Monday, March 28, 2011
She is also not claustrophobic whit it comes to sitting next to me on the couch. Before, even if my arm simply touched her side she would need to move. She couldn't have any pressure on her lungs, it restricted her breathing. I'd put my arm around her and she'd say 'I can't breath' half seriously. On Saturday when we watched a movie she cuddled right up. I find that I'm the one moving now.
Every improvement is subtle, but noticed. I was surprised at how much basketball I was able to watch last weekend. I still feed the kids, but she's preparing the food while I do it. We are more of a team than ever before. I'm not constantly being ordered around like an indentured servant. Any annoyance I used to have was quickly nipped in the butt by the elephant in the room: the woman I'm married to looking at me with an O2 cannula on her face! We used to jokingly say 'You've got a good set of lungs, get up and get it yourself!' Julie of course took this to the next level and would say it to Ben and Jack when they started whining for something. She has a dark and contagious sense of humor. I'm just waiting for the right time to use that line now; and not flinch after saying it!
Julie's PFT was up to 71 today. Dr. Cahill is impressed with her healing. She said today, "I'm getting bored." Jules still had her original steri strips on her chest and doc took them right off. Julie told her it's getting harder to remember to do her 2nd and 3rd neb treatment on time during the day right now. She doesn't sense the need like she used to. Dr. Cahill said "Don't say that; I don't want to hear that." Her O2 sats are still upwards of 100% even when she works out. She has a lower heart rate as well. Where her heart used to beat 125 bpm while doing an exercise, now it's 99 bpm. Bill her PT is really impressed with how well she's doing on rehab. For the record, because I keep getting asked: SHE DOES NOT WEAR OXYGEN, AT ALL. She hasn't worn it since she took it off in the hospital on day 6 or so.
Friday, March 25, 2011
The other night we were in the cafeteria at the hospital and Julie was being her cute self, talking to her Dad and Dave. I was trying to take it all in because she was so beautiful. Julie has another lease on life now. I am having a hard time wrapping my head and my heart around it. I talked to Richard about it and He said, "It's because, it's too big." That makes a lot of sense to me. But how do I trust what's been given to us? It means too much to me to have Julie in my life. If I give into it, will she still be taken away? I would feel so vulnerable.
The fact is, that Julie has been the sunshine on a dark day, and I have I have many of them. Over and over again, all her life she has picked me up. I really don't know what I'd do without her. If ever I knew my Heavenly Father had given me a gift, it was when He sent me my daughter. He knew I would need her.
Like all parents, it's been a great learning experience that I treasure, raising my children. I have always felt extremely blessed. Heavenly Father knows I am a rebellious spirit that takes a long time to catch on. So He knew He would have to kick me in the butt all the way to heaven. I just hope I make it...and He will hold me in His arms and tell me, 'You did your best.'
Julie thank you for the kind words you wrote in the blog. http://www.lungsforjulie.com/2011/03/march-13th-904-am-yesterday-was-special.html
I feel the same way, but you know that already. I didn't mean this to be so long! (I actually had more to say).
With love, Linda
Thursday, March 24, 2011
Tuesday, March 22, 2011
On Thursday, two days after she got home, Ben started having a runny nose. Now it has been passed on to me. Julie and I pass each other in our home like acquaintances. Since about Friday night I have been on the couch at night and Julie walks around the house with a mask on. We are rounding the corner, so hopefully we get through this without getting her sick. That would be terrible. Jack is starting to get sick so we have about 5-7 more days of this.
