Just so you know....

"You want me to swallow that?!"
Elizabeth is amazing! She swallowed the capsule endoscopy on the first try! The pill is huge (25mm long and 10mm round looking down on the top). It has six LED's and a camera and radio transmitter....pretty amazing stuff. She wore a battery pack attached to 10 leads that were placed on her torso for eight hours and over the next 12 hours she should excrete the pill. We will get results in a few days.

Today was a good day as far as a day in the hospital goes. Liz had another guitar lesson with the music therapist and also was able to see a therapy dog that she has been asking for. Jackson came to visit for over two hours and I was able to take a walk with him, cuddle with him and spend some time kicking his butt in a game of air hockey in the playroom. After school the girls' wonderful teacher brought Kailtin to the hospital so that we could visit for a while. It was so good to be able to see my babies and I know Liz was energized by their visit. She is exhausted from her busy day and fell asleep as soon as our last visitor left the room.

Tomorrow is the deadline Liz gave as her limit to her stay here. Her exact words were "Just! So! You! Know!, Friday I am busting out of this place if we haven't left before then!" Last Saturday it seemed a crazy thought that we would still be here at this point, so I agreed with her. I should not have done that! She begins to cry as soon as she starts to speak about discharge. I don't know when we will be able to leave. Many things can be managed outpatient, but she needs to start eating better and get off of iv fluids. She also needs to prove that she can maintain her weight. Then there is the issue of whether or not they are going to do any immunoglobulin therapy now. She will not be discharged tomorrow....but I don't know how to tell her that.

We have decided to pull her out of school for the next few months. It is the best thing to do due to her decreased immunity (more on this later as labs are still coming in, but she definitely has some kind of immune disease or disorder. We have also learned that her antibodies are attacking her cells; her platelets for example). She asked if she could still have recess if she is at home...silly girl. I have embraced the idea of how lucky I am to have all of this time with her and I am going to make the best of this.

Keep praying for our girl. I am grateful for all of the support and prayer!

Eight Days

It is hard to believe we have been in the hospital for eight days. Liz and I are both homesick and I miss Kate and Jackson so much. Eight days is forever for Liz as she's been in isolation the whole time.

This morning Liz had her colonoscopy and biopsies. How many times I have had to walk away from her in the OR as I watched her start to fall asleep, having to trust that the doctors and nurses would take care of my baby. Walking away from your child when they are sick and vulnerable goes against every bit of a mother's instinct.
While she was in the OR I started to cry for the first time in days. Thinking of how many times I have paced the halls of this hospital is actually unbelievable. When will I stop having to be here with our girl?
Liz did great during the procedures and though her last two OR visits have resulted in a rough recovery, this time was great! She had much less pain and nausea and woke well; kudos to the team in there today. Labs are being expedited and we should have biopsy pathology back tomorrow at about 1:00.

Tonight Liz is very upset..... she is frustrated as she is going through yet another clean out- her fourth this week- (it is best for her to be rid of any stool for tomorrow) which is uncomfortable. She is also terrified at the idea of swallowing the capsule camera tomorrow during the Capsule Endoscopy. She is great at taking pills, but this camera is a BIG pill and she is afraid she will choke. She is going to need her mind-over-matter strength tomorrow morning to get that done.

I am exhausted and now totally distracted, as I just heard that Jackson wet his pants at school today (which he has only done once before....during Liz's last hospitalization), so I am going to keep this post short. Thank you for your prayers!

Update

You would think a person who is stuck in the hospital room all day (and wide awake for most of the night) would have plenty of time to journal a blog entry. That is not the case, though. The hours pass quickly and Liz's needs as well as the constant visits from doctors (she has so many now that it seems as though there is a visit each hour) leave no time.

It feels like too big a task to update all that has been going on over the past couple days. I cannot find words to put it into the right form, so I will simply list what I can. There are a few things, including a specific immune-based disease, that are possible diagnosis for Liz. I have decided to keep quiet about those unknowns until there is a reason to talk about them. At some point and with certain possibilities, it is just too much to talk or worry about unless we have to. I cannot worry about the "possibles or even the "partially positives" anymore. I will drive myself crazy if I do.
*The meeting was good. Walter was able to be present as well and the two of as sat around the huge boardroom table with a room-full of physicians. There was a lot of ego in that room, let me tell you! Ego aside, they treated us with much respect and I was proud of myself (Walt said he was, too and I even got a nod of approval at one time from the biggest Ego there) as I debated, challenged and followed throughout the whole meeting. If I am going to be in this situation, I better do my best, right? And doing my best means not backing down and finding my backbone....even in a room of doctors.
I did fight tears at one point as I sat listening to them all and it struck me that all of the talk, all of the percentages and numbers and counts, all of the acronyms and finger waving and raised voices.....all of it was about Elizabeth. They were all talking about my daughter. It was an in-my-face reminder of how serious this has become.

