First 5K
The annual run for Children’s was this last weekend and Noah ran his first 5K. And I mean he RAN it. Barely stopped, barely complained. The last half mile was incredibly hard for him but he pushed through and made it to the finish line.
It was so much fun. It’s fun every year and hopefully a lot of money was raised for uncompensated care. The fund pays for medical expenses not covered by insurance for families. It means that a child will be given the best care regardless of a family’s ability to pay. It’s amazing. I can’t describe the feeling of suddenly knowing that getting care for your child is possible. That you won’t lose your house, your car, that you won’t have to spend hours fundraising while your child is in the hospital. It’s like being able to breathe again.
There’s still time to contribute to the event so please consider donating (this is my once a year plea for donations).
Camera Woes
We’re so spoiled. I’m so used to being able to take a picture, download it on my computer and upload it into a post in a manner of minutes. Then my camera broke. Actually it broke months ago and I haven’t done anything about it so I am at the mercy of 1. not taking pictures 2. Having Paul take them on his phone, then upload them to Skydrive and then I have to download them. It’s not exactly a smooth process which is why I haven’t posted anything about the Run for Children’s or Zoe’s first day of Kindergarten or anything else. It’s kind of blah without a picture. So this is a little apology and a sneak preview for what I may actually get to sometime soon if doctor’s appts, homeschooling and home improvement projects don’t eat me alive.
Summer
It’s been a long summer in many ways seeing Zoe continue to have nausea everyday. Almost three weeks ago now we switched her back to Tacrolimus to see if, indeed, the Cyclosporine was the cause of her nausea. Everything was so convoluted because she had her colon back up in the midst of everything else but all her specialists finally agreed that it wasn’t the primary cause of her nausea so before “looking for zebras” as they call it and doing some completely unbelievably invasive stuff to her they decided to try her back on the Tacrolimus. Eleven days into the medication change something shifted in her. It was like a light coming back on. A couple more days and it was evident that Zoe was back. At one point this last weekend Paul said, “I had forgotten what she was really like”. On Saturday, for the first time in 81 days she had no nausea! The most striking thing is that at the same time a new medication was causing her to have a tender, distended belly and mild constipation. If you can run around with your belly over 2 inches larger, firm and tender and say you’re feeling great then it must have been pretty bad before.
Although she is still having nausea at least once a day, it is milder and short lived and is more consistent with her colon issue from earlier in the summer. I’m hopeful her body is on the mend but it has all taken a toll. She has suffered from full body hives in the last month plus and required almost 2 weeks of steroid treatment to get them under control and her magnesium level in her body dropped enough to give her eye tics.
It will still be up and down for awhile but things are finally looking up. Kindergarten starts in two weeks and a certain someone can hardly wait.
Thank you
Tomorrow marks the 5 year anniversary of Zoe’s transplant but today is the day her donor died. His/her body was kept alive for a few more hours but sometime in the morning the family was told and they were given the choice to donate organs or not. Today was a terrible day for them and I hope that everyone will join me in praying for them as we all celebrate such a huge milestone for Zoe tomorrow. I hope knowing that their baby gave life to at least one other child comforts them. They’re such a beautiful family to me. I don’t get to thank them in person but I’m writing it here. THANK YOU.
Letter to a donor family
I never heard from Zoe’s donor family. It took me nearly a year to mail our letter to them although I wrote it in the CICU room. I think about them almost every day. The nameless family. Did I write too much, too little, wait too long, did I somehow offend or hurt them with preconceived ideas? Or am I so wrapped up in myself that I think I did something to cause their silence. Maybe their silence is not caused but is all that bleeds from them. What could you really say to us? All there is between us is a tragedy and a miracle; no room for idle chit-chat.
I decided to write to them again as we approach the 5 year anniversary of their baby’s death. I am selfishly so jealous of all the families that have heard from their child’s donor family. They have pictures and know the story and are raising their children to honor that baby’s memory. My kids know that another baby’s heart is inside Zoe but it’s not tangible. Meanwhile, I have obsessively searched the internet to try and find information on a baby’s death in the first few days of August 2006 but the geographical distance to cover is enormous and really I should just respect their desire to be unknown.