Friday, March 18, 2011
March 18th, 2011
Everyday comes with a new challenge. Although I love my pink finger nails, lips and toes, a healthy glow of color in my face and of course having to not wear oxygen, it's also not all a walk in the park. Today in pulmonary rehab I weighed in at 114Lbs. I don't think I have ever weighed that much in my life. I was surprised considering I weighed 106Lbs on Tuesday, but went about my day not thinking to much about it. Later this afternoon Dave, me and the fam went for a ride in the car and before I knew it my ankles started to disappear. I got scared and started to cry. My first thought was the prednisone was making me retain water. I called the lung transplant coordinator to have her call the doctor to confirm that: "it is normal for prednisone to start giving you a moon shape face and pretruding belly." My doctor said she expects this to happen in all her patients and she actually had noticed my face looked fuller in clinic today; so nothing to worry too much about. My initial worry was that my lungs could fill with fluid and it would start to hurt my joints so I would have to eliminate my physical activity. On the brighter side of things everyday gets better, I seem to be moving air through these lungs more easily. I've started thinking of and doing more stuff thats normal, like writing birthday cards and wrapping presents and makeing sure the kids are fed, washed, and not too loud. As for recovery, it's only for a season.
Wednesday, March 16, 2011
Tonight, I saw her go to take her oxygen canula off tonight when we were getting ready for bed and said, "Did you just try to take off your ghost canula??" She laughed in her what is currently a weak but cute laugh and said, "Yes. I have been doing it all day." I find myself looking to not kink her tubing in the door when I close doors throughout our house. At 6:00 am this morning when the boys were stirring I wasn't anticipating her walking to the bathroom. Before, her tubing required her to go through our den next to our room and into the hall opening two doors. This always wakes the boys up and since they were one month old, guess who's been getting to take care of them at night and in the morning? THIS GUY. I'm used to it now, but I react the way most moms do when their kids stir too early in the morning or in the middle of the night, I open my eyes wide and at times spring out of bed. My point is, she didn't have to walk that way. She was able to go around opening only one door on the other side of the house from their room and I got to snooze.
This picture was taken with my phone but its a bit of a momento. It's Julie's BiPAP, Humidifier and one of her nebulizers. We can say goodbye to the BiPAP and to this particular neb. We are starting to see the fruits of what many of you call, life. Free from machines and devices (ironically of which I sell for a living). Despite how much these devices and meds have carried Julie, we are glad to be rid of them. After all, what woman wants to look at that mess on her night stand?
Tuesday, March 15, 2011
Julie's CF pulmonologist Dr. Liou was ironically Julies doctor today and as such was the one to discharge her. It is sort of symbolic, its a goodbye to CF centralized care and the opening of a new chapter in post transplant care. The doctor who has seen her since her for the last decade and has helped prolong her life was the one to let her leave the hospital tonight. Julie just said "Maybe James had something to do with that too." The clinicians and physicians who take extra care have so much reward when they see a success. There are so many "debbie downer" situations at the hospital, and as we made rounds to have Julie's lung pillow signed, we saw how much joy it brought people to see her in a relatively healthy state. We are eternally grateful to every doctor, respiratory therapist, physical therapist, nurse, hca, clinicians and hospital staff who have cared for Julie. It is bitter sweet to leave this place. Most would think we would say 'good riddens' but for us its hopefully, see you around, at maybe a restaurant, but not here.
Dr. Liou was very conciencious of people coming to see julie as is her new pulmonologist Dr. Barb Cahil. I am going to make this as clear as Ted Liou did: A nuisance of a bug to you could be fatal to Julie. Please don't come around or pressure Julie to see you if you have been sick, around someone who's sick, or there is any thought that you might carry something. WE HAVE ONLY ONE SHOT THIS TIME. We are so excited about the support and love we have felt through prayers, fasting, phone calls, messages, and emails and hope you will use your best judgement so I don't have to. I am in protection mode as a spouse. Eventually we will have a relatively normal social life but for now, we are hermits.
Monday, March 14, 2011
nebulized treatments initially to help with sputum motilization, but ultimately as long as things continue the way they are, nebs will be a thing of the past. She has had a whole life of things getting worse, so for things to continue to get better, is a new thought process. She doesn't want to get her hopes up and have them dashed. For instance, we spoke with another transplant pt. a few weeks ago that after about 2 months got sick. She had to come up to the hospital, get admitted and go back on oxygen. After a few weeks she was able to come back off. We recognize that there may be speed bumps along the way, and we will face those if/when they come, but for now we will ride this wave and enjoy it.