Walter was a bit discouraged after the meeting, but I was not. He lives this with us, yes, but as he works, I am the one who knows all there is to about Elizabeth and I understand how intimidating and scary the meeting was for him.
I left firmly believing the following... these doctors, whether from truly caring about Elizabeth or from intrigue alone, are invested in her case. I know enough to understand that "rare" and "complex" and "uncharted territory" equals interest and a desire to solve a problem for these physicians.

So, in short, these are things that were talked about or have happened:
* Yet another Colonoscopy with biopsies tomorrow at 2:00pm
* She is yellow. Not highlighter yellow, but definitely a soft hue of yellow. Her liver counts from late yesterday afternoon look fine, though. She will have counts again tomorrow morning. I do not like yellow :(
* Thursday morning she will swallow a tiny camera and for 8 hours it will travel her body while taking snapshots of her inside. There is an area in the stomach that cannot be seen by endoscopy or colonoscopy so this "swallow endoscopy" will allow us to see those areas.
*Her immune system is a mess. There are many lab results that have shown many abnormalities. Some are very concerning, actually. It is confusing to understand and even more confusing to explain. I will explain more later when we have even more tests back. Vaguely, she is IgG and IgA deficient. Her cells are not functioning properly. Her natural killer cells are low (you want these higher as they help fight infection). Her NBT test was abnormal.
The next couple days will reveal what they need to decide how they will treat her immune deficiencies. Kaitlin will most likely have blood work done too as the doctors are using her as a controller in some of their testing. As identical twins, there are fascinated that Kate hasn't presented as Liz has.
* UCLA has been called again and fecal transplant is yet again an option. Many of you have asked why this hasn't been done yet, especially since it has been in the News so often lately. I share your frustration, but I assure you there are reasons why this option hasn't been used yet. As much of a miracle procedure it sounds like-and has been for the few in the world who have had it done- it is major. Liz is unique too because of her immunity and there is extra concern about how her body would react to a donor's bacterias.

Please, please, please know how important your support and prayers and kindness is to how we face this all.

Michael's Monday!

Yesterday, Liz threw a fit! She packed her suitcase, refused all meds and breathing treatments, tried calling people for a ride, and yelled enough I was sure we would draw a crowd. She had decided she was done with the hospital and she was determined to escape.
She did finally calm down and her things were unpacked, though there have been many tears for home since. We are still in and I have no idea when she will be discharged.


She is super disappointed to know she will miss the special event tomorrow night! I do not want her to understand just how much her illness financially effects us; I will not have her share in that burden in any way, so I have not told her that tomorrow is a fund raiser. In fact, she has not seen the two news articles about the evening because I don't want her to read about the medical bills right now. She instead knows that tomorrow is a special night where people who care about her- about us- will come together. She knows this....and she is sad to know she will miss it. I will be there as long as she is well enough for me to leave her at the hospital.

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We have been so touched by how many people have embraced the event and we look forward to seeing you there!

Licking wounds

Tonight I could not breathe. I felt trapped, I wanted to run, I could not force my tears to stay away and I even had a moment of feeling like I wanted to quit. Mostly though, I literally could not breathe.

Elizabeth has been privy to 99% of conversations about her care. It is her body afterall, and with some issues we know will stick with her a lifetime, it has always been my belief that she needs to have an understanding of her body. I also believe it gives her some kind of power. So, I rarely ask her to leave the room when a doctor is speaking to me about her. Most often she goes to her "zone" and ignores us, taking in bits of what she chooses to and later (maybe days or weeks) may ask me about something she heard talked about.

Tonight I had a long conversation with a doctor, in Liz's hospital room, that got very heated and I wish she had not been present for. It left me without breath and feeling caged. I can't go into detail about it now because it is just so long and upsetting, and that alone is proof of why I wish my Liz had not witnessed it.

