We had a really full day today, and it’s way past my bedtime. (Pretending I still have one of those.) But because I know many of you have a hard time starting your day without your daily dose of Sarah, I’ll give you a quick report before retiring to my bed. (You can look forward to the fun story tomorrow.) Sarah had another “good” day. (I forgot to have Sarah supply me with a better descriptive word.) Her tummy was really giving her fits with gas pains, but we held off on the oxycodone today because we think it might be adding insult to her already angry bowel and stuck to Tylenol. We think that might have helped. Respiratory therapy worked her really hard to get her lungs opened up a little better. She went for 3 walks, and a ride outside, and spent most of the day out of bed. The doctor reported that her kidney numbers look better than they have for a long time. She had another echo (haven’t heard report on that yet), and breathed through a panic attack. She met with Matt again and worked through some more of her feelings, met with Holly from Child Life to ease up on and redo her schedule a bit. Holly called John in the kitchen and asked him to freeze some lemonade and a berry fuze smoothie so she could have ice chips with calories. Have we mentioned before how we love this hospital and the people here?! And we love you! So smile, have a good day, and know that we are very grateful for your love and prayers.
After a very short, restless and sleepless night, Sarah woke up really grouchy and feeling yucky. She was just so thoroughly exhausted and frustrated, she couldn’t sleep. So, after a miserable 5am trip downstairs for x-ray and 8am meds and vitals, she kicked everyone out of her room for the rest of the morning, well, until 10:30 when she absolutely had to be bothered again. At that point, she decided to get out of bed and try to have a good day. Things were a little better with the overload, everybody respected her new requests and we mostly let her be the boss. Doctors reports are still holding steady at “slow improvement” and constant adjustment of meds and therapies. Her cardiologist said that in complicated cases like Sarah’s it’s not uncommon to see emotional unrest, the same type of roller coaster we’ve seen in her physically is also fairly common in her emotionally and psychologically. Two steps forward, one step back. Two good days, one bad.
Her new assignment this week from her counselor was to explore her emotions. She is no longer allowed to say that she’s “fine, pretty good, better, or ok”. Matt is trying to help her find new, more descriptive words to explain how she’s feeling. In this world of intense amounts of steroids and life changing trauma to her body, we’re so grateful that she has people to help her sort this all out and learn how to cope. Early this afternoon, after we had been sitting together quietly doing our own things, she all of a sudden said, “Mom, I think I feel… calm”. It was amazing after the storm hanging around in the morning. Tonight, she told me she feels “content…, even happy and hopeful.” The best thing she learned today was that just because the morning starts out badly, it doesn’t mean that she has to feel that way all day. I’m so excited for her to tell Matt how she worked through this day today. He’ll be so glad to hear that she’s been doing her homework.
I think in most cases, an “overload” of anything isn’t a good thing. Ok, brownie overload, or ice cream overload does sound pretty good to me… Sarah had a few episodes of overload today. The first one was totally my fault. I never considered myself to be a really-high strung person, but I guess for someone just barely coming “back to life”, I was kind of like a tornado today. I showed up to a happy girl sitting up in a chair that said she felt “good”. I thought that was my signal to be a distraction, entertainer, organizer and, well her “company”. Apparently not. She melted after one particular barrage of innocent questions, and we then realized that her level of processing and handling stress or stimulation overload isn’t quite up to par yet. She had a similar breakdown when person after person came in and listened to her, asked the same questions over and over and then gave their specific medical reports. When the pharmacist came in, the nurse and tech were doing vitals and working on IV meds and I was talking with the pharmacist. She just got a little overwhelmed with all the people and talking going on around her. We did some breathing and calm talking for a bit and worked a few things out. She has new signs on her door (one that says only 2 people in the room at a time and another one says to check with the nurse before entering), and a new signal she gives to let us all know when we’re just being “too much”, and then we have to back off. I’m guessing it’s just going to take some time getting used to everything again. A brownie overload would definitely be much more fun. Sarah reported to me when we went outside today that this was one of her “top days”. With the exception of the breakdowns, it was a really good day. She took a really long walk and spent most of the day out of bed. With the exception of some diarrhea and tummy pain, she felt really pretty good (relative to the past month). She tasted even more foods and her kidney numbers are looking better again today too. Top day with a little overload. Pretty sure that as I slow down and we learn to deal with those episodes we’ll have even more top days!