Holy crap. Just came back from the bathroom without oxygen and I am saturating 99% on room air. This day just got better and it was a really good day. My mom came with me to x-rays, they were clear so Bill Wong the Cardio Thorasic Surgery PA came and took out the rest of my chest tubes. My mom held my hand the whole time. My Dad and Dave came up and shortly afterwards we went for long walks and ate in the cafeteria. Oh what a joy without the Foley catheter. My Dad told me he wasn't expecting to see me look this good and full of color until after the resurrection. The look he gave me was something spiritual and of pure joy. The amazment in the peoples eyes when they look at me now is something I will never be able to describe. I think many loved ones and friends faith in me has been so amazing. I feel good to know they knew I could conquer such a great giant.
Sunday, March 13, 2011
Julie took the gallon challenge last night to get her bowels moving. It only took 32 oz for her. She's a lightweight. She is a lot more comfortable now and with those chest tubes out I am looking forward to seeing how she is feeling.
Saturday, March 12, 2011
I just got home and was with Julie for about 48 hours straight. I actually slept very well at the hospital. Julie had the room cool which is unlike her. Spending so much time with your spouse is really nice. However, I could tell that our true colors were starting to come out yesterday as we started to banter about how to do certain things etc. I had an Art Hendrickson idea that involved art for our wall with some of her equipment. She like any woman was not excited about having something very out of the ordinary on a wall at home. At one point Julie said, I think its time for you to go. I hope you smiled as you read that. We (or I) set it aside and just enjoyed the rest of the night. She won. (I hate that).
I woke up this morning to the Cardio Thoracic Surgeon and his team talking to Julie. They said that her chest tubes are now sort of taking over the job of draining fluid for the body and they are seeing a little less output from the kidneys. They took out a small tube that was sort of in the center of the plural cavity draining near the sternum this morning and hope to take out one or both others tomorrow. I like Dr. Selzman. He is funny about Julie's questions and lightens the mood when it comes to her surgery. The other day she was complaining about the discomfort the chest tubes were giving her and he said, "Would you stop complaining? It's not like you had a major surgery."
This morning Julie and I went to breakfast in the cafeteria. The food there is pretty good and in some cases great. We had a nice hour sitting together. We later went upstairs to get a new meropenem bag for her 24 hour infusion. We were happy to see her bedding had been changed. On our way out there was a code in the room two or three doors down and there were about 30 different clinicians running from different parts of the hospital. Her nurse took the time to stop and tell Julie that she hadn't paged her doctor about a question she had because they were having an emergency. Sounds comforting right? I thought it was nice. Julie said if she were dying she wouldn't want her for a nurse because she took some time to tell us something that obviously didn't take precedence over a code. It was well intended anyway.
I asked Julie if we should loop around the unit (I wanted to know HIPPA information about what was going on with the patient that they obviously needed 30 people to attend to). No joke, there were probably 30 people running to that room over the next 3-4 minutes. Julie said, "Absolutely not! You're one of those people that slows down to look at the gruesome accident while emergency teams are trying to get there! If I'm in trouble get out of the way so they can help me!" You know half of you do it out there. Julie has a better, more humanitarian perspective. Living in hospitals all your life and at times fearing for your life I'm sure changes your perspective. Somehow I think she'd think that way anyway because I can just hear Linda her mother saying the same thing to Rick. Anyone in the health field reading this is happy to hear what she said to me and doesn't like guys like me who want to pry. Hey, none of us are perfect.
The best news of the day is we walked for about 1 hour! She is walking faster and with less dependence on O2. My sats were at 94-95% while hers were the same on .5 lpm of O2. We turned it up to 1 lpm to help with the healing and keep the sats in the high 90's near or at 100%.
