, etc. etc. They keep a pretty close watch on him, so they catch things pretty quickly. He is feeling much better this afternoon. When they come in and turn him every two and a half hours, it loosens up the mucus plugs. That is good, but then it causes him to choke. If they don’t get it quickly, he can quit breathing – which he did and we had to use the “ambu” bag again!! The tech that was helping to get him breathing again couldn’t believe how calm Ryan was. She talked to him after and asked him how he stays so calm. He told her “practice!” He is such a mess!!! I told his doctor that the ONLY good thing about Monday night when I had the first experience with the ambu bag was that now I know how to use it and that I can if I need too!! The tech that was here when we had to use the ambu bag, I don’t know her name, had a “trainee” with her. This young lady, Lindsey, has one year left of nursing school and this was the first time she had seen a patient “quit breathing!” It really startled her; she saw first hand what a patient actually does rather then reading it in a textbook. Boy, we are way ahead of her; Oh, I forgot we haven’t read the textbooks!!! I think part of her emotions were based on Ryan being right near her age, and then seeing all the cards, posters, and LOVE hanging all over his walls. I think she saw that he is actually a real person and not a diagram in a textbook. Dean talked with her later and she said that she had “calmed down” and was OK. I guess the first time can be hard for everyone!! He was so hungry tonight, after not eating much for 24 hours, he ate a 12” seafood and crab sandwich from Subway! The food here at the hospital is actually quite good, but after being here a month, the menus have started thru the second rotation. Being on a vent, the taste buds and smells don’t work real well, if at all. Because the air is going thru the trach rather than thru the nose and mouth (across the taste buds) he doesn’t have a sense of smell or taste, but he said that the sandwich tasted really good!! Several people have asked about the “cuff” opening. Here is a picture of one. The cuff guards against aspiration of fluids, food, or saliva into the lungs. The “dye” testing that they did when Ryan first got here, which luckily (tender mercy) determined that he is able to get air and foods down the right passageways, will eventually negate the need for the cuff. The cuff or balloon like thing at the bottom is deflated to allow Ryan to talk. Deflating the cuff allows air to flow up thru the voice box so that he can make sounds and speak. Now he has to re-train his throat muscles to allow air to move thru the voice box when talking and keep air down in his lungs when not. If he lets too much air up thru the voice box, he doesn’t get enough air into his lungs to keep breathing. He has to concentrate hard on talking, because we talk when we let out a breath. Tricky, huh. Dean says it’s like holding your head out a car window going 40-miles an hour and trying to talk: DON”T TRY THIS AT HOME!!! Hopefully and with blessings from Heaven, Ryan’s lungs will develop enough that he won’t have to have a trach. Until then, the goal is to help his lungs gain enough strength that we can even get rid of the trach with the cuff and go to a stainless steel trach, which doesn’t have a cuff. Then he will be able to talk 24/7. The stainless steel trach is much better for long-term use; it reduces infection. It takes all kinds to make the world “go round!” As we are trying to get Ryan’s chair ordered, the wheelchair-ordering guru, Pat, asked Ryan what color of straps he wanted on his chair. The chair that he is using and most of the chairs at Craig have rainbow colored straps. Ryan said he didn’t think he wanted rainbow colored, he would just stick with black (I didn’t train him very will in the color coordinating area – he is so plain!). Pat asked him if he had noticed bright purple colored seat cushion covers on some of the wheel chairs. Pat said that Craig had to go with the rainbow colored straps and the bright purple seat covers because they were finding that people from the outside were taking the straps and pads off of the chairs, leaving their old worn out stuff, when the chairs were left alone at night. Having the rainbow straps and purple seat covers in the community “flashes” Craig Hospital. He said that since they have gone to the more “colorful” straps and pads, they haven’t missed as many. Pat said that one night they found an old worn out chair in one of the patients rooms where his new chair had been the day before – pretty bold, huh! Ryan is feeling much better tonight and so I guess I will have to go sleep with Dean!!! We just wish we could take the pain away. We love you all and continue to thank our Heavenly Father for so many blessing in you as our family and friends. With love, Dean, Terry and Ryan

Just a Quick Note

Ryan has had a good day today. He was up in his chair for four and half hours and had his cuff down for eight hours today and another two hours tonight. We went to several classes with him today. One was a tech lab: he was shown how to turn on lights, computers, TV’s, etc. Some of the equipment can use the sip and puff technique and others would use voice activation. It is expanding our very limited vision of what people with limitations can do. The other class we went to was his Recreational Therapy Class. There are four people in his group and they are planning an outing for next week on Thursday, June 16th. He will miss making decorative bath oils in the recreation room!!! They are going to go to Evergreen(?) Lake, which is right near the hospital. They will be out of the hospital for about four hours. One of the requirements is that Ryan has to be able to sit in his chair for five and half hours straight. He is working up to that level so that he will be able to go. He told me today that he is scared to go out. I asked him if he was scared to leave the hospital because he is secure here or if he is concerned about other people seeing him for the first time. He said that it was because he would be out in public for the first time, but he knew he needed to do it. It seems like the first for everything is the hardest. It gets a little easier each time after that. The kids from Maplewood Ward (I call them kids because they are 20 years younger than I am) have been so good to come and see Ryan. He usually has a visit from someone in the ward at least every other day, if not everyday. They are great! Ryan said tonight that he can’t believe that they come to see him, because they don’t even know him. They talk about what they are doing, where they are working, what classes they are taking at school, where they from, and their families, etc. He is really grateful to them for being so supportive and kind. Scott has been out of town all week at Scout camp. I asked him how many scouts were going, and he said, "Two." I asked how many leaders, he said, "Five!!!" I think scout camp is really for the "big boys!" Becky (Scott’s wife, whom we love dearly!) has been posting the updates to the blog site. She is leaving to a conference in Phoenix the next couple of days, so we won’t have a post for a day or so. Becky, thanks for your help!! We continue to be amazed at the number of friends, new and old, and family who continue to bless our lives and help us thru this. We can’t say enough how much we appreciate it. Love, Dean, Terry and Ryan

Vincero!