With Sarah on the 3rd floor, we knew we would be encountering more questions about visitors and the rules around her being immune-compromised. So at our care conference last week, we came up with some “germ rules” that will help us all keep her safe.
She’s still so tender in her day to day feelings, and how she feels still changes, even by the hour. We know you love her so much and want to come see her, but we still recommend checking with her or us to see if your plans work with her that day. If you can’t visit, we want you to feel very free to call, text or email. (If you need her phone number or email address, please contact me or Steve. We would LOVE to share it with you!) With so much going on we often don’t answer the phone or text/email messages, but if you leave a message, we promise to take some time to listen to or read them every day. Thank you so very much for your concern, your prayers and your love. Our burdens are so much lighter knowing so many people are loving us.
I got up early this morning to get packed and take the kids to school before I headed out of town. It was kind of an emotional ride to Salt Lake as I couldn’t concentrate on the music I was listening to and kept thinking…about things. It was really hard to leave the other kids this time. It seemed too soon to go, like I hadn’t had enough precious time with them. I was excited to see Sarah again, especially on the 3rd floor, but just didn’t want to leave my other four yet. I realized that being a family apart has made me appreciate them so much more. I have a most amazing husband, that is perfectly capable and willing to take over as cook, homework checker, lunch packer, and laundry man while also performing his Dad duties. My kids have been so patient through this, and are trying so hard to be good and make “single parenting” a little easier for each of us. I am just so very grateful and honored I am to be their mom. My mom used to always tell me that I would never know how much she loved me until I had kids of my own. She was right. I had no idea…. Miss Sarah was having her heart cath when I got here today. She was a superstar. It’s amazing to both of us how absolutely calm she seems heading into these heart caths now. Instead of the anxiety she used to have so often, she just squeezes a hand and patiently waits for what’s next. When I asked her about it tonight, she said she thinks it’s because she has learned and practiced visualization enough that it doesn’t bother her as much, and it’s just really gotten easier. We decided it must be yet another of God’s tender mercies to make this easier on her since they have to be done so often now. Great news, the biopsy came back….perfect again! Despite its high pressures and leaky valves (which should get better in time) her angel heart is still strong. One of Steve’s friend’s small children asked Heavenly Father in a prayer to “please bless Sarah’s heart that it will get used to its new body.” The prayers of the innocent are being answered. Infectious disease doctors stopped by tonight to let us know that they have finally found an antibiotic for her infections that will work on both the blood and peritoneal fluid. (They haven’t grown anything in the cultures for 10 days, but the new stent they placed could potentially be harboring bacteria, so they’ll treat it for a total of 6 weeks.) It’s an antibiotic called Levofloxacin. It will kill any remaining strep bacteria and is much kinder on her kidneys. She has also had some belly pain today, but with her anesthesia-induced nap, it turned out to be a peaceful day. One of the greatest moments tonight was when she was actually enjoying food… She had some peach jell-o I brought from home that must have tasted so good. She actually ate the whole half-cup! Then she ordered cheese toast (made special just for her), apples, and pretzels, with rice crispy treats for dessert. It’s ok that she hasn’t been eating, but it’s another good sign that her kidneys are getting better. She told me quietly, almost in awe, “Mom, food is starting to taste like food again.” The tears welled up in her eyes and got me started all over again. Tears of gratitude, tears of frustration, tears of discomfort, tears of joy…. Our hearts, and our eyes overfloweth.
Sarah started the day “feeling off” and continued with that assessment throughout the afternoon. Her fluid drainage is constant and there doesn’t appear to be fluid buildup in her belly. So she is draining well. However she is experiencing quite a bit of abdominal pain which they are vigilantly monitoring.
On a good note, she is beginning to feel the urgency of going to the bathroom. Her kidneys are coming back ever so slowly. The doctors were planning to skip the weekly heart cath to give those kidneys more rest but true to our experience, things change on a very regular basis.