The worst news of the day is she has been taking Miralax for a few days and Milk of Magnesia to pass a stool. Today they are changing it to Go-Lightly. Anyone who has had a colonoscopy may know this as the gallon challenge. Its a gallon of laxative to be drank over 6 hours. Yesterday she said, "Why don't we go straight to the good stuff and get this over with?" This will help her to breathe better because the bloating is putting pressure on her diaphragm in addition to the chest tubes.
It's been a week since we had the call. We were here hanging out last Saturday afternoon like any other day. Some reflection later in the next post.
You're a great father and man Rick. I consider you and Linda some of my closest dearest friends. I love you.
Rick Jackson said... Wow!!! Now that we can exhale I would like to take the time to express my sincere and heartfelt gratitude for all of your kind word and for all your thoughts and prayer for Julie and for our family at this time. You are all such a great support to us and it certainly gives us strength. We thank you from the bottom of our hearts.
I would like to express my deepest sympathies to the family that lost their loved one that made it possible for Julie to receive this new lease on life with a pair of new healthy young lungs. Our thoughts and prayer are with that family that they will be comforted in their time of unexpected loss.
As many of you know, and some of you may not know, Julie’s older brother James also had Cystic Fibrosis who passed on 4 years ago at the age of 28 because of this dreaded disease. There is not a day that goes by that I don’t think about James and what a great person he is. We cannot thank enough those nurses, RTs, PTs and doctors at the U of U Hospital CF clinic and care units that have cared for James and Julie over these many, many years. Our love and sincere appreciation goes out to them for their tireless, kind, loving and professional care for James and Julie that most certainly extended their lives beyond expectations.
I thank all of Julie’s close friends that have been with her every step of the way. What a great support you have been to her all her life, in times of health and in sickness you have been there for her. To watch your friendship has been an inspiration to me and I thank you for that. Now Julie will be that same outgoing, energetic girl she was back when she was young. Get ready!!!!
We thank our family members that have been there for us all these years during James and Julies illness. Thank you for all your prayers when we asked for them and thank you for all your prayer even when we didn’t have to ask for them. Linda and I are extremely fortunate to have such good families.
There are some people that just exemplify what the Savior has taught what kind of people ought we to be and they are the Hendrickson family. They are the example of charity, love, service, kindness and giving. They are always there to help and do what they can do. As an example of this, when it was determined that Julie was not able to bear children, Dave's sister Alyson Hendrickson offered to be the surrogate for Julie. She carried the biological twin boys for Julie and Dave. To me this is the ultimate act of charity and love. Thank you to all the Hendrickson family for all your kindness and good works and for caring for Julie, Jackson and Ben the way you do. And thank you to Paul Cardall for inspiring and comforting Julie and Dave through this ordeal. And for all your work in putting together the lungsforjulie concert.
When you have only one daughter, the man she chooses to marry becomes pretty darn important to her father. However, I never had a concern with Julie as to what sort of man she would marry. But when she married Dave we got a little more than we even bargained for. We could not have asked for a better son(in-law). Dave is very attentive and supportive to Julie’s needs (as exemplified here in this blog) and caring for her. Dave is quite a guy. He often amazes me with his ability to juggle four, five or six things going on at the same time. It is quite remarkable to watch. Dave, thank you. It is near impossible to put into words how much we love you for taking such good care of our daughter, especially in her illness. Now the both of you will have a new live together. We are so excited for the both of you to now be able to experience only the things that you dreamed about you would be doing together because of your great faith. You chose to marry Julie because you saw the goodness in her. You saw past here illness and saw the kind and giving person that Julie is and you wanted that for all eternity. It takes a very special person to do what you have done. That shows what an extraordinary person you are. Now, we are so excited for you and Julie to live this new life together that will last for many, many years to come. We are all so greatly bless to have this miracle come in to our lives.
Julie, you bring so much joy in my life. You have taught me so many great and important lesson in this life. You are a teacher to me and to so many around you. I cherish the relationship that we have together. You make me laugh, you make me focus on things that are important in this life, you make me proud. I cherish the relationship you had with your brother James, one which only you and he can fully understand. I am so happy for you. I pray that you will continue to recover from this remarkable surgery and be able to complete you mission here on earth as faithfully as you have thus far lived it. I am looking forward to many wonderful experiences with you and your family.