I’d love for them to be comforted by Zoe’s life, to maybe meet her someday, to thank them in person but I don’t know that will ever happen. It’s such an intimate topic between perfect strangers and I’m going at it completely blind. I have no idea who is reading the letter and so I have no idea what to write or how to write it. I have to hold myself back from begging them to write me but it’s their choice. Even if I never have a name, a face, a story, there’s a baby in my head and he/she was amazing and loved and lived a life too short and that life is echoes inside the body of my child.
We’re Home
The rest of our stay is a little bit of a blur. They cancelled the colonoscopy scheduled for Wednesday morning because they couldn’t get her cleaned out. They speculated about why and they kept her on clear liquids all day and rescheduled it for Thursday. They had me give her Miralax every two hours for nearly 48 hours, tried a couple more invasive things that I won’t write about here and she and I spent two nights in a row with nearly no sleep. On Thursday morning she was still not completely cleared out, she had not eaten since early Tuesday and had barely eaten anything for the day or two preceding. She was hungry, exhausted and fed up with being messed with. There were many pleas to go home, lots of tears and then they almost cancelled her procedure again but the doctor kindly decided we had done our best and he would have to procede. She was scheduled for 12 or 12:30 but they were running late and she was looking worse and worse. I took her to the playroom where a young man happened to be playing a guitar and singing, “He works all things for the good of those who love him. Even when things look at their worst He works all things for the good of those who love Him”.
Her 12:00 stats showed low blood pressure indicating dehydration. At 12:30, an hour late, they came to take us down to the prep room where the anesthesiologist would decide whether we put in an IV, hydrate her for 2 hours and then procede. I was a mess. She was starving and hadn’t eaten in so long and I knew she couldn’t take getting an IV unsedated nor could we handle starting the process all over again. The only saving grace was that in her overwhleming fatigue she fell asleep, sitting up, in the wheelchair. After completely losing it with the nurse and child life they helped me pull it together enough to talk with the anesthesioogist. I had to talk the anesthesiologist into 1. Doing the procedure as scheduled (or the hour and a half late they were running) and 2. Placing the IV after she was under sedation instead of before. When he finally agreed (mainly because he understood that she will have to do this repeatedly in her life) and I stopped crying, I felt like I had just run a half marathon. Although I was able to spare her getting an IV, the sedation process went terrible because she had fallen asleep in the wheelchair. She woke up as I laid her on the table and although I tried to comfort her she panicked and the surgical team held her down to do the sedation before I could ask them to let me have her in my lap. In my head I could hear myself saying, “STOP, slow down, let me put her in my lap” but I couldn’t get the words out. She talked a lot about that experience over the next day even going so far as to being angry with me for not stopping it. Although I lucked out and she, hilariously, doesn’t remember our altercation on Tuesday night because I think she was still actually asleep, this one she will remember for a long time.
Post procedure was really rough. She looked dehydrated even after fluids, her heart rate and respiratory rates stayed high and she was extremely nauseous even with Zofran. She finally ate in the evening with gusto (as everyone wanted her to) only to get a distended belly that was hard, cramping and yet was unable to expel the diarrhea.
By Thursday night she was beyond anxious between the dose of medicine she had to take every 2 hours for 48 consecutive hours, invasive procedures, the IV in her arm and the unpleasant time she had going under sedation. Friday she looked pretty poor the first half of the day and her eating steadily decreased; I was looking at taking home a child who was sicker than when we arrived. The results of her colonoscopy showed that her colon was backed up and distended which can happen to any child and takes a significant period of time to recover from. We don’t know why it happened, if it will prove to be a one off or a chronic condition for her or even if it was the cause of the nausea and stomach pains; it could be weeks before we know for sure. Over the next couple weeks we will watch her very closely and decide whether she is showing small improvements. If not, then her team will begin to explore other causes of her symptoms. We’re very grateful that all the scary explanations were ruled out in this hospital stay including the transplant cancer but as the cardiology fellow said, “we couldn’t fix her this time”.
This was an incredibly emotional and exhausting hospital stay. It was the first time I was viewing events with the knowledge that whatever done to her will be remembered. I will be forever grateful to the Child Life Department who spent many hours with us over those five days helping to prepare Zoe, put a smile on her face, support me and advocate for her. Her nurses were excellent as was the cardiology fellow who stood in the hall and helped paint a realistic picture, the night resident who sat on the floor with me instead of pulling up a chair and the senior resident who formulated her after care plan and then explained it with the best communication skills I’ve seen thus far.