The tears and pain the conversation provoked though, actually gave way to a sweet time with my girl. After I composed myself and time had passed, Liz asked if I would wash her hair. I can't put it into words, but the act of washing her hair at the sink and then holding her in my lap afterwards was so comforting to me. It made me think of an animal who, after being hurt, is licked clean by its mother. On top of the ordeal with the doctor, Liz and I had already had a rough day. In the early afternoon Liz decided she was done with all of this and all of us. She literally packed her suitcase, refused medications and care and yelled, hit and threatened to pull her iv out. For hours she threw a fit until she finally collapsed and fell asleep. Obviously, "licking the wounds" was reversed as I was washing her hair, but it was theraputic. As I sat brushing through her beautiful locks, she leaned into me and said "Mama, I am sorry about earlier today and for hitting you." I answered "I know you are. I am sorry you had to hear my conversation with the doctor." She then said "I know you are"
I feel so honored to be able to be the one caring for my child when she needs me most. The simple act helped to remind me why I fight so hard for her; why I will challenge the doctors and even battle them. They have degrees and their white coats and knowledge that I do not..... but I am a mom; I am Elizabeth Claire's mom and I will fight for her. I have an instinct that will protect her and allow me to stand strong and firm when one might expect me to cower or give in. I gave her life and I would give my life for her.... nothing is more powerful than that and nothing will keep her more safe than that.

Torn

I am torn. In many different ways today, I am just torn.

It is awful to feel like I am being pulled in different directions. Kaitlin and Jackson have been crying for me, pleading for me to come home or at least offer the promise of a date we will get out of here. I cannot do either. Kate tries to hide her tears because her maturity now allows her to know that her tears mean I will feel torn and she wants to spare me. So, I encourage her to cry to me if she must, all the while feeling her pain as she does. The tears are more than just missing me, they represent the change in routine that Kate especially thrives on as part of her very being. They represent the worry they have for their sister, something we strive hard to not allow to happen, but as the kids get older, they understand more of what goes on. It is so important to me that Kate and Jackson not carry the burden of their sister's illnesses or any feeling of responsibility in her care. They are kids after all and I won't allow them to feel a weight of this....and yet, it does creep in no matter how much I wish it would not. When you love someone, when you share your life with a sibling, you feel their happiness and you feel their pain. That is life and I cannot protect them from it.

Elizabeth has these doctors running in circles. In my mind, figuratively they are scattering mice, bumping into each other as they chase the cheese. One says go left and another says go right and no one ever gets the darn piece of cheese! Even the mice are torn in differed directions.

After 7 days of a 14 day course of antibiotic for the CDiff, she has not had change so we are at a point where we need to change meds. Remember, there are only a few meds used to treat CDifficile and since April, only one has had any effect.....and that one is now not treating it. We face the decision of going the full course and taking it for another 7 days to meet the 14 day course, or jumping ship with it because it hasn't worked yet and we don't want to use it if it is not working, mainly because we don't want her body building an immunity to the drug in case we need to ever use it again. Confusing, I know. I give the final "okay" for these drugs and that decision alone leaves me feeling torn.

Within the next couple days a BIG meeting will take place. The case manager is putting together a meeting where all of Liz's doctors- pediatricians, Infectious Disease team, GI team, Pulmonary, Immunology, Hematology, Surgery- will all be there. Lookey-loos will be there too to see "CDiff girl". We are waiting for a few doctors to get back from a Cystic Fibrosis conference so that they can attend the meeting.

It was also talked about today that it may come to us transferring her to UCLA (Walt gave me a look that I knew meant he would rather pedal her down the 405 freeway on a bike than pay for an ambulance ride, but he refrained knowing his sarcasm is enough to push me over the edge right now). That too will be decided in the next few days.

Please, please pray for Liz! I covet your prayer and the prayers of strangers. I will ever stop asking for prayer on the behalf of my Lulu.

Simply, overwhelmingly torn.

Article

Below is the link to a article written about our family for the Grunion Gazette. A few quotes are altered a bit, but the intention of the writer was from a good place. We are grateful to Jamie and Kemery for all of their work on the fundraiser!!


http://www.gazettes.com/to_do/restaurant-reaches-out-for-suffering-youngster/article_836598dc-0596-11e1-96da-001cc4c002e0.html