What touches me the most about Julie’s new lease on life is that my wife Linda will have her very best friend around for many, many years to come. I cannot venture to think what it would do to Linda if she were to lose her very best friend and only daughter. We thank God for this miracle in our lives. And thank you Linda for being such an exemplary mother.
And finally, but foremost, I give my most humble thankfulness to our Savior and Redeemer Jesus Christ, for His love and His atoning sacrifice so that all of us are able to enjoy all of life’s great experiences. For without Him, none of this would be possible.
Rick – Julie’s loving father.
Friday, March 11, 2011
"This is kind of like camping. Well not really, but the tooth brushing with a cup of water, I can't shower..."
"It's cool to see how many people care, you know?""We need to Pray; Pray that I can get better, heal and recover so they can take these tubes out of me."
We had an xray this morning, and of course she walked there too. Rick was up to visit and watching those two together is always entertaining. Julie calls the collection canisters for her chest tubes her suitcases, her tubes her jump ropes, and you'll have to ask me what she calls her catheter and tube that has a bulb on the end of it. We had some good laughs.
Right now we are in endoscopy waiting for a bronchoscope. Her xray looked pretty good this morning; better than yesterday. There is still some junk in the upper right lobe.
Thursday, March 10, 2011
Julie and her doctors are pretty paranoid about getting anything right now, and due to the nature of transplant and anti-rejection, we are asking that no one except for our parents come up to see her. We are appreciative and happy that everyone is excited but its not worth the risk right now. Thank you for understanding.
I have had a few of you ask about her CF disease now that she has new lungs. Julie is CF free in her lungs. Since CF affects the epithelial cells however, (semi-permeable cellular walls), she will still have CF in her digestive tract, and her pancreas. Having it in those two organs is very manageable. She secretes digestive enzymes, but the mucus decreases their function so she takes digestive enzyme pills with her meals. The same thing is going on with her pancreas; she still produces natural insulin, but the mucus makes it harder to get into the system. She manages her CF Realted Diabetes (CFRD) with 1 unit/15 carbs, similar to a Type I child onset diabetes. She suffered the most prior to transplant because the mucus was building up faster than we could thin it out and was a great harbor for complex bacteria like pseudomonas aeruginosa among others. She has traded treating her CF in her lungs to having healthy lungs and managing anti rejection drugs. The clinicians do the managing, and Julie is the compliant patient. She is getting annoyed at staff who aren't willing to get her anti rejection drugs prior to the very minute she needs them. She has started asking for them a half hour before. Again, she is heavily involved in her care.
Julie was just in a lot of pain. Dr. Carveth is helping to sort out a solution to help stay ahead of it. She said it seems to happen at night more. They are taking good care of her. Its been about a half hour and the drugs have kicked in. She just said, "It's amazing how much you need those pain meds." Shes on two 7.5 loritabs every 6 hours with morphine iv prn (as needed) She hasn't needed the morphine very much until this episode since they only gave her 1 lortab at lunch. They had given her morphine before that for the chest tube removal.
Wednesday, March 9, 2011
This morning she took 3 laps around the unit! She feels good. We turned her O2 down to 1 lpm and she still had sats at 100. After she comes out of this sedation from the scope it looks like they will be moving her out of the SICU!