We came home late Friday night after seeing her perk up in the afternoon. She was a much happier girl today and had better energy but she still feels bad enough to say she wants to go back to the hospital because her stomach hurts. Her eating is still in small amounts and her poor belly, although better than yesterday, is still distended and painful. In true childlike fashion she said to me, “but Mom, it’s perfect for a drum”.
Battle Royale
Oh boy. When I wrote yesterday evening that Zoe was doing well it was a bit premature. No one had actually asked much of her yet and so I was some what easily able to talk her into anything needing to be done. Get her to lay down on the table, take a set of labs, drink this medicine mixed in applejuice. Not a total walk in the park but nothing to complain about. Then came last night. Late in the evening it became clear that the powdery substance we’d been giving her all day was not causing her to poop. Guess what HAS to happen before a colonoscopy? So at 8:00, bedtime for one very tired and cranky little girl, the resident decided she needed to have the stuff every 2 hours instead of every 4. Hmm. 10:15 rolled around and it was my job to 1. wake her up and 2. get her to take more medicine. Once Zoe is asleep its like trying to wake someone who has taken a pretty hefty sedative. I couldn’t get her awake. I tried for several minutes before I got her awake and guess what? She DID NOT want to be awake and she most certainly didn’t want anything I was pushing. Several minutes later with the aid of Arthur I was able to get some of it down her. Not all of it but some of it before her sick tummy started gagging. Then I was informed that the team was considering putting in an NG tube to continously pump this substance into her belly and if she didn’t poop by midnight that might happen. I laid in my bed (and by bed I mean plastic couch) and thought about her getting an NG tube again. I pulled her out of bed again, stripped her and put her in a warm shower for several minutes. I did belly massage for over a half an hour while praying over her, I had her sit on the toilet while watching Arthur cartoons and talking on the phone with Dad. Nothing. Part of the problem is that she didn’t want to poop because it hurt and the thing I’m learning in this hospital stay is that Zoe is the same child in the hospital as at home; when she makes up her mind no amount of cajoling, begging, or threatening will change it.
At midnight we tried again with less luck, at 2am everything went downhill. I had appleasauce, apple juice, crystal light, kool-aid, a fancy straw, a cup, a syringe but she wasn’t having any of it. She started throwing one of her famous temper tantrums where she stomps her feet, throws her head back and screams as loud as possible, “I DON’T WANT TO”!!!!!! You can’t reason with someone in that state and I tried and tried and tried. I finally set her on the floor, sat down, wrapped my legs around her arching body, hugged her to me and squirted a tiny bit in her wide open, screaming mouth thinking that once she realizes the taste isn’t bad she’ll want some more. DOUBLE WRONG with a side of wrong. It made her even more mad but by this point all I could envision is her screams as they put in an ng tube or did an enema so I kept talking and kept doing little squirts until I was fearful she’d never talk to me again. After getting almost half of the substance in her I just rocked her while she cried and she fell asleep in about 7 seconds. I sat and cried and rocked her while the nurse paged the resident again and said that mom needs him to stop insisting that Zoe take the meds and come down and see how impossible it is. When he showed up he found a mom rocking her passed out child on the floor crying. We had a lovely discussion, he really was a nice man and in the face of what he came into he didn’t see any reason to treat this as an emergent case where we put a tube down her nose or force down any more medicine. He did want to see if we could do a suppository at which point I asked for that magical anti-anxiety medicine they use down in the surgery center. It makes them happy and float and it was just what she needed (I could have used a dose as well). Wonder of wonders he was able to come up with some of it or something approximating it and when we put in the suppository she didn’t even know it. The only way to convince her to swallow that medicine was to explain that it was not the previous medicine because I told the doctors, “No more of that!”.
That brings us to 5am where I cried myself to sleep thinking I pushed her too hard and when she wakes up she may not like me anymore. The new team just came on and I have 2 AWESOME nurses, and a great resident who are huddling right now to decide how to make this colonoscopy happen today despite the situation. I’m currently huddling with myself and Jesus trying to figure out how to make anything happen for the rest of the stay if her stubborn refusal kicks back in.