Terry got her wish and got to have some input on the color of Ryan’s power wheelchair, which was ordered for him today. She tried to convince Ryan that bubblegum pink was the "in color" but he would have none of it. Instead he ordered midnight blue. It takes about 6 weeks for the customized chair to come in, assuming the insurance company will approve it (aprox. $20,000.00 dollars). They measured Ryan from head to foot to make sure the chair will properly fit him. This particular model even has Monroe shocks built in the wheels to help absorb the bumps as he goes out in the real world. President George Johnson (he and his wife came to visit Ryan over Memorial Day) was Ryan’s Mission President while he served a mission for the Church of Jesus Christ of Latter-day Saints in the Philippines during 2001 – 2003. He sent Ryan a nice letter today and with his and Ryan’s permission, I am sharing parts of his letter. He stated very well some of the feelings and lessons that we are learning. "My heart aches for you because of your additional suffering. Though it is you and not me enduring your agony I find some solace in what the Savior said to Joseph Smith: "My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high…all these things shall give thee experience, and shall be for thy good. The Son on Man hath descended below them all. Are thou greater than he?" Please do not grow weary of the counsel from those of us who love you so much. I know things are easier said than done, but the truth is we ache to help you. We are doing the best we know how. In our praying it is well to remember that the purpose of prayer is not to change the mind and will of God. The purpose of prayer is to put our will in harmony with God’s will, and "to secure for ourselves blessings that God is already willing to grant, but that are made conditional on our asking for them." (Bible Dictionary, pp 752-753). The thoughtful observer will ask, "If God stands so ready to bless you to recover from your injury, why did He allow it to happen in the first place?" This is where your understanding of the atonement is so meaningful. The atonement is a plan of happiness, not a plan of easiness. It is a plan of tutoring and stretching but not painlessness. The more unremittingly the violin string is stretched the more sublime the music from the string will be. The Savior taught an imposing lesson in John 9 : 2–3: "As his disciples asked him saying, Master who did sin, this man, or his parents, that he was born blind?" Jesus answered, "Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." Each day we are blessed to understand more how your experience continues to bless countless others. In a sense we could say that someone has to be our exemplar in what is one of life’s most fearsome challenges. We esteem you for consecrating your life to a higher cause we do not yet comprehend. Vincero!" When I read this letter to Ryan he got tears in his eyes and mouthed the words, I sure love that man. Just by reading his letter I can see why. Ryan had a good day today. He was up in his chair for 5 hours and was able to use his voice for the same amount of time. It wore him out. He took a 3-hour nap but he felt good about the increased time he was able to stay up. Tomorrow they are planning to have his cuff down for 8 hours. They will continue to add 2 hours a day if he can handle it. He said, "I never thought it would be that hard to sit in a chair!" After the not breathing episode last night, the doctor ordered blood tests and they found that his blood was thickening. He had to go down thru the "maze" to the Swedish Hospital and have a body ultra sound done. We assume that they didn't find anything, because we haven't heard anything yet. I am sure we will get the results tomorrow. The head of nursing came in tonight and just wanted to make sure we were OK after the not breathing episode. She asked if we had any concerns about what had occurred and Dean told her that we were concerned that it took the staff too long to respond. (Dean came in from Farmington shortly after the "scare", he could see in my face that something had happened so I gave him the details.) She asked us what had happened and we told her our version. In short, we told her that I had called for nursing help and then respiratory STAT before Harold went into the hallway and asked for help. She said next time I need to tell them that Ryan is not breathing. That way the staff knows that it is an emergency and not just that he needs some help! It was good to talk with her in order to get a better understanding of what we need to do, because we don't want to panic. She said that it is good to know the concerns of the families, that way she can work with her staff and try to figure out better ways of doing things. She also said, not in an excusatory way, but a real concern, that they are all just human and are trying to make this as easy as possible for the patient and their families. Any concerns or problems that we have, she would like us to bring them to her attention so she can try and improve their day to day procedures. It made us feel a lot better to be able to talk with someone. We appreciated her concern. Most of you know Meredith, Ryan’s girlfriend, thru this blog site. Meredith is in the Dental Hygienist Program at NAU and had to go back to Flagstaff for a three week class, which ends the last week of June. Ryan would like Meredith to come to Denver and stay the months of July and August and was wondering if we could try to find her a job while she is here. As we all know, it is not what you know it is who you know when it comes to finding work!! If anyone has any ideas let us know and we can put Meredith in touch with a possible leads. She has already had experience in a dentist’s office. Ryan says, "THANKS!" We love you all and appreciate your continued love, support, and prayers. We also appreciate the thoughts, wisdom, and counsel, which we have received from many of you. It truly helps us see that we are children of a kind, gracious, and loving Heavenly Father and are in His hands. May God bless each of you. Dean, Terry and Ryan