Tuesday, March 8, 2011
Secondly, and a close second at that, I have to express my gratitude to everyone at the University Hospital. From Dr. Marshall and the staff down at Primary Children's who carried Julie into adolecence to the entire CF team here at the U. Dr. Liou has always taken special care of my sweet wife. The Respiratory therapy therapists were an integral part of Julie's life being lengthened. I am so eternally grateful to everyone up on the CF floor who has taken care of Julie. They made it as comfortable as possible to live at the hospital for two weeks everytime she went in. Despite the nuance complaints Cystics might have about the hospital, they and their families are indebted to the staff who take care of them. Thank you, and believe it or not we will miss you very much. I am crying as I type this because I am so grateful for you getting her here. I am so grateful that the doctor who developed the algorithm/formula for when to send a cystic to transplant was Julies Pulmonologist. It couldn't have come from anyone better than him for Julie. Predictive 5-Year Survivorship Model of Cystic Fibrosis When we met she didn't seriously consider it because of the high risk. After finding out that the stats are much better than they were in the early 90's late 80's when they started and as she got more and more sensitive and sick, it was a different story.
Dr. Selzman and the surgical team were so professional and put my wife at ease. He met with her about a month ago and was very confident; exactly what Julie needed. Julie's CCRN Daniel Tolbert was very well spoken and eloquent when giving us updates over the phone throughout the surgery. He was very patient and eloquent. Her anesthesiologist Dr. Morgan was great at talking her through things and making her comfortable...without meds, and then of course with them. He has twins and has a transplant recipient in his family so this was 'near and dear to his heart'. He told me yesterday that the patron saint of transplant is actually a set of twins. http://en.wikipedia.org/wiki/Saints_Cosmas_and_Damian Her RN Stew took care of her the first day and it was like having an older brother. He was very sweet despite the fact that she would never remember. The whole staff here is very attentive and caring.
It is amazing what modern medicine and faith in Jesus Christ can accomplish. I know He had the integral part of this whole process as he worked through these brilliant minds.
She took another walk this morning and is pushing herself. They had to re-dress one of the chest tubes because it was leaking at the site. She is at 35% O2 while she is sleeping. When you are supine (on your back) your O2 saturation tends to drop naturally anyway. She ate some jello so we're on our way to regular food.
Monday, March 7, 2011
Then the irony; They had to change her Mack line that had 2 ports for meds to one with 3 ports and in walks my fraternity brother Rich Dunn to do the procedure. Classic. He is just about to graduate here at the U med school. Despite kicking us out to have a completely sterile environment, he did a great job. He kept her calm as he stiched it to her neck and main the somewhat stressful situation for her tolerable. Thanks Rich.
Julie had to sit in a chair next to the bed for a while while they changed the bedding. They kept her out to create drainage and just sit up and breathe. She's been able to drink water and eat ice chips so that has been a relief for her. Because she was satting so high on 40% O2 (about 6 lpm) they dropped her to 25% O2 (about 1.5-2 lpm). She has a mask that she wears because the oxygen is humidified to make it more comfortable and help with the healing. She took the mask off to drink and her sats didn't change at all. She is satting anywhere from 98-100 on room air. She used to laugh and say there would be no way that she would wear a mask/canula if she didn't need it, but there is a psychological attachment to it. She did say that she likes the humidity though, so that could be part of it.
Thanks for the prayers and all the nice voicemails and messages. We are so grateful for the support. Stay tuned...
Sunday, March 6, 2011
5:40 pm Text from Julie: 'I need you home! I have no time to get ready!' i.e life is very normal at this point. Julie was going out to dinner with her girlfriends to celebrate her 31st birthday March 2.
6:30 The girls are at Cedars of Lebanon sitting down and ordering appetizers. I am at the greatest Mexican resturaunt in the world Barbacoa with Dan Kormylo and the twins warding off looks that people are giving us as they think we are the token gay couple...just kidding.
6:45 Julie Peterson is giving a killer belly dance performance for the Girls at dinner as they receive their appetizers
7:30 Dan comes over to hang out and catch up. "How are you holding up bro?" I tell him that I am fine and we are sort of used to the way of life we are in. The transplant list is in the back of my mind.
7:44 Missed call from Julie
7:45 Missed call from Julie
7:45 at Home Julie calls. "Dave! I got the call. They have lungs for me." "Shut up" I say. "Im serious" "Okay, well get home. What do you want me to do? Julie....Do you want me to pack? What do you want me to pack? JULIE?" "What? Sorry um I dunno just some clothes I guess."