768 Days
Zoe went 768 days between hospitalizations. That’s an impressive record and one we’re so thankful for but Monday afternoon she was admitted to deal with her continued nausea and stomach pains with the addition of diarrhea and a sharp decrease in eating. No one is quite sure what is going on but she had an early morning ultrasound of her belly that was clear and GI came to assess her this morning and decided that a colonoscopy and endoscopy are in store for her tomorrow morning.
In many ways being back here feels like deja vu; remembering all the tricks and tips although they come slower to me. However, I’ve never been in the hospital with a nearly five year old and that is a new experience. No crib, so many questions and much more prep work goes into procedures. Hmm, how to get lunch when she doesn’t take a nap?
She’s doing really well with her highlights being the wheelchair rides and child life coming to play with her but she found even the ultrasound to be terrifying. She’s seems very blase about surgery tomorrow (she’ll be fully sedated) but I know that tomorrow morning will be a different story.
Noah is hanging in there getting extra time with Dad (which he loved) and a little break from having a sibling (which he loved as well) but he feels bad for Zoe and I think a little jealous as well. We went on a walk today, just the two of us, and he said, “this is just like old times” and “it feels like we’re doing the past again”. Too true but hopefully this time around he will feel differently at the end. We boldly feigned ignorance that he wasn’t allowed in the room and so spent most of the day together as a family; taking walks, doing schoolwork, a little t.v. time, some chocolate cake (thanks Nurse Anna).
I think we’ll be here for awhile, even if an answer to her problem is just waiting for us in the procedure tomorrow. It just doesn’t seem like an easy fix. I spend most of my day indifferent to the general lack of direction and ideas coming from the team (at least shared in front of me) but every so often a small burst of fear flares up when I think of her getting worse, eating less and less with no idea why.
I laid in bed with her tonight staring at the monitors, remembering so many other times I sat watching them. They are strangely comforting to me and in times when I wasn’t sure she would get better they reassured me in their rhythmic hypnotic way that she was still here, still fighting.
A conundrum
Zoe has now felt nauseous for 20 days, had stomach ache for approximately two weeks longer and has been feeling generally not herself (reduced energy) for 6 months. I have no idea how to parent a child in that situation. She has chores and up until the end of last week I continued to require her to do them. I required her to act pretty much normal all the while questioning what I was doing. If Noah was sick he would be free from chores, laying on the couch watching endless t.v. and generally be given a free pass on many things but Noah’s illnesses last roughly 2 days and Zoe’s last much longer. I’m torn between feeling bad for her and also not wanting to create an environment where being sick gets her everything she wants and allows her to be a brat. She’s a little human and so she’s chosen strategic times to use her yuckiness to manipulate and it’s hard to remember that underneath that is a legitimate problem.
I’m trying really hard to be reasonable and rational and pleasant but after 14 straight days of nausea for Zoe, those traits are vanishing. This following stomach ache (pinchy stomach) and muscle aches. Her new medication (we finally switched her main immunosuppressant) along with it’s partner in crime (secondary immunosuppressant) are wreaking havoc on her body. We’ve tried waiting, we’ve tried adding a new medication to manage the symptoms, we’ve tried waiting (again). We’ve tried nearly everything except lowering her dosage. I really want to lower her dosage. I have all my reasons and my rationale for why it is medically appropriate but so far no one has agreed with me and every step of the process is molasses slow. This morning Zoe has complained, no less than 20 times, that she feels sick and I feel ready to throw the mother of all temper tantrums to get my way. Sometimes I really hate being a grown up and having to reign in that desire. One volcanic tantrum would feel oh, so good right now. It would, however, annihilate relationships with her healthcare providers that I have to maintain and foster for the next 13 years. It’s such a delicate balance between advocating and pushing when needed but not too hard and not in the wrong way while hopping on one foot with my tongue just so.
I feel so helpless right now to do anything for her because I’m not driving this train. So much of our lives are determined by someone who doesn’t live inside this home with us. You would think that after nearly 5 years I would be used to the fact that I don’t get to make many decisions for her but I’m not.
Another friend of mine is in the same boat today; waiting for doctors to decide the discomfort (and in her case, pain) of our children warrants action. It’s pull-your-hair-out stuff to sit with. And I just have to believe that God will make a way. He’ll make a way…….He’ll make a way……