This afternoon Sarah had an echocardiogram and there was some leakage in the heart valves. Compared to the last echo, there was noticeable difference.
What does it mean? This is usually an early indication of rejection…or sometimes it’s not. I almost feel like chicken little: the rejection is falling….
Rejection can happen any time and more than once. The idea is to catch the early indicators so the anti-rejection medications can be adjusted to compensate. We’ll find out the biopsy results tomorrow night or Wednesday morning.
On the way back from the echo Sarah seemed lost in thought and rather quiet. We ditched the nurse and went outside for 20 minutes. She just sat there soaking up the sun. We have to be more careful with that as some of her meds will make her more susceptible to skin cancer. She didn’t say anything for a long time. Finally she looked at me with tears streaming down her steroid swollen cheeks. “Dad, this is the first time I have been fully awake and aware during my echo. My heart has four chambers.”
Both overwhelmed with the magnitude of the moment, we held each other and cried.
From the messages, emails and texts during the night and this morning it has become painfully obvious that I made a mistake going to bed before I posted an update. I thought I would do one first thing today but Sarah hasn’t had a good morning so I haven’t had time to do it. Sorry about that.
After having a few great days, Sarah awoke to a very painful belly and has been throwing up. She informed me that she will need to have a “mad at the world day” today. I told her I think she’s probably earned one.
Compared to all the days post transplant, she had a fantastic day yesterday. Her kidney function has had some improvement and we are just hoping to see that trend continue. She took her longest walk yet. They have changed her antibiotics to one which is newer and much stronger. It’s softer on the kidneys and they didn’t think about it sooner because it is only available to those over 18 years old. They don’t have that frame of mind too often in a children’s hospital.
Her diarrhea has slowed down some but her hands are shaking more, which frustrates her greatly. She tried to eat last night but didn’t know what sounded good so she ordered pickles, olives, watermelon, chicken noodle soup, peaches and popcorn. She had one bite of everything and was done. Then threw it up this morning.
Today is her 4 week anniversary. Four weeks ago at 4:30am the surgeon came to the waiting room to give his report and to let us know Sarah was being moved to ICU. It has been a blur. Hard to comprehend most of the time and when I think about it too long I become overwhelmed with a flood of competing emotions.
The operator just came over the intercom with a code blue announcement up on the 4th floor. I’ve heard them before but for some reason this time my heart sank to the bottom of my stomach. I said a quick prayer asking Heavenly Father to bless the doctors to do a good job. I can’t imagine being the parents.
I don’t know everyone reading these posts. We all have different religious backgrounds, education levels, political values, family situations, employment and life struggles. But we can all relate to the precious and pure nature of a child.
There is a lot of pain in this building. However, the miracles which occur within these walls are numerous. The compassion runs deep and the love of a parent for their child grows stronger. There are only two choices to be made here. We can choose to be overcome with doubt or we can choose to not. We can be angry or not. We can ask God why are you doing this to us or we can ask Him what do you want us to do here. What do you want us to learn?
We have seen some really miserable people who have decided to be mad with their situations. It makes this difficult time so much worse.
So, we live for today. One day at a time. We try to make the most it and see how many people we can touch for the better. It makes the hard parts more doable.
The question today is what are we going to do today to make the world around us better? Sarah just told the respiratory therapist she wasn’t sure she could do her therapy today but she was willing to try. She then did a smash up job. He was pleased and on his way out he told her how great it was that she was willing to try even though she felt miserable. She then blew me away when she thanked him for being patient with her.
So what are you going to do today?
For the first time in more than four weeks, Sarah took a breath of fresh air today and mother nature was nice enough to make it rain. The air was clean and fresh. It was a bit too cool for her but she couldn’t inhale deep enough and didn’t want to come back in. She just held her head back, closed her eyes and took slow deep breaths. We talked about standing on a beach and smelling the warm salt air, feeling the sand in between her toes. Her smile slowly grew bigger. Well, that was until the image in her mind was interrupted by her brothers throwing sand at each other. It was kinda funny.
It was a beautiful day. Rain, clouds and all!