8:30 Arrival and admittion
9:30 On our way up to 5202 to get prepped
9:45 Anesthesiologist and Resident come in to prep us and access her
10:00 Julie does her last Albuterol with CF lungs and we ask for Pulmocort and Servent (never ended up doing them)
10:20 Nurse comes in and says to us Julie needs to take a shower and be in the OR in 10 minutes
10:28 Julies Dad and I give her a priesthood blessing
10:40 Julie starts to really calm down and submit to what is going on. Still nervous but collected and calm
11:15 Dr. Craig Selzman comes in to see Julie and talk to her about her surgery. He is very confident and is warmed up. He had done a Heart transplant earlier that evening.
11:25 Julies last CF cough that sounds like she has a jar full of grape jelly in her lungs
11:35 Versed to the rescue. Julie starts talking off subject about 40 seconds after they administer and she is wheeled into the OR
Between 12:00 and 1:00 am They do a broncoscope and suction Julies lungs and evaluate how well the opposite lung will exchange gasses on its own for the whole body. Julie's left lung is keeping her CO2 levels at a good level so it looks like they will not have to do bypass
1:14 am First incision is made
Between 1:30 and 2:30 they are getting ready to extract the right lung and CO2 levels rise 2 different times. On the second time they rise it is clear to Dr. Selzman and the team that bypass is going to be the safer route for Julie. High CO2 levels can cause brain damage, and it can stop your respiratory drive.
Around 2:48 Julie is put on bypass
Around 3:15 Julie's Right Lung is removed
Around 3:43 Julie's Left Lung is removed as I am talking with the CCRN on the phone
One of the lungs is a little harder to remove than the other. Because of all the infection they are very sticky. The upside is they came out whole and didn't rupture.
Around 4:45 Julie's left lung (I think) is transplanted
Around 5:15 they are sewing up the bronc sp? to the tracea
Around 6:00 Julie's right lung is transplanted
Around 7:20 they are attaching the chest drainage lines (4)
8:00 to 9:00 they are sewing Julie up
9:30 Julie is on her way to SICU for the "Hour of love" where they are drawing labs and monitoring just about everything you could think of to help stabilize her.
10:30 We see our Sweet Julie for the first time. I notice that her nails and lips are more pink than I have ever seen them. She doesn't have the dark pink/purple look I am so used to.
Julie responds very slightly but quickly to my request to squeeze my hand.
Every hour after that she has gotten more and more strong. She is definitely coming back to a typical cystic patient speaking or in this case scribbling her mind. Those of you who have cared for her over the years know exactly what I mean. When I came back from my nap she was actually writing more. They want her to rest tonight and we are hopefully going to be strong enough to take her of the breathing tube tomorrow. When I whispered in her ear when I got back here she turned away with a bit of a scowl. I asked her if my whisper blew her eardrum; she nodded. I laughed because this is so typical of Julie. Her ears are sensitive to sound because of one of her antibiotics she has taken over the years. She had a hell of a time later around 5:30 trying to tell us to turn off the light. She kept pointing up, so I would give her the pencil to write with. She pointed to her eye very slowly despite her hands being loosely tied to the bed. I took the pencil and she made a writing motion with her hand and quickly snatched the pencil out of my hand...she's back. Once we realized it was the lights I couldn't believe I didn't think of it. She always wants the lights dim, even at home. It's kinda hard to sleep despite having sedation when you have a search light on your face! I went to get a snack and then to eat dinner during shift change from 7:00 to 8:30. When I came back her new nurse told me she wrote that she was too loud and she needed a swab in her mouth. I love that she is taking charge of her care and she is 90% knocked out; it is classic Julie to take the bull by the horns. Her nurse from the day told me that those who are a little more spunky like her tend to recover better because they have so much fight in them; even if its with the staff!