Sarah graduated from ICU today. After telling the doctors two days ago her goal was to get out of ICU, they did everything they could to help reach her goal. She is looking so forward to a quieter night. Beside a different pace on the 3rd floor, I think it was a huge psychological boost for her to see progress.
On top of that, the room has a nice view, plenty of space and is right next door to her boyfriend Zach. Zack’s mom, Julie, told us that somebody asked him who his sister was and he said, “Sarah”. He was sure glad to stop by and wave to her.
She was intubated for her heart cath yesterday and her sore throat is even sorer. She speaks softly and only two or three words before she takes a breath but I can hear a slight difference in her voice since moving up.
By the way, her biopsy results came back perfect. No rejection. Her kidneys slowed down again today. Most likely from the contrast dye used in her cath. With unhappy kidneys, the dye just makes things worse. Hopefully over the weekend they’ll forgive the hit and wake up more.
She has become real shaky again and weaker. We’ll do stretching exercises tomorrow and see if we can help her perk back up.
You know she’s worked hard when she falls asleep in her wheelchair.
The other day Sarah decided she would try to eat something. She hasn’t eaten more that a few bites of solid food for 3 1/2 weeks. She asked me to call food service and order some sliced pickles. She loves ’em but ended up only eating one slice. So, when the person answered to take our order, I heard, “What can I get for Sarah? SARAH? I haven’t talked to Sarah for a long time. You’re in the ICU. I hope she’s doing okay.”
I told her Sarah had received her heart and was working on her recovery. She started to cry, “Oh, that’s wonderful. Please tell her I love her and I hope she feels better.”
Sarah has strived to make everyone that has contact with her have a better day. She is amazing. She does it even when she is feeling horrible and it doesn’t matter if you’re the doctor in charge, the person sweeping the floors or a patient walking by her door. There is always a huge smile and a wave.
She is resting tonight after a full and exhausting day. She had another successful walk today. The furthest yet. She was incredible. Then she had an ultrasound on her belly. A great sign of progress was when they had her go down to radiology instead of doing it in her room.
Her fluid output has slowed way down but her belly had swollen to what seemed like popping stage. The ultrasound determined that there was very little fluid in her belly but instead just gas build up trapped in her bowels from her feeding. It is slowly working itself out and she feels a little more comfortable tonight.
Next she headed over to x-ray for a chest and abdominal pictures. They looked good. Her nurse and the X-ray tech were so careful and gentle with her. They spoke so soft to her. Their tender care made my emotions bubble up… but only for a second. I pulled it back together. The X-ray room was outfitted with programmed lighting. The tech asked her what her favorite color was: purple. The next thing you know, the room glowed purple and their lead aprons sparkled in the light. It was so cool. They should do this for adults too!
She rounded out the day with her weekly heart catheterization to monitor the internal pressures of the heart and take a small biopsy to test for rejection. Results from that won’t be back until tomorrow. But while they were in there they put in a new picc line in her left arm. That’s the IV that goes directly to her heart. The IVs in her arms keep failing at a very quick rate.
They also did a TEE. Sorry I can’t remember the full name tonight. It’s an echocardiogram inside the throat looking at the back side of the heart. The concern was the bacteria from the infection could have attached itself to the valves in the heart. It was a very large concern but they downplayed it. They could find no evidence that the bacteria was there. Keep those good time hits rolling!
So far it is looking encouraging that she will be moved out of ICU tomorrow and up to the surgical unit. Our fingers are crossed.
Now the rest of the story with the food service girl. A couple of weeks before her transplant, Sarah asked me to order some food for her. We try hard to have her do as much on her own as possible but she just wasn’t feeling well. It was busy and I had to wait on hold for a few minutes. This same girl answered the phone and asked, “What can I get for Sarah?”
After placing the order she asked me if I had just a second for her to tell me a story. Aaahhhhh, sure.
She explained that earlier she delivered some lunch to another patient named Sarah. As she walked in the room she announced “Sarahbeara, I have your lunch.” The little girl scowled at her and said “my name is Sarah, not Sarahbeara!” She was caught off guard and a bit dejected.
Then she said to me, “it was then I realized there is only one Sarahbeara in my life and she makes me so happy. I just wanted you to know.”
You know what? She makes me happy too.