Lastly, tonight when the RT came in to do some nebs for Julie, she had to change the pressure support. I don't know the in's and out's but it required more effort on Julie's part to breathe. She was trying to write to me that it was hard to breathe and the RT informed her she was starting a TOBI neb. She is allergic to inhaled TOBI and she started to wave her hand no with
a very stern concerned look on her face. I remembered her allergy and we looked at the chart. Dr. Cahill had made a direct order. These were not her lungs and therefore were not allergic. As the RT was gone to confirm the order, I think Julie thought she was receiving the neb and was feeling the strain to breathe because of the change on the vent. She started to cry out of fear and kept writing that she couldn't breathe. I yelled into the hall, "Can you get the RT?!" The secretary asked me what was wrong. "Just get the RT or an RN!" Someone came right in and explained what was going on with the vent. I assured Julie of all the details of her vitals; O2 was at 100, HR was at 70 and RR was at 20. She was still breathing on her own, it just felt different. We explained this to her as the RN calmed her with some sedation and she really relaxed. Once she was calm we were able to explain to her the change in allergic reaction due to the new organs. It was tough to see her in fear. However, she was safe. I asked her if she trusted me and she nodded. I told her she was safe. She probably won't remember it at all unless this post sparks some deep memory. She is fighting, she is spunky, Our Julie is back! Goodnight.
Can I blow..."my nose" we filled in
I am thirsty.
Did Ice chips? (She wants ice) The breathing tube is drying her mouth.
Did they had to put me on bypass?
And here is the classic one written to her dad:
Are you in a hurry?
Let me write then.
She is as spunky as ever. I am loving that. I still can't get over how pink her lips and fingernails are. She looks so good and is fighting well. I told her "whatever you are doing to fight through this, it is working." Her heart rate is down to around 68-70, O2 saturation @ 100, she is on 40% O2 with her ventilator with a pressure support of 16. It was at 12, but her PCO2 levels were in the high 40's so they turned that up. Dr. Cahill wants those PCO2 levels around 40-45. Her respiratory rate is in the mid 25-30 most of the time. I can see about 11 pumps that are administering pain meds, antibiotics, an anti viral medicine and an anti fungal medicine. A lot of this is preventative, some is necessary of course.
I created this blog for you. I wanted you to know what your mother and I went through in the early years of your life. Tonight at about 11:30pm your mother entered uncharted waters. I want you to know that as she got closer to going into the operating room, she became more and more calm. The priesthood blessing that your Grandfather Jackson and I gave her before we wheeled her down was the power of God instilling peace. It was simply amazing to watch as her demeanor changed. Her anxiety diminished. She began to be calm and collected. Although she was nervous, I saw the courage in her eyes. She believes in God and knows he is as real as you are. She knows that she will be with you for a very long time here on earth and for eternity. You two, are the reason she has fought this long. She is here to be your mother and you to be her sons. Make her proud. Your mother never complains of her demise. She faces it head on. She has a lot of discomfort, fatigue, and anxiety associated with her lung disease that makes it hard for her to breathe. However, she has a myriad of treatments that she abides by religiously in order to lead a "normal" life. She is the definition of perseverance. Don't ever complain of what you are faced with; just look at your options and go to work. That is what Julie does day in and day out. She doesn't mope around at how terrible her life is. She doesn't want anyone to pity her. She lives as though she has a perfectly normal life. Despite being in the hospital for 1/3 of the last calendar year, she still is very involved in what you eat, when you sleep, what you are saying and doing. She is a very active mom. You are the apples in her eye. She adores you. As you may know when you read this, she films you on her iPhone constantly. I don't know when we will watch all those videos, but your early life has been well documented. Stay positive in your life. There is no need to dwell on mistakes or the unknown. Your mother sees things pretty black and white, but her humility and her mercy are overarching qualities. She loves her fellow man and is very sensitive to others feelings. She is forward thinking when it comes to mistakes of her own and of others. She rarely dwells on the past. She is courageous, she is funny, she is happy. She is YOUR mom.
Saturday, March 5, 2011
"